Uninvisible Pod with Lauren Freedman: Recent Episodes
Lauren Freedman
A podcast about invisible conditions and chronic invisible illness, featuring interviews with survivors, their loved ones, advocates, and experts in varied healing modalities, from medical to holistic. Hosted by Lauren Freedman, a voice actor, writer, and activist, who lives with Hashimoto’s disease and sleep disorders, Uninvisible uncovers real stories of survival and humanity – complete with laughter. In truth and with candor, we offer solutions – and challenge the world to change.
Hi everyone,
If you follow me on social media, you might have seen my recent post where I shared one of my absolute favorite stress relief techniques: the 4-7-8 breathing technique. This simple yet powerful practice, developed by Dr. Andrew Weil, has been a lifesaver for me in moments of stress. While I’m not usually one to advocate for over-regulating breath, this technique stood out for its immediate calming effect, and I’ve been using it ever since I was introduced to it.
For those of you who haven’t tried it yet, the 4-7-8 technique is super accessible. Here’s a quick breakdown:
1. Exhale completely through your mouth, making a whoosh sound.
2. Inhale quietly through your nose for a count of 4.
3. Hold your breath for a count of 7.
4. Exhale completely through your mouth, with a whoosh sound and rounded lips, for a count of 8.
Dr. Weil recommends starting with four breath cycles, then gradually increasing to eight cycles over time, practicing twice a day for the best results. You can read more about it in my recent Instagram post here.
Why Stress Relief Matters When Living with Chronic Illness
Stress has a profound impact on the body, particularly for those of us living with chronic illness. If you’ve been following my journey, you know that learning how to manage stress has been a huge part of my healing. Stress activates the body’s sympathetic nervous system, triggering the fight-or-flight response, which can increase inflammation, worsen fatigue, and make symptoms of chronic illness more severe.
That’s why I’m so excited to share this practice and many others at our upcoming Masterclass on Overcoming Chronic Illness Burnout, which I’m co-hosting with Jayci Gibbs, a Millennial Burnout Coach, on October 30th at 4 p.m. PT / 7 p.m. ET. This masterclass is designed to provide both immediate stress-relief tools and long-term strategies to help you better manage the ongoing pressure that can come with chronic conditions.
What to Expect from the Masterclass
In this 1-hour masterclass, we’re going to cover the intersection of chronic stress, burnout, and chronic illness in depth. Here’s a sneak peek of what you can expect:
• Understanding the Neuroscience of Stress: We’ll walk you through how stress affects the nervous system, especially in individuals with chronic illness. This will help you better understand the stress cycle and how it impacts your body physically, emotionally, and mentally.
• Practical Tools for Stress Management: You’ll learn a variety of accessible techniques—including the 4-7-8 breathing exercise—that can be used to reduce stress in both the short and long term. These include breathwork, meditation, and other mindfulness practices.
• Building Nervous System Resilience: Nervous system regulation is key to managing chronic stress and reducing symptom burden. We’ll show you how to strengthen your nervous system over time, making it more resilient to stressors.
• Creating Space for Healing: Whether it’s through stress management, setting boundaries, or making space for rest, we’ll explore how to prioritize yourself and create a healthier relationship with your body and mind.
• Increased Confidence: One of the outcomes of this masterclass is that you’ll walk away feeling more confident in using these stress reduction strategies. Techniques like the 4-7-8 breath can feel intimidating at first, but with hands-on guidance and practice, you’ll feel empowered to integrate them into your daily life.
Who This Masterclass is For
This masterclass is designed for:
• Anyone living with chronic illness who feels burnt out, overwhelmed, or stuck in a stress cycle.
• Individuals seeking practical tools to reduce stress and inflammation, and improve overall energy levels.
• People curious about nervous system regulation and how it can help manage chronic illness symptoms.
• Those looking for accessible, easy-to-incorporate techniques for both immediate stress relief and long-term resilience.
• Anyone wanting to create more space for healing by learning how to balance stress management with self-care and rest.
Tickets are still $25 until October 25th—grab yours now before the price goes up! The link is here and below, and I encourage you to reserve your spot ASAP before they’re all gone.
I can’t wait to see you there and share these amazing practices with you. If you’ve ever been curious about how to manage burnout and chronic illness in a holistic way, this is the perfect opportunity to learn and grow in a supportive community. Feel free to reply to this email if you have any questions!
With love,
Lauren x
TICKETS: https://www.eventbrite.com/e/overcoming-chronic-illness-burnout-masterclass-registration-1041689450187?aff=ebdssbdestsearch
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com
Overview
Last episode as of Dec 2023
Emily Ana Levy is a distinguished social impact entrepreneur, renowned patient advocate, healthcare Key Opinion Leader, and acclaimed international public speaker. Emily's journey led her to co-found Mighty Well in 2016. It’s a startup driven by her personal experiences as a patient grappling with chronic neurological Lyme disease and autoimmune conditions, along with the challenges of managing vascular access devices. Mighty Well's direct-to-patient brand offers innovative medical products and comprehensive digital learning on vascular access, empowering patients to confidently navigate their health journey. With an unwavering commitment, Levy and her team have successfully launched seven adaptive medical products, notably the Class 1 FDA-registered PICCPerfect® Pro. Emily and Mighty Well's impact has been featured across various media outlets such as The New York Times, The Wall Street Journal, Who What Wear, The Boston Globe, PBS, Forbes, and more. In 2021, inspired by her transformative healing journey in the Amazon and stepping into her gifts as a seer, medium, and deathwalker, Emily established Hamsa Healing. In her practice, she is dedicated to facilitating clients in experiencing profound healing practices from the Amazon and the spiritual realm — practices that played a vital role in saving her life and putting her chronic illnesses into remission. Currently residing in Providence, the heart of the Ocean State of Rhode Island, Emily finds solace in cold water plunges that invigorate her senses and ground her in the present moment. She cherishes moments at home with her two adopted poodles, a warm blanket, and a cup of tea; valuing introspection over bustling networking events. Emily remains devoted to self-discovery, eager to share her insights with folks who, like her, have felt marginalized within a business and medical system that often overlooks their needs for visibility, understanding, and validation. What started as an entrepreneurial journey to 'turn sickness into strength' has now become one of learning strength from sickness.
Key Links
Mighty Well
Dr. Casey Kelley on UP - Ep 118
Takeaway
Tune in as Emily shares:
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that she’d blocked out a memory of being bitten by a tick at the age of six; she was bitten again at the age of 12, alongside having confirmed EBV
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what her initial symptoms were like
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how she was overlooked because of her age and gender — and initially put on birth control to control her “hormones”
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that she finally found a Lyme-literate NP in her home state when in college — and received the diagnosis of Lyme and tick-borne illnesses at the age of 19
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her additional diagnoses: POTS/dysautonomia, Hashimoto’s disease, CIDP (chronic inflammatory demyelinating neuropathy), C-PTSD, and Gilbert’s syndrome
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that she went to see Dr. Casey Kelley after hearing her episode of the show!
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how her lived experience informs the creation of adaptive devices and wearables for Mighty Well
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how she was able to embody her identity as a disabled person — coming from a family of athletes
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that she had a lot of Lyme support in college, but also felt “othered” in the sense that she had to advocate for her health for the first time
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what a typical day was like for her before remission
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her rumination on the invisibility of her diagnoses — and their few visible signifiers, which included her PICC line and chest port, as well as her occasional use of a cane
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how exhausting it can be to tell people your life story when you live with invisible illness and have to provide validation to others
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the epidemic affecting women in healthcare: acute infections, especially those presenting with multiple and varied symptoms — and how important it is to listen to and include women, both in treatment and in research
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how her family background in textiles informed the Mighty Well product line
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her advice for fellow spoonies and entrepreneurs
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why living near the water is so important for her
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that she has trained her dog, Olive, as a medical alert service animal
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her belief that ketamine therapy saved her life, with regard to the diagnosis of C-PTSD
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her endorsement of plant medicines and herbs, and why she has moved in that direction where her ongoing treatment is concerned
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com
Overview
Hanah Salas is the magic mama of three littles; an energy worker and maker, she is the founder of the first and only CBD wellness company that offers sliding scale pricing on its goods: Open Apothecary/Magic Mama Co.! She started consciously making herbal remedies when she was pregnant with her first child, out of the need to use healthy, natural, safe products for her whole family. Then her mom was diagnosed with Lyme disease and fibromyalgia, while at the same time, one of her twin daughters was born with a heart defect. Her intentions and need to create stronger, more magical remedies was born. She started infusing her products with more love; Reiki, prayers, and high vibrations to aid in healing. Her goal now is to make these products more accessible and affordable. The more she sells on her platform, the more she is able to donate products and services to those in need who cannot afford it.
Key links mentioned in this episode:
Open Apothecary/Magic Mama Co.
Buenqamino/Christina Kantzavelos on UP (Episode 119)
Brujitxs del Barrio Collective
@magicmamaco on Instagram
@openapothecary on Instagram
Lauren’s favorite products:
CBD Salve 150mg
CBD 50mg Pain Bath Bomb
Tune in as Hanah shares:
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how and why she first started creating natural products
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that her mom likely contracted Lyme disease as a child, and was diagnosed with late-stage Lyme when Hanah herself was an adult
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that the one natural remedy that gave her mom any relief from the chronic pain she experienced was cannabis
-
how complex it was for her mother to get her Lyme diagnosis
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that her mom had over 50 diagnoses and was on multiple prescription drugs before being diagnosed with Lyme
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how her mom struggled to receive pain medication — and later ended up with opioid addiction
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how CBD helped Hanah’s mom, and also contributed to Hanah’s product line
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how Hanah has built her business with ethics at the forefront — giving away certain plant medicines to those in need, as well as teaching Reiki and sharing her expertise for free
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how her mom’s treatments hit her family financially — and why it’s so important for her that her products be accessible
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why she believes that healing — and access to said healing — are our birthrights
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what Reiki is, and how accessible it can be as a healing modality
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why she also began to access the Akashic records, and how it helped with her daughter’s healing
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why she prioritizes BIPOC, indigenous, and LGBTQIA+ clients in her business
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why she formed a collective to support communities most impacted by historical underrepresentation and marginalization in her healing work
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the importance of addressing grief and trauma in healing work
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com
Overview
At the age of 16, doctors diagnosed Carlos Alvarez as completely blind in his right eye; the sight in his left eye had deteriorated to 73% as a result of congenital glaucoma. When Carlos was 19 years old, he went through eye surgery — but the operation was not successful. He lost all remaining sight, leaving him with permanent sight loss. A person of deep faith, he constantly reframed this experience of loss into one of abundance, telling himself: “sometimes God removes something you never thought you'd lose, to provide you with something you never thought you'd have.” Before losing his sight, Carlos had responded to school bullying by learning Brazilian Jiu Jitsu (known as BJJ by those who practice the sport), a martial art with similarities to Judo. Despite the onset of his disability, and at the encouragement of his cousin, he continued to learn BJJ…and now competes (frequently winning!) as a black belt. He also became passionate about teaching others living with sight loss, helping them improve their quality of life and confidence in their abilities. He now provides BJJ lessons to the blind community through Gama Filho Martial Arts in Miami, Florida, and reminds us that he knows first-hand what it's like to live with a feeling of defenselessness after losing one’s sight; with a fear of falling, getting lost, or the vulnerability of potentially being robbed, struggling to find employment, or being abandoned. In his own way, Carlos has given back to his community through his teaching of the Blind Warriors, and inspires others to take their destinies into their own hands, no matter what level of ability they start from.
Key Links
Key links mentioned in this episode:
Carlos Alvarez
Gama Filho Martial Arts
Takeaway
Tune in as Carlos shares:
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that despite vision problems growing up, he didn’t know he had glaucoma until he was 16 years old
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the day he completely lost vision in his right eye — and how this led to the discovery that he had been born with congenital glaucoma
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his emotional reaction to his diagnosis
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that despite his deep faith, he questioned it when he was first diagnosed
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how martial arts helped him to regain his happiness and confidence
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why Brazilian Jiu Jitsu (BJJ) is particularly adaptable to sight loss: there is no striking in the art, but it’s more of a grappling experience — and, as Carlos tells us, “your hands become your eyes”
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that disability care in his home country of Ecuador is not widely distributed
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the stigma and misconceptions about blindness that he strives to shift in his work
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the importance of independence to him, as a person living with sight loss
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how he is leveraging his skill in BJJ to help others with visual impairment to face their fears
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how his work has taught him to break through his own limited mindset
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that he has a wonderful guide dog to aid him in his independence
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instances of prejudice that he’s encountered when out with his service dog
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his hope for the future of inclusion in his sport
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com
CW/TW: this episode includes discussion of violence, both physical and gun-related, as well as in-depth conversations about abuse, trauma, suicide, drugs, and alcohol addiction. It also includes mention of adoption and body weight, and contains some strong language.
Overview
Michael was born to a hyper-abusive, drug-addicted mother who cut his finger off at four years old…lived with what he calls “a step-father you pray you never have,” and was frequently houseless and living in poverty. A member of the Mormon Church, he was also molested by a fellow parishioner. At the age of 13, he ended up in the custody of a racist grandmother who pushed him into an identity crisis — and quickly turned to drugs and alcohol to survive continuing abuse. “Between the guns, drugs, crime, and poverty…I was facing life as just another statistic,” he shares. Despite being diagnosed with multiple learning disabilities and not graduating high school on time, he found success in corporate America in his early 20s. But the success only made things worse: Michael found himself “morbidly obese,” high and drunk daily, experiencing debilitating panic attacks, rage, and even attempting suicide. And then, he had his Mirror Moment: he found his inner power and chose to do whatever it took to work through his childhood trauma. He says that this is when his life really began. Michael is now the author of the best-selling book Think Unbroken and is a coach, mentor, and educator for adult survivors of child abuse. He spends his time helping other survivors get out of "The Vortex" to become the hero of their own story and take their lives back. Michael hosts the Think Unbroken podcast, teaches at Think Unbroken Academy, and is on a mission to create positive change in the world.
Key Links
Key links mentioned in this episode:
Think Unbroken
Michael’s book
Michael’s podcast
Takeaway
Tune in as Michael shares:
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that he first got high at 12 years old
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that at 15, he was kicked out of school and put into a “last chance” education program
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that his family and friends — and he himself — had been to prison and arrested
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his rock bottom moment: putting a gun in his mouth — and not pulling the trigger
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how his Mirror Moment took shape: that he realized he was living the stories that others had told him about himself, and moved out of his breakdown
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why he got serious about therapy and healing his trauma — both personal and generational
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how he got into self-development and writing
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that as he sees it, there are two kinds of people: those who are kind to themselves, and those who aren’t
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how to shift the pendulum from thought and action into self-actualization
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that the idea of healing all starts with action — and making the choice to lead a more fruitful life
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why he doesn’t believe that compassion and forgiveness are mutually exclusive — and why he believes forgiveness needs to be earned
-
why it’s important for him to lead with what he can actually control in his life each day
-
what “self-care” looks like for him
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that he lives with an autoimmune condition (postural orthostatic tachycardia syndrome, or POTS), and has to be mindful of it as he moves through the day
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that he has also experienced SIBO (small intestinal bacterial overgrowth), which at one stage contributed to intense brain fog
-
how physical and mental health are intertwined, and how he counteracts inflammation and stress in his body to be his best
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how he’s found freedom in releasing himself from what others think of him
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what authenticity means to him
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that you are not responsible for the things that happened to you — but you have to acknowledge that they happened
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the importance of community, connection, and commitment
Uninvisible Pod is a listener-supported publication. To receive new posts and support my work, consider becoming a paid subscriber.
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com
Overview
Gigi Robinson: if you don’t already know her, then welcome to the party! From making history as a finalist in the Sports Illustrated Swim Search, to her advocacy in the chronic illness and body positivity spheres, all the way to NFT research and navigating life as a small business owner — she truly does it all. With features in Bustle, Business Insider, Forbes, and Vogue Business, Gigi combines beauty and brains as GenZ’s forefront thought leader in the content creation space. Having been diagnosed with Ehlers Danlos Syndrome (EDS) at the age of 11 (and more recently diagnosed with endometriosis), Gigi knows how hard it is to be different. However, her lively spirit, positive demeanor, and elevated work ethic have made her and her Spotify Live Podcast “Everything You Need Is Within” an instant hit. Listeners of her podcast have the opportunity to learn how to become their own advocates, challenge the status quo, and dominate in professional settings. When she is not working on her podcast or posing for national campaigns, Gigi can be found working on her newsletter, “The Creator Chronicles.” Her latest project is aimed at documenting life as a young woman with a chronic illness and unlocking behind-the-scenes tips and tricks for rising content creators. With so much more on the horizon including an upcoming speaking tour, creative production for brands, advising brands and a recently-released book, A Kid’s Book About Chronic Illness, Gigi is just getting started.
Key Links
Key links mentioned in this episode:
Gigi on Insta
Gigi’s podcast
Gigi’s website
Gigi’s book
Gigi in SI Swim
WEGO Health
Calm App
Oura Ring
Takeaway
Tune in as Gigi shares:
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how she was originally diagnosed with EDS, and how it’s shaped her life
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the role that therapy has played in her healing
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how and why she developed disordered eating behaviors
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how her EDS diagnosis dashed her hopes of pursuing a career as a competitive swimmer
-
a discussion about the fear that comes up for her around exercise: both because she fears hurting herself (either in the exercise itself, or during recovery), but also because of her history of body dysmorphia
-
how body image ties into the diagnosis of a chronic condition — and how it inspired her to get into the public discussion of body positivity
-
some of the holistic practices that have soothed her nervous system and helped her reduce stress
-
what it means to be an influencer with chronic illness — and what it might mean if remission occurs
-
why it takes time to learn how to communicate with your loved ones about what you need for living well with a chronic condition
-
how living with a chronic condition directly impacts mental health
-
what it’s been like for her to navigate the pressures of being a full-time Master’s student with the realities of living with a chronic condition — and what the accommodations process was like
-
what her career path has looked like as a result of her physical needs
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why she loves water aerobics
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what practices she invests in daily for her physical and mental health
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a gut check on evolution and acceptance
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why it’s important to track your symptoms
Transcript
Transcript coming soon!
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com
Overview
Jared Walker founded Dollar For in 2012 in Portland, Oregon. Now a national non-profit crushing medical bills and making charity care known, easy, and fair, the organization was born out of a desire to help folks in medical crisis after Jared witnessed his own family's experience with — you guessed it — crushing medical debt. Dollar For eliminates said medical debt by empowering patients and advocating on their behalf, because, as they believe: a medical crisis should not lead to a financial crisis. The organization helps patients check if they are eligible for financial assistance at their hospital, prepares and submits applications, and eliminates those medical bills — for free, no strings attached. Jared is on a mission to pulverize as many medical bills as he can while educating patients and empowering patient advocates.
Key Links
Key links mentioned in this episode:
Dollar For
TikTok
Takeaway
Tune in as Jared shares:
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why he founded Dollar For in 2012, after his own family underwent crushing medical debt
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why he thinks it’s truly ridiculous that medical crises in America usually also bring financial crises along with them — and how this doesn’t serve patients at all
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how he learned about charity care programs (enforceable as a result of the adoption of the Affordable Care Act, or ACA)
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what charity care is — and why enforcing this program can save patients MILLIONS
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how medical debt can negatively impact our credit and force many into bankruptcy
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why he took to social media to spread the message about charity care
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why he thinks charity care flew under the radar for so long — and why it continues to do so
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why federal minimum income thresholds are different from state-to-state, and how this can affect access to charity care
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what the federal threshold limit is on the use of charity care (how much time patients have to utilize this bill payment option — 240 days!)
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what accountability looks like between state and federal agencies and hospitals — and how Dollar For often stands in as an intermediary
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that putting hospitals on blast on social media has often been a more effective tool to enforce charity care than letters from legal sources
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why social media patient activism makes Jared hopeful for the future
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his estimate that 30% of Americans would qualify for charity care based on income alone
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where Dollar For’s bill forgiveness tally was at in April of 2022: $16 million (as of this episode release, they’ve surpassed $28 million!)
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how he works to match his volunteers’ strengths with patient needs
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the demographics of the patients Dollar For works with: largely the elderly, and individuals who speak English as a second language
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how so many hospitals game the system to hide charity care from patients in need
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Jared’s take on medical PTSD — and how medical debt contributes to the experience
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how Jared sees the future of healthcare costs in America — and that the solution is to empower patients
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practical tips for asking hospitals to consider your bill for forgiveness under charity care: write a letter!
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Jared’s advice on NOT becoming complacent about large medical bills as they arrive
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why NOT to put your hospital bill on a credit card
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that if you’ve paid bills on a payment plan and later find out your bill was eligible for charity care — you are eligible for a FULL REFUND
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how Dollar For was first invited to the White House by Vice President Kamala Harris (they continue to be invited to this day, and are working with stakeholders to enforce and create awareness of charity care programs on a broader level)
Sponsors
This episode is sponsored by Gena Chieco Coaching. Get 10% off Executive & Life Coaching using code INVISIBLE! With a background in psychology and law, Gena inspires clients to step into their best lives by helping them access their inner strengths, clear the cobwebs holding them back, and cultivate a dream-big, growth mindset.
Transcript
Coming soon!
This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com
Izabella Wentz, PharmD, FASCP, is an internationally acclaimed thyroid specialist and a licensed pharmacist who has dedicated her career to addressing the root causes of autoimmune thyroid disease after being diagnosed with Hashimoto’s thyroiditis in 2009. She is the author of three books on Hashimoto’s: Hashimoto’s Thyroiditis Lifestyle Interventions for Finding and Treating the Root Cause, Hashimoto’s Food Pharmacology, and Hashimoto’s Protocol, which became a #1 New York Times bestseller. Her latest book, Adrenal Transformation Protocol, was released on April 18th, 2023. The book focuses on resetting the body’s stress response through targeted safety signals and features a 4-week program that has already helped over 3,500 individuals. The program has an impressive success rate, with over 80% of participants improving their brain fog, fatigue, anxiety, irritability, sleep issues, and libido. Dr. Wentz currently lives in Austin and Los Angeles with her husband, Michael, and their son, Dimitry.
Tune in as Dr. Wentz shares:
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how she became interested in thyroid health
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what symptoms she experienced when she was diagnosed with Hashimoto’s
-
how she applied her pharmacological knowledge to reverse her own Hashimoto’s
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how lifestyle changes (especially nutrition shifts) supported her healing
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how the concept of adrenal dysfunction became a new focus for her — and allowed her to reverse sleep and anxiety issues
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that if you have a thyroid issue, you’re likely also experiencing adrenal dysfunction
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what adrenal dysfunction means: that your body is stuck in a chronic stress response
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what a cortisol rollercoaster feels like
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how ME/CFS and fibromyalgia patients can also experience adrenal dysfunction
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why the adrenal response to stress makes sense biologically — even if it doesn’t feel like it’s serving us
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where the term “adrenal dysfunction” came from — and why it’s an oh so real biological response, despite the naysayers
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why so many people who identify as female live with adrenal dysfunction
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why it’s so important to balance our blood sugars and eat more protein in order to begin to treat adrenal dysfunction
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the success rates of her Adrenal Transformation Protocol, and how it works
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suggestions for supplementation (which should always be reviewed with your MD!)
Key links mentioned in this episode:
The Thyroid Pharmacist
Books
This is a public episode. If you’d like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com/subscribe
Chris Armstrong, PhD was first introduced to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) through research into metabolomics at the University of Melbourne, Australia. As he delved deeper into his work, he discovered its connection to ME/CFS patients, and empathized so much with their plight – and the lack of resources, funding, and research available to both patients and clinicians – that he made it his mission to continue research in this field in the hope of finding a cure. Since publishing his first ME/CFS metabolomics study in 2015, he has continued research into the disease, spurred on by patients whose stories have moved him. As the Open Medicine Foundation’s Science Liaison, Chris works on collaborative studies with their partner organizations and helps to translate scientific language for the public. He is also a Visiting Scholar at Stanford University.
Key links mentioned in this episode:
Open Medicine Foundation
OMF on Facebook
OMF on Twitter
OMF on Instagram
Tune in as Chris shares...
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how he got involved in ME/CFS research
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his main area of expertise: metabolomics
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that ME/CFS outbreaks can be traced back as far as the mid-19thC, with symptoms commonly related to significant concerns with fatigue, sleep, pain, brain fog, and a 50% loss of general function
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a description of PEM – post-exertional malaise – which is the main component of ME/CFS
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that there are up to 50 symptoms associated with ME/CFS, but the main five are: PEM, fatigue, unrefreshing sleep, cognitive impairment, and pain
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that ME/CFS is highly comorbid with fibromyalgia and other invisible illnesses
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that ME/CFS was originally described as a flu- or polio-like illness; and was first properly explained by the Ramsay definition and given the moniker of “Myalgic Encephalomyelitis”
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that patients need to have ME/CFS for 6+ months in order to receive a diagnosis
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one of the major schools of thought with regard to ME/CFS: that it stems from a dysfunction of stress response in the body; it’s possible, however, that bacteria and other pathogens may also play a role in onset
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that 1 in 200-300 people has ME/CFS
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that ME/CFS is NOT categorized as a rare disease; but it’s treated by the medical community as such – creating stigma through lack of research and understanding
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that ME/CFS has been commonly misdiagnosed as a form of hysteria – both in the past and in the present
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that very few clinicians dig in deep enough with their patients in order to give them an ME/CFS diagnosis – but that burden is not just on doctors, as diagnostics and treatment guidelines need to be standardized in order to support their work
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that the Open Medicine Foundationwas built to provide effective treatments for ME/CFS patients
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that meeting patients has inspired him in his work, even from the very beginning
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the desperate need for funding for continued research into ME/CFS
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the politics of funding medical research
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that ME/CFS is often considered to be more a psychological than a physiological illness
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that the National Institutes of Health(NIH) has been more receptive than some Aussie governing bodies when it comes to research into ME/CFS
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the biggest bright spot in ME/CFS: the momentum of funding for research
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OMF’s collaborative research initiatives with Harvard, Stanford, and others
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that ME/CFS could be a collection of several diseases, and not one disease in and of itself
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the importance of specifics in diagnostics
-
why medicine needs to be patient-centered
-
the importance of pacing in order to avoid a crash related to PEM
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Andrew Gurza is an award winning Disability Awareness Consultant and the Chief Disability Officer and Co-founder of Bump’n, a sex toy company for and by disabled people. Andrew uses they/he pronouns and identifies proudly as disabled. Their work has been featured on BBC, CBC, Daily Xtra, Gay Times UK, Huffington Post, The Advocate, Everyday Feminism, Mashable, Out.com, and several anthologies. He was the subject of an award-winning National Film Board of Canada Documentary, Picture This. Andrew has guested on a number of podcasts, including Dan Savage’s Savage Love and Cameron Esposito’s Queery. He has spoken all over the world on sex, disability and what it means to be a Queer Cripple. He is also the host of Disability After Dark: The Podcast Shining a Bright Light on Disability Stories, which won a Canadian Podcast Award in 2021, was a Queerty Award nominee, and was chosen as an Honoree at the 2020 Webby Awards. The show is available on all platforms. Andrew is also the creator of the viral hashtag #DisabledPeopleAreHot. You can find out more about Andrew by going to www.andrewgurza.com and connecting via social media @andrewgurza_.
Tune in as Andrew shares:
- how they were diagnosed with cerebral palsy (CP) at the age of one and a half
- their more recent diagnosis of IBS, and how it has presented its own challenges
- how COVID has affected their sex life, and why they hire sex workers
- where they can see room for disability discourse to grow
- how they emotionally process ableism from day-to-day
- the nuances of caregiving, and how bad management can lead to dehumanizing experiences for patients
- how care management can be improved from the top-down
- how they have cultivated their mindset — and how their #1 advocate, their mom, was key in encouraging them to develop a thick skin and a sense of humor
- a nuanced conversation about accessibility — and why it’s more difficult for disabled creators to create accessible content, even if we’d like to
- how we can work to get out of the public health crisis of bias in healthcare: by hiring those of us who are historically excluded to positions of power, to reshape the system from the top-down
- why and how they were inspired to create Bump’n — the world’s first disability-driven sex toy
Dailyn Santana is a first-generation Cuban-American actress, keynote speaker, spoken word poet, and mental health advocate. Her work focuses on eradicating mental health stigma and her personal experience of living with bipolar 1 disorder, depression, and anxiety. Her mission is to be an example that those living with mental illness CAN live a happy, fulfilling life. She believes that living in your truth is the most powerful tool you can have, and performs her spoken word poetry at events and schools/universities across the country. Her work has been featured on or at The Dr. Oz Show, ALL DEF Poetry, Nuyorican Poets Cafe, Swaay Magazine, I and I Outfitters, We All Grow Latina, and Spiritú, and she has collaborated with Mitú, the BeVocal SpeakUp for Mental Health initiative, BeRemarkable Foundation, The Womens Empowerment Network, the American Foundation for Suicide Prevention, and the National Alliance for Mental Illness.
Tune in as Dailyn shares:
- when she first experienced mania and psychosis — but that she lived without diagnosis for at least a decade
- how she was haunted by stigma and shame from the early days of her diagnosis
- how her diagnosis affected her relationship to her creative outlet: poetry
- the role her cultural background played in her relationship to her diagnosis and care
- why she came out of her “bipolar closet”
- how she interviews potential practitioners, and her tips for others looking for a new therapist
- why her diagnosis doesn’t define her
- how she became a mental health advocate
- what a “warm line” is, and how helpful it can be (see the links in show notes for some directories!)
- why asking for help is a sign of strength
Phoebe Lapine is a food and health writer, gluten-free chef, culinary instructor, recipe developer, wellness blogger, Hashimoto's advocate and speaker, and the voice behind the award-winning blog Feed Me Phoebe. Named by Women’s Health Magazine as the top nutrition read of 2017, Phoebe’s debut memoir, The Wellness Project, chronicles her journey with the autoimmune disease, Hashimoto’s thyroiditis. She is the host of the SIBO Made Simple podcast and author of the new book by the same name which helps those newly diagnosed or chronically fighting small intestinal bacterial overgrowth. Phoebe’s work has appeared in Food & Wine, Marie Claire, SELF, Glamour, Cosmopolitan and Mind Body Green, who named her one of 100 Women to Watch in Wellness. She was born and raised in NYC — where she continues to live and eat.
Tune in as Phoebe shares:
- how she was first diagnosed with Hashimoto’s thyroiditis
- how her health has impacted her relationship with food
- how much work it takes to be well, especially when one is impacted by chronic illness
- what SIBO is, and how she was diagnosed
- how the symptoms of SIBO can manifest in the body
- about the state of SIBO research and clinical practice
- what it was like to humble herself with her own advice after writing The Wellness Project
- how big a role stress can play as a root cause in chronic illness
- about the close correlation between IBS, SIBO, and autoimmune disease
- what a low-FODMAP diet is all about
- how she accesses and optimizes her own wellness
- what she thinks the next frontier of gut health will be
Nikita Williams is a mindset business coach and the host of the podcast, She’s Crafted to Thrive. She was diagnosed with endometriosis in 2009 and fibromyalgia in 2010. These diagnoses inspired her to use the training she received from previous jobs to jump-start her career as a business coach. Nikita learned that having a chronic illness did not limit her potential. In fact, it helped her to see the possibilities for herself and for her clients. Her aim is to help all creative women — especially those who live with chronic illness — to go from feeling limited to limitless so that they can create a life and business that thrives, in their unique way.
Tune in as Nikita shares:
- that she first noticed debilitating pain on her honeymoon, but noticed irregularities in her cycle from its appearance at the age of 15
- the learning curve of “not knowing what you don’t know”
- that she’s been additionally diagnosed with PCOS (polycystic ovarian syndrome), adenomyosis, IC (interstitial cystitis), and vestibulitis (which she now has as a result of medical trauma caused by a healthcare provider)
- why she decided to take a year off all medications
- that she has never been offered mental health support for her conditions
- how she discovered she was a highly sensitive person (HSP)
- why she only sees female doctors
- how seeing a urogynecologist was a life-changing experience for her
- why self-advocacy is so vitally important
- why finding a way to cope with her pain has always been her first priority — and yes, even before the question of her fertility
- that the depth of her chronic pain and surgical intervention forced her to face her mortality
- how essential oils and EFT (Emotional Freedom Technique) have helped her manage her pain and anxiety
- why her hysterectomy triggered depression and anxiety
- how sharing about her chronic illnesses helped her find healing
- why she chooses to be intentional with her energy
- that in order to embrace your future, you have to face your past
Originally launched as a means of sharing her craft projects, Kendall Rayburn’s namesake blog has since evolved into her passionate full-time occupation: a place to pour her heart into content across the lifestyle spectrum (see: plus-size fashion, family-friendly travel and activities, home decor, recipes, and more). It has also become a powerful vehicle for sharing her struggles with endometriosis — all with the token contagious positivity that’s garnered her a devoted following. Add to that her candid takes on being a Spoonie mom to son Wyatt, who lives with autism, and you’ve got an oasis of advocacy and lifestyle like no other. We dare you not to fall in love with the happy, hectic world of Kendall!
Tune in as Kendall shares:
- how she was gaslighted from an early age to believe her period pain was normal
- that she became aware her son was on the autism spectrum when he was 18 months old
- that she also lives with anxiety, depression, and PTSD following adverse childhood experiences
- that she was diagnosed with endometriosis at 22, and told by her doctors that she was so far advanced in her disease that she needed to consider starting a family immediately if she ever wanted to have one
- that the pain of her diagnosis forced her to finish college online
- that after her second child, she was offered a hysterectomy for her pain — and that by the age of 26, she was undergoing menopause
- that to this day, she has had eight surgeries for her pain — and it is still debilitating
- why she regrets her hysterectomy
- that she was never offered therapy as she navigated both her diagnosis and her son’s — and why it plays such an important role in her life now
- how medical research has failed her as a woman living with stage IV endometriosis
- how she manages her pain now
- what her son has taught her about resilience
- her advice for others living with chronic pain and/or advocating for others
Dr. Akilah Cadet is the Founder and CEO of Change Cadet consulting firm, which offers a broad array of anti-racism and diversity services including strategic planning, crisis rebuilding, advising, executive coaching, and facilitation. Cadet (her last name) is a French term that means soldier. As it's often an uphill battle for BIPOC, women, and historically excluded communities to achieve success and equity in the workplace, Change Cadet prepares soldiers of change to overcome these continuous battles so individuals and companies can thrive. Akilah has 15+ years of experience working in various organizations, with both private and public sector companies. She literally has all the degrees (Bachelor of Science in Health Education in Community Based Public Health, a Master of Public Health, and a Doctorate of Health Sciences in Leadership and Organizational Behavior), lives in Oakland, CA, has a rare heart condition, and is a proud Beyoncé advocate…and has just been diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS). And on top of all that, she’s the host of the Change Cadet Podcast!
Tune in as Dr. Cadet shares:
- how her early symptoms first manifested
- the truth about accurate diagnosis: “in order to be diagnosed, you have to be misdiagnosed”
- how she was diagnosed with coronary artery spasms, or Prinzmetal’s angina; as well as inappropriate sinus tachycardia, pre-atrial contractions (irregular heartbeat), and orthostatic hypertension
- how she faced her own mortality during the process of being diagnosed
- what her long-term care looks like with regard to heart health: ER visits and the risk of heart attack
- the criteria she holds her care providers to
- why she is still waiting for genetic testing to determine her hEDS type
- how she manages her symptoms day-to-day — and how so much of that management involves clear communication
- what true energy management looks like for her
- why the “ER is nothing but trauma for [her]” — and why healthcare in America is such a mess
- a conversation about the concepts of intersectionality and inspiration in chronic illness and disability identities
- her advice for Spoonies and their loved ones
Faith Crittenden, MD MPH is a recently-graduated pediatric resident with her Doctorate of Medicine from the University of Connecticut School of Medicine. While a student, she was an active member of the Student National Medical Association (SNMA) and the American Medical Association (AMA). In 2016, she was appointed as the national liaison for SNMA to AMA — Medical Student Section. She has helped the progression of organized medicine in many ways — most recently is a co-author on several historic policies passed through the AMA House of Delegates, such as: Racism is a Public Health Threat, Racial Essentialism, and Combating Police Brutality. This year, she also added Combating Natural Hair and Cultural Headwear Discrimination in Medical Professionalism to this list. Faith was also the Deputy Editor for the Yale Journal of Biology and Medicine March 2021 preventative medicine issue. This TedX alumna has also landed coverage around the country through op-eds and articles featured in Health Affairs, Hartford Courant, CT Mirror, Yale Daily, and In-training.org. Faith knows that in order to change the culture of medicine, we must evaluate and critique the health policies of the past, present, and future. In April 2020, she launched a podcast called Coloring Health Policy which focuses on how health policy impacts minority communities, both domestically and internationally. Faith holds a Bachelor of Science degree in chemistry, Minor in molecular cell biology with Honors from the University of Connecticut, and Masters of Public Health in Health Policy from Yale University.
Tune in as Faith shares:
- how she has confronted trauma-informed services in healthcare, and how her early experience shaped her interest in medicine
- the importance of prioritizing mental health care
- about her historic role in having racism declared a public health crisis by the AMA
- how hard she and her team worked to have this policy passed by the AMA
- her hope that more BIPOC train as physicians in the future — and that these recent policy declarations can help pave the way
- how to get involved in activism locally, to support ongoing work in racial justice and healing
- the role of Black men in healthcare reform in America
- where her advocacy work is headed next: to addressing natural hair and cultural headwear discrimination
Pooja C. Danay is a South Asian mental health advocate who lives with obsessive-compulsive disorder (OCD). An actor, entrepreneur, and dancer who specializes in Bollywood dancing (been doing it since she was 5 years old!), she loves traveling and spending time with family and friends. Born and raised in New Jersey and currently living in NYC with her husband, she attended Pace University and the Lubin School of Business. She is proud of her culture: where her family comes from (India) and its rich traditions. She is a huge believer in advocating for what you believe in, and hopes that speaking up and sharing her story can help others and inspire hope.
Tune in as Pooja shares:
- that she was diagnosed with OCD at the age of 13, but recognized symptoms earlier than that
- that her symptoms manifested with obsessive thoughts, compulsions, depression, and anxiety
- that OCD is an anxiety disorder, and the compulsions are usually designed to give someone a sense of control when they don’t feel they have it
- how her background influenced her approach to mental health care — because mental health and illness can be a taboo topic in South Asian cultures
- one of the biggest challenges of her diagnosis: finding an appropriate therapist
- how her diagnosis affected her relationships, especially as a teen
- why dealing with mental illness is such a lonely experience, especially early on
- why support and community is as vital as finding the right care providers
- what ERP (Exposure and Response Prevention) is, and how it has helped her mitigate the negative aspects of her disorder
- how stress can influence her symptoms
- how OCD affected her in the workplace early in her career, and how it influences her treatment of employees now
- what we most desperately need to change about American healthcare in order to best serve patients in need
- her thoughts on using medication to manage her illness
- her advice for others living with chronic and/or mental illness
- why we need to destigmatize conversations about mental health and illness
Nthabeleng Ramoeli was born in the small southern African country of Lesotho. At the age of 12, she began to experience chronic pain and subluxation of her joints, in addition to extreme skin elasticity, GI and lung issues, and anapyhlaxis. These symptoms persisted through her admittance to university, where test after test came back inconclusive. So, she began her own research…and stumbled upon Ehlers-Danlos syndrome (EDS). While her diagnosis was eventually confirmed, none of the practitioners in her region knew what EDS was — or how to treat it. She found herself arguing with doctors every time she had contact with the medical system, as most couldn’t admit the limit of their own skills and knowledge. In 2014, she was in an accident in which she sustained over 10 broken bones down her spine, among other injuries. A spinal specialist informed her that EDS had saved her life: her joints were so hypermobile, the impact hadn’t shattered her spinal cord…and while she spent close to a year in rehabilitation, she can walk again today. In 2017, she founded Rare Diseases Lesotho Association (RDLA) in order to serve others living with rare disease in her corner of the world — by raising awareness, providing care and education services, and bringing those who feel alone into community. In 2020, this led to the creation of the Rare Diseases African Alliance, which also includes the Rare Diseases Namibian Alliance. As an activist and advocate for EDS and other rare diseases, Nthabeleng has found ways to cope with her diagnosis despite the hardships she faces — and is fueled by helping others live as comfortably and fully as possible with rare disease.
Tune in as Nthabeleng shares:
- when she first started experiencing symptoms of EDS, and how she was diagnosed
- how she struggled with doctors who didn’t understand her diagnosis and treatment
- how her constellation of symptoms finally made sense when she discovered EDS in her research
- her experience in a psychiatric hospital, which further proved her diagnosis was not in her head
- the degree to which her organs are involved in her EDS type
- how her diagnosis has impacted her relationships
- how and why she founded RDLA
- how disability has transformed her presence in the world
- how you can support RDLA’s efforts
- her advice for others living with invisible disability
The idea behind non-profit community support organization Bolus Maximus began in late 2017 when Matt Tarro and Brandon A. Denson started having weekly discussions about their lives with type 1 diabetes (T1D). Coming from completely different backgrounds, the two actually had a lot in common — and recognized they both wanted to change the narrative around men’s freedom to express their emotions. Brandon has taken the helm of this movement in an effort to address the sheer lack of Black faces on organizational boards. A stand-out linebacker and walk-on at Michigan State, Brandon has played football at the highest level while living with diabetes (and earned a Bachelor’s degree in Criminal Justice while he was at it). His devotion to community, specifically working with young Black diabetics, is nothing short of inspiring — and his career in the AFL, CFL, and NFL has allowed him to connect with more and more young people living with his condition. Extreme sports suit Brandon’s counter-part, Matt, who grew up in a medical family and spent 10 years in digital advertising, media, and marketing. With a background in creative design and brand development, their work together is just getting started. Fun fact: Brandon was the first Black man with T1D to compete on an aired episode of American Ninja Warrior! As Matt & Brandon say, “Remember: it’s OK to ask for help, show emotions, or have bad days. Let’s talk about tough stuff.”
Tune in as Brandon & Matt share:
- when and how they were both diagnosed with T1D
- that when they were diagnosed, there was not support for teenage males with T1D
- how technology advancements in diabetes care has changed their lives
- how they were inspired to start giving back to their community
- why chronic illness diagnoses can be so taxing — beyond the physical
- the impact of Matt’s diabetic alert dog, Forest, on his life
- how their diagnoses have impacted their relationships
- what inspires them every day
- why mental health support is so vital to survival with a chronic illness
- when and why Matt began to address substance use
- a discussion of ADA compliance in addressing individuals who work with service animals (and the animals themselves)
- a discussion of access issues with regard to medical care and equipment for diabetes management
- why money matters in the healthcare system
- their advice for living well with T1D
Morgan Greene is a chronic illness and holistic wellness blogger and content creator at Is Was Will Be blog. After being diagnosed with rare chronic illness Myasthenia Gravis (MG), Morgan started writing to process her experience — “serving as both therapy and accountability” for her, as she so aptly puts it. As her journey progressed, she found solace in putting into words what many of her fellow Spoonies were experiencing. What started as a hobby has turned into a passion, as Morgan continues to spread awareness about living with chronic illness and inspiring women to live their illest lives. As she details on her blog, “I challenge you not only to share the journey with me, but also to start one of your own. It is my hope that through my words, you will find the fuel to ignite your own personal revolution. That you will finally start living according to your own…happiness. There’s no easy button. It’s not going to happen tomorrow, next week, or even next month. But if you just start, one day you will be able to wake up to a life you made happen.”
Tune in as Morgan shares:
- how her symptoms started, and how she was initially diagnosed
- the importance of working with a specialist for your condition
- what her MG treatment looked like — and how a thymectomy brought her MG into remission
- what MG is: a neuro-autoimmune condition
- why seeking support and community is vital as a Spoonie
- how her diagnosis helped her strengthen her self-love practices
- how MG has changed her approach to exercise
- how MG has shaped the way she sees her life now
- how reducing toxins in her daily life has improved her health
- why holistic wellness has become a major interest for her
- her top tips for thriving with chronic illness
Dr. Karin Hehenberger has close to 20 years of experience in the life sciences sector. She served as an executive at Eyetech Pharmaceuticals and Coronado BioSciences, and had strategic management roles at Johnson & Johnson (Vice President, Metabolic Strategy), JDRF (Senior Vice President, Strategic Alliances), and McKinsey; as well as senior partnership roles at public (Brummer & Partners) and private (Scandinavian Life Science Ventures) multibillion-dollar investment funds. She received her MD and PhD degrees from the Karolinska institute, and did her post-doctoral fellowship as a JDRF stipend recipient at the Joslin Diabetes Center, Harvard Medical School. Inspired by her background and diagnosis of type 1 diabetes, she is the founder and CEO of Lyfebulb.
Tune in as Karin shares:
- that she was always in good health — but that at the age of 16, this changed
- that shortly after, she was diagnosed with type 1 diabetes
- the fear that came along with her diagnosis
- what she wishes she’d done differently after her diagnosis
- that she spent the first decade after diagnosis largely hiding it from the world, even though it played a role in shaping her career
- that when her dad donated a kidney to her 12 years ago, doctors also suggested she get a pancreas transplant simultaneously
- what qualifies diabetes patients for pancreas transplants
- how she recognized that patients can be innovators — and how this inspired her to launch Lyfebulb
- how she also realized that patients need patients — and how this plays into Lyfebulb’s community today
- how she manages the side effects of her immunosuppressants
- the importance of educating care partners in the nuances of chronic disease — and how vital it is that patients learn to ask for what they need
- the obstacles presented by the American healthcare system
- what it was like to entertain motherhood as a patient on immune-suppressing drugs
Jemma-Tiffany is a 17-year-old writer, passionate patient advocate, and founder of Hyperacusis Awareness. Having grown up with severe hyperacusis (a rare and poorly-understood disorder that causes her to experience physical pain from everyday sounds) has motivated her to raise awareness of others with similar conditions. Through her various efforts, Jemma has gained experience in patient advocacy and legislative change campaigning, and has been able to participate in numerous awareness-raising events. The goal of her work is to create a world in which those with hyperacusis, chronic pain, and rare disease are believed — and are offered all the unique environmental modifications and services they need to live pain-free, comfortable lives. Her current advocacy projects include: adding a title 6 (Telepresence and High-Level Sensory Modifications) to the ADA; collaborating with research scientists and the American Academy of Audiology to establish clinical practice guidelines to protect those with hyperacusis; establishing a national awareness week for the condition; and a recent Hyperacusis Awareness Conference; as well as a campaign to extend distance-based learning (implemented during the COVID-19 pandemic) for disabled students in need. Jemma-Tiffany has been featured and published by Migraine Magic, PatientDX, the Hearing Health Foundation, the American Chronic Pain Association, Rare Youth Revolution, and The Third Estate, among others.
Tune in as Jemma-Tiffany shares:
- that she was born with cataracts, and is low vision/legally blind
- that she didn’t start experiencing issues with sound until she was about six years old
- that she was initially diagnosed with chronic migraine, but was eventually diagnosed with hyperacusis
- that hyperacusis was originally thought to be a psychosomatic condition — and as such, she has had to endure a lot of painful treatments
- how diagnostics have changed in recent years, as it regards hyperacusis
- that there is currently no complete treatment for hyperacusis
- what hyperacusis is, and how it can affect patients differently
- that the cause of hyperacusis is unknown, even in Jemma-Tiffany’s case
- how she has grown into a patient advocate
- how COVID has positively impacted her educational experience, enabling her to receive more supportive accommodations
- why she was driven to attempt suicide
- how she has been gaslighted over and over — in medical settings and beyond
- how some alternative therapies have helped her (though they have not cured her of her pain): TENS and PEMF, among others
- that she has been doing her own medical research since she was 11 years old, in order to present information to her doctors
- what she’s working on right now
- her advice for other young people living with chronic pain
* * TW / CW : mortality, and graphic discussion of the events during and in the aftermath of 9/11, 2001 * * **
Twenty years after 9/11, some first responders are still struggling with long-term health complications brought on by the historic event. For Tom Frey, a former NYC detective, the consequences started with a diagnosis of Hodgkin’s lymphoma — the treatment for which then caused pulmonary fibrosis (PF) — a life-threatening, incurable lung disease. His illness can be linked back to inhaled dust from his rescue and recovery efforts at Ground Zero. Tom’s not alone. Officials worry that deaths of 9/11 first responders due to illnesses caused by exposures at Ground Zero will soon outnumber deaths of those who lost their lives that day. Despite Tom’s terminal health struggles, he works hard to drive awareness, research, and funds for a cure for pulmonary fibrosis – especially during Pulmonary Fibrosis Awareness Month, which happens to be in September. A true hero, Tom will tell you he would do it all over again tomorrow, even as he struggles daily to breathe and relies on oxygen.
Tune in as Tom shares:
- how he was first diagnosed with Hodgkin’s lymphoma in 2016 — as a result of inhaling toxic dust during and in the aftermath of 9/11
- how one of his chemo drugs caused his pulmonary fibrosis diagnosis
- that the only cure for PF is a lung transplant — and his has been on hold because of COVID
- how the Pulmonary Fibrosis Foundation has changed his life
- the trauma of working in rescue and recovery after a disaster like 9/11, and the importance of talking about it
- how waiting to die — and not dying — forced him to live again…and why he hasn’t stopped moving since
- who his heroes are: nurses and doctors
- that while the average life expectancy for pulmonary fibrosis diagnosis is 2-5 years, with the right support it can be extended
- the difficulties he’s had dealing with the United Healthcare World Trade Center Fund to cover his life-saving treatments
- his plea that we take sensible precautions against COVID — like wearing masks
- a look back at what it was like on the ground on 9/11, and in the days following the attacks
- a reminder of all the individuals who were on the ground on 9/11, and whose lives and health have been impacted as a direct result
Sara Naveed is a Canadian writer, chronic illness advocate, and founder of the blog Fabulous and Fatigued. 14 years ago, she was diagnosed with fibromyalgia following a hit-and-run. Inspired by her experience, she started the blog with the aim of creating awareness and ending the stigma of life with chronic illnesses. Her work has been published in various media outlets and platforms including Yahoo, MSN, The Mighty, The Tired Girl Society and DPC Education Center.
Tune in as Sara shares:
- details of the hit-and-run that eventually triggered her diagnosis
- what the diagnosis and acceptance processes were like for her, as a teenager
- how chronic pain has changed her life
- how fibromyalgia manifests in the body
- how discovering accessibility services supported her in college
- that taking holistic approaches to her symptom management has been very supportive for her
- where she has encountered “toxic positivity” in the reactions of family and friends
- how her diagnosis has impacted her relationships
- how she has worked on her mindset to cultivate balance in her life
- her experiences of acceptance and bias within the medical system, as a Muslim woman of South Asian heritage
- why she uses CBD to manage symptoms from insomnia and anxiety to chronic pain
- how the immigrant experience — from a language perspective — impacts healthcare access
- how the Canadian healthcare system needs improvement in order to better serve patients
- a reflection on her early experience of chronic illness, and how it inspires her current work
- the importance of community in ongoing healing and acceptance
Jenny McGibbon is a disabled graphic designer from Scotland, predominantly living with ME/CFS. She was born with a birth defect known as gastroschisis, and as a result she also lives with short bowel syndrome, chronic internal bleeding, and iron deficiency anemia. At the age of 16, she found herself in and out of hospital almost weekly — something that would continue on for some years. She couldn't relate to her peers anymore, and felt alienated in the new medical space she suddenly found herself occupying. Often the youngest person in the waiting room (by several decades), it became abundantly clear that none of the marketing, pamphlets, posters, or websites she was directed to were aimed at her demographic — or acknowledging her unique experience. So she took to the Internet to share her story — This Thing They Call Recovery. With a blog read in over 90 different countries, translated into over 50 languages, and a social media following of over 25k, Jenny is trying to get the word out: chronic illness can look like anything, happen to anyone, and everyone deserves to feel supported. Now in her mid-20s, Jenny is determined to help make sure no young person feels like they're dealing with health issues alone, and is committed to challenging the public perceptions of disability, sparking complex conversations and uniting Spoonies and their loved ones together. As a graphic designer, she uses a mix of visuals and copy to translate how life with illness feels, particularly when one is young. As she says: “I think there needs to be much more information out there about health — and ill health — presented in a friendly and approachable manner. Chronic illness affects your life as much as your body, and I think it's time more people knew about it.”
Tune in as Jenny shares:
- how her chronic illness journey began in childhood, with gastroschisis and bowel surgeries
- that from the ages of two to 16 she was largely well, but that at 16 flares surfaced again through chronic bleeding in her intestines — which also caused iron deficiency anemia
- that she was eventually diagnosed with ME/CFS, but had to deal with a lot of pushback from the medical establishment
- how she got an ME/CFS diagnosis
- the symptoms that impact her most acutely — pain and fatigue
- a discussion of the social complexities of living with disability — from gratitude and “cures” to comfort zones, accommodations, accessibility, pride, and “passing”
- why she owes her life to the NHS
- how and why she started This Thing They Call Recovery
- what disabled identity means to her
- what the community she’s cultivated means to her
- why there doesn’t always have to be a lesson or a silver lining in the disability experience — sometimes it just is what it is
Cassandra Rush is a lupus advocate born and raised in Los Angeles, CA. In 2012, after a two-year battle with an undiagnosed illness due to being uninsured, she was finally diagnosed with Systemic Lupus Erythematosus (lupus SLE). Two years later she was diagnosed with lupus nephritis. An “accidental advocate”, she speaks out about the broken US healthcare system, with a particularly detailed lens on medical racism and systemic bias. She was recently selected as a subject in the documentary series Trust Me, I’m Sick (now streaming on SoulPancake), wherein she shares about her life with lupus. And she’s on the pod to tell us even more.
Tune in as Cass shares:
- how she was gaslit at the early onset of her illness
- that she was 22 when she first got sick
- that her diagnosis has brought her to the brink of her own mortality
- how her battles with health insurance have caused emotional distress over ongoing debt
- how her diagnosis brought her closer with her mom
- how her diagnosis has affected her mental health
- how the COVID pandemic has played into systemic ableism
- how her diagnosis has affected her plans for the future
- the irony that accommodations have readily been made available in the workplace because of the pandemic, but that the disabled community has been requesting them for decades
- access issues in healthcare, from financial obligation to racism
Faith Ashenden is the founder and CEO of That Healing Feeling. She is a global patient empowerment mentor, master mindset coach, and biohacking expert who helps women hack the system and get their health back holistically, using 1-1 coaching, online courses, a podcast, and social media accounts with over 40k+ followers. Faith empowers people to ask the right questions, bust through limiting beliefs, detox their environments and bodies, and start using food as medicine. She’s also overcome Graves’ disease and Adderall addiction…and she’s on the show to share her story!
Tune in as Faith shares:
- that she underwent radioactive iodine treatment for Graves’ disease
- that she has also healed her gut from Candida and SIBO, and her immune system from EBV — all through holistic methods
- how she developed Adderall addiction, and kicked the habit
- why her Graves’ disease was so difficult to diagnose
- how she’s detoxed her day-to-day and reorganized her life with her wellness as a priority
- why the root-cause approach to healing is so important to her — and why it can be financially inaccessible to many
- some suggestions to switch-and-ditch and reduce daily toxin exposures in your home and life
Damian Washington is an actor who’s done 30+ commercials for brands like Fruit of the Loom, Realtor.com, and the NFL. Originally hailing from NYC, he attended the prestigious LaGuardia High School for the Performing Arts (Fame, anyone?!). A few years ago, he was diagnosed with multiple sclerosis (MS)…and soon discovered that developing an MS community is the best way to share his light with the world. Damian’s weekly YouTube channel has several thousand engaged subscribers; he sits on Genentech's Patient Advisory Board and the MS Focus Patient Advisory Group; and he makes content for MS Views & News. He’s also been featured by the National MS Society and Shift.MS. Damian was the winner of the WEGO Health Award for Best in Show: YouTube in 2020. Some say they find the silver lining in the dark MS cloud, but Damian says he’s turning poop into flowers…and that the engaged community that's developed out of his shares is one of the best things to come from this horrible disease.
Tune in as Damian shares:
- that his wife was the first to note a dip in his energy — which led to his MS diagnosis, about three months later
- why his diagnosis was both a validation and a relief
- why he’s open to multiple approaches to his health
- why meditation has been a useful tool for him — and how he learned to meditate with a friend when he first moved to LA
- how his identity forces him to navigate prejudice, and potentially triggering situations
- how sharing his MS journey launched his YouTube channel into visibility
- his lessons for others living through similar experiences
Dani Donovan is a purpose-driven designer who creates cathartic ADHD (attention-deficit/hyperactivity disorder) illustrations and a community of validation and solidarity for adults living with ADHD. Her first infographic, “ADHD Storytelling,” went viral within hours and amassed over 100 million views. Her work has been reposted by celebrities like Mindy Kaling and featured in publications like the BBC. In a few short months, Dani’s relatable comics and her #NeurodiverseSquad hashtag helped her quickly become a prominent voice in the online mental health community. Her comics, jokes, Twitter threads, and TikTok videos aim to help those with ADHD understand themselves, feel a sense of belonging, and better explain their invisible struggle to loved ones. Dani’s influence has helped hundreds of people seek diagnosis and treatment for ADHD. She recently left her full-time job to create ADHD content full-time; you can support her work at patreon.com/danidonovan or view comics (and her online shop!) at ADHDDD.com.
Tune in as Dani shares:
- that she also lives with bipolar II and undiagnosed EDS (Ehlers-Danlos Syndrome)
- why “annoying” is a trigger word for her
- that she was initially diagnosed with depression; then subsequently dysthymia (persistent depressive disorder), anxiety, and panic disorders
- how her ADHD presented very differently from the way it did among boys her age, which made her fall under the radar of diagnosis until she was in college
- how ADHD affects her daily executive functions and impulsivity
- how her behavior doesn’t always align with her expectations, and leads to a cycle of guilt and shame
- how avoidance plays into ADHD symptom manifestation, and can become debilitating
- how ADHD and OCD can occur concurrently
- how her ADHD impacts continuity of care within the medical system
- “ADHD tax” — when those living with ADHD end up paying more than others because the system is stacked against their success
- why forming new habits is tremendously difficult for those living with ADHD
- how her art allows her to communicate her experience with purpose
- how her work has changed lives — and why that gives her ongoing purpose
- why social media has been such a rich resource for her
- her advice for living with ADHD and neurodiversity
Tiffany Yu is the CEO & Founder of Diversability, an award-winning social enterprise to amplify disabled voices; the Founder of the Awesome Foundation Disability Chapter, a monthly micro-grant that has awarded $49.5k to 50 disability projects in 8 countries; and the host of TIFFANY & YU, the podcast. She serves on the San Francisco Mayor’s Disability Council and was a 2020 Co-Chair of the World Economic Forum Sustainable Development Impact Summit. At the age of 9, Tiffany became disabled as a result of a car accident that also took the life of her father. She started her career in investment banking at Goldman Sachs and has also worked at Bloomberg and Sean Diddy Combs' REVOLT Media & TV. She is a 3x TEDx speaker and spoke on 5 sessions at the World Economic Forum Annual Meeting in Davos. She has been featured in Marie Claire, the Guardian, and Forbes. Most recently, Tiffany was named one of TikTok's 15 API Trailblazers. It is through this platform that she posts amazing educational content, including the "Anti-Ableism Daily". Go check her out!
Tune in as Tiffany shares:
- her “disability origin story”, which left her permanently disabled — and also took her father’s life
- that she was most recently diagnosed with PTSD related to the accident that caused her disability
- her take on “toxic positivity”, and how it manifested in her life akin to internalized ableism
- how her identity as the daughter of Asian immigrants has shaped her experience: “the nail that sticks out is the first to get hammered down”
- visibility and invisibility in the disability experience
- what disability inclusion really look like
- why TikTok has been such an important space for her to occupy in anti-ablest allyship
- what an ableist micro-aggression is — how to spot them and feedback mindfully
- how she taught herself to own her disability — and how this realization was the foundation of Diversability
- four tips for being an ally to the disabled community
In 2012, while studying at university, Mimi Butlin contracted viral meningitis — from which she never fully recovered. Since then she has been diagnosed with Ehlers-Danlos syndrome, fibromyalgia, postural orthostatic tachycardia syndrome, and ME/CFS (as Mimi wryly notes, “a really lovely bunch!”). For years, she felt completely alone and that convinced she was responsible for her pain. In 2018, she started the Instagram account @CantGoOut_ImSick, a platform where she posted drawings of what living with illness was like — including portraits of other chronically ill women who had gone through similar experiences. Because of her work, including the #BelieveUs campaign, she has been featured in Women’s Health magazine, Grazia magazine, and on Refinery29 and Bustle. Recently, she collaborated with disability charity Leonard Cheshire to create the #DisabledLooksLikeMe campaign to raise awareness of invisible disabilities. Mimi is very proud of what was achieved throughout the campaign, which saw disabled influencers, creatives, and celebrities — such a Selma Blair and Sinead Burke!! — wearing her t-shirts and supporting the campaign on social media. She is currently taking a break from her work in order to accommodate her health (and wow, can we relate), but she’s extremely grateful to the people she has met along the way, who have helped her accept her conditions and feel proud of who she is.
Tune in as Mimi shares:
- that of all her symptoms, chronic pain is most in control of her day-to-day
- that she was diagnosed with viral meningitis, and subsequently with Epstein-Barr Virus (EBV, or mono) and gastroenteritis — multiple times — and never fully recovered
- a discussion of access issues in healthcare, including the NHS and optional paid enhancements
- why doctors have a responsibility of care — both emotional and physical
- how mental health and medical PTSD have played a role in her health experience
- how she first received notice for her art — from fellow Spoonie, Lena Dunham!
- how her illnesses changed her relationship with her mum
- why she recommends those who identify as female bring a cis man with them as an advocate in doctors’ appointments
- her experiences of not being believed by medical practitioners
- who has inspired her in the disability community
- how she’s cultivated pride in her health status
- how research can give you perspective on your experience — and the experiences of others
In 2009, Juana Mata was diagnosed with lupus. One of three very close sisters, nobody in her family had heard of this illness prior to her diagnosis — or knew how to handle her support and treatment. As the family began to research education, resources, and the history of the disease, they began to discover that it was largely misunderstood, and that it needed awareness-raising to fund research for a cure. The sisters began gathering in therapeutic loom knitting circles as they processed their experience. They recognized how supportive this art therapy was in relieving their stress, and wanted to extend this gift to others in their community. In 2011, they founded Looms for Lupus, a non-profit providing resources and awareness to those affected by lupus, fibromyalgia, and other comorbid conditions — with a focus on the needs of minorities and families of color. Working with local, national, and global organizations, Looms for Lupus forms partnerships with similar agencies and patient care facilities to provide support and resources. Their aim is to create an environment to reassert a sense of hope during a time of illness, and to empower individuals to take charge of their lives through chronic — and sometimes life-threatening — illness.
Tune in as Estela & Juana share:
- what Juana’s early symptoms of lupus were — and that she was initially diagnosed with rheumatoid arthritis (RA)
- that Juana had to argue with a doctor (who wanted to write her off as anxious) in order to get her diagnosis and be heard — and that by the time she was diagnosed, her life was in peril
- that if Juana had not advocated for herself, she wouldn’t be here today
- how Estela was diagnosed with fibromyalgia, along with her daughter
- why Estela pursues holistic treatment to manage her pain
- the distinct role of “invisibility” in their illness experiences
- their experiences of bias in the healthcare system
- why they created Looms for Lupus, and the importance of providing patient resources in Spanish
- their tips for managing chronic illness with grace
Alexa Chronister is the founder and president of Fight Like A Warrior (FLAW). She created FLAW after creating the Cards For Warriors program (sending handmade cards of encouragement to chronic illness warriors across the globe, reminding them they are not alone) in 2016. With the goal of creating a community of empowerment and improving the lives of those with chronic health conditions, she developed FLAW as a way to cope with her own health challenges, while giving back to others (and won a WEGO Health award in 2019 to prove it!). In 2020, she received her bachelor's degree with honors distinction in public policy (with a minor in social entrepreneurship!) from the University of Delaware, and completed a thesis focused on health policy and disease advocacy among POTS patients. Never a shrinking violet, she also plans to attend law school and pursue a career in health policy. In response to the COVID-19 pandemic in 2020, Alexa was instrumental in launching FLAW’s #ProtectTheVulnerable campaign, in partnership with numerous patient advocacy platforms including Health Advocacy Summit (founded by former guest Sneha Dave!), Support Fibro (founded by former guest Melissa Talwar), and InvisiYouth (founded by former guest Dominique Viel), among others. Alexa has a passion for working with individuals and communities to advance policy, advocacy, and entrepreneurial efforts, particularly within healthcare, focused on improving access and reducing inequity. [A note that this episode was recorded a year ago, hence features some dated mentions of the #ProtectTheVulnerable campaign and Alexa’s recent college graduation!]
Tune in as Alexa shares:
- how she was diagnosed with hypermobility syndrome in childhood and, later, Ehlers-Danlos and POTS (postural orthostatic tachycardia syndrome)
- how she has learned to step up into the advocacy space
- how she manages her health day-to-day
- why it’s so vital our various practitioners find ways to communicate to one another about our cases
- how access directly impacts healthcare outcomes and patient experiences
- what inspired her to start Cards for Warriors at the age of 18, and how it laid the groundwork for what would become Fight Like A Warrior
- why it’s so important to listen to our bodies, especially as Spoonies
- the importance of self-advocacy
- what the future holds for FLAW
Julian Gavino (he/him) is a trans-masculine model, writer, coach, and sex-positive disability influencer living with Ehlers-Danlos syndrome and comorbidities. An outspoken advocate for both the trans and disability communities, Julian grew up never seeing people in media who “looked like” him…and his work has become a direct response to that experience. Many may know Julian through his Instagram account @TheDisabledHippie, which he started during a health crisis while in college for neuropsychology. Now a coach serving the disabled and LGBTQIA+ communities, he has also become a social media expert and co-founder of Disabled with Dignity, a platform featuring disabled stories — by disabled people, for disabled people. In his work, Julian aims to normalize and destigmatize trans and disabled bodies in media — by facing discrimination down and creating space for representation.
Tune in as Julian shares:
- that he started experiencing symptoms from the age of 5, from digestive distress to dislocations — and was initially diagnosed with Celiac
- that he largely uses his wheelchair these days, in order to support his mobility
- that he was recently diagnosed with Hashimoto’s disease, but has been monitoring his thyroid health from an early age
- that as far as he knows, most of his diagnoses are likely connected to EDS
- the most significant impact on his health in his adult life: his neurological conditions, including a demyelinating neuropathy similar to MS that can flare without warning
- the emotional toll of his health conditions — from awareness of mortality to a young age, to the validation of diagnosis
- that growing up female meant that he was gaslighted over his health frequently
- how he stepped into self-advocacy
- that he started his Instagram feed as a way to manage his emotional journey through disability
- that his treatments include infusions, a feeding tube, multiple medications, physical therapy, and more
- the supportive role his service dog, Atlas, has played in his life — both physically and emotionally
- how his gender identity has influenced his experiences within the medical system — including threats to his safety from professional caregivers
- his thoughts on healthcare reform
Shayla Swint is a 25-year-old college grad from Houston, Texas. Like the old adage, “Don’t judge a book by its cover,” Shayla is so much more than what we can see…she lives with connective tissue disorder Ehlers-Danlos Syndrome (EDS), hypermobile type. She’s survived over 15 surgeries thus far, and lives in an almost-constant state of pain and anxiety due to the condition. When she says that “her body’s trying not to fall apart,” it almost seems an understatement. And yet…she manages to keep going. In this interview, she tells us her story.
Tune in as Shayla shares:
- that she suffered from numerous injuries during physical activity in childhood, and her hypermobility was also present at this early stage of development
- that early on, her orthopedist suspected she had EDS — but was unable to provide the genetic testing to confirm it
- that she was finally diagnosed with hypermobile EDS a decade later
- that between the ages of 13-18, she had multiple surgeries — and didn’t get her official diagnosis until 2 years ago, at the age of 23
- why her diagnosis was validating
- that one rheumatologist told her, “Black people don’t get EDS” — and her response was to lose all trust in the system for a time
- the importance of mental health support — and that it was never recommended as part of her diagnosis or treatment plan…but, thankfully, by her mother
- that she’s been exploring a vegan diet in order to reduce inflammation
- that her mom has chronic migraine — and understands what it’s like to advocate and live in chronic pain
- how she has disclosed and managed her pain in work environments — and where she’s struggled to achieve easy accommodations (even when she presented solutions)
- how triggering it can be to pursue legal action in disability cases — and why so many individuals don’t do so
- why remote work during COVID has been so much more comfortable for her
- the difficulties she had receiving disability accommodation during college, and why her disability being invisible made that fight even harder
- how her race has impacted her treatment in the medical system
- the impact of community on her experience, especially as a WOC
- why change in our healthcare system is so desperately necessary
In the last in our 2021 series on Lyme disease, we are joined by the first WOC to discuss the subject: Rhisa Marie Parera. Though she began experiencing symptoms from a young age, Rhisa grew up as an active young woman in Staten Island, NY, and got heavily involved in the salsa dancing scene and modeling from her late teens into her early twenties. At the age of 19, her health took a serious downward turn; and ten years later, aged 29, she had deteriorated to the point at which she was no longer able to participate in activities that had once brought her joy and connection to her heritage. According to the CDC standard Western blot test, she was positive for Lyme disease…but it took a decade to get there. Given her experience of the medical system, she took it upon herself from the point of diagnosis to get her life back, and has been working with a team of integrative practitioners to do just that. She is the author of the Negra Con Lyme blog — a chronicle of her life as an Afro-Latina with chronic Lyme; and will soon be launching a clothing line for Lymies. She has found strength in community, and hosts a BIPOC Lyme support group that meets weekly via Zoom, Sundays at 3pm EST.
Tune in as Rhisa shares:
- her varied symptoms: a rocking sensation similar to vertigo; migraines; a pulsing sensation in the back of her skull; loss of vision; GI issues; numbness and pain in limbs and joints; seizures; and much more
- that she also has skeeter syndrome: extreme sensitivity to mosquito bites
- that she presumes she was infected by a mosquito when visiting her family in Puerto Rico
- that she has also tested positive for Dengue fever — a viral infection also carried by mosquitoes, largely in the Caribbean
- that she didn’t get her Lyme diagnosis until 2019 — after going through at least 50 doctors on the road to diagnosis
- that she was gaslit over and over by various practitioners, frequently prescribed antidepressants, and often sent for psychiatric help as a final solution
- why she believes fibromyalgia isn’t a true diagnosis
- that when she was diagnosed with chronic Lyme, her doctor prescribed two weeks of antibiotics and sent her on her way
- that she’s learned the most about Lyme from her online community
- how her illness has affected her relationships
- how her privilege has enabled her to access treatment
- how Lyme has also put her in early menopause, and affected her fertility — with PCOS
- her specific experience of racism in the Latinx community
- why diagnoses of Lyme disease are so much more rare in communities of color
Sharon Leggio Falchuk, FMCHC found herself bedridden by a serious illness in 2011, and when the mainstream medical system had no answers or help for her she took matters into her own hands. She spent every moment she could doing research, changing her diet and lifestyle, and assembling a functional medicine and alternative care team to help her forge a path to healing. Her inextinguishable will to be well meant she was willing to try almost anything, and one of the life-changing discoveries she made was the true power of mind-body medicine. Once she reclaimed her health, she became a Functional Medicine Certified Health Coach and founded InTended Holistic Wellness, where she specializes in helping people with “mystery illnesses” and chronic conditions, as well as those who are highly sensitive. Sharon’s “less is more” approach stems from navigating her own wellness journey with many sensitivities, and she feels the most important factor in health and healing is in reconnecting with yourself and your unique needs and strengths. As it happens: Sharon has now healed from Lyme disease, and takes on many patients undergoing similar travails. She sat down to generously share her story with us.
Tune in as Sharon shares:
- that she dealt with digestive flares, migraines, chronic pain, and neurological symptoms in her childhood
- why being a Highly Sensitive Person (HSP) caused her to be brushed aside by practitioners
- that doctors began to treat her body in silos, prescribing treatments for each area that was causing symptoms
- that the first time she had any relief was when she received cranial-sacral therapy — a holistic method of treatment
- how she believes her infections may have affected her son
- that she was likely reinfected as an adult
- that Lyme is an ancient bacterium — e.g., Ötzi the Iceman was discovered to have Lyme bacteria in his system
- that there is some concern her son may have Lyme, and may have been infected in utero — but that ultimately she has opted not to have him tested, and instead is raising him toxin-free
- that in the early days of her diagnosis, she saw an infectious disease doctor who likened her symptoms to HIV
- that she healed numerous gut issues with a Candida protocol
- how her diagnosis was both validating and terrifying
- that she turned to both Indigenous and Buhner healing protocols to detox from Lyme
- how trauma and loneliness affect our bodies
- what drew her to health coaching
- the importance of stress reduction for our health
- her reflections on being a chronically ill parent
- that we are all living with collective trauma due to the COVID pandemic
- how she’s discovered the importance of healing with mind-body medicine
Lisa Hunt, D.O., D.O.H. is a practitioner at Holtorf Medical Group in El Segundo, CA. She specializes in anti-aging treatment, natural thyroid replacement, menopause/andropause therapy (including bioidentical hormone replacement), chronic fatigue syndrome, fibromyalgia, strengthening the immune system, neurotransmitter analysis/replacement, and nutritional support guidance. Dr. Hunt is a graduate of Western University of Health Sciences and completed her residency at the San Joaquin General Hospital. She is board certified in both Family Medicine and Holistic and Integrative Medicine and brings with her over 20 years of experience as a family physician and medical director. Her mission is to build on every level of your health to achieve the best quality of life.
Tune in as Dr. Hunt shares:
- what drew her to her practice
- how she handles initial appointments and testing
- why she lets the patient lead their care, and offers options for testing and treatment
- the importance of family involvement in a patient’s care
- how our work-lives are hindering our health
- why a morning routine can aid us in scheduling self-care (read: meditation!)
- what the healthcare system in the US is getting right
- the importance of extended time with patients and individualized nutrition guidance in traditional allopathic approaches
- why it’s helpful to find an integrative or functional medicine practitioner if you’re struggling with chronic illness
- other pathways to improve overall health: nutrition logs and good sleep hygiene
- that her job is to empower her patients to take care of themselves
- that care is individualized — there is no “one size fits all” approach to testing and treatment
Christina Kantzavelos (@buenqamino // @beginwithintoday) is a Lyme warrior, award-winning freelance writer/content creator, chronic illness advocate, and licensed psychotherapist. She was diagnosed with Lyme disease and co-infections in October of 2018. However, she struggled with debilitating symptoms and various autoimmune diseases for years prior. Her treatment has included a mixture of Eastern and Western modalities, nutritional changes, a switch to non-toxic living, clean beauty, DNRS (neural-retraining therapy), as well as a strong focus on self-care — such as journaling, painting, joining CoDA, and being out in nature. From being couch-bound and sensitive to just about everything (scents, food, EMFs), she is now back in the world, hiking again, and tolerating most foods and scents. Although she is still on the road to healing, she has made a conscious decision to choose an attitude and intention of thriving over an obsession with surviving — and hopes to share that with others. She is also the author of our favorite symptom tracker, the Begin Within Today journal, and the proud momma of a service-dog-in-training, Cowboy.
Tune in as Christina shares:
- that throughout her childhood and into her teen years, she experienced migraines, chronic pain, panic attacks, digestive problems, and numerous other unexplained symptoms
- that she lost her brother to cardiomegaly when she was 19
- that when she got checked for cardiomegaly, she was actually diagnosed with POTS
- that it took nearly 2 decades for her to receive her Lyme disease diagnosis
- after grad school, she was diagnosed with Celiac disease — and has been gluten-free ever since
- that her health continued to deteriorate to its lowest point in 2018, when she was first referred to a rheumatologist — who was also an LLMD
- that she doesn’t recall ever being bitten by a tick, but has been bitten by tons of mosquitoes…and reminds us that mosquitoes appear to be able to carry Lyme, as well
- that she was additionally diagnosed with giardia, Lyme co-infections, and had been exposed to mold
- she was also diagnosed with lupus, Sjogren’s, and mixed connective tissue disease — all of which appear to be manifestations of her chronic Lyme disease
- that treatment for Lyme knocks you off your feet — the Herxheimer reaction is truly horrific: “it gets worse before it gets better”
- that her parents had to begin caring for her before she even began treatment
- that she’s additionally been diagnosed with mast cell activation syndrome (MCAS)
- that she now considers herself to be 60-70% better, and has redesigned her lifestyle to support healing from her chronic illnesses as best she can
- that she has always been her own best advocate, in no small part because her parents are immigrants
- that she and her parents worked through trauma together and in some ways, her illness has created that space for emotional healing
- that the people who take care of us are experiencing second-hand trauma
- a discussion of accessibility to healthcare in America
- how the Begin Within Today journal was born of her own experience
- that she has seen over 50+ doctors throughout her chronic illness experience
- the importance of reducing toxins in our everyday lives, from EMFs to diet
Casey Kelley, MD, ABoIM is the founder and medical director of Case Integrative Health. Dr. Kelley is relentless about getting to the root cause of chronic disease and transforming health through Functional Medicine. On faculty at Northwestern's Feinberg School of Medicine, she is Board Certified in Family Medicine and was also among the first physicians to become Board Certified in Integrative Medicine. She has studied the causes, effects, and treatments of disease extensively, and lectures nationally on this and other topics. Dr. Kelley graduated from The Ohio State University College of Medicine and completed her residency in Family Medicine at St. Joseph Hospital in Chicago. She is a ten-year member of the Institute of Functional Medicine (IFM), a Director on the board of The International Lyme and Associated Disease Society (ILADS), and is a Founding Member of the Academy of Integrative Health and Medicine (AIHM). Prior to founding Case Integrative Health, Dr. Kelley practiced medicine at WholeHealth Chicago, Michigan Avenue Immediate Care, and St. Joseph Hospital. And get this: she is not only an LLMD treating those living with chronic Lyme — but she was once also a patient herself. This ep is not to be missed!
Tune in as Dr. Kelley shares:
- that she founded Case Integrative Health 2 years ago; but has been in the integrative health field for over 8 years
- that she dealt with chronic fatigue, brain fog, and other symptoms for years until she discovered they were part of a Lyme diagnosis
- that she wanted to “create a place for people with chronic illnesses who were misunderstood by conventional medicine, and needed a different approach”
- that she is already seeing new patients living with long COVID — a “post-immune issue”, much like chronic Lyme
- that she trusts her patients to know their bodies better than she does — and so, she believes them
- why integrative practices can save the healthcare system money (in preventing chronic disease)
- that the science supporting the existence of Lyme diagnosis and treatment is REAL and readily available
- that much Lyme testing currently available is inadequate; more funds are needed for greater research and development
- how doctors are strapped by the system of private interest in healthcare
- why she has divested from the health insurance model in her practice — and wants her patients to get better, so will always find a way to work with them to make their care accessible
- that financial support is always available to patients through various Lyme advocacy groups
- that she was diagnosed with POTS during med school, but was actually living through chronic Lyme
- all the varied symptoms that can be associated with Lyme
- the importance of thorough tick checks after going outdoors
- where ticks are most likely to be found on the body
- how she treats Lyme in her practice
- that she is licensed in several states, and practices telemedicine for patients outside of the Chicaco area
- how she celebrates patients who make it through chronic Lyme treatment
Whether it’s hiding the likes of Pamela Anderson from paparazzi or helping NeNe Leakes pretend to sell furniture…Alex Moresco has a story about it. A PR executive from Chicago, four years ago her life was turned upside-down by undiagnosed illness. It took her two years and eight specialists (a shorter time than most, she admits) to find a doctor that would eventually crack the case: tick-borne illness. She quickly realized what mattered in life: philanthropy, advocacy, and lobbying for more accessible and evidence-based healthcare. Moresco has gone on to raise hundreds of thousands of dollars for tick-borne illness research, and makes frequent trips to DC as part of that work. In 2020, she co-founded Advocacy Express, an automated advocacy platform that makes it attainable and efficient for constituents to lobby their Representatives for tick-borne disease-related and healthcare change. Featured on People, Fox, Michigan Avenue Magazine, Swaay, and various other outlets, she joined us to share her story and remind why advocacy matters. Especially for those living through Lyme.
Tune in as Ali shares:
- how her symptoms were written off by practitioners: as a cold, flu, stomach flu, food poisoning, ear infections, depression, and more
- that while she was being brushed aside by practitioners, her symptoms progressed so much that she became bedridden
- a recognition of her privilege in accessing varied treatments — Eastern, Western, antibiotics, ozone, IV therapy, peptide therapy, IVIG, and more
- that she has multiple confections, dysautonomia, and Specific Antibody Deficiency as a result of her Lyme infection
- that one of her doctors had the wherewithal to send her to an LLMD for confirmation and treatment
- that so many Lyme patients are abandoned by friends, family, and practitioners
- how her illness has impacted her relationships
- the importance of mental health support through chronic illness — and that she finally sought professional support after losing a close friend to Lyme
- the disproportionate disbelief of chronic Lyme patients, and the need for systemic change in order to validate their experiences and create practical solutions
- why she is committed to helping raise voices in more marginalized communities
- why it’s more critical to DO THE WORK of erasing stigma and addressing systemic oppression behind the scenes, rather than solely taking part in performative action
- what drove she and her husband to establish Advocacy Express — and how they are leveraging the platform to create legislative change in healthcare
- what we need to change about medical education in the US — and why more doctors need to be educated in chronic disease (outside of what’s easily treated with pharmaceuticals)
- why it’s a crime that insurance companies require patients to be “sicker” in order to address their needs — and thus create long-term dependence on treatments, rather than covering preventive treatments in the short-term
- that there is hope
Gena Chieco is a coach, adventurer, and connector who loves inspiring clients to step into their best lives by providing tools to help them tap into their inner wisdom and dreams. She grew up in a rural suburb of New York City running around barefoot in the summer, obsessed with nature, with dreams of becoming a zoologist. After earning a BA with Honors in Psychology from Northwestern University and a JD from the University of Virginia School of Law, she had the privilege of working for the Obama Administration. She contributed to a variety of initiatives, including immigration reform at the Department of Homeland Security and environmental issues at the White House. She left federal service in 2017 to serve as General Counsel & Chief of Staff to the CEO of a cleantech startup, marrying her passion for the environment and entrepreneurial spirit. The following year, while on an extended travel sabbatical, she began her coaching journey by enrolling in Dr. Martha Beck’s Life Coach Training Program. She realized that she has always been a coach in spirit – whether helping friends find jobs they love, encouraging team members to build upon their passions, or serving as a confidante to executives. All this, and she is no stranger to resilience, having lived through more than one challenging life chapter followed by a phoenix rising experience. Perhaps most relevant to our chat in this episode: she’s a survivor of Lyme disease. Her experience is best captured by the Mizuta Masahide haiku, “Barn’s burnt down – now I can see the moon.”
Tune in as Gena shares:
- that she was likely bitten by a Lyme-carrying tick as a child, but wasn’t diagnosed until she was a teen
- that antibiotics had shot her immune system, and she was plagued with bacterial infections
- that it took her five years to heal once she started to exhibit symptoms
- the role of mindset shift in her healing journey
- why she had to love herself as much as (or more than) she despised her illness
- the importance of consistent holistic wellness in her ongoing health
- that she hasn’t had symptoms for over a decade now
- how her relationship to her body has changed through her healing journey
- that she started therapy when she was experiencing Lyme symptoms — and how vital mental health support was during that time
- that she was intermittently told by medical professionals that her symptoms were all in her head
- how getting sick — and getting well — has been a gateway for her to uncover her most authentic self
Dr. Micah Yu is an integrative rheumatologist who incorporates complementary medicine with traditional rheumatology. He is double board-certified in internal medicine and lifestyle medicine. He obtained his MD from Chicago Medical School, and holds a Masters in Healthcare Administration and Biomedical sciences. He completed his internal medicine residency and rheumatology fellowship at Loma Linda University in Southern California. He is currently in his 2nd fellowship at the Andrew Weil Integrative Medicine Fellowship at the University of Arizona. Dr. Yu is not only a doctor but he is also a patient himself. He has spondyloarthritis and gout, and uses his social media presence to bring awareness to autoimmune disease and chronic pain, and to unpack how we can use complementary medicine to fight these problems. Basically: he’s the doc we’ve all been looking for. And in this episode, we also dug into the COVID vaccine…is it safe for autoimmune disease patients? Tune in to find out!
Tune in as Dr. Yu shares:
- that he works with his wife, who is a family doctor also certified in lifestyle medicine…and lives with ADHD and IBS herself
- that he developed gout — an arthritis disease — after going on the Atkins diet as a teen
- that in college, his gout evolved into severe arthritis
- how he pushed through his pain during medical school
- that he was drawn to specializing in rheumatology because of his own diagnosis
- that he was never offered mental health or nutrition/lifestyle support for his diagnosis of spondyloarthritis — and it’s inspired him to become the doctor he is today, and buck the system
- hat chronic diseases are increasing by 7% a year
- that he used to see his diagnosis as a curse; but he now sees it as an asset in his work
- that lifestyle medicine centers on whole-food, plant-based nutrition
- that he was inspired after watching Forks Over Knives — and when he experimented with a plant-based diet, his inflammatory markers decreased significantly
- that he’s using lifestyle to manage his health, and is trying to avoid medication until absolutely necessary
- why he spends at least an hour with new patients
- that he’s been moonlighting two nights a week treating and admitting COVID patients to the ER
- why post-COVID syndrome is so frightening
- that he’s witnessed new-onset autoimmune disease following COVID infections in formerly able-bodied people who had a genetic predisposition to the diagnoses
- how the flu vaccine compares to the COVID vaccine
- what mRNA and adenovirus are
- that mRNA and adenovirus do not alter genetic code or DNA
- the short-term side effects of the COVID vaccine
- that the COVID vaccine has indeed been tested thoroughly, and no less so than any other vaccine released to the public
- that, in VERY rare cases, it’s possible to contract autoimmune disease because of vaccination — and that this is known as ASIA (autoimmune induced by adjuvants) syndrome
- that he practices remotely, and currently has 15 state licenses in order to serve his patients
- his take on the US healthcare system
Artist Rana Awadallah grew up surrounded by poverty, abuse, and trauma. Diagnosed with major depression and extreme anxiety at the age of 18, she always felt there was something “wrong” with her body. Then, at the age of 24 — after having dealt with chronic pain for a decade — she was diagnosed with osteoarthritis in both of her knees. Shortly after, she was diagnosed with fibromyalgia, PCOS, and possible endometriosis. Having not been taken seriously by loved ones or doctors for years, these diagnoses came as a validation. But they also signaled aggressive change. Because her pain prevented her from continuing work in her dream job (as a chef), these disabilities also created the opportunity to pursue art from home — something she’d had a passion and talent for her entire life. Within a year, she has created a thriving community of fellow Spoonies, inspiring them through her work. She’s taken on brand ambassadors, connected with leading lights in the patient advocacy community, and now…she’s ready to share her story. We are thrilled to welcome the lovely and kind Rana2.0 to Uninvisible Pod!
Tune in as Rana shares:
- that she struggled with a weak immune system as a kid
- that she started having chronic knee pain at the age of 15
- that she was recently diagnosed with osteoarthritis in both of her knees
- that her previous diagnoses of depression and anxiety were blamed for her physical issues early on — and she was brushed aside by doctors and her pain not taken seriously
- how her physical pain began affecting her ability to work
- that she experienced debilitating pain from the onset of her period — and realized eventually that it wasn’t normal
- the textbook PCOS symptoms she experienced
- how the PCOS diagnosis was validating
- that she uses cannabis regularly to manage her pain and mental health
- what her day-to-day looks like as she works around chronic pain
- how her upbringing influences her momentum to this day — the idea that she should overcome and carry on
- the importance of listening to our bodies
- that she grew up in a strict Muslim household — and her family denied her mental health struggles
- how her identity has impacted her experience in the medical industry
- why it’s vital for her to vocally support the Black disabled community
Michole J lives with rare muscle disease polymyositis (PM), which falls under the umbrella of muscular dystrophy. PM is an uncommon inflammatory disease that affects the entire body — and while Michole began to exhibit symptoms in her late 20s, she was diagnosed at age 30 with the rarest form. Living with the condition create mobility challenges, from climbing stairs, lifting objects, raising her arms, and even becoming rapidly exhausted from any kind of movement, to breathing issues due to the spread of inflammation to her lungs. Michole’s mission is to bring more awareness to invisible illness, reminding us that we may not all have the same illness (or any illness at all), but that our struggles are still the same.
Tune in as Michole shares:
- how she first started experiencing symptoms
- that it took almost three years and several hospitalizations for her to get a diagnosis
- that her symptoms overlap with numerous other chronic illnesses
- that polymyositis is a progressive disease, and largely affects her limbs
- that she was never offered mental health support along her diagnosis and treatment journey
- that she’s now got the additional diagnosis of ILD — interstitial lung disease
- the struggle of being believed when living with invisible illness
- how her mother has stepped up as an advocate for her since her diagnosis, and how they have become even closer as a result
- how caregivers experience chronic illness and disability alongside their loved ones
- the importance of remote work opportunities for her
- why the cost of healthcare and treatments can be debilitating for patients
- discrimination she’s faced from the public
- how race has impacted her experiences in the medical system (and beyond)
- her frustration with lack of representation in rare disease
- how a lack of curiosity in the healthcare system is causing problems for patients
- how she’s learned to say “no”
- why it’s useful to develop a meaningful relationship with your practitioners
Rachel Otis (she/they) is a somatic therapist, yoga teacher, abolitionist, writer, and pleasure activist who works directly, compassionately and non-judgmentally with the mind-body connection, infusing sessions, groups, retreats, and articles with radical self-love, exploration, and expression. She provides healing pathways of somatically-oriented coping tools and resources including yoga, art, supportive self-touch, guided meditation, joyful movement, vocalizations, exploring imaginational realms, and breathing techniques. They are passionate about creating a more sustainable, socially-just future by infiltrating oppressive systems to create change from the inside-out for ALL bodies. As a Queer womyn with chronic illness (Crohn’s disease), she honors those marginalized identities along with her Micmac indigenous ancestors by constantly working to decolonize and reclaim our connection to our minds and bodies. Rachel has their master’s degree in Counseling Psychology with a concentration in Somatic Psychotherapy from the California Institute of Integral Studies in San Francisco, and works on a sliding-scale, tele-therapy basis to provide accessible sessions to clients worldwide. They also offer: virtual book clubs, live somatics + yoga classes, full and new moon workshops, group therapy, diversity and inclusion trainings, oracle card readings, and will be re-launching their stateside & worldwide Resiliency Retreats once it is safe to do so!
Tune in as Rachel shares:
- that she was diagnosed with Crohn’s disease at age 14
- how body image and fatphobia informed her relationship to self from an early age
- why the transition from pediatric to adult medical care is so rough for patients
- a discussion of neurogastroenterology, and the brain-gut connection — and what it means to be a young person living with chronic illness and trauma
- how she connected to somatic therapy as a Spoonie
- how her identity as queer, indigenous, and fat has influenced her understanding of self AND the way she presents to the outside world — especially in the medical industry
- that she wrote her grad school thesis on unlearning fatphobia and medical bias
- that she’s built her entire life and career to be sustainably achievable around her chronic illness
- that she works virtually and on a sliding scale in order to make her work accessible to those who need her help the most
- her experiences of discrimination in a disabled body — and how these experiences have been intersectional with what is visible about her identity, especially her body
- that she is ineligible for stoma surgery
- what somatic therapy is
- what it means for her to decolonize her practice as a caregiver
- why mental health support is so important for anyone living with a chronic illness
- the importance of pleasure activism, and what it means
Samantha Reid is the Digital Director for Patients for Affordable Drugs. Growing up in Illinois, she suffered from a “bad stomach” and weakened immune system, having caught pneumonia nine times by the age of nine. But it wasn’t until she was in her late teens that she sought answers. A diagnosis of Crohn’s disease eventually led her into patient advocacy, where her passion for improving patient quality of life helped her find her way to P4AD. Now an active member of the Spoonie community, she’s also the creator behind the “Sicker Than Your Average” campaign, which was originally designed to help her raise money to cover her own medical bills, and has since expanded to include donations toward racial equity causes. In 2019, she had the once-in-a-lifetime opportunity to testify to Congress, where she told our elected officials that “good health is not a moral virtue, and bad health is not a moral failing.” She has also used her voice to teach us that “if your activism doesn’t include disability justice, it’s not as intersectional as you think it is.” A lover of books, feminism, friends, family, and cats, she’s the millennial we all want to be one day. Join us in welcoming this bright spark to the show!
Tune in as Samantha shares:
- that she was diagnosed with Crohn’s at age 18
- that Crohn’s disease can affect any area of the digestive tract, from the mouth to the anus
- why her relationship with the word “remission” is tricky
- the importance of boundaries in order to manage her fatigue
- a discussion about healthcare accessibility and the need for systemic change
- where improvements need to be made in the working world in terms of accommodating folks with chronic illness and disability
- her experiences of medical gaslighting
- how she gets the most out of her doctor’s visits
- what her work in lowering drug prices means to her
- why pharmaceutical price gouging is killing Americans
- that every major country in the world has made it illegal for big pharma to advertise to civilians — except for the US and New Zealand
- how her diagnosis hinders her work options because of drug pricing and access to insurance
- that funding for the research behind the development of many of the drugs that pharmaceutical companies charge us for…came from the public
- that Abbvie makes more on Humira than the profits of ALL NFL teams combined
- that she testified to Congress in favor of HR3 (which is currently stalled in the Senate, though it passed in the House)
- that we are living in an interesting time: legislators are beginning to understand that the public is holding them to their word and watching them
- the vital importance of mental health support for those living with chronic illness and disability
David Mitchell has an incurable blood cancer called multiple myeloma. The price of his current drugs is more than $875,000 per year. Like millions of Americans, David needs innovation and new drugs to survive, but he believes drugs don’t work if people can’t afford them. After more than 30 years at a D.C. policy and communications firm, he retired in December 2016 to devote his full energy to helping change policy to lower prescription drug prices. Patients For Affordable Drugs mobilizes patients and allies at the federal and state levels and does not accept funding from any organizations that profit from the development or distribution of prescription drugs. It is one of our favorite organizations, and the only one of its kind on the Hill doing this work without the funding of big pharma. Leveraging the power of patient stories, P4AD works on a bipartisan level to create policy change in favor of reduced drug pricing and eased accessibility to necessary medications and treatments. Their work is remarkable, and we are proud to have their founder on the show!
Tune in as David shares:
- how he was first diagnosed with multiple myeloma after experiencing severe back pain
- that he’s been on maintenance drugs continuously for the past 10 years — and these drugs are what have kept him alive
- that at the time of his diagnosis, the median age of survival for his form of cancer was 3-5 years; that has now increased to 8-10 years
- that myeloma mutates and finds its way around drugs — so when treatments stop working, patients typically pass
- that he plans to live to 95 and die of something else entirely
- that the disadvantageous side-effects of his drugs are manageable in comparison to the cancer itself
- how his wife stepped up as a fearless advocate for him until she herself endured breast cancer and its accompanying treatments (she’s a survivor!), and he stepped up for her
- his belief that no cancer patient should endure the “acute” stages of diagnosis and treatment alone
- the importance of looking after his physical and emotional health, and why it’s vital his work be meaningful
- what P4AD does: how they help patients share their stories and are creating communities among these patients
- that P4AD not only engages patients, but patients are also among their staff
- that there is no free market for drugs, and that drug companies have created monopolies to set drug prices and protect those monopolies in whatever way they wish
- that pharma invents groups akin to P4AD, including Patients Rising and the Alliance for Pharmaceutical Access
- how insurance and drug companies monopolize pricing and gouge patients
- where he sees the breakdown of the medical system in the US: that it’s systematically designed without the patient’s access to affordable, comprehensive care in mind
- an acknowledgement of systemic racism in medicine
- that he is also a recovering alcoholic — and has been for 30 years
Kayla Harley is a certified GYROKINESISⓇ instructor, Optimal Life Breath Pathologist, doula, and energy healer helping dancers, athletes and everyday movers alike improve their quality of movement: for breath integration and to prevent injury. She is an International Practitioner and among the forerunners in the International Association for Blacks in Dance. She believes firmly that the body has the power to heal itself through active listening and diligent response, and knows this first-hand: as she lives with trigeminal neuralgia, chronic fatigue, and muscle spasticity. Much of her healing has been in the use of holistic methods to manage her own chronic pain and fatigue, and this deep personal work has informed her practice. The work that she does is exploratory and includes Shamanic practices that naturally generate a sense of connection to the divine from the inner-being, outward. Her health and wellness brand, Beebodi, is both a journey of her personal life and testament through healing and naturopathy; as well as a guide to creating a personalized wellness plan and regimen for others.
Tune in as Kayla shares:
- that she was injured during a tour as a dancer — and that this led to all her subsequent health issues
- that she struggled to be understood by doctors and experienced gaslighting
- how her race has played into her relationship with the medical industry
- that she was initially diagnosed with chronic TMJ and eczema before being diagnosed with trigeminal neuralgia (TN)
- the importance of accepting her chronic pain — from within — in order to find solutions
- that she’s cycled through every possible medical solution to TN — from epilepsy meds to opioids
- that she now uses holistic methods to manage her pain: self-hypnosis, breath work, IV vitamins, and reflections on her experience as a doula
- what her pain feels like: and that it can travel from her face all the way to her chest
- that she experienced suicidal ideation as a result of her pain
- that she’s had to teach herself a new way of speaking in order to better manage her pain with mindful facial movement
- how she taps into her spirituality to find healing: through her religious beliefs and connection to her ancestors
- other holistic methods she uses for pain management: CBD, cannabis, and massage
- how the US healthcare system has failed her, and why she looked abroad for inspiration in her healing
- all about becoming radical about your joy
Join us as we launch a brand new series on Uninvisible Pod — INNOVATORS! In this series, we will periodically release episodes including short-form interviews with founders whose work is creating waves of change in chronic and invisible illness and disability. First up, as we dive in to the end of the year and look forward into 2021: Yale graduate Celine Tien, founder and CEO of Flowly, a mobile platform for chronic pain and anxiety management; Yael Elish, formerly co-founder and head of product at Waze and now founder of StuffThatWorks, an AI-based crowdsourcing platform where people share information in a structured way about their experiences with a chronic condition, aimed at learning which treatments work best and for whom; and finally, Dave Korsunsky, healthcare entrepreneur and founder of Heads Up Health, a mobile app and web portal that integrates all of a patient’s health records and syncs with pharmacies, clinics, and a wide range of popular health and fitness apps. Like me, you might be reading this and saying, WHOA! I was so blown away by all these individuals and what their services offer the Spoonie community, I wanted to give them an opportunity to share their stories and the importance of their work with you. So: merry happy everything, from me, Celine, Yael, and Dave…to you!
Tune in as Celine, Yael, and Dave share:
- how Flowly offers interactive experiences that teach users to control their nervous system through mobile VR and biofeedback for relaxation training
- that biofeedback is traditionally difficult to access; and now, it’s fully accessible through Flowly
- that Flowly is affiliated with University of Pittsburgh and USC to make sure their app is truly efficacious
- that the work of biofeedback — and Flowly — is in creating new neural pathways
- how Celine’s upbringing influenced her to create Flowly
- the goal of StuffThatWorks: to empower patients and medical professionals through the creation of knowledge bases that are automatically analyzed and personalized
- how the information shared through StuffThatWorks is helping build the world’s largest and most up-to-date database of patient reported outcomes for every chronic condition
- that within each community on the StuffThatWorks platform, members can see insights about anything from age of onset, to most reported and most indicative symptoms, early symptoms, indicative comorbidities, aggravating factors, treatments, and more
- how AI crowdsourcing has the potential to fill the gaps in our understanding of medicine
- that so many clinical guidelines were written decades ago — and StuffThatWorks creates the opportunity to recreate the knowledge base for various chronic conditions en masse
- why Yael started StuffThatWorks: because her daughter had a chronic condition at a young age
- how technology has the potential to eliminate bias
- how Dave was inspired to create his company after his own battle with maladaptive stress syndrome and gut health issues
- about the potentially life-saving importance of managing and monitoring our own health records
- that as the doctor/patient relationship becomes increasingly depersonalized and decentralized, it’s vital we track our own medical records to present a full picture to caregivers
- why data access is empowerment; and that in enabling people to bring their health records together in one place, patients can prevent a misdiagnosis when medical emergencies arise
- the founding principle of Heads Up Health: that well-organized data holds the key to optimal health
At the age of 10, Nitika Chopra was diagnosed with a debilitating case of psoriasis. By 19, her joints were entirely inflamed and she was further diagnosed with psoriatic arthritis. From the tips of her toes to the crown of her head, her body was covered in unsightly sores…and for the first five years of her second diagnosis, she was unable to move without severe pain. While she’s come a long way since then, the first 15 years of diagnosis and life with chronic illness left Nitika overwhelmed with pain, insecurity, and confusion…and also led to depression. But why does she share so openly about these experiences now? Because: she gets it. She resisted self-care at first, and even overdosed on self-improvement (the concept that something was “broken” and needed “fixing”) in her search for self-acceptance and love. And so she made a clear decision: to commit more to her happiness than to her suffering. With baby steps — long baths, lotions, even a little bit of glamour — she began to feel compassion for her condition, as well as for herself. Her perspective shifted from total despair to the deep faith that there was a better way. And she started to realize that she was meant for something much bigger than a life spent in misery. In 2010, her commitment to natural beauty led her to create the online lifestyle magazine Bella Life. A few years after that, she was hosting her own talk show, Naturally Beautiful. She even landed a position as a luxury skincare spokesperson and regular expert on QVC! But something was still missing. In 2019, she launched The Point of Pain podcast and Chronicon — a highly successful one-day event that finally helped her fulfill her life’s purpose: to bring together Spoonies and their allies in real talk about finding that same love and abundance in their lives that she had spent so long seeking. And, as she shares in this interview, the pandemic changed everything. While it was no longer safe to congregate in large groups, she cleverly pivoted Chronicon to an online community. We’ve been working within the community to keep this vital conversation going, while Nitika has been curating amazing content just for us: Spoonies and our loved ones. From events and guest posts to product discounts and giveaways, she has given us a window into what CAN be for this community; with hope, prosperity, and inspiration round every corner. Help us welcome Nitika back to the show!
Tune in as Nitika shares:
- that she didn’t feel comfortable leading conversation about her chronic illnesses until 2017
- how she has grown as a patient advocate — and what this role means to her
- how she understands “toxic positivity”
- how she pivoted from Chronicon as an in-person event to an online community, as a result of COVID
- why the Chronicon Community is about meeting you where you are
- how to join the Chronicon Community
- how she showcases community members regularly in the Chronicon Community
- how Chronicon addresses the decolonization of wellness
- how she views diversity in advocacy
- what future events in the Chronicon Community are looking like
- how her morning routine really helps keep her balanced
- why it’s important to invest in your relationships
- why — as Toi Derricote says — joy is an act of resistance
Jaime Sanders’ journey with migraine has been life-long. From a toddler with abdominal migraine to a wife and mother with chronic intractable migraine, Jaime has learned to turn her pain into empowerment. She also manages her daily life with depression and anxiety, surviving two suicide attempts, along with fibromyalgia, carpal tunnel syndrome, spinal stenosis and chronic back pain. Despite these conditions and their limitations, she strives to do her best to find her optimal health. Advocating for headache disorders and mental health are her passions. She is the author of the award-wining blogThe Migraine Diva, and was the Migraine Patient Advocacy Coordinator for Global Healthy Living Foundation. Through her work with GHLF, Jaime contributed as a patient reviewer for their First Edition Migraine Patient Guidelines. She is also partnered with the American Migraine Foundation and Shades for Migraine and is a stakeholder with the Coalition for Headache and Migraine Patients and the Headache and Migraine Policy Forum. Jaime is a member of the Society for Women’s Health Research Interdisciplinary Migraine Network and helped to curate their Migraine Patient Toolkit. She also sits on the Patient Leadership Council with the National Headache Foundation. Through her advocacy work and blog, Jaime’s mission is to make a very invisible disease visible to the rest of the world and validate the real pain of millions. You can find her written work on Migraine.com, Teva’s Life Effects Program sponsored by Healthline Media, NewLifeOutlook.com, HealthCentral.com, and PracticalPainManagement.com.
Tune in as Jaime shares:
- that she was diagnosed with migraine at eight years old
- that she has lived in chronic pain since the age of two — in the form of abdominal migraine
- that her mom also lived with migraine — and as such, she had a shoulder to lean on from the very beginning, as well as someone to learn advocacy from
- that having support from such a young age was critical to the foundation of her advocacy work
- how chronic pain is directly connected to mental health — and that she lived with depression from an early age because of her pain
- that she was diagnosed with fibromyalgia in 2012
- that she developed fibromyalgia as a direct result of persistent daily migraines, which had her central nervous system working in overdrive
- that migraines often have no known cause, and are totally individual to the person who lives with them
- that she manages her pain with a combination of medications and holistic methods: Botox, nerve blocks, massage, CBD salves, and meditation, among others
- that the pain scale is subjective, and her pain is at level 2-5 daily
- that aside from chronic pain, she also lives with gastric distress symptoms every day — and how the brain-gut connection is so clear when you live with chronic pain conditions
- how she finds self-worth and confidence in her relationships…and beyond her pain
- how she minimizes stress to manage her spoons
- how she tackles the “angry Black woman” and “hysterical” narratives
- that migraine is so much more than a headache
- what’s coming up for her: she is the lead writer on a new white paper aiming to address disparities in communities adversely affected by migraine and headache (the incarcerated, immigrants, and BIPOC, among others)
Born and raised in South Carolina, 27-year-old Brittany Sumner always felt like she was different than her peers — both physically and mentally. At an early age, she began falling over without explanation, finding herself unable to climb stairs, going cross-eyed, experiencing slurred speech, choking on food, and feeling almost constant fatigue. It took some time to find a specialist who truly saw her symptoms as something more, and was finally able to diagnose her with a rare condition called Paramyotonia congenita (PMC). While the diagnosis gave her a sense of relief, it also scared her. What if she couldn't do the things she loved so much? What if she couldn't get a job because of her muscle disorder? Fast forward to her adult life: she is a wildlife biologist, outdoor educator, and conservationist. While she’s currently unemployed because of COVID-19, before the pandemic started she was working as a naturalist — taking students on hikes, teaching them about ecology and the outdoors, and leading conservation and sustainability study-abroad trips for high school students. Her passion is the environment and teaching the next generation about the importance of protecting it. While she’s busy inspiring kids, her students inspire her to get out of bed each morning, too — especially when she is having a bad pain day. In her free time, she loves to kayak, garden, hike, read, and spend time with her new niece!
Tune in as Brittany shares:
- how she realized something was up…her muscles were recovering much more slowly and keeping her behind her peers physically, among other symptoms
- that she grew up in rural South Carolina, which affected access to the right kind of medical care for her condition
- that adrenaline makes her condition worse — so a fight-or-flight reaction can be very dangerous for her
- that the diagnosis was, in part, a relief for her — because it validated her sense that she was living with a condition that was affecting her body
- that PMC requires genetic testing to confirm — but nobody in her family has the gene mutation. However, there’s a 50% chance she can pass the disorder to her future children
- that PMC isn’t curable, and that the side-effects of medications she tried actually made her symptoms worse — she she opted out of medication and turned to lifestyle and nutrition
- that potassium and sodium most directly affect her muscle spasms
- that figuring out her triggers and symptom management has been a process of trial and error
- that she only connected to others living with PMC in recent years
- that the severity of symptoms and response to treatment varies widely from patient to patient
- her keys to successful movement: water, breaks, and snacks
- that extreme cold can cause paralysis for her
- how she’s working on communicating about her condition — especially because it’s invisible
- how gender has impacted her medical care
- how awareness is impacted by lack of research funding, and vice versa — where rare diseases often get lost in the shuffle
- that those living with PMC can’t go under general anesthesia (because of its potassium content) — and she still needs to figure out how to alert emergency care if necessary
- how she finds solace in nature
Jeniece Dortch is a mom of six, her children ranging in age from 4-16 years. She has a passion for the special needs community that was born when her second-eldest son, Christian Garcia, was diagnosed with autism and epilepsy. She not only saw the need to advocate for these communities, but for the entire family unit (even those who are able-bodied) as inclusive members of the special needs community. With this idea in mind, she formed Special Needs Siblings, Inc. — a nonprofit committed to raising awareness, support and resources for the siblings of disabled individuals. Now a public speaker, writer, and blogger who fights for both the special needs and minority communities, Jeniece has also founded JLQ Marketing, an organization that focuses on helping non-profits grow. She created this company along with her loving husband, Thomas Dortch III (and they were recently married, so send them some extra celebratory love!). Jeniece and Thomas continue this mission to give underserved communities and organizations a voice.
Tune in as Jeniece shares:
- that she knew her son, Christian, had a seizure disorder around age 2, when he had a grand mal
- that it took more than one doctor to diagnose Christian — and Jeniece was empowered to seek second opinions because her mother is an anesthetist, an “insider” in the medical industry
- that Christian was diagnosed on the autism spectrum at the age of 3
- that Christian is largely non-verbal, but clearly engaged with the world around him
- why she founded Special Needs Siblings
- the role of caregiving and the importance of support for siblings and parents of individuals living with disabilities and/or special needs
- how she’s tackling home school during the pandemic — with 6 kids at home!
- experiences of discrimination she’s faced in medical and community settings, and how she’s had to stand up for Christian’s needs against pushback
- what makes a good medical provider
- what’s next for Special Needs Siblings and for Christian’s care
In May 2016, Kelly Cervantes and her family received two life-changing pieces of news: her husband, Miguel, had landed the starring role of Alexander Hamilton in Hamilton: An American Musical in Chicago; and their then-7-months-old baby girl, Adelaide, was diagnosed with epilepsy — and eventually, infantile spasms — a severe form of childhood epilepsy. She transitioned from being the family’s primary bread-winner to a stay-at-home mom and full-time caregiver. Eventually, she found her voice and purpose with the non-profit Citizens United for Research in Epilepsy (CURE), where she is currently a board member. The family hoped that science would catch up to their daughter…but that was not meant to be. Adelaide passed away due to complications of an as-yet-still-unidentified neuro-degenerative disorder…5 days shy of her 4th birthday, and just weeks before Kelly was to receive a WEGO Health Award for her contributions to patient advocacy blogging for Inchstones. In a demonstration of incredible resilience, Kelly made a public promise to her daughter: even though Adelaide’s battle was over, she would continue to fight for families affected by medically-complex disorders. By organizing fundraising campaigns, speaking at epilepsy events across the country, continuing her writing, and hosting CURE’s podcast Seizing Life, she makes sure Adelaide’s struggles were not in vain, and keeps hope alive for all the Adelaides to come. Her hope is that in publicly sharing her family’s journey with epilepsy and the real-life moments that come with parenting and grieving a special needs child, other parents in similar situations will learn they are not alone.
Tune in as Kelly shares:
- how Adelaide was initially diagnosed as an infant
- that Adelaide’s longest stretch seizure-free was three months long
- that in 30% of epilepsy patients, seizures are intractable despite intervention
- that 1 in 26 people will be diagnosed with epilepsy in their lifetime
- that while certain types of epilepsy can be rare, epilepsy itself is not
- that there is a lot of stigma attached to the diagnosis — especially for adults
- why NOT to call an ambulance when you see someone having a seizure
- that epilepsy is always a symptom of something else: from TBI (traumatic brain injury) to genetics
- the need for more funding in epilepsy research
- how she acted as an advocate for her daughter
- how she learned to speak medical jargon to be taken more seriously by Adelaide’s doctors
- the importance of mental health support in the grief journey
- that Adelaide also had MCAS (mast cell activation syndrome) alongside her epilepsy — and her epileptologists often saw these comorbidities occur together
- why research gives her hope
- the importance of documenting seizures with video
Natalie Y. Beavers is an award-winning epilepsy survivor, advocate, and founder of the Angels Of Epilepsy Foundation, a non-profit organization that brings awareness, education, and community to epilepsy survivors and their families nationwide. Diagnosed with epilepsy at the age of 5, a seizure while she was driving in 2006 caused a life-changing and tragic car accident. Subsequently, doctors informed her that there was damaged tissue on her left temporal lobe and a cyst on her brain. While two craniotomies have decreased her seizure activity, the cyst remains — so she still experiences seizures from time to time. Her many hospitalizations introduced Natalie to fellow epilepsy survivors and their families, and in 2008 she launched Angels of Epilepsy as a response to the community — to provide deeper support networks and fulfill needs from transportation to medical IDs, among others. Because of her disorder, Natalie continues to experience short-term memory loss — a common side-effect of epilepsy. In a doctor’s appointment in 2013, she couldn’t recall details of recent seizures…so she decided to create and publish The Seizure Diary, which aids those experiencing seizures in tracking their episodes and being able to report back to medical professionals with greater detail and accuracy. Most recently, she has also co-authored Hacking Healthcare with Lauren. What started as a guide to the US healthcare system for the Black community has now become a project with much wider range and significance; an ever-evolving document to provide support and resources to anyone relying on healthcare and finding themselves all at sea.
Tune in as Natalie shares:
- how she was first diagnosed with epilepsy
- that she’s had periods of seizure inactivity that have enabled her to go off medication
- that by the age of 28, damaged tissue on her left temporal lobe had expanded — and a surgical implant was suggested in order to remove the tissue safely
- that the cyst on her brain has never been removed, because its removal could paralyze her
- that surgery really helped control her seizures, and reduced their severity and occurrence by about 80%
- how her family has provided her with emotional and practical support
- why she is a cannabis advocate
- that meditation has been an effective coping mechanism to control seizure activity
- when and how she reveals her condition to dates, employers, and the like
- why she founded Angels of Epilepsy
An educator for over 20 years, Vatesha Bouler is a kindergarten teacher and (almost!) six-year breast cancer survivor. Diagnosed at a relatively young age, her experience pushed her to believe that life must be lived to the fullest — and she walks that walk every day in her advocacy work for others enduring similar experiences. A public speaker and author, she is one of the writers of Beyond Her Reflection, wherein she shares her healthcare story. A woman of faith, she also serves on the Cancer Support Ministry at her church, and has found continued love and support not only in her religious community, but also among friends and family who rallied to assist her in her healing. She recently launched the podcast Tesha’s Tea Room, where she interviews prominent survivors and practitioners in the breast cancer community about life during and after diagnosis.
Tune in as Vatesha shares:
- that she was diagnosed with stage 2B breast cancer at 36
- that she was referred to a fertility clinic to freeze her eggs before treatment started
- that she had a lumpectomy because she was negative for the BRCA gene; additionally, she endured chemo and radiation
- that the most devastating result of her chemo was the loss of her hair
- that her 6th anniversary is on 11/29 this year
- how strong she feels having defeated cancer
- that she will be living with the fear or recurrence for the rest of her life
- how she’s organized her present and future lifestyle around ongoing prevention
- the importance of mental health support for life-changing diagnosis and treatment
- why her health isn’t hers alone — it belongs to a community
- the importance of Black female voices in breast cancer care
- why it’s vital we know our family health history
Bassima Mroue is a Lebanese-American entrepreneur with over a decade’s worth of experience working with heavyweights like Nike and Spanx. As a board member of the Sara Blakely Foundation, she is an active supporter of female empowerment — as she so beautifully demonstrates in her 2012 TEDx Portland talk. Passionate for developing purpose-driven brands, inspiring women, and destigmatizing self-care, Bassima calls upon her diverse professional experience to revolutionize the way we approach beauty and wellness from the inside out…because, as she can attest, the revolution begins WITHIN. Diagnosed with endometriosis and living with chronic back pain and finding herself at odds with traditional healing methods, she turned to naturopathy…where her doctor (and now fellow co-founder) suggested she try ingesting collagen for gut healing and pain management. Bassima struggled to find a tasty way to do so…but also found this approach to be life-changing. And so, SkinTē was born: a “perfectionist formula made with collagen peptides, real brewed tea, super herbs, and fizz.” Ya know…a fun way to get your collagen, day-to-day.
Tune in as Bassima shares:
- that she was diagnosed with stage 4 endometriosis and chronic back pain
- that she was told for 2 years that her pain was all in her head
- that she had endometriosis excision surgery — and it was a 5-hour procedure
- that stress and lifestyle really contributed to her back pain
- that working with one of her SkinTē co-founders, Dr. Amy Bader, to get on an anti-inflammatory diet helped alleviate numerous symptoms — but she still required surgery
- how she’s optimized her work-life with her health at the forefront of her mind
- her experience with pain suppression — and how it took a doctor to advise her to speak up sooner: “Do not wait for the knife to hit your bone”
- how she has operated in corporate environments to liberate her own story of pain and hormonal imbalance
- how her illnesses — and Dr. Bader’s patients — inspired them to partner with chef Elizabeth Zieg in creating SkinTē to make collagen ingestion more enjoyable
- how collagen has aided in her healing — especially her joints and gut (and the data behind collagen ingestion)
- the importance of functional medicine, and how she has accessed it through Parsley Health
- how she has learned to see food as medicine
When she first met her new gynecologist, Lauren R. Kornegay was introduced to a disorder that was unfamiliar to her at the time: endometriosis. Diagnosed at the age of 20, she experienced the pain, struggles, exhaustion, and confusion that accompany the disease. This led her on a search to find someone who looked like her — who was also living with the same diagnosis. Each time, she came up empty-handed. Due to a lack of representation and acknowledgement of Black women affected by endometriosis, she felt entirely alone. She found herself in support groups being dismissed, accused of being racist, or chastised for speaking up about the lack of awareness of anyone who didn’t resemble the primary demographic of the disease (ahem, white women). In 2015, in direct response to these experiences, she created her own community: ENDO Black, a platform designed to connect women of color affected by endometriosis, bringing them together to heal and advocate. Her goal is not only to give women of color living with endometriosis a network, but also to raise awareness among doctors and other medical professionals of the lack of representation in reproductive health research and dialogues…so they can begin to (finally) understand that endometriosis affects women of color differently — from both a medical and cultural perspective. Lauren is also a founding member of the LOLA Collective and has recently become one of the co-founders of the Black Women’s Health Coalition.
Tune in as Lauren shares:
- that her gynecologist first discovered she has a tilted uterus — a common trait often associated with endometriosis
- that she was diagnosed with endometriosis in 2011
- that she manages endo with lifestyle and diet changes, but still lives with chronic pain, nausea, allergies, and brain fog
- the importance of advocating for oneself when it comes to healthcare
- why self-advocacy is harder as a Black woman — because of prejudice associated with the trope of the “angry Black woman”
- how her symptoms have changed over time
- that endometriosis is a multi-systemic disease
- how her diagnosis has affected her relationships
- how she practices self-care
- why it’s important to be organized when you live with a chronic illness
- her experience of medical and systemic racism, especially in relation to women’s health
- why she founded ENDO Black: because she couldn’t find other Black women living with endometriosis
- about the Black Women’s Health Coalition
Nkem Osian is a Public Health Analyst at the United States Department of Health and Human Services, where she analyzes and monitors Ryan White HIV/AIDS Programs in Los Angeles County. In this role, she ensures the uninsured, underinsured, and vulnerable individuals with HIV have access to optimal, life-saving treatment and care. In addition, Nkem is a patient advocate and member of the board of The White Dress Project (WDP), an organization focused on raising national awareness about the uterine fibroid epidemic and in filling the gaps in care, education, and research in the field. She herself lives with uterine fibroids, and shares her story to help break down the walls of silence that surround this common — and commonly unknown — gynecological condition.
Tune in as Nkem shares:
- that she was first diagnosed with uterine fibroids in 2015 because of excessive bleeding and clots
- that she normalized her body’s gynecological dysfunction until she was entirely unable to function at all
- that she developed cardiomegaly (enlarged heart) to compensate for the lack of blood in her body caused by uterine fibroids
- that she has yet to have fibroid surgery because of (not unreasonable) fears about the process
- that she has been prescribed various forms of birth control to manage her bleeding
- that BC is masking her symptoms and not treating the root cause, but she’s been working through her own fears about fibroid surgery
- her concerns about fertility in relation to the presence of her fibroids
- that she didn’t know how to effectively advocate for herself until she became a member of The White Dress Project
- that she felt immense shame about her diagnosis until she made a friend who showed compassion and encouraged her to seek further care (and yes, people who work at HHS can indeed feel timid about their own health!)
- that based on her research, individuals living with HIV are more likely to be victims of intimate partner violence (IPV)…and those living with intimate partner violence are more likely to contract HIV
- the importance of community in patient advocacy — and how this work can strengthen our humanity
- how collective action can make a difference
- how fibroids have affected her relationships and experiences
- from whence she draws her strength
- why your relationship with your healthcare providers should be a partnership in your care
Jahlove Serrano is a health educator, youth advocate, HIV/AIDS activist, androgynous model/runway coach, drag Queen, background dancer, and choreographer to the stars. He's a Guatemalan/American native of the Bronx, New York, and contracted HIV a couple of days shy of his 16th birthday. Upon diagnosis — and as he learned more about the experiences that led to diagnosis — he decided to take a leadership role in his community with the public admission of his HIV status. Working in the field of HIV/AIDS prevention, outreach, and research (on a local, national, and global scale), his mission is to combat the ignorance and stigma around HIV/AIDS and to address the needs of HIV-positive — and negative — youth. Jahlove has worked with NY AIDS Institute, National Gay Mens Advocacy Coalition, The Global Network of People Living with HIV/AIDS North America (GNP+NA), AIDS ALLIANCES, The White House, and The Department of Health. He's currently featured in NYC’s Care campaign, the national HIV Stops With Me campaign, and globally in Janssen’s Positively Fearless campaign. Jahlove uses his entertainment platform to promote HIV/AIDS awareness and education throughout the United States and beyond. And…he’s both insightful and open, while maintaining a joy and positivity we can ALL connect to.
Tune in as Jahlove shares:
- that Sex Ed when he was a teen was entirely hetero-focused, and as such, excluded him from the conversation
- that he contracted HIV when he lost his virginity at the age of 16, and later recognized the incident was rape
- that his mother kicked him out of the house and he was rendered homeless not long after
- that according to NYS law, any individual 13 years of age or older can get privately tested for any STD and pregnancy — and get treatment — as long as they give consent to their healthcare providers
- that there are actually two different strains of HIV
- that in the US, HIV/AIDS is primarily contracted by men who have sexual contact with other men; but that globally, HIV/AIDS is primarily a disease contracted by individuals engaging in heterosexual sex
- that his diagnosis inspired him to go back to high school, get into college, and begin to pursue a career as a dancer and entertainer
- that it took years of ill health — and an AIDS and cancer diagnosis in 2008 — for him to confront his diagnosis and start taking his medication regularly
- why your health is your own responsibility
- that so much ignorance and stigma about HIV/AIDS still persists, and that he combats that in his work both as an educator and as an entertainer
- that he has found joy and resilience in his advocacy work — a joy and resilience that touches each of his intersectional identities as a Black gay HIV+ man living in America
- why the trans community is so important to him
- a background lesson in the early AIDS epidemic — and the role of medical racism, homo- and transphobia in early AIDS advocacy
- why his work in public policy is so important to him
- his commitment to make and hold space for the next generation of advocates
Giuliani Alvarenga is an award-winning writer and law student living in New Orleans. A familiar face to those who have watched Trust Me, I’m Sick, they are HIV-undetectable and have a Bachelor's degree in English Literature and Gender & Women's Studies from the University of California, Berkeley. Giuli is also affiliated with the Centers for Disease Control (CDC), and a student liaison for the American Bar Association's Health Law Section. They are also involved in immigration rights as a public health issue, and speak on this topic in partnership with various organizations, as well as contributing writing to TheBody.com alongside last week’s guest, Charles Sanchez. In 2019, they received a Marguerite Casey Foundation scholarship to report and write a story on the chronically ill Latinx women of Los Angeles. Giuli was featured on the April/May 2018 cover of POZ Magazine, selected as one of the POZ 100 in 2019, and has also appeared on CNN en Español.
Tune in as Giuliani shares:
- that they received their status abruptly while living in the Bay Area; but with the help of a wonderful case director, became undetectable within a month
- how understanding their friends and romantic partners have been about their diagnosis
- that being HIV-undetectable means they cannot transmit the virus to anyone
- the importance of open communication with potential lovers
- how they’re addressing HIV laws in Louisiana, which often stigmatize and criminalize HIV+ individuals
- how they have learned from their past and are using their experience as a tool to create change
- why racial bias in healthcare is a public health crisis, and needs to be addressed in the legal field
- that they are an ambassador for the CDC’s Let’s Stop HIV Together campaign
- how housing, detention, and immigration play a role in public health
- why advocating for people over property and profit is essential for universal healing
Charles Sanchez is a Mexican-American, gay, HIV+ writer, performer, director and advocate living in New York City. He is one of the co-founders of Skipping Boyz Productions, and conceived, writes and stars in the award-winning musical comedy web series Merce. In 2003, he was diagnosed with AIDS and began his journey to becoming an activist and advocate. He has attended the national AIDSWatch conference in Washington D.C. four times and has been featured in public service videos for the CDC’s “Start Talking. Stop HIV.” campaign, as well as for Remedy Health Media and EverydayHealth.com. He was included in Healthline.com's list of HIV Honors: The Most Influential Voices of 2017, and was honored in POZ Magazine's 2018 POZ 100, celebrating people over 50 making a difference in the fight against HIV and the stigma surrounding it. Sanchez has been a Contributing Editor for TheBody.com since 2017, and has had essays published on PositivelyAware.com, Them.us and HuffPost Queer Voices. In the spring of 2020, he began hosting a live interview show on Instagram for TheBody, called “At Home With”, featuring prominent members of the HIV and LGBTQ+ community.
Tune in as Charles shares:
- how he was first diagnosed with AIDS in 2003, and almost died
- that he’s had only positive experiences with his doctors since being diagnosed
- how he balances holistic and medical treatments for HIV
- that he took advantage of mental health care support early on, and continued to do so
- a discussion of the stigmas associated with an HIV diagnosis
- why he believes in universal healthcare
- the importance of community when living with chronic illness and disability
- how dance nourishes him
- the importance of perspective and openness to new information
A native of Nigeria, Ade Adeyokunnu emigrated with his family as a child and grew up in Maryland. Currently living in the Philadelphia area (and a newlywed!), he’s been passionate about sickle cell disease advocacy for as long as he can remember — perhaps because both he and his younger sister, Bukky, both live with the diagnosis. It’s what drove him to create SikCell, the first online community for people living with sickle cell disease, in 2009. When living with what can feel like an isolating and often-misunderstood chronic condition, Ade firmly believes that building a support network of people who understand what you’re going through is crucial to long-term quality of life.
Tune in as Ade shares:
- that testing for sickle cell among infants was limited in Nigeria when he was growing up there
- how being the child of immigrants has influenced his healthcare experience
- the impact of religion on his upbringing — and how it intersected with perceptions of his diagnosis
- that sickle cell is often stigmatized in African cultures
- that he didn’t start advocating for himself until he was in grad school
- that on average, he is hospitalized in crisis 2-3 times per year
- that he has often faced racism in the ER — which, of course, has only exacerbated stress and pain
- that it was a blessing in disguise to grow up with a sister who understood his disease experience
- that bone marrow transplant is currently the only viable cure for sickle cell
Bukky Adeyokunnu is a self-taught portrait photographer and filmmaker. Born in Lagos, Nigeria and bred in Prince George’s County, Maryland, Bukky tells visual stories of women, health, and the immigrant experience. She began her journey in 2015 and has since become a Dean’s Collection artist, been featured in xoNecole for The Warrior Series, a photo series which captures how three strong women triumph over sickle cell disease, and local exhibitions including Washington D.C.’s Mayor Muriel Bowser Presents 202Creates - LOVE series. Bukky is based now based in Northeast Washington, D.C. and is available for commissions and collaborations. As you will discover, she’s not alone in her sickle cell journey, either…her older brother, Ade, also lives with the diagnosis.
Tune in as Bukky shares:
- that her older brother, Ade (next week’s guest!) also has sickle cell
- her biggest crisis triggers: chief among them, stress
- that the transition from pediatric to adult care was a shock to her system
- her experiences of medical trauma and racism
- the push-pull between her ambitions and her body’s needs
- the struggle to have her pain taken seriously in a medical setting
- that she recently changed care to a Black female doctor at Johns Hopkins Hospital, and was incredibly touched by the experience — because her doctor implicitly understood her
- about using her photography as a form of advocacy, in “The Warrior Series” — where she photographs sickle cell warriors looking strong, in order to shift prevailing narratives
- the history of racism at Johns Hopkins — including, most infamously, their treatment of Henrietta Lacks
- how she practices self-care
- that the patient advocacy space is very white-dominated
Revée Agyepong is a registered nurse specializing in neonatal intensive care and based in Edmonton, Alberta, Canada. She currently works in the Pediatric Hematology Clinic at the Stollery Children’s Hospital as the Sickle Cell Disease Nurse…which is fitting, considering that until recently, she was living with sickle cell disease herself. In late 2017, she received an allogenic stem cell transplant to cure sickle cell anemia, thanks to her sister’s bone marrow donation. After 25 years of hospital admissions and countless treatments, Revée made history as the first adult in Alberta to receive this disease-reversing — and life-changing — treatment. A member of the Not Just You Sickle Cell Transplant Alliance for Research and the Canadian Hemoglobinopathy Nurses Group, Revée is passionate about inspiring, encouraging, supporting, and advocating for the sickle cell community. Come along with her on this beautiful story of perseverance, determination, and faith…and help us congratulate Revée as she has just launched her new business venture, inspired by her health experience…a natural home, hair, and skincare line called Rêve Naturals, designed to help others reduce toxins in their day-to-day!
Tune in as Revée shares:
- what it was like growing up with sickle cell
- how growing up with chronic illness tested her faith
- how her treatments developed over time before her remission
- how her health experiences drew her into a career in medicine
- how she became the first adult in Alberta to undergo a stem cell transplant to cure sickle cell
- that her sister was a perfect bone marrow match, and donated for her stem cell treatment
- that she’s gone from sickle cell patient to transplant patient
- that she’s officially sickle-cell-free — and that this strangely sent her into a kind of identity crisis
- that as a transplant patient, she doesn’t fit into the “traditional” model of aftercare support
- that for her, transplant was a choice — but for most recipients, transplant is the only option
- how her sister’s advocacy played a role in inspiring her to be a patient advocate
- how she became expert at playing down her own pain
Sabrina Marie Vera is a proud first-generation college graduate, Puerto Rican woman, and HHT survivor. She and her family suffer from Hereditary Hemorrhagic Telangiectasia (HHT), a rare genetic blood disease that took brother Robert’s life 15 years ago. HHT affects about 1.4 million people worldwide and has no cure. Sabrina graduated from Pomona College with a B.A. in Politics as a proud Gates Millennium, Chicago Posse, and Coca-Cola scholar. For her senior project “How the Marginalized Mobilize,” Sabrina explored the political theory underpinnings of activism in three distinct communities that all relate to her identity. She looked at disability rights activism in reunified Germany, digital queer activism in the MENA region post-Arab Spring, and the radical, anti-colonial activism of Puerto Rican Americans in the late 1960s. Sabrina, along with her mother, is the co-founder of the social change initiative and online platform Living with HHT, which connects over 2,000 patients worldwide suffering from HHT from all over the world, from New Zealand to India. Sabrina plans on going to law school after her gap years as a Global Writing and Speaking Fellow at NYU Shanghai. Her goal is to be a lifelong advocate for people with rare and chronic diseases both in and out of the courtroom.
Tune in as Sabrina shares:
- that HHT is genetic, and runs in her family
- that HHT causes the development of AVMs (arteriovenous malformations, which cause a tangle of blood vessels that disrupt normal blood flow), which require surgery to repair
- that HHT can seemingly affect anybody, regardless of race or gender; 90% of HHT patients also remain undiagnosed
- how race and gender have affected her experiences in the healthcare system
- that in the past, she has been rendered invisible, and not believed (in the healthcare system)
- that about 50% of HHT patients experience a chest pain called pleurisy — and not enough research has been done to prove whether or not pleurisy is caused by AVMs, repair coils, or HHT itself
- that she has a cerebral AVM, and her brother died from a stroke and seizures caused by one
- the problems with mental health support in the US healthcare system, particularly for those who are living with comorbid chronic conditions
- how important it is for her to bring her culture and her pride to any table at which she sits
- why claiming her sexuality is so important to her — and that for women, sexuality and success are NOT mutually exclusive
Amanda DeJesus was the recipient of a heart transplant at the age of 15. Inspired by her need to eat heart-healthy, she developed a passion for cooking and trained as a chef, graduating from the Art Institute of Houston in Texas. With her friend and stroke survivor Kelly Fucheck, she is co-host of the podcast Unfiltered Survivors. In 2017, Amanda served as a spokeswomen for the American Heart Association’s Go Red for Women campaign; she continues to volunteer with the AHA, and is also affiliated with Donate Life America and Lyfebulb. As a chef, she continues to serve clients seeking to find heart-healthy alternatives to their favorite dishes, assisting patients who are undergoing lifestyle changes and providing support and education — from shopping to cooking lessons. She is currently on the list for a second heart and kidney transplant, so tune in and join us in wishing her luck!
Tune in as Amanda shares:
- that Amanda’s sister was also born with a heart defect — which was repaired when she was a baby
- that Amanda had her first open-heart surgery at 7 days old
- that at 12 years old, her doctors discovered she had dilated cardiomyopathy — and gave her a pacemaker
- that her heart was failing by age 13, and she had her transplant at 15
- that most heart transplants last a decade — and Amanda’s has now lasted well beyond expectation
- that she needs a kidney transplant along with her heart — and the kidney transplant is necessary because of long-term use of anti-rejection drugs
- that she’s currently doing dialysis 3 days a week
- that heart attacks have traditionally been regarded as a “white man’s disease” — and that only recently has research shown symptoms to present differently in women
- her experiences of discrimination in the medical system
- that the privatization of healthcare has threatened her family’s stability on numerous occasions
- the importance of bridging the gap between pediatric and adult healthcare
- that she lost friends who were lost in the system during the transition to adult care
- the problems with the US healthcare system, and how it’s linked so closely to education and access to healthy food
- how understanding her own mortality has made her bold and live life without regrets
- the importance of mental health support when living with chronic illness
- how joining her community and speaking about her struggles has given her strength
- that she’s had to learn that spontaneity is OK
Kendall Ciesemier is the executive producer of multimedia for the ACLU. A multi-award-winning reporter, producer, writer, and social entrepreneur, she founded Kids Caring 4 Kids — an organization that empowers young people and helps provide access to clean water, healthcare, food, and education to children living in Zambia, Kenya, and South Africa — at the age of 11. While attending Georgetown University, she co-founded OWN IT, a national women’s initiative that empowers and inspires college-age women by providing access to 21st-century female leaders through summits focused on said leadership, diversity, accessibility, and feminism. Kendall came to prominence as a journalist through her work with digital news company Mic. Her interview with Alice Marie Johnson, a woman serving life in prison without parole for a first-time nonviolent drug offense, caught Kim Kardashian West’s eye. Kardashian West then successfully lobbied President Trump to grant Johnson clemency — and Kendall produced a series of reported pieces alongside the effort, catapulting the story to make international headlines and result in real-world impact. She has also worked at The New York Times and CBS This Morning, and is the co-host of podcast That That Don’t Kill Me. Most prominently, she has been honored as the 2014 Glamour Magazine College Woman of the Year, a Chicagoan of the Year by Chicago Magazine, Zeitgeist Young Mind by Google, and one of Youth Service America’s Top 25 Most Powerful and Influential Young People. She’s given a TED Talk, rubbed shoulders with Hoda Kotb and Kathie Lee Gifford on the TODAY, Show, and even been sandwiched between President Clinton and Oprah on her eponymous show. All this…and she’s also survived two liver transplants. Here, we turn the mic toward Kendall to hear her story: how she was diagnosed with chronic liver disease as a child, the organ donation process, and how she maintains her health to this day. Her story is one of triumph against the odds — and she knows it. Tune in to learn more about this incredible woman!
Tune in as Kendall shares:
- that she was diagnosed with pediatric liver disease biliary atresia at 8 weeks old — and had her first surgery at that age, as well
- that she had her second surgery at 4 years old — and a grand total of 6 major liver surgeries, to date
- that she had 2 liver transplants at 11 years old — the first a living donor (her Dad), the second a deceased donor
- how liver transplant works
- that she’s coming up on 16 years post-transplant
- that her abdominal muscles are also flipped — a condition called abdominal situs inversus
- that as a result of a surgical complication from her second transplant, her bile ducts narrowed and collapsed — and she had to have a tube inserted to drain her liver in order to avoid sepsis. The tube was changed out every 6 weeks under general anesthesia, from the ages of 11-23
- that when she had an aneurysm of one of her arteries, she narrowly survived — there was only a 2% chance of survival
- that she’s achieved so much because when you face your biggest fear at all times (mortality) — it instills a boldness in you — and she sees that as a huge advantage in life
- that Kids Caring 4 Kids gave her tremendous purpose while undergoing transplants when she was young — and supported her healing
- why it’s so important to fight for disability accommodations in college and beyond
- that medicine is an art, not a science — and still involves a lot of guesstimation. That’s why you should trust yourself above all others
Tori S. Dixon (MS, LPC) is the owner and practicing clinician of Graceful Journey Counseling in Arlington, Texas. A licensed professional counselor with a background in funeral direction, her specialty has naturally become grief and loss; she practices from the belief that any barrier to mental wellness is ultimately attributed to some sense of loss. Whatever the loss, she believes that grace and space to acknowledge and properly grieve loss is the first step on the road to true healing and emotional and mental wholeness. Tori adopted a theoretically-sound, culturally-competent and faith-based approach that focuses on engaging and meeting clients where they are on their journeys. Her goal is to provide the safe space her clients need to grow fully into who they were created to be — and to thrive in life and relationships. In this episode, we discuss mental health care from a chronic illness perspective; we also address the need for culturally-competent care, and for access to mental health care as an imperative.
Tune in as Tori shares:
- that she has worked with past guest Dr. Jessica Shepherd for the last 2 years, helping clients manage mental and physical wellness
- that sometimes her work is about bridging the gap between patient and clinician
- that she specializes in grief and loss because she worked as a licensed mortician for 14 years
- that she sees grief and loss not only as the loss of a loved one — but also as losses related to relationships, jobs, home, finance, health, etc.
- the importance of cultural sensitivity and competency in mental health counseling: that often, patients want to talk to clinicians who can understand their experiences
- that she often comes across clients who have not been believed, had requests denied, or felt they were not heard by other clinicians
- that her role is to empower and validate her clients — to acknowledge that their experience is real, and not imagined
- a discussion of the social factors that impact mental health and wellness
- that so much of medical research has been created out of bias — and it’s time to reinvent mental health service infrastructure to support the Black community, among others
- that race, gender, and other inequities in healthcare are a public health crisis of the scale of COVID-19 — or greater
- why she works on a sliding scale with her clients
- why she coaches clients to cultivate life-work balance, rather than work-life balance
- why consistency is key to creating real, lasting change
- why you are one decision away from changing your life
- that it is your right to be healthy in mind and body
- why everybody needs a therapist
TW: This episode includes mention of suicidal ideation and behavior, as well as discussion of a suicide attempt that the guest survived.
Diana Chao is a 21-year-old first-generation Chinese-American immigrant from southern California. During her sophomore year of high school, bipolar disorder nearly ended her life…and inspired her to create non-profit Letters To Strangers (L2S), which uses the healing power of the written word to create awareness of mental health and illness, and spread comfort as “humanity distilled into ink”. Today, L2S is the largest global youth-for-youth mental health nonprofit, impacting over 35,000 people on six continents. For this effort, Diana has been named Oprah Magazine's 2019 Health Hero, the youngest winner of the Unilever Young Entrepreneurs Award, and the only American winner of the 2019 Global Changemakers cohort. As part of Adobe's inaugural class of global Top Talents, Diana seeks to further the intersection of creativity and social impact through conceptual photography. Her Minority Mental Health Month self-portrait series went viral with 2+ million views, and she gives workshops and speeches on youth mental health. She’s also a 2020 recipient of the Diana Award, named for Princess Diana and honoring youth changing the world. But most of the time, she is a third-year at Princeton University trying to wake up for class on time. And, as you will soon learn: an absolute delight.
Tune in as Diana shares:
- that she was diagnosed with bipolar disorder at the age of 13
- that she struggled to validate both her disorder and diagnosis
- how culture — and the immigrant experience — has played into her experience of mental health support and awareness
- that she has also been diagnosed with autoimmune eye disease anterior uveitis, which causes temporary blindness
- that anterior uveitis was her way in to increased medical care, and gave her access to a psychiatrist — which played a huge role in her access to ongoing mental health care
- that her brother found her during her last suicide attempt, and her honor and love of him helped shift her perspective on her self-worth
- that writing and connecting has been healing for her — which is why she founded L2S
- that L2S started as a student club during her sophomore year at high school
- that L2S is as much about connecting the community as it is about changing access to and integration of mental health support services in schools around the world, destigmatizing conversations about mental health and illness
- that she’s been episode-free for the past 2 years
- that over 80% of mental health practitioners in the US identify as white — which causes difficulties in treating patients with diverse backgrounds who don’t necessarily feel fully understood
- that in the mental health DSM, culture-bound symptoms are mostly included only in the appendix
- that L2S is also creating inroads for young people of color to pursue careers in mental health care
- that — understandably — she got into a depression spiral during quarantine for COVID-19
- why the basic concept of self-care comes from a place of privilege
@Autism_IRL is an Instagram account created by WEGO-award-winner Dana Kelsey, who works alongside her parents as a full-time caregiver for her autistic adult brother, Robert. Dana has a background as a behavior analyst, and has been working professionally with the autistic community for 10 years. Her passion for this line of work was sparked by a personal tragedy involving Robert’s mistreatment. In 2017, Dana made the decision to leave her professional career and move back to Central New York to assist her parents in caring for her him. Robert is 34 years old, loves Sesame Street videos, Little Debbie snack cakes, Disney movies, and pepperoni pizza. It just happens that he also lives at home with his parents. Robert has had a difficult journey since entering adulthood, but his resiliency and loving family have enabled and encouraged him to continue living a joyful life.
Tune in as Dana shares:
- how Rob was first diagnosed with autism spectrum disorder at 4 years old
- that support services when Rob was first diagnosed — in the late ‘80s — were far from comprehensive
- that her parents were lured into many biomedical therapies when Rob was a kid — none of which have been proven effective
- that so many treatments for autism focus on the condition as a defect — and that her family never subscribed to that POV
- that Rob is semi-verbal, and his family has learned his communication tools
- that at 21, Rob was involved in a traumatic assault incident that left him with PTSD— and that he and his family only began to overcome 10 years later
- that in Dana’s household, her father is the sole source of income — and that COVID has caused a lot of anxiety as a result
- the importance of maintaining your mental health as a caregiver
- how prejudice and privilege have affected Rob’s movements through the healthcare system
- that the adult services area of autism care is far from ideal
- that vaccinations and ABA are very divisive topics in the autism community
Daniel Jones is the founder of The Aspie World (TAW), an internationally-recognized patient leadership platform that works to help the world understand autism — from an autistic person’s perspective. It has become the UK’s #1 resource for Asperger’s syndrome, ADHD, OCD, and dyslexia. With a YouTube audience of over 100k and over 8 million views, Dan has become an influencer and public speaker — and a leading voice in the autism community. Diagnosed on the spectrum at the age of 26, Dan’s life suddenly came into sharp focus. A musician by trade, he always thought he was “a little different”, and immediately began seeking community in order to shift his understanding from the clinical world into the real one. From there, things really took off. In this episode, he sat down with Lauren to talk about his experience — and how patient advocacy has changed his perspective. His energy is infectious and upbeat — so prepare to be wowed!
Tune in as Dan shares:
- that he didn’t know anything about autism until he was diagnosed on the spectrum — at 26
- how Dan’s mum-in-law suspected his diagnosis and encouraged him to seek assessment
- that he was probably one of the last people in Wales to receive an Asperger’s diagnosis — before the DSM-5 moved Asperger’s, autism, and other developmental disorders under the umbrella of autism spectrum disorders in 2013
- that his diagnosis was liberating, and helped him understand past behaviors
- that the conservative government in the UK imposed austerity measures that have made Dan lose essential mental health support services
- that he’s in the middle of writing his second book
- the importance of the patient voice in autism advocacy — and how infrequently we have access to resources for the community, by the community
- how he structures his day with apps and activities, and why he’s committed to self-improvement
- about his issues with small motor skills and spatial awareness
- why he needs to be able to control his environment to some degree
- how autism diagnosis and treatment protocols serve men much better than women
- why autism is f**king cool
- how the NHS is inaccessible for individuals living with autism
- why YOU are f**king awesome
Jennifer White-Johnson is a designer, photographer, art activist, and art educator. Her work focuses on the intersection of content and caregiving with an emphasis on redesigning ableist visual culture. In this interview, Jen shares her experience living with Graves’ disease and undiagnosed ADHD, as well as her son’s diagnosis of autism at age 2. When Knox was diagnosed on the spectrum, Jen began to examine the absence of Black disabled children in digital and literary media. This motivated the release of an advocacy photo zine entitled KnoxRoxs, which was intended to give visibility to children of color in the Black autistic community. Since its release, the zine has received national and international recognition, including features in AfroPunk and The 2019 Women’s March on Washington; it is also permanently archived in libraries at the The Metropolitan Museum of Art and the National Museum of Women in the Arts. As we discuss on the show, Jen believes that true allyship can only come from designing with the disability community in mind. As designer of the #BlackDisabledLivesMatter symbol (available as a free download on her website at jenwhitejohnson.com), her recent work has been instrumental in reigniting much-needed dialogue about disability justice within the Black disabled community, helping to shift stigmas while aiming to eradicate racist and ableist media. Jen’s mission, in her words, is to reimagine “Mothering as an act of Resistance”, redesigning ableist visual culture by “encouraging communities to engage in conversations about acceptance, rooted in how Black Neurodivergent children are valued and seen.”
Tune in as Jen shares:
- how Knox was diagnosed with autism — and how his family views his disorder as natural, and embraces his needs
- how Jen and her husband have been sure to monitor Knox’s needs and environments so he can thrive
- how Jen created the first zine to support Knox — as a fun guidebook for his teachers
- that Jen has sought Black joy in autism, and uses design to demonstrate it
- how she supports her neurodivergent students at Bowie State University
- how she has created structures to support Knox and accommodate his needs
- how Knox’s Blackness intersects with his disability from a healthcare and human perspective
- a discussion of the injustice of racial discrimination and inherent bias — and why Jen has intentionally created a safe space for Black disabled individuals and caregivers to occupy
- how Jen works with her community to keep Knox safe as a Black autistic child
- why she has Knox registered with the local police in her area
- how she was diagnosed with Graves’ disease at 21, and was given radioactive iodine treatment to effectively “kill off” her thyroid
- how little guidance she was given for her long-term health after her own diagnosis
- that art is a form of self-care for her — and for Knox
- what intersectional allyship really looks like
- how she plans to work toward an official diagnosis of ADHD
- where you can get your free printable #BDLM images, and how her design has swept the world in community protest
Tanika Gray Valbrun is an award-winning journalist and women’s health educator. She is the founder of non-profit The White Dress Project, an organization dedicated to bringing awareness, raising funding, and increasing education about uterine fibroids. Tanika lives with uterine fibroids herself, one of the 80% of Black women in the US to develop them. As the founder of The White Dress Project, Tanika has successfully worked with doctors, health advocates, and elected officials in multiple states to get legislation passed declaring July Fibroid Awareness Month. Recognized as a thought leader and patient advocate for uterine health, she has also spoken at various events domestically and internationally. In addition to encouraging women to be their own health advocates, Tanika works as a Content Producer for the CNN, where she has been awarded three coveted Peabody Awards for her contributions in journalism. She is also the recipient of Georgia Trend and Atlanta Business Chronicle’s 40 Under 40 Award. This episode is a special one, highlighting the current race crisis in America as well as raising further awareness of fibroids during Fibroid Awareness Month. We hope this interview will inspire you all to take action toward combating institutional and systemic racism, and to reconsider your experiences in the medical system through a sharp and discerning lens.
Tune in as Tanika shares:
- that The White Dress project are authors of legislation that has gone through the US House declaring July Fibroid Awareness Month
- that Tanika’s mother also has fibroids, and lost two sets of twins because of them
- why The White Dress Project advocates for fighting to create a healthcare team that works in partnership with you
- what fibroids are: benign tumors that can grow in or around a woman’s uterus, and can cause a host of issues from pain and heavy bleeding to bladder issues and miscarriage
- that you can have fibroids and be asymptomatic
- the importance of healthy lifestyle in maintaining long-term health and avoiding the growth of further fibroids
- the psychological impact of living with fibroids
- how bias has affected the care she’s received — from access to care as a thin woman, to race and gender
- that Black women are disproportionately affected with fibroids — they grow larger, Black women are more symptomatic, and hysterectomy is often offered as a first course of treatment well before it’s typically offered to white women
- how medical research in women’s health is affecting Black women’s care
- why it’s important that women vote and run for office — and how this reflects back on our medical care
- the importance of redefining the power dynamic of the patient-doctor relationship
- how medical bias affects women’s health — and especially Black women’s health
- why we all have to do internal work to eliminate bias
Lisa Sniderman, aka Aoede, is an award-winning quirky folk-pop musician, playwright, author, and filmmaker from San Francisco. She’s been honored with more than 85 awards for songwriting, audiobooks, films, stage plays, and books since 2012 — all while living from rare autoimmune disorder dermatomyositis (or DM, as she calls it), a progressive muscle weakness disease. Her memoir, A Light in the Darkness: Transcending Chronic Illness through the Power of Art and Attitudechronicles her decade-plus journey living with DM while creating to heal. As Aoede, she creates and records unique, original full-length fantasy musicals on audiobooks that she adapts to musical theater stage plays. Her goal as an advocate is to encourage and inspire others — especially those experiencing transformations, from chronic illness and disability to unexpected life challenges. Hers is a joyful perspective on living well with chronic illness, and her latest venture is a free two-week virtual summit entitled Keep Shining: *How to Thrive With Chronic Illness and Limited Energy*, which will be hosted online from July 10th-24th. The summit will bring together a vibrant interactive community of 60 expert speakers; thriving artists who battle chronic illness, alternative practitioners, spiritual teachers and healers, creative therapists, thought leaders, medical professionals, and online support communities; who will share stories, resources, tools, practices, strategies, tips, and life lessons through conversational videos in order to help those of us struggling with chronic illness, caretakers, and loved ones to THRIVE.
Tune in as Lisa shares:
- that she was first diagnosed 12 years ago — 6 weeks before her wedding
- that chronic illness treatment is always focused on the physical, and rarely addresses mental health and other holistic concerns
- what dermatomyositis is — a progressive muscle disease that also attacks and weakens her immune system
- that in 2010, she had a DM flare that left in hospital for a month, and led to such severe muscle weakness that she had to learn the basics of motion all over again
- why her life is “firmly cast in Jello”
- what pacing looks like when you’re living with chronic illness
- what to expect at her free virtual summit this month
Trust Me I’m Sick is a docu-series produced in partnership with nonprofit Suffering the Silence that explores how chronic illness affects the everyday lives of five people living in Los Angeles, California. Ezra (18), Giuliani (29), Henriette (50), Matt (32), and Cassandra (28) share intimate stories about how lupus, HIV, and other conditions shape their relationships, careers and visions for the future. In this episode, Lauren sits down with creators and co-producers Sarah Stewart (living with SIBO), Erica Lupinacci (living with lupus), and one of the subjects of the doc, Henriette Ivanans-McIntyre, who has survived drug and alcohol addiction and had two kidney transplants due to unrelated glomerulonephritis (chronic inflammation of the kidneys). As two women living with chronic conditions themselves, Erica and Sarah realized that while diagnoses and life experiences may differ, feelings of being misunderstood, silenced, and dismissed are often shared across the chronic illness community as a whole. Frustrated with the lack of illness and disability representation in front of and behind the camera, the team was committed to employing and involving people with direct, lived experience with illness in all aspects of the series. Trust Me, I’m Sick was made by an entirely female crew, all of whom have personal experiences with chronic illness. It was crucial that it was made for the community, by the community. It was made while in the midst of a clinical trial, edited from infusion chairs in the hospital, and developed while wearing heating pads in bed. People living with chronic illness deserve to have their stories seen and heard, to have platforms to talk about the things so rarely discussed and so often stigmatized. And we’re here to talk about why.
Tune in as Erica, Sarah, and Henriette share:
- Sarah got sick at 20, and didn’t get her diagnosis of SIBO until 5 years later
- how rare a diagnosis of SIBO can be, but how common Sarah’s experience in the medical system — both in the UK and in the US — was
- Sarah has been treating her condition with a low-FODMAP diet, among other protocols
- Erica was diagnosed with lupus a decade ago, and waited 3 years for her diagnosis (she was originally misdiagnosed with ankylosing spondylitis)
- Erica’s main lupus complication: pericarditis (inflammation and fluid around the heart), which has become chronic
- that Henriette had her first kidney transplant at 19 (her mother donated); 20+-years later, her husband was her second donor
- that Henriette developed drug and alcohol addiction between transplants
- that Henriette has also developed nerve damage which has left her in chronic pain; she also lives with migraines
- that addiction recovery is daily work; Henriette relies mainly on spirituality to remain in recovery, and makes the decision to heal every day
- Henriette’s early understanding that she had to literally perform illness — she had to LOOK sick and avoid wearing makeup, etc. to be taken seriously by clinicians
- how COVID has coincided with chronic illness diagnoses, and how it’s affected social response in the Spoonie community
- their takes on the healthcare systems in the US, UK, and Canada
- a discussion of representation in the disability and chronic illness space — because so little media is actually representative of the range of experiences in the community
- that Henriette’s own father died of alcoholism at 38
- the importance of community if you’re living with chronic illness or disability
Sheryl Chan is the writer behind A Chronic Voice, a blog that aims to articulate lifelong illnesses through various perspectives. She herself lives with multiple diagnoses, which include autoimmune disorder antiphospholipid syndrome, Sjögren's syndrome, epilepsy, lupus (SLE) and more. Beginning with a mini stroke at the age of 14, Sheryl’s experience was followed by multiple blood clots in the lungs and legs, a gore-tex band for a heart valve (she then developed PSVT — paroxysmal supra ventricular tachycardia — after this mitral valve repair in 2011), seizures, scars from various surgeries, and ongoing chronic pain associated with lupus. She’s been in out and out of hospital rooms for so long, she knows what it’s like to face mortality and to battle the mental health after-effects of such critical situations. One thing Sheryl truly works to destigmatize is mental health — from depression to anxiety and everything in between, she hopes that by sharing her experiences, she can share that it’s OK…to not be OK. As she says, “Let us simply get through it together one day at a time…and if need be, one second at a time. I can, I can, I can. That’s three seconds down.”
Tune in as Sheryl shares:
- that she had a mild stroke at 14, at which point blood clotting disorder antiphospholipid syndrome (APS) was diagnosed
- that she has to take blood thinners daily in order to prevent clotting
- that APS is usually diagnosed in late-stage pregnancy, as it can cause miscarriage — so Sheryl was unusual in that her case was diagnosed sooner
- that at 17, she had her first brush with death when she suffered a massive blood clot in her lung — and a doctor didn’t take her seriously at first
- that because the episode with APS at 17 was so severe, it likely triggered the genes for lupus, Sjögren’s, and more
- that her second brush with death came at 25, when one of her heart valves prolapsed
- that she raised funds ($100K USD) to have her prolapsed valve repaired at the Cleveland Clinic with minimally-invasive techniques
- that because of her experiences, she is no longer afraid of death
- how she is constantly balancing her mental health and chronic pain
- how she’s become her own advocate, and become skilled at firing doctors who aren’t working with her
- that her medications cost $1-2K/month, despite a chronic illness payment scheme
- that pain is often not the worst part of chronic illness: isolation and fatigue can be just as difficult to deal with
- that mental health issues come along with all chronic illnesses at some point — and need to be taken care of from diagnosis. Sheryl recommends adding a therapist to your medical team ASAP
- why it’s important for all your doctors to work with you, and be open to communicating as a team
- why it’s important to trust yourself and your own knowledge of our body
- why it’s important to ask for help and seek community
Keisha Greaves is the founder of fashion label Girls Chronically Rock, and is a motivational speaker and former Massachusetts State Ambassador for the Muscular Dystrophy Association (MDA). Diagnosed as a graduate student with limb-girdle muscular dystrophy, she is now largely wheelchair-bound. As a patient advocate, she worked with Massachusetts Governor Charlie Baker to have September 30th officially proclaimed as Limb-Girdle Muscular Dystrophy Awareness Day in the city of Cambridge, MA. Her passion is in adaptive fashion, and she works with Framingham State University students to teach the importance of access and practicality in their designs. She has been featured on numerous media outlets, including Good Morning America, the Today Show, ABC News, Thrive Global, and Politico. She is an active participant in many local fundraising events for the MDA and other organizations, frequently encouraging audiences to “Fill the Boot” to support research and awareness. She’s also a total inspiration, encouraging those of us living with chronic illnesses to embrace the change and move forward into our new lives with grace and enthusiasm. Tune in to get dosed with an infectious amount of joy!
Tune in as Keisha shares:
- that she was diagnosed with muscular dystrophy after an MRI and muscle biopsy
- that when she was first diagnosed, she knew nothing about her condition
- that she was very much in denial of her condition early on
- that muscular dystrophy is a progressive condition, and that her limb-girdle type also affects her heart
- what muscular dystrophy is
- that because her condition is progressive, she’s slowly deteriorated physically — beginning at first with a cane, then a walker, and now full-time in a wheelchair
- how much more independent she is in her wheelchair, which she adopted in 2019
- how she’s decorated her wheelchair to customize her appearance
- how she’s connected with other Spoonies through social media
- the grieving process of being diagnosed with a progressive and chronic disease
- how she unwinds
- why she's still working toward accessibility equity as someone who is wheelchair-bound
- discrepancies in insurance coverage, from prescriptions to mobility and transportation as a disabled person
- what’s next in her business: a Girls Chronically Rock adaptive clothing collection
- her top tips for staying happy and fulfilled when living with a disability
Alicia Young (aka AP) is a writer, blogger and public speaker who lives her life out loud and unfiltered. She has built her platform to include in-depth, first-hand experiences of mental health concerns, body diversity, being a special needs mom (one of her sons has Tourette’s syndrome, ADHD, and is on the autism spectrum), and navigating life with chronic illness and disability (including autoimmune disease and osteoarthritis). Like Lauren, she was diagnosed with Hashimoto’s disease — but by the time she was treated, she had to have her thyroid removed because it had formed a goiter. Additionally, she has had harrowing birth experiences as a plus-size Black woman, and candidly shares her story — from multiple miscarriages to birth itself — here. Alicia has a vested interest in teaching plus size women how to advocate for their health care in the face of weight-discriminatory culture in healthcare (and beyond). As a fat woman living with disability, she has been told she has to lose weight (via a gastric sleeve) before she will be given a much-needed hip replacement — and has been navigating the experience with grace, honesty, and total candor. AP also has a passion for fashion and beauty, specifically for women of extended sizes. Through her blog and social media platforms, she encourages and inspires women to shed stereotypes and step out of the boxes society has dictated for them — whether they exist in larger bodies, or not.
Tune in as Alicia shares:
- that she was diagnosed with seep apnea in 2010
- that in 2016, she started having pain in her body during a pregnancy — and was diagnosed with osteoarthritis
- that she grew a goiter in her neck and was later diagnosed with Hashimoto’s disease
- that she miscarried her son’s twin and has had 8 miscarriages, as well as a blighted ovum
- that despite all her miscarriages, no doctors ever flagged fertility issues in her medical file until she had her last son
- the medical PTSD she developed in relation to her fertility because of her many miscarriages
- that fat women have to fight harder to be treated normally when it comes to pregnancy — because so many doctors resort to C-sections before they become necessary
- that as a fat Black woman, she has been discriminated against in multiple medical scenarios — from being told to lose weight, to being put on unnecessary medications, to being ignored and not believed (re: pain, labor, and more), to procedures performed while she was unconscious that were not communicated — to facing her own mortality
- that in hindsight, many of her later birth experiences were likely influenced by mounting thyroid concerns
- that she developed Asherman’s syndrome in the midst of her pregnancy issues
- how her weight, age, and race played into delays in treatment tantamount to medical malpratice
- that she’s been told she needs a hip replacement because of her osteoarthritis, but her doctors are requiring her to get a gastric sleeve (to lose weight medically) in order to give her the replacement
- how she feels about weight loss surgery as a proud fat woman — and how this new experience relates to her struggles with eating disorders
- how food deserts affect health — and how food deserts often surround Black communities and communities of color
- why it’s so important to know your family medical history
- why she uses mobility aids
- what it’s like to be a special-needs mom in the midst of her many personal health concerns
- that she’s been committed to the psych ward before (for a week, about a decade ago) — and recognizes the importance of mental health in her total wellness journey
- her tips for living a full, self-aware life — from one’s own health, to being a special needs momma
Annelise Bretthauer is a certified financial planner (CFP) professional living in Oregon. Diagnosed with dyslexia as a teen, she’s always turned to hard work to overcome adversity. But that hard work only paid off so much…until she got sick. In 2017, Annelise was diagnosed with Crohn’s disease. Faced with career overhaul and a choice between her passion and her health, she redesigned her life around her diagnosis to better serve both her body and her growing client list. In her own words, “I’ll be the first to tell you, I have not overcome the challenges of the disease but I continue to learn how to protect my body and pursue my passion at the same time.” With the launch of Rise Up Financial, she’s on a mission to integrate health and wellness into her clients’ finances, and believes that wellness should be a part of the planning process whether you are facing chronic disease…or not. The unforeseen twists and turns life has handed her have given her an understanding of how to ride life’s rollercoaster securely and confidently, and have taught her to manage finances to nourish her life. Her advocacy work has been growing steadily, and as she continues to spread her wings…we welcome her to Uninvisible Pod!
Tune in as Annelise shares:
- that she was diagnosed with Crohn’s disease when she was 24
- that she sought therapy early on in her diagnosis, and recognizes it as one of the best moves she’s made in her chronic illness journey
- that she had to leave her job in order to heal her body — the 9-5 grind was not sustainable for her anymore
- that she launched her own business in order to work around her body’s needs
- that so much of healing is about finding your individual formula
- that being stressed about finances is “no way to live”
- her top tips for chronic illness patients looking to organize their finances
- why it’s important to have a will and healthcare directives, especially if you’re a young Spoonie
- the importance of mindset in the healing journey
- her views on money: that it is to be used to live your life more intentionally — and that it can be used to nourish your life
- why her job is to help clients to use their money to reduce stress and create joy
Danielle Gulden and Joe Teeters are IBD warriors and permanent ileostomates. They’re comedians, speakers, advocates and Two Best Friends without Buttholes! Danielle has had ulcerative colitis (UC) for over 27 years. After going through nearly every IBD medication available, going to the bathroom 20-25 times per day, and having a toilet installed in her car (this is not a joke, folks!), she finally kicked her diseased colon to the curb in 2007. Her ostomy (and her stoma named Stella) saved her life and gave her back her life! Joe has also been living with Crohn’s disease for over 27 years. Like Danielle, he has run the gamut of medical treatments and medications. He has had a total of four intestinal surgeries, including two resections. In 2012, he underwent a total proctocolectomy with end ileostomy. That surgery landed him a spot alongside Danielle in the “Barbie Butt” Club! What’s that, you ask? Two cheeks, no hole, that butt is just for show! Danielle and Joe use their humor, wisdom, and stories to connect with and support other people living with ostomies and inflammatory bowel disease. They believe in the power of humor, advocacy and awareness!
Tune in as Joe & Danielle share:
- that they were winners of “Hilarious Patient Leaders” at the WEGO Health Awards 2019
- that Danielle changed majors because of her ill health, and wasn’t diagnosed with UC until she was 22
- that getting a diagnosis was a relief, and gave Danielle a plan of action
- that Joe had appendicitis at 14, and believes this was the first flare of his Crohn’s disease
- that like Danielle, Joe wasn’t diagnosed until he was a young adult
- that Joe’s diagnosis took 1 year to ascertain, and Danielle’s took 6 years
- why Joe and Danielle both ended up with ileostomies
- all about Danielle’s car toilet
- what “Ostomy Bombing” is, and why they do it
- how they met
- that there are local support groups available through the Crohn’s & Colitis Foundation, as well as the United Ostomy Association
- their work speaking to legislators and creating policy change in favor of patients
- the importance of clinical trials to advance treatment options for IBD and other chronic illnesses
- Joe’s favorite ostomy cover — Carter’s newborn baby onesies
TW/CW: This episode features graphic description of rectovaginal surgery, as well as discussion of suicidal ideation.
Tina Aswani Omprakash has been a Crohn’s patient for 14 years, and is the award-winning patient expert and advocate behind Own Your Crohn’s. Her aim is to normalize the rhetoric around chronic illnesses and disabilities in order to help patients own their ailments to live fuller, happier lives. Having endured multiple surgeries and overcome the stigma of her disease among family and friends, she is now pursuing a Master’s degree in Public Health at Mount Sinai’s Icahn School of Medicine. Tina is involved in IBD Social Circle and is on the Board of Advisors for the HealtheVoices 2020 advocacy conference. She also sits on the Board of Advisors for Health Advocacy Summit, the non-profit founded by former guest Sneha Dave. Tina was recently awarded the 2019 Healio Gastroenterology Disruptive Innovator Award in the Patient Voice category at the American College of Gastroenterology conference for moving the needle on GI care for patients. Via her platform of influence, she spearheads public health causes, including those proposing research for and creating awareness for inflammatory bowel disease (Crohn’s and ulcerative colitis), life-saving ostomy surgery, gastroparesis, fistulizing disease and initiatives supporting health concerns for women and racial, ethnic & sexual minorities.
Tune in as Tina shares:
- that early on, she was additionally diagnosed with Lyme disease and Epstein-Barr Virus (EBV)
- that Crohn’s disease runs in her family, and was fatal for her father at the age of 39 (when she was 8)
- that at 21, she was diagnosed with mild ulcerative colitis — and neither given the diagnosis directly nor medicated
- proactive steps to take control of your health: requesting your medical records and labs, and seeking second opinions
- her first life-and-death experience: she developed C. diff after taking courses of antibiotics to treat contracted gastroenteritis — and had to leave work and move home
- the cultural stigma associated with IBD as a woman of South Asian descent
- that she had a 4-step J-pouch surgery after a temporary ostomy, but she developed chronic refractory pouchitis — and then went back to Wall Street
- that she developed her first rectovaginal fistula in 2011 — after one year of marriage
- how dehumanizing and desexualizing her experience has been
- that she has traveled to Cleveland Clinic and Mayo Clinic for treatment, and has had over 20 surgeries to-date
- that when trying biologics again to treat her condition, she went into anaphylactic shock — and then later, developed pyoderma gangrenosum, hidradenitis suppurativa, erythema nodosum, and Sweet’s syndrome
- that she spent 6 years with her J-pouch, and developed 4+ rectovaginal fistulas despite the use of biologics and follow-up surgeries
- that her J-pouch removal surgery was botched — by a doctor who had previously saved her life in 2008 — and as such, she was torn about pursuing a malpractice suit
- that follow-up surgery to correct the J-pouch issue revealed an abscess and open wound, which required more extensive long-term care
- her second life-and-death experience: at this stage, she was a ticking time bomb — considered septic, with a fistula growing toward her spine, and told to act fast to avoid potential paralysis
- that she ended up with a JP (Jackson Pratt) drain attached to her bottom and was told she’d need 3 more surgeries — and medical PTSD finally kicked in
- breaking point: when she became suicidal
- how her mom stepped up for her at her worst
- that she now lives with a permanent ostomy
- that she now has an additional diagnosis: gastroparesis (but was also diagnosed with IBS-C)
- that in early 2016, her Crohn’s disease went into remission
- how she’s navigated disagreements between different doctors on her medical team
- that her currently-advised diet consists largely of soup and smoothies
- that one of her doctors now believes she may never have had Crohn’s, but possibly had severe inflammation all along
- that advocacy work has become a coping mechanism for her
- how COVID-19 has influenced her healthcare choices
- how she’s experienced prejudice as a racial, ethnic, and cultural minority — both within and outside the medical system
- that in many ways, “coming out” with her health story 2 years ago was social suicide for her — she lost friends who couldn’t handle either her illness or her outspokenness as an advocate
- the role of mental healthcare in her approach to wellness
- how she got involved in patient advocacy
Sarah Ramey (also known by her musical pseudonym Wolf Larsen) is a writer and musician living in Washington, DC. She is a graduate of Bowdoin College, received an MFA in creative nonfiction writing from Columbia University in 2007, and worked on President Obama’s 2008 campaign. A recipient of the 2018 Whiting Creative Nonfiction Writing Grant, she is also the author of the new memoir The Lady’s Handbook For Her Mysterious Illness, a searingly funny and achingly candid retelling of her journey from misdiagnosis and disconnection from her body through 15 years of mysterious illness that she was consistently told was all in her head. And guess what? It wasn’t. The realization that women are so often brushed aside as hysterical, given false psychological diagnoses when their bodies are in crisis, and experiencing exacerbated symptoms because of their lack of acknowledgement led her down a rabbit hole in which she discovered her kin: WOMIs (Women with Mysterious Illness), who are “exhausted, gluten-free, and likely in possession of at least one autoimmune disease. [They are] allergic to…(everything), aching from tip to toe, digestively impaired, and on uneasy terms with [their] reproductive system[s]. [They are] addled, embarrassed, ashamed, and inflamed.” And almost all living with neuro-endocrine-immune issues. Now diagnosed with ME/CFS, as well as comorbid conditions CRPS (in her case, constant colovaginal pain), POTS, and MCS (multiple chemical sensitivity), she still lives with chronic symptoms and is on a mission to turn her experience into something from which we can learn and improve. A cautionary tale to both fellow WOMIs and the medical establishment, Sarah challenges us — all — to do better.
Tune in as Sarah shares:
- that her main diagnosis is ME/CFS, and she experienced an abrupt onset during her senior year of college, in 2003
- her first symptom: consistent UTIs that couldn’t be eradicated with antibiotics
- her first treatment: a urethral dilation gone wrong, which caused her to develop sepsis
- that these experiences were the beginning of years of pelvic pain
- that as tests began to come back negative, she was immediately referred to psychiatric counseling
- the disparity in funding between AIDS, cancer, and ME/CFS research
- a discussion of medical bias in research and practice
- that she got her CRPS diagnosis 10 years into her medical journey
- that her CRPS presented much like vulvodynia, but the Mayo Clinic finally gave her the correct diagnosis
- that her CRPS has been connected to a neuroma inside her vagina — and for the longest time, she could barely even sit down or wear pants
- that for years, she was denied tests because they would have required her to be under general anesthesia due to her pain — and these tests ultimately revealed the root cause of so much of that pain
- that she endured multiple medical traumas, from biopsies without anesthesia and incorrect device installment, to constant pain and disbelief
- the role of stress in chronic illness: and why so many chronic illnesses are modern problems
- that mistreating patients actively contributes to the worsening of disease
- how her relationship with her parents (who are both doctors) evolved over the course of her illness
- that she was early to research the microbiome and gut health, and was repudiated by friends, family, and doctors
- aspects of the feminine that influence medical bias
- that “pathological niceness” is a personal trait she has modified in order to better serve herself and others
- why the doctor-patient dynamic is one of imbalanced power
- how she practices mindfulness around her “spoons”
- that she’s recently gotten an ileostomy in order to manage her digestive symptoms
- the importance of functional medicine in her health journey and the future of medicine
- how she envisions the future of medicine and patient-hood
Lauren Reimer is a blogger, content creator, and chronic illness community leader based in Fayetteville, Arkansas. At the age of 13, she was diagnosed with Chronic Intestinal Pseudo-Obstruction (CIPO), which means that her digestive tract acts as though it is obstructed — even when it is not. Lacking peristalsis, the worm-like movement that moves food, fluid, and air through her digestive tract, her body is unable to absorb adequate amounts of nutrients from eating alone. As such, she relies on IV nutrition (total parenteral nutrition, or TPN), administered from a 2.5-liter bag of fluid containing fats, protein, sugars, vitamins, and minerals that infuses over 12 hours while she sleeps. She’s been living on this therapy since her diagnosis, and while unusual, it has sustained her and allowed her to live a full life. She also has two feedings tubes that she uses to decompress her stomach and intestine during her waking hours. What sets Lauren apart in her work is her boldness and color: this woman loves all things vintage, fashion, music, and art, and when not in COVID quarantine she loves to spend time with her friends (and there are many!). A frequent guest on her social media feed is her sweet dog Elway, a rescue who keeps her spirits high and her body active (when he’s not napping). Friends of UP: meet Lauren of Pretty Couch Potato!
Tune in as Lauren shares:
- how she was first diagnosed
- what CIPO is, and how it affects her body
- why she’s permanently on TPN — and how her understanding of nutrition has changed over time and with experience
- how her experiments with holistic medicine failed her
- that while she doesn’t live with chronic pain, she is in chronic discomfort
- that she now has both a G-tube and a J-tube to assist in her digestion, as well as a central line for absorbing her TPN
- just how rare CIPO is
- how she has become her own advocate
- how chronic illness has directly impacted her education and career prospects
- that she is now able to work part-time remotely, matching TPN patients with the best care for them
- why she loves her work, which overlaps with advocacy
- that there is a lot of misinformation out there about TPN
- that TPN is not often or readily prescribed (about 40k/year in the US are prescribed it) — and many individuals prescribed the treatment are given it short-term in the NICU or in hospice — very few people live long-term on TPN, like Lauren does
- that she may explore multiple-organ transplant options in the future
- what eating is like for her, given that she gets no nutrition from food
- the misunderstanding that people living with disabilities aren’t willing to fully participate in life — and how she actively works to challenge that misconception
- why her big-city vs. small-town healthcare experiences have been so vastly different
Lorna Alexis is the influencer, model, blogger, and creator of Cystum of Curves. An advocate living with PCOS (polycystic ovarian syndrome), the word “cystum” is derived
from the word cyst, a characteristic of the syndrome. PCOS is known to cause weight gain and make that weight even harder to lose — so instead of letting PCOS get her down, Lorna decided to use her diagnosis as a platform for inspiration and motivation for others as she navigates the world … with curves. In this honest, revealing, and intimate episode, Lorna addresses that #bodypositivity life, how she contracted Type 2 diabetes as a direct result of living with PCOS, how she manages a healthy lifestyle, and why representation matters.
Tune in as Lorna shares…
- what PCOS is: an endocrine disorder that begins in childbearing years and typically comes along with hormonal imbalance (usually excessive male hormone production), insulin resistance, hair loss/hirsutism, infrequent ovulation, irregular periods, blood clotting, and infertility/increased risk of miscarriage
- that PCOS is linked to many other conditions
- that some people living with PCOS develop cysts inside their ovaries — and the pain is similar to fibroid pain
- that she was diagnosed shortly after graduating college, while enduring menses that lasted for 120+ days
- that she wasn’t diagnosed right away, and also had to see several doctors before receiving the diagnosis
- that she started having symptoms as early as 12 years old
- that the doctor to diagnose her was Indian, and more familiar with PCOS than any of the American doctors she’d previously seen
- that the historical trope of the “bearded woman” was most likely a woman living with undiagnosed PCOS
- that most women living with PCOS need to be on low-carb diets in order to manage symptoms
- that she had to change her relationship to food
- what it’s like to live with fertility issues — and how she’s found strength in community and in being able to look toward other influencers and celebrities
- how she avoids sugar crashes and fatigue
- how routine supports her lifestyle and symptom management
- discrepancies and bias in research, funding, and awareness because PCOS is a women’s health issue
- that chronic illness changes the course of your life, and supportive mental healthcare is essential as you adjust to your new lifestyle and identity
- why it’s important to become your own advocate and prevent others from policing your body
Dr. Jessica Shepherd is an OB/GYN and women’s health expert, founder of Her Viewpoint (an online women’s health forum with a focus on addressing what she calls “below the belt” topics in a stigma-free setting), and the host of the new wellness podcast Breathe & Bloom. You may recognize her from her many TV appearances: as a frequent contributor on The Today Show, Dr. Oz, Steve Harvey, CBS News, and FOX News, among others. As an OB/GYN, she practices in Dallas and was previously at the University of Illinois at Chicago, where she served as Director of Minimally Invasive Gynecology. She also gives lectures on fibroids, myomectomies, and women’s health issues around the world. Her writing has been featured in numerous publications, including Women’s Day, Women’s Health, Self, Family Circle, Parents, Essence, and WebMD, and she is a national speaker for Poise, Allergan, and other brands promoting the discussion of women’s health issues. As a member of the board of the Women’s Health Foundation as well as the Multicultural Leadership Committee of the American Heart Association, she uses her expertise to help women understand their health conditions and how to address them appropriately. As we dig into in this interview, she understands all too well that women’s health issues are not discussed openly enough, and that these conversations need to expand for us to remove the stigma of sexual and reproductive health concerns. There is a connection between the physical, emotional, and spiritual that she strives to address in her practice and beyond.
Tune in as Dr. Shepherd shares…
- about her COVID safety videos on social media
- how she realized she wanted to be a surgeon
- why endometriosis is an illness that she really cares about
- why women often feel shame or guilt around their reproductive health issues — and how she actively seeks to discuss them in the open
- the kinds of diagnoses she commonly sees, aside from endo: ovarian masses, fibroids, fibromyalgia, dispareunia (vaginismus, vulvar issues)
- her approach: to give women improved quality of life, with an understanding of integrative options and the body-mind connection
- that endometriosis diagnosis can take, on average, 6-10 years
- the nature of pain: that it is entirely subjective, but it is up to doctors to teach patients to express what the pain actually feels like so they can accurately diagnose and treat
- understanding the difference between pain that’s normal — and pain that isn’t
- that pelvic pain issues are publicly underrepresented
- understanding how specialists receive referrals, and how to ensure continuity in your care
- a discussion about the use of power morcellators in fibroid removal — and how minimally invasive surgeries have been adjusted since the blackbox warning from the FDA went into effect in 2015
- why she keeps a sex therapist and a relationship therapist on call for her patients
- how the COVID pandemic is showing us the cracks in the US healthcare system
- why it’s worth asking doctors and specialists about their cash rate
- that while lifestyle management is important in overall health, it’s equally important that your choices be sustainable
- when women should begin getting regular Pap smears and other regular sexual health tests, and why they’re important
Syren Nagakyrie (she/they) is the founder of Disabled Hikers, a community and resource for those living with disabilities (and their loved ones) that enables and empowers them to access nature. An activist for accessibility and inclusion, they come from a working-class background and have struggled to retain adequate healthcare for most of their life. Syren lives with multiple invisible conditions, including hypermobile Ehlers-Danlos Syndrome (hEDS), dysautonomia (postural orthostatic tachycardia syndrome, or POTS), and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — all of which cause them to live in chronic pain. They also live with clinical depression and complex PTSD. The Disabled Hiker’s Guide to Western Washington and Oregon: Outdoor Adventures Accessible by Car, Wheelchair, and Foot is being published by Falcon Guides in 2021.
Tune in as Syren shares:
- that their illnesses are in various stages of diagnosis because of the state of healthcare here in the US
- that when they’ve been insured, they have usually been on a form of Medicaid, which has rarely been adequate (they’ve never been able to access private medical care)
- that they are only able to work part-time, and manages life on a limited income
- that their father was also disabled
- how they rose to the challenge of self-advocacy as an adult
- that a lot of adaptive gear is inaccessible because of its high price point
- that a lot of people learn about adaptive gear through disabled athletes — but we don’t all have to perform at that level
- that so many of us need more than a paved path and/or adaptive gear to make it into the great outdoors — and these accessibility needs should to be acknowledged
- how they have enacted direct change through the National Park Service
- what information could make the outdoors more accessible
- how they’d like to see healthcare in the US change
- why disability “inspiration porn” rubs them the wrong way
- how important it is to ask for help, especially when living with chronic illness
Otolaryngologist Dr. Madan Kandula is considered Wisconsin’s thought leader for breathing and snoring/sleep apnea solutions. An expert in ear, nose, and throat medicine, his knowledge of healthy breathing has propelled him — alongside his wife, who is an audiologist — to found ADVENT, the largest independent ENT practice in Wisconsin, where they provide their patients with solution-based treatments without the uncertainty, dismissive attitude, and long waits that are often the norm. As such, he routinely treats patients who have had unsuccessful results from previous surgeries, and is often able to correct breathing issues with less invasive procedures. Along with his many other achievements, he is the first surgeon to perform balloon sinuplasty in Wisconsin, and the developer of a new model of care to evaluate The Breathing Triangle. Dr. Kandula is no stranger to these procedures, having undergone sinus surgery himself! In this episode, we dug deep into sleep apnea and related issues.
Tune in as Dr. Kandula shares…
- what The Breathing Triangle is, and how it applies to his work
- that if you have obstructive sleep apnea, you have a throat issue — 100% of the time
- the main foci of his practice: sleep apnea, snoring, nasal blockage, and sinus issues
- that he encounters many patients who feel frustrated because the healthcare system hasn’t worked in their favor
- that the success rate in treating sleep apnea is generally only about 30% — but with the proper interventions, it can be treated properly
- that he commonly treats snoring and fatigue (usually caused by sleep disorders like apnea)
- his approach: more integrative and root-cause-related, rather than putting a Band-Aid on symptoms
- that there are too many people walking around in this world suffering needlessly — who ought not to be
- that sleep apnea doesn’t discriminate based on age: it can affect anyone, at any time
- that our airways are evolving to be narrower over time, which is causing more breathing issues during sleep (as well as a host of other complications)
- that our environment has changed over time, exposing us to new allergens
- how he envisions change in the medical system — with a shift to preventive care that could save time and money
- why doctors are experiencing burnout in the current healthcare system structure
- how his practice treats sleep apnea, and how the approach to treatment needs to change
Chris Abdullahi is the founder of The Sound of Sickle, a non-profit organization that raises awareness of sickle cell diseases (SCD) and blood donations in the UK. He has spoken about sickle cell awareness on various platforms, including Google, Facebook, Guys and St. Thomas’ Hospital, and the BBC, and works closely with the NHS Blood Donations team to curate events and sign up new black blood donors. He also lives with hemoglobin SS disease, the most common and severe type of sickle cell — which means he inherited copies of the hemoglobin S gene from both of his parents. In this interview, he sat down with Lauren shortly after coming out of a ‘crisis’, which is the term used to describe the bouts of intense pain that those living with SCD can often experience. They discuss the importance of raising awareness of SCD outside the community, what living with SCD means to him, and how he manages his symptoms on a daily basis.
Tune in as Chris shares…
- what SCD is
- that he was diagnosed with SCD when he was a toddler
- that while SCD is prevalent in Afro-Caribbean communities, there are also instances of it occurring in Hispanic & Asian communities, as well as rare cases in white communities
- that the biggest challenge in treating SCD is in getting blood donations
- how a crisis can manifest in SCD patients — that pain usually ensues when clots are present, caused by sickled blood cells
- what crisis triggers can look like
- that many SCD patients get regular blood transfusions as a preventive measure to avoid crisis
- that SCD is a lifelong chronic condition — patients cannot “grow out of it”
- that he didn’t meet many other SCD patients until he was in his 20s
- the mental health side of managing chronic illness like SCD
- the cultural side of managing chronic illness like SCD
- why he holds back from revealing his condition at work, and how he manages symptoms with his work schedule
- that sickle cell diseases have just been classified as a disability in the UK
- about his work in creating The Sound of Sickle
- that in the UK, black blood donors make up only 3% of the donation base
- why he won’t use stem cell treatments to cure his SCD
- why his friends are so important to his health
- his parting words: “Donate blood!”
Andrew Kantor is an Associate at Kantor & Kantor, LLP. The son of the founding namesake attorneys, his practice is focused primarily on helping individuals obtain wrongfully-denied disability and life insurance benefits in both ERISA and non-ERISA (bad faith) policies. A client-centered attorney, he has emerged as one of the US’s leading experts on fighting disability denials, with a particular focus on chronic-fatigue-related illnesses like ME/CFS and Lyme disease. Andrew serves on the Board of The Elder Law and Disability Rights Center, and he was named a 2019 Rising Star in Southern California by Super Lawyers. In this episode, he shares his passion for advocacy, the logic behind disability rulings, and how to read between the lines when communicating with insurance companies and physicians.
Tune in as Andrew shares…
- how he began his legal career, and his focus on ME/CFS cases (and unidentified chronic fatigue cases)
- the wider range of illnesses he’s come across in his practice: MS (multiple sclerosis), Parkinson’s, EDS (Ehlers-Danlos Syndrome), TBI (traumatic brain injury), autoimmune disease (including lupus), mental health issues, and lots of back injuries
- that insurance companies are 20 years behind medical science, and won’t push themselves to the cutting edge until someone else pushes them to
- that so much of the outcome among disability cases comes down to the treating physicians
- information about CPET (cardiopulmonary exercise testing), which is an objective test used to prove the extent of disability, and often used in ME/CFS cases
- why the pain scale is totally subjective in legal defense
- that the CDC is behind on information with regard to ME/CFS — and that there’s nothing more harmful to individuals than when the government takes a bad position
- patients’ difficulty in acquiring needed drugs — particularly opioids for those in need
- that workers’ comp is creating more harm than good in CA — blocking inroads to proper medical care
- a discussion of gender disparity in believing women’s pain
- that he has yet to lose a disability case — and that most settle to avoid litigation
- how his firm makes their services affordable to those in need (i.e., no upfront fees) — and free consultations
- why it’s so critical you read your employer’s insurance policy in detail before signing off on it (paying special attention to mental health allowances)
If Jen Msumba of Rebranding Autism isn’t a staple on your social media feed, then take our advice and get her good vibes on your radar. Jen lives on the autism spectrum, and has been through hell and back in her journey to comprehensive care and self-realization. Much of her success has been in facing personal challenges, and seeking the joy in all things to live a full and varied life. An accomplished musician, she has risen to prominence in the patient leadership community through her YouTube channel, where she posts videos of herself playing piano versions of pop music. As her confidence has grown, she has become more outspoken about her daily struggles, and works to inspire others to increase their confidence, get out of their comfort zones, and try new things — something that can be a real challenge for many on the spectrum. Living in residential schools and state hospitals from the age of 15, she survived abusive situations (she readily advocates against electric skin shock, a therapy used to punish adverse behaviors, which she endured daily for 7+ years), and has worked to successfully curb her own self-harming, impulsive, and aggressive behaviors in a healthy way. She now lives in a caring, largely independent-living facility, where she is happy, healthy, and in control of her own destiny. It has been hard won, but worth the fight…and she’s here to serve not only the autism community, but also those looking in from the outside. Team UP: meet Jen. She’s as bright a light as there is, and she deserves our attention.
Tune in as Jen shares…
- that she’s been in hospital and residential school care since she was 15, and wasn’t aware when she was first diagnosed with autism spectrum disorder (ASD)
- that for a long time, doctors and caregivers didn’t inform her about her diagnosis and treatment because they incorrectly assumed she wouldn’t understand
- that she didn’t become aware of her diagnosis until she was a young adult, and this realization was a relief because it validated her, explaining so many of her own behaviors and allowing her to release judgment and self-criticism
- what her early emotional reactions looked like — including self-harming reactionary behaviors
- that she originally thought all people on the autism spectrum were nonverbal
- how awareness (via diagnosis and proper care) has improved her confidence and self-esteem — and allowed her to be herself
- that she responds well to routine, and works to challenge herself to change things up (and share with others how she feels, and that her feelings are valid and relatable!)
- prejudice she’s experienced in the medical system: doctors often addressing her carers and not her directly — without first consulting on address
- that her YouTube channel started with her posting piano videos — and grew from there
- a description of some of the darker moments in her treatment — in state hospitals and psychiatric facilities, where electric skin shock was used for behavior modification
- that until recently, she continued to have nightmares about her violent past
- the role her faith plays in her healing
- the sage advice her mom gave her that changed her life
Amanda Nicastro is a writer and actor based in NYC. In 2014, her sister Brenna needed a new kidney. While Amanda wasn’t a match, she was able to find an exchange program that allowed her to donate a kidney for someone in need, and for Brenna to receive a kidney that met her body’s needs. While Amanda isn’t the most comfortable with the idea of being a “hero” — a title often bandied about in response to her “sacrifice” — she decided to use this overwhelmingly positive response to her actions to call attention to the importance of organ donation…while also hilariously sharing the ins and outs of the kidney donation journey (such as: carrying a cooler full of her own pee through the NYC subway). She wrote the award-winning solo show I’m Just Kidneying, which takes a whimsical look at the process of living kidney donation and “pokes holes into the idea of what it takes to be ‘hero material’.” The show has toured extensively in the US, and even recently at the Edinburgh Festival Fringe. As AM New York says, “She may have donated a kidney to a stranger, but Amanda Nicastro still has her funny bone.”
Tune in as Amanda shares…
- that her sister was diagnosed with nephrotic syndrome (rediagnosed as FSGS, or focal segmental glomerulosclerosis) in 4th grade
- that her sister has now had 2 kidney transplants, and her body has essentially reabsorbed her failing kidneys
- that a transplant can theoretically put FSGS into remission
- that Brenna’s first kidney transplant was donated by her Dad
- that Amanda was able to donate a kidney to a stranger’s wife, and the stranger was able to donate his kidney to Brenna — all through a living kidney donation exchange program
- that it was very hard for her when she discovered she wasn’t a match for Brenna; but that the donation has ultimately made them much closer
- that she has become an advocate since making a living organ donation
- that she recognizes her sister as the real “hero” in their story
- that in the US, someone is added to the organ donor waitlist every 10 minutes
- that she now speaks to her representatives in favor of organ donation and protective legislation for patients
- that support for organ donation legislation is bipartisan, so the foundation for support of patients and donors exists
- that there are limitations to provisions for organ recipients within Medicare and Medicaid, as well as through various health insurance contracts
- that not all transplant centers are created equal, and there is a need for standardization of care in these centers
- how systematic racism plays into access to medical information and treatment
Melissa Talwar was diagnosed with fibromyalgia at the age of 14. 20+ years later, living in chronic pain and regularly becoming bed-bound, she watched her symptoms stabilize and her decline subside at her discovery of biohacking and functional medicine. Not long after, she went on to establish the International Support Fibromyalgia Network, a non-profit patient-led organization created to fulfill the unmet needs of the fibromyalgia community. #SupportFibro believes in collaboration. It is open, participatory and dedicated to educating, advocating and inspiring the fibromyalgia community. Melissa is also a Board Certified Functional Medicine Health Coach, Certified Wahls Protocol® Health Professional, and ReCODE coach (Bredesen Protocol). She cites among her heroes Dr. Terry Wahls, Dave Asprey, and Dr. Dale Bredesen. She and Lauren connected at HLTH 2019, where she was also in attendance as an honoree at the WEGO Health Awards. Melissa was awarded with the honor for Healthcare Collaborator: Patient.
Tune in as Melissa shares…
- that her chronic pain journey started with a sports injury, when she was an Olympic hopeful for CA in the 800m
- that she suffered a concussion and couldn’t even walk up stairs when her chronic pain began — and she was eventually in a wheelchair
- that fibromyalgia had rarely been seen in juveniles when she was first diagnosed as a teen in the ‘90s
- that fibromyalgia itself is far from rare, and its incidence has increased over the years
- that she was placed on numerous anti-psychotics and other drugs, which caused terrible side effects
- that in 2016, still in a state of physical decline (and about to invest in an electric wheelchair), she heard about Dave Asprey and began exploring his approaches, Dr. Terry Wahls’ writing, Dr. Dale Bredesen and his book The End of Alzheimer’s, and functional medicine — and finally began to see a positive change in her health
- that she gathered past labs, studied her inflammation levels, and began to design and implement a 36-variable protocol that gave her back her life
- that mental health has been a big component in her healing
- how she plans to continue the growth of the Support Fibromyalgia Network — through patient education initiatives that empower them to reclaim their health
- that she combats depression by keeping her mind focused and busy — and learning new skills
- that fibromyalgia isn’t currently classified as an autoimmune disease
Natasha Tracy is an award-winning writer, speaker, and social media consultant who was diagnosed with bipolar disorder at the age of 20. The author of The Bipolar Burble blog (named a top-10 health blog by Healthista, Health.com, Healthline, and others) and Breaking Bipolar for HealthyPlace.com, she aims to bring quality, insightful, and evidence-based information on bipolar disorder and related illnesses to the public while engaging with the mental health community. She is considered a subject-matter expert in bipolar disorder, and in 2014 was the recipient of the Beatrice Stern Media Award, an #ErasingTheStigma Leadership Award. The following year, she coauthored her first formal academic paper, Results From an Online Survey of Patient and Caregiver Perspectives on Unmet Needs in the Treatment of Bipolar Disorder, published in the Primary Care Companion CNS Disorders Journal. Natasha has also been named one of the top four online influencers in mental health by Sharecare.com. Her work has been featured in the Daily Mail (UK), Huffington Post, Healthline, and PsychCentral, among others. She recently released her book, Lost Marbles: Insights into my Life with Depression & Bipolar. In this interview, Natasha sat down with Lauren at HLTH 2019, where both were in attendance to receive their WEGO Health Awards — Natasha’s for Best Kept Secret.
Tune in as Natasha shares…
- that she was anti-psychiatry before she experienced a breakdown in college
- that she uses vagal nerve stimulation (VNS) as one of the treatments for her depression
- that she lives with bipolar type 2, which means she experiences hypo-manias, and not manias as in bipolar type 1 (both include depressive episodes, but the severity of the manic episodes distinguishes the two)
- that her first doctor refused to properly diagnose her, telling her she had “minor depression”
- that antidepressants can make bipolar worse, rather than better
- that she was dismissed by a number of therapists through university health services
- that she found community and affirmation through her university’s skydiving club
- that coping skills take work, but become easy reflexes over time
- that there is a difference between the brain and the mind — while we can’t control the brain, we can control our mind
- that she has survived suicide attempts
- that the majority of patients living with bipolar disorder experience tolerance to their treatment at certain stages — this is to be expected, and can be navigated
- myths and realities of bipolar disorder
- why it’s important to seek (good) help from a professional
- that seeing a therapist AND a psychologist statistically leads to better outcomes for patients living with mental illness
- the importance of seeking trusted information, and her recommended resources
Sylvie Leotin is many things. She started her career in France as a gold-medal ballerina, later moving to Silicon Valley as one of the first women to research at Stanford Robotics Laboratory. She has held positions in engineering, products, marketing, sales, business development, and communications; she is the founder and CEO of Tech Atelier, a multidisciplinary strategy agency advising startups and beyond. A contributor to media, academic, and literary publications, she holds an MS in Engineering and Economic Systems from Stanford University, as well as an MS in Computer Science. After a 20-year career, however, she became something else entirely: a cancer patient. Struggling to be recognized by her healthcare providers, she began to write about her experience. A new voice emerged, and her transformation led her to patient advocacy. A creative intellectual, her skill has always been in understanding unvoiced needs. And that’s exactly what she does in her blog, which has been shared widely around the world. In this frank and philosophical interview, she tells Lauren about the long road to her breast cancer diagnosis…and how she continues to seek improvement in patient-centered care while embracing life after treatment.
Tune in as Sylvie shares…
- that she knew something was wrong, but had inconclusive test results — and waited 3 years for a solid diagnosis (20+ biopsies and many doctors later)
- that meditation and hypnosis have been incredibly healing for her
- additional modalities that have helped her: Reiki and healing touch
- that the manner in which the medical treatments recommended for her breast cancer were administered felt both sterile and brutal
- that taking care of yourself with chronic illness is a full-time job — and it’s hardest when you’re alone
- something that really helped her navigate treatment: a workbook a friend co-created with her based on National Cancer Institute guidelines
- that she’s writing a book based on her experience — for both patients and practitioners alike
- that she has developed medical PTSD since starting her cancer treatment
- her realization that cancer is an illness completely misunderstood at the human level
- that it takes great strength to insist on changing doctors when you need to
- that healthcare needs to be redesigned around patient comfort
- how cancer is misrepresented in media
- that cancer is a chronic illness
- the emotional toll cancer takes on a patient
- that chronic illness forces patients to transform — and this involves grieving one’s old self as well as opening the door to one’s new self, and then communicating that to others
- how she has embraced her transformation and is getting closer to who she is now, every day
- that she has made a conscious effort to face her mortality
- why it was crucial for her to find her voice and learn to ask for what she needs
- that you cannot heal by fighting; healing comes from letting go
- that Twitter is her favorite support space as a cancer patient
Dibs Baer is a New York Times best-selling author and celebrity journalist. The author/co-author of six books, including, most recently, Lady Tigers in the Concrete Jungle: How Softball and Sisterhood Saved Lives in the South Bronx, she was formerly the executive editor of InTouch Weekly, and has worked on staff at numerous other publications. While she has been published extensively across varied media, she’s best known for her celebrity interviews. Dibs and Lauren connected over a piece Dibs was writing for Creaky Joints, the foremost online publication for arthritis patients (including RA and fibromyalgia patients, among others). It came to light that Dibs lives with rheumatoid arthritis (RA), and has for some time. It also just happens that she is transgender. The intersection of layers of invisibility in Dibs’ life became a conversation, and Lauren couldn’t help but invite her on the show to share more. Uninvisible community, meet Dibs!
Tune in as Dibs shares…
- how her early symptoms manifested
- that fatigue comes hand-in-hand with chronic pain, and that these symptoms create mental health concerns of their own
- that her pain was largely in her extremities — hands and feet
- about the Frankenstein shuffle, as experienced by RA patients
- typical age of onset for RA
- that she lived her early years as an out lesbian, and came out as transgender around the same time she was diagnosed with RA
- that her family was very supportive of her coming out
- that she experienced body dysmorphia in relation to her gender identity, and had difficulty looking at herself in the mirror…and that this identity confusion was compounded by the onset of RA, which made her even more confused and angry at her body
- that she has healed mentally with years of therapy
- that she is still legally known by her female-identifying first name, although she goes by “Dibs” — and that this can become an emotional hardship when being called at doctors’ offices and elsewhere
- that she had her breasts removed in 2012, and is uncomfortable showing her scars at certain doctors’ appointments because she fears the judgment of others
- that her treatment includes infusions of methotrexate, a cancer drug — but used in MUCH smaller doses for RA treatment, as well as Remicade (an immune suppressant)
- that RA is closely related to psoriatic arthritis and ankylosing spondylitis
- that one of the most common complaints among RA patients is not wanting to take methotrexate infusions — but in many cases, it’s a necessity for quality of life
- that getting an RA diagnosis made her start taking much better care of herself
- that she fears smoking may have triggered her RA
- that there is a high prevalence of RA among first responders from 9/11 — and she lived directly across the river from the Twin Towers and was in NY in 2001
- that she now plans each day around flares as they come and go
- that her treatments can cause gastrointestinal side effects, and that those can be difficult to work around day-to-day
- how difficult it is to have an invisible disability and maintain a 9-5 job
- that she has to plan her life around infusion scheduling — a constant 8-week cycle
- that the US healthcare system doesn’t help all people equally
A senior at Indiana University majoring in chronic illness advocacy and journalism, Sneha Dave is no stranger to #SpoonieLife. Diagnosed at the age of six with ulcerative colitis (UC), she is the founder of Health Advocacy Summit (HAS), an organization that hosts events in various cities around the country to provide education, insight, and community to an often underserved patient population affected by chronic illness: young adults transitioning from pediatric to adult care. HAS’s sister organization, the Crohn’s and Colitis Young Adults Network (CCYAN), connects the IBD youth community around the world. An advocate through and through, Sneha has spoken on Capitol Hill, featured nationally on C-SPAN, and contributed to U.S. News and World Report, Yahoo! News, Huffington Post, and others. In 2018, the We Are Family Foundation chose her as a Global Teen Leader through its Three Dot Dash program. Sneha has completed a research fellowship in health policy at Harvard T.H. Chan School of Public Health, where she is continuing research as an undergraduate in health care related to young adults. She has also interned at the Crohn’s and Colitis Foundation Headquarters and Pfizer Global Headquarters in health economics and outcomes research for Inflammation and Immunology. She created and chairs the first disability caucus in Indiana, and has served on the Democratic National Committee Disability Policy Subcommittee and Women’s March Disability Caucus. Sneha was awarded two academic fellowships with the Association of Health Care Journalists. She was previously a national policy fellow and now serves as the youngest director on the board for RespectAbility, a nonprofit fighting stigma and advancing opportunities for people with disabilities. Sneha has spoken at Stanford Medicine X; at the Harvard Youth and Public Health Summit; the National Academies of Science, Engineering, and Medicine; and other major avenues. She is also a national ambassador for the Invisible Disabilities Association and Lyfebulb. Sneha is passionate about advancing health care in rural communities, and is an ardent proponent for greater transparency in the patient advocacy space.
Tune in as Sneha shares…
- how she was diagnosed with ulcerative colitis, and what treatment was like in the early stages of her illness
- that she used the restroom up to 20 times a day in her worst flares
- that she weighed about 60 lbs during her freshman year of high school
- that she had a full colectomy in her freshman year of college (removal of her large intestine and colon)
- that she now lives with a j-pouch and has chronic antibiotic-refractory pouchitis —and is still seeking a viable treatment option for this condition
- why bowel disease is difficult to discuss as a young adult
- background on 504 accommodations (disability accommodations for US high school students)
- how Sneha’s mom has been an advocate for her over the years — and how they’ve become closer as a result
- how she seeks accommodations for her illness, and the barriers she’s had to surmount to do so
- her journey to identifying as disabled
- why she started Health Advocacy Summit
- the urgent need for peer support among young women with chronic illness, in particular
- why young adults have such particular needs in terms of disability support, community, and access
When Lauren first sat down to chat with Brooke Geahan (also known as Everyday Expert, per her Instagram handle) she mentioned Brooke’s “9 lives” — it seems she has this many, as Brooke has come through skin and cervical cancer, Lyme disease and comorbid tick-borne illnesses, pernicious anemia, SIBO, chronic EBV, atrophic gastritis, and autoimmune issues (RA, Hashimoto’s, and Celiac, to name a few), among other conditions. In her research since first being diagnosed, Brooke has come to believe that all of her illness began with a tick bite. For years, she tried every treatment available — or so she thought. In a moment of desperation, and partially because she was running out of money, she found a last resort that changed her life: apitherapy. After having seen over 50 doctors and spent over $150k — not to mention years of her life spent between physicians and clinics — she nearly died after contracting a rare infection brought on by her use of low-dose immunotherapy (LDI). A believer in Western medicine for saving her life, she also found relief in holistic treatments — but it wasn’t until she started stinging herself with bee venom that Brooke began to feel well again. Within three years, she was in complete remission from most of her ailments…and requests for help started pouring in. A calling was born, and she launched The Heal Hive to educate and promote scientifically-proven therapies for wellness, with bee venom therapy (BVT) at the center.
Tune in to learn…
- how Brooke recently faced her fears by returning to the place where she experienced her first chronic illness symptoms
- that she didn’t see her first tick bite — but she DID see her second
- that she rapidly lost functionality after her second Lyme infection
- that she sees Lyme as a gift now — she has shifted her perspective entirely
- a run-down of several of the treatments she tried (which allowed her to regain about 40% of her functionality) before discovering BVT
- that a chance run-in with a nurse from a Lyme clinic brought BVT into Brooke’s life
- that she prejudged BVT as “woo-woo”, and initially dismissed it
- that she started BVT, and after a few months tried LDI (not FDA-approved) at her LLMD’s recommendation. It crashed her immune system — and she got so sick she ended up in the ICU after being infected with rare bacteria radiobacter
- that radiobacter is so rare, she’s the only person in the US who has had it — and the only person who’s had it, period, who hasn’t been treated with chemo to eradicate it
- that when she was in the ICU, her family and friends were called in to say goodbye to her
- her realization after surviving radiobacter: that Western medicine saved her life in the hospital, but the medical system is broken — and she needed to stop blindly accepting advice, start asking questions, and do her own research
- “chronic illness can save your life” — and what she means by that
- the importance of balance — and socializing with more than just Spoonies
- that BVT is medicine — it’s only part of the healing picture — and that whole-body health (including mental health) is vital for full healing, as well as an acceptance of the good aspects of Western medicine
- how she empowered herself with research
- how The Heal Hive grew organically from patient outreach
- how BVT supports the bee population
- the potential for bee products to be used in a wider context of healing…and where research is still needed
- a reminder that nature is usually the greatest source of information, if we can return to it for knowledge
- how important it is to invest in comprehensive lab testing so you can get a true picture of what’s going on in your body — and why you need to do your own research in order to interpret the labs
- the importance of eating healthy — and why there is no excuse not to
- the importance of finding a community based in positivity — and outside of victimhood
- the importance of seeking reliable, TRUTHFUL, scientifically-backed information
Kelsey Darragh is a writer, comedienne, and former Buzzfeed producer. She currently hosts the podcast Confidently Insecure, and is a regular on Dating: No Filter, where she boldly shares some of her best and worst dating escapades (season 3 premieres Feb 4th on E!). You may also remember her from a series she did with former guest Lara Parker – Can We Cure – which took them both to a laser clinic in Florida to explore chronic pain management therapies. Kelsey may be funny as hell, but she also lives with one of the most painful chronic pain conditions we know: trigeminal neuralgia (as well as anesthesia dolorosa, a co-morbid condition that causes her to have constant facial pain). An outspoken LGBTQ+ and mental health advocate, she’s also been very open about her struggles with anxiety, and has partnered with organizations like NAMI to raise awareness. In this episode, we get down and dirty on ableism, life with chronic pain and anxiety, gaslighting in the medical industry, and how we need to actively seek to change our perspectives in order to better understand the world around us. Ladies and germs…meet Kelsey.
Tune in as Kelsey shares…
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that she developed trigeminal neuralgia (TN) after two botched jaw surgeries
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that her surgeon gaslit her from the get-go after her surgeries, telling her it was all in her head and part of the healing process that she should be in such pain
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that her surgeon has avoided her since, and she is now seeking legal action against him
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that she started making content about her chronic pain in 2016 in response to her own frustration
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the difference between a statute of limitation and a statute of repose in medical malpractice lawsuits
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her mission: to turn her pain into purpose
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that most people with TN don’t get the chance to move forward with litigation – which is part of the reason she’s pressing on
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that her TN pain comes in flares, and she was last admitted to the ER in 2017
-
how anesthesia dolorosa presents: her main source of daily chronic pain, it is confined to the bottom half of her face and constantly creates burning, stinging, and fire-like sensations
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that she’s had an anxiety disorder since she was young
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the mental health aspect of living with chronic illness – and how important it is to take care of one’s mental health, especially as a Spoonie
-
that she also developed agoraphobia in response to her chronic pain – because of the unpredictability of her TN flares
-
that she told herself she wouldn’t let her chronic pain stop her from living – she actively seeks to leave her comfort zone now
-
that she doesn’t take for granted that she presents as able-bodied, and doesn’t appear outwardly to be disabled
-
the concept of “bravery” for Spoonies, and what it really means
-
how gaslighting can look so different in the medical industry between white women and women of color
-
the challenge of being an advocate when you struggle to take care of yourself, as well
-
that she has exit plans for every situation in order to curb the anxiety she has in relation to her chronic pain
-
how she communicates with her pain: she invites it along with her in order to control her feelings about it, making the choice to keep living despite it
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that she endorses the use of medical marijuana before pharmaceuticals for pain management – but that she can only tolerate CBD, and not THC
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that she uses pharmaceuticals, acupuncture, and various other modalities regularly to treat her pain (in addition to CBD)
-
that she’s started taking better care of her whole body with exercise, going sober, fostering animals, prioritizing high-quality rest, and being intentional with her energies – doing the work
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that she recognizes her privilege in access to treatments, lifestyle modifications, and medicine
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that laser ultimately didn’t work to treat her TN – but some forms of TN can still be treated with it (and Kelsey recommends TN patients look into it)
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why her partner, Jared, is such a good support system
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how self-advocacy looks for Kelsey: boundaries, and a clear discussion of expectations
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that she offers fellow Spoonies permission to practice self care in whatever way they require
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the importance of checking your ego when practicing self-care, and understanding perspectives other than just your own
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examples of prejudice she’s experienced in the medical industry
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her top tips for chronic pain patients
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that part of the process of acceptance and growth she’s endured has been to mourn the person she once was and embrace her post-surgery life – which has, in many ways, empowered her
Emily Dwass is a writer living in Los Angeles. Having written for numerous publications about food, health, and cultural issues (including the New York Times, Los Angeles Times, LA Weekly, Chicago Tribune, and USA Today), she also served as the “Kid Health” columnist for the Los Angeles Times for four years. She has also written several feature scripts and been a writer on TV shows produced by Disney and Lifetime, among others. A writer by training and trade, she holds a degree in creative writing from the University of Illinois, and a master’s degree from the Medill School of Journalism at Northwestern University. Several years ago, she struggled to receive effective medical treatment and was forced to have a craniotomy to remove a non-malignant brain tumor. This experience led her down the rabbit hole of adverse women’s health experiences – and she began research into the depth of medical bias, discovering how both medical research AND the health system are, in many ways, rigged against women’s better health. This served as the jumping-off-point for her groundbreaking book, Diagnosis Female: How Medical Bias Endangers Women’s Health. In this episode, she sat down with Lauren to discuss her personal journey and what she discovered. Both shocking and revelatory, her exposé reminds us that health is a human right, and gives us hope that with accurate information, we can begin to better serve everyone.
Join in as Emily shares…
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the focus of her book: cardiology, neurology, autoimmunity, and gynecology
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that she had strange neurological symptoms for 4 years, at which point she was incorrectly diagnosed with Guillain-Barré syndrome – but never offered tests (MRI) to confirm the diagnosis
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that she was eventually given the correct diagnosis of a meningioma – a non-malignant brain tumor that had been growing for years – and offered a craniotomy to remove it
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that if she’d been diagnosed years earlier, she would have had more treatment options – including one-day radiation – as opposed to the craniotomy she was forced to have
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that she had a recurrence of the meningioma, and this time was treated with one-day radiation
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that her meningioma recurrence wasn’t noticed early on, because it was revealed that her physician likely hadn’t personally reviewed her imaging
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about the concept of empathy, and the patient-doctor dynamic
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her family’s choice regarding health insurance after she was diagnosed with her meningioma
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that she didn’t share with her employers about her diagnosis – because in Hollywood you can’t be “female, old, and sick”
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the concept of hysteria, and how an antiquated idea has trickled into modern women’s healthcare
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that for most of medical history, research has been done not only on male humans – but also on male tissue, cells, and animals – which reveals massive gaps in our knowledge and understanding
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that all of medical research excluded women until 1993
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that it wasn’t until 2016 that the NIH included sex as a biological variable in research – and mandated equity of male and female cells (which still isn’t always followed-through on)
-
that disparities in research filter into clinical care – in that males are considered typical, while women are considered atypical – leaving women with a systemic lack of recognition in the medical industry
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concerns with medical devices, particularly in gynecology – which are often approved without proper research. The most poignant example is the use of power morcellators, which have been known to spread cancers during/after fibroid removal (and examples in which women haven’t had voices in their own care)
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that doctors can have relationships with companies that design medical devices or produce pharmaceuticals, which can influence your care
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that the #MeToo movement may help women become stronger self-advocates in their medical care
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that women of color are disproportionately misdiagnosed, under-diagnosed, and generally disregarded by the medical industry
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the concept of medical trauma, and that women of color experience greater micro-traumas over time, which add up
-
her advice: have an “elevator pitch” for your doctor visit, bring an advocate, and don’t be afraid to get a second opinion
Atlanta native Samantha Denäe is a former magazine writer and entertainment blogger-turned novelist, poet, and screenwriter. At the age of 24, she was diagnosed with endometriosis – and turned this devastating revelation into a gift, making it her mission to educate women around the world through partnerships with the Endometriosis Foundation of America and The ENPOWR Project’s Endo Edukit, among others. An outspoken advocate for women living with endometriosis, she bares all in educational workshops and social media posts. While holistic approaches have helped her begin to control her symptoms, she presents a unique take on the nature of women’s pain – and whether or not we were born to suffer.
Tune in as Samantha shares…
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that she has lived with pain and nausea since she was 12 years old
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that she was initially brushed off and offered ibuprofen for her pain and long, heavy menstrual cycles
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that she was diagnosed in 2014, and first heard the term “endometriosis” weeks before graduating from college – after a near-codeine-overdose (and not being educated on narcotics by the doctor who prescribed them)
-
that she was given the firm diagnosis of endometriosis when she had cysts removed
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that within 3-4 years, she went from stage 1 to stage 4 endo
-
that she experiences bladder difficulties because of the growth of endometrium and scar tissue – mainly urgency – but that she still needs excision surgery
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that endometriosis spreads like a cancer, and is also the precursor to ovarian cancer if left untreated
-
the misconception that full hysterectomy or pregnancy can reduce/remove symptoms – and that these options are not fail-safe
-
that for years, she tried to convince herself that her pain was manageable
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that she deals with pain and fatigue regularly, in relation to her cycle
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that negative self-talk produces negative reactions in the body – and she’s learned to shift her anger at her body into love and acceptance
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that she’s come to the realization that she lives with endo for a reason – to be an advocate for others
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that she experienced depression in the early stages of her diagnosis and treatment – and that she continues to experience anxiety around every menstrual cycle
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the effect that endo has on female fertility
-
that she has tried many methods of birth control, and none regulated her period and endo symptoms – most gave her 90-day cycles
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that giving up birth control, yoni steams, meditation, and diet change have been the most useful methods of symptom regulation for her
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that she’s wary of hormones in food – particularly in meat and dairy – and has removed chicken and dairy from her diet accordingly
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that endometriosis has had an adverse effect on her romantic relationships – in that her fertility is effected, and that sex can often be painful
-
that women with endometriosis have their own shock to deal with before handling a partner in the picture – and that healing from trauma is ongoing work
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the importance of connecting spiritually with a partner before jumping to sex – especially when you have to make physical adjustments because of a medical condition
-
that her mother was the most difficult person to explain her endo to – and was against her first surgery until her doctor sat her down and explained it all to her
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that at one stage she was given chemo treatment for her endo, which put her into early menopause
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that she really connected to the community through social media, and that this connection has truly aided in her healing
-
that through social media, she connected to other women of color living with endometriosis – and that this was particularly poignant because it’s not a condition often discussed in her community
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that children aren’t learning enough about reproductive health in school – including menstrual cycles and more complex conditions
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that the focus of her advocacy is in educating kids
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the misconception that endometriosis doesn’t occur among black women
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the lack of information and research on endometriosis among black women
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the total misconception that African American women can stand higher levels of pain
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the high suicide rate associated with endometriosis
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her opinion that birth control is a form of general population control – and was invented in order to stop black women from reproducing
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the connection between birth control use and rising infertility rates in the US
-
her favorite green smoothie recipe
Lara Parker is a writer living in Los Angeles. She rose to popularity after publicly discussing her issues living with endometriosis and comorbid conditions, including vaginismus, vulvodynia, vulvar vestibulitis, PMDD, pelvic floor dysfunction, and interstitial cystitis, among others. You may remember her from the short-form docuseries Can We Cure, in which she and fellow Buzzfeed producer Kelsey Darragh tried laser therapy in an attempt to treat their chronic pain (new flash: Lara still uses laser – in case you were wondering, like I was!). Here’s the thing about Lara: she is as real as they come. She sees and acknowledges her privilege, she is unapologetically self-possessed, and she’s mad as hell (listen in to find out why). Her first book, Vagina Problems – a collection of essays that discusses the effects of endometriosis and chronic pain on her life and relationships – comes out October 6th, 2020.
Tune in as Lara tells us…
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that she first started noticing abdominal bloating and pain when she was in 6th grade; but she didn’t take her conditions seriously until about 3 years ago
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that she has been diagnosed with 10-12 different conditions
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that she was diagnosed with endometriosis about 6 years ago – through laparoscopic surgery (which is invasive and cost-prohibitive)
-
that the surgery she had in order to diagnose her endometriosis made her pain worse
-
that she also lives with constant bladder urgency
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that women’s health issues are constantly brushed off as not serious – and this puts women’s health at risk
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that she has almost always had pain during penetrative sex and orgasm – and felt betrayed by her own body for years
-
that she has had to go from hating her body to showing it love
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that she’s had to untangle not only physical trauma, but also emotional trauma
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that her work in therapy is to reframe her experiences
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that she’s become very forthright in communication because of her conditions – not only with sexual partners, but with others, as well
-
that she no longer blames her body for her experiences – and no longer makes apologies for what she needs
-
that she is grateful for her Spoonie support community, from whom she’s learned so much – and to whom she credits her increasing confidence
-
that writing became an outlet for her – because she didn’t know how to talk about her adverse health experiences
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that she didn’t know what kind of support she needed…or how to ask for it
-
that despite the few good eggs out there, she doesn’t feel doctors are on her side – because historically, they haven’t been
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that she has shifted the anger she used to have toward her body to anger she channels at the doctors who treated her negligently in the past
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that unless you’ve experienced chronic pain, you cannot understand it
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that endometriosis is a progressive disease – and for her, it’s gotten worse over time
-
that chronic pain is systemic – if it affects one area in your body, it can begin to affect others as you compensate in your behaviors
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that chronic pain makes you work harder
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the importance of an empathetic workplace
-
that most doctors really don’t know how to handle chronic illness, and tend to get frustrated when they can’t treat in their own specialty
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that the most caring practitioners she’s encountered have been holistic practitioners – as opposed to traditionally-trained Western doctors
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that she pursues an integrative approach in her treatment
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that her great grandmother was institutionalized…and she wonders if she could have had similar symptoms that were simply misunderstood in her time
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that she uses medical marijuana for pain management, as opposed to opioids
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that a hysterectomy is not a cure for endometriosis
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that endometriosis is consistently underplayed by the medical establishment and beyond
-
that the diagnosis and treatment of endometriosis amounts to a public health crisis
-
that birth control was more of a hindrance than a help to her, but, as with opioid use – she can’t judge anyone for using these drugs, as needed
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to remember that doctors work for you, and that you are the boss of your body
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that she will always seek pleasure despite her pain, and will never give up sex and orgasms
At this point you’re all pretty familiar with my voice, right? Well, as we head into the holiday season and close in on our one-year anniversary (!!), we thought it was time we gave you what you’ve been asking for: more of me! This episode was initially recorded for a FB Live appearance with Naomi Batty of Holtorf Medical Group – and we had such a great chat, I thought it would make the perfect round-up for 2019 and give everyone more of an insight into my WHY – and how the podcast was born out of my adverse health experiences. Learn more about my journey through Hashimoto’s disease, sleep apnea, depression, and anxiety – and how I’ve found strength in the community that Uninvisible Pod has given me. Y’all are my secret sauce – and if I know how to do anything, it’s how to tell stories…and give you the platform to share yours. Here goes nothin’! (Please also note: this episode was recorded a few months ago, and in it I mention I am a finalist for the WEGO Health Awards 2019. By now you probably know – I won!)
Listen in as I share…
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how I was first diagnosed with Hashimoto’s thyroiditis and sleep apnea
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how common thyroid disorders can be
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why I think I was sick way before I was diagnosed
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how functional medicine was my saving grace
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how I sought resources after being diagnosed, and didn’t come up with much
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how to find support and resources, and to navigate through your own pride
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how I’ve treated my Hashimoto’s – with combo therapy
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how I experienced medical gaslighting: from a female endocrinologist I used to see
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how I’ve found peace with my body as it is now – and show it love
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the importance of staying open-minded to treatment options when you live with chronic illness
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how I learned to advocate to myself
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the importance of follow-up – and how it’s your responsibility to yourself as a patient
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the value of finding a doctor who is able to make time for you
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how empowering it is to become an involved and educated patient
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that it’s not all in your head – and you know your body better than anyone else does
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how getting sick forced me to communicate better than ever with my nearest and dearest
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that most autoimmune disease starts in the gut
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how peptides and supportive supplements have aided in my healing
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the importance of reducing everyday exposure to toxins – in makeup, skincare, hair care, household cleaners, etc.
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why I am a student of my body, and follow its shifts both excitedly – and accordingly
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how I healed my relationship with food when I adopted AIP
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how Uninvisible Pod was born organically from my experience and background
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the importance of diversity in the discussion of invisible chronic illness – and how I’m continually working to address those gaps in the conversation
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how great it is to find a community – and fellow Spoonie friends
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that things are not any less complicated post-diagnosis: they are just complicated in different ways
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why we have to be open to changing our own stories
Join us as we revisit some past guests to discuss new topics! Trishna Bharadia and Anisha Gangotra are sisters – both thriving with their own chronic invisible illnesses. Trishna lives with MS (multiple sclerosis) and works tirelessly as a patient advocate; Anisha lives with UC (ulcerative colitis) and has also survived PTSD (post-traumatic stress disorder). Anisha was inspired by her own journey to begin teaching inclusive dance classes – which Trishna frequently attends! The two are a wealth of information and experience, and are incredibly close…chronic illness seems to have brought them closer, rather than pushing them apart. In this episode, Lauren sits down with them to get more into the nitty gritty of their healthcare experiences – including their take on the NHS.
Listen in as Trishna & Anisha share…
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that Trishna was diagnosed with MS before Anisha was diagnosed with UC – in 2008
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that they live with their parents, and there have absolutely been growing pains as they’ve both endured symptoms and diagnoses
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that they understand each other so much more now that they’ve both received chronic illness diagnoses – and that ultimately, these conditions have made them closer
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that they expected to be taking care of their parents by now – but that their reality is, in fact, the opposite
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that the try to socialize more locally now, and with friends who understand what’s going on with them
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understanding the cost of medical care within the NHS
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that certain communities restrict or stigmatize access to medical care
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the difficulties of NHS branches being disconnected by region
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the advantages and disadvantages of nationalized healthcare – within the NHS as we currently know it
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their thoughts on the future of healthcare in the UK
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the levels of responsibility that fall upon patients within a nationalized healthcare system
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that we all become patients at some point – and so we all need to get involved in understanding and advocating for the best healthcare possible
Camille Thornton-Alson is a classically trained actress, coach, and teacher. A longtime friend of Lauren’s, the two met while studying abroad in London – right before Camille began a stint in Paris at L'École Internationale de Théâtre Jacques Lecoq. Following her stay in France, Camille returned home to the Bay Area and was immediately stricken with a mysterious illness…one that took her almost a decade to break through. Mistakenly diagnosed with chronic fatigue syndrome, for years she struggled to find her footing while maintaining an active career in the arts (and graduating with a MFA from the University of Washington). Eventually, she was diagnosed with lead and mercury poisoning…and after years of inner remediation (think major detoxing and every change in diet – and in mindset – that you can imagine), she now lives a full and functional life, mindful of her sensitivities. She teaches acting at Santa Barbara City College and USC, among others, and is the co-founder of Speak LA, an organization founded to help actors find their way in Hollywood. In this episode, she sat down with Lauren to share her journey – long and winding, but with a happy ending indeed.
Tune in as Camille shares…
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that she first got sick at 19 years old – and got progressively worse over several years with various infections
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that she finally decided to do something about her illness after collapsing in a dance class
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her symptoms: inexplicable chronic pain, fatigue, infections, brain fog, an inability to digest food, and muscle weakness
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that she advocated for herself early on: sitting her doctors down at that young age to give full health histories
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that her doctors told her she had CFS, and that she’d have to learn to live her life that way
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that it took 7-8 years for her to get the diagnosis of lead and mercury poisoning
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the fine line she walked between giving up and striving through her illness
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that she lost a lot of friends during the period of her illness
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that the only people she could keep up with were seniors in a Tai Chi class – but it was very nourishing to move and commune with others
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that she would spend the week before and during her period almost unable to open her eyes from her crippling fatigue
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that she saw her life passing her by, and struggled to find beauty in who she was and in her experience
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that she came down with EBV while in grad school
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that early integrative testing indicated a thyroid problem – but her integrative doctor had a feeling that the thyroid problem was tied to something deeper, so she kept digging…and found lead and mercury poisoning that were off the charts
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that she made a decision very early on that she would not die
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that the illness bred an underlying fear in her: would she make it through today, or survive tomorrow?
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how she gave in to healing protocols and moved forward despite her fears
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that she went through a grieving process once she was better, because she’d fought so hard for years and realized her survival, fully acknowledging her past
-
what she learned from her illness – that the gift of chronic, life-threatening conditions is that you learn to take care of yourself
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that she felt resentment through her healing, feeling she was denying pleasures to herself – but so appreciates the importance of her protocols in her current, full health
-
that the biggest change in her life was in changing the way she ate
-
that it wasn’t only diet that allowed her to detox: she also used in-office IV chelation for a full year, during her final year of grad school
-
that none of her chelation treatments were covered by insurance – but they saved her life
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that surviving chronic illness gives you a deeper understanding of humanity – and deeper empathy
-
that self-advocacy and survival can be a lonely road
-
why she believes that there is always a diagnosis – an underlying cause
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that she was additionally diagnosed with fibromyalgia – which was actually a symptom of her lead poisoning
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that your body loves you and is on your side – but it’s trying to tell you what’s wrong
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that getting sick forced her to check her ego
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how gratitude has transformed her mindset
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that she continues to choose – on a daily basis – to make her wellness a priority
Thomas Smith is a an international consultant providing expert patient insights; diagnosed with cystic fibrosis (CF) as an infant and taking control of his livelihood in his late teen years, he is now involved with numerous patient advocacy groups that span the rare and chronic disease spectrum, with a focus on mental health. A former member of the European Health Parliament in Brussels, he’s an expert patient reviewer for the European Medicines Agency, a trustee at Britain’s biggest national mental health charity, Mind, and works for the Research Ethics Committee (as part of the Health Research Authority) of the NHS. He also works with patient organizations all over Europe, including the European Patients’ Forum, EURORDIS, and EUPATI. Combining experience of policy, clinical research, and media representation skills with an unshakeable belief that meaningful patient involvement is key for sustainability and meaningful innovation in healthcare, Thomas is a constructive challenger of the status quo. As in previous CF patient interviews, you may hear him clearing his throat periodically throughout this interview – it is to be expected![Text Wrapping Break]
Tune in as Thomas shares…
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that he was diagnosed with CF as a baby, and later fitted with a gastrostomy that he has since removed
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that it was as a teenager that he decided to take control of his health – and come to terms with his life with chronic illness
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that he was later fitted with a passport (similar to a central line) that enables him to get drugs directly into his system through a vein in his bicep
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that he started taking better care of himself because he didn’t want to present like a sick person – and he now does physical therapy 2-3 hours daily
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that his physio is time-consuming, and while it’s not the most enjoyable part of his day – he loves that it enables him to get out and live his life with purpose
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that his CF care team never discussed life expectancy – and he doesn’t see the benefit of discussing it at this stage, because he likes to focus his energy on moving forward
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that there’s very little you can do with CF to “feel better” – but you CAN actively improve and prolong your life despite discomfort
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that as a young man he did a lot to either minimize and live in denial over his diagnosis
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that the moment he began to engage with his disease, his world completely changed and he began to grow
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that he loves being a patient advocate – and feels better when he works “on” his disease, meeting others who know what it’s like and engaging with community
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that advocacy has enabled him to better understand life in general
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that his family has supported him practically, but it’s been Thomas’ responsibility to engage with others in the community and find those who understand his experience
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why it’s important not only to engage with patients in your own community – but also to engage outside of it
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why he doesn’t believe in “tokenism” as a patient advocate, and why patient advocates should be compensated for their work – because volunteerism is, ultimately, exploitative
-
that patients aren’t more important than anyone else in the process of clinical trial/treatment design – but the idea that they are any less important is laughable
-
that his Dad is a GP, and this has helped him understand the patient-doctor relationship on a deeper level – he can see behind the curtain
-
that advocacy has helped him so much emotionally, and taught him how to advocate for himself – which has likely improved his health in general, and the level of care he’s received
-
that he is a trustee at Mind, a mental health charity in the UK
-
that he has had three failed assessments for lung transplant thus far – but no transplant as of yet
-
that there is a mandatory psychological assessment that goes along with the lung transplant assessment through the NHS, and as part of that process Thomas began seeing a clinical psychologist specializing in CF – and continues to regularly, to this day, for his overall health and wellbeing
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the importance of closing the wage-gap among millennials, and how work-life balance cannot be achieved given the current state of the world economy
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that commitment and consistency can change your life – whether you’re living with chronic illness/rare disease, or not
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how nourishing community can be in the chronic illness world
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the importance of acknowledging and owning your situation if you’ve been diagnosed with chronic illness
Jaelin Palmer is a 25-year-old activist and organizer living with CRPS (complex regional pain syndrome, or reflex sympathetic dystrophy) and TN (trigeminal neuralgia). She was diagnosed with CRPS at 15, following a jaw surgery gone wrong; the TN diagnosis came much later, despite her extreme chronic facial pain. Her mother, Natalie, joins us in this special mother-daughter interview not only because she is Jaelin’s full-time caregiver, but also because we so value her perspective as the loved one of someone living with chronic invisible illness. Both women have gained and lost so much in the experience of living with and striving through chronic illness, and have a wealth of knowledge to share. Jaelin is a happy, social individual, committed to a number of causes – but chief in her interests is LGBTQIA inclusion and awareness (she and her sister McKenna founded the Yucaipa Rainbow Coalition), as well as chronic illness activism (especially with groups like Fight Like A Warrior). In their journeys, mother and daughter have learned what it means to be an advocate – both for oneself and for others – and sat down with Lauren to enlighten listeners with their message of hope, love, and strength.
Tune in as Jaelin & Natalie share…
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that Jaelin had jaw surgery to fix an underbite – and it was this surgery that caused her TN and CRPS
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Jaelin’s ambition to succeed and to learn: that she was in too much pain to finish high school, and had to transition quickly to home schooling in order to get her diploma
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that both Jaelin and Natalie experienced medical trauma in having to explain Jaelin’s pain and constantly relive her story in the early days of her diagnosis and treatment – but they’ve learned how to better communicate with doctors since then
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that at one stage in the process of diagnosis, one doctor made the outrageous recommendation that Jaelin (then 16 years old) lose weight to calm her jaw pain
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that there are 50 million people in the US living with autoimmune disease – more than with cancer and heart disease combined
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one of the main reasons autoimmune disease research is misunderstood and underfunded (and patients are often first referred to psychiatric care) – because the majority of people living with these illnesses are women
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Jaelin’s acknowledgement that Natalie was “ferocious” in the push for her care
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that Jaelin graduated magna cum laude from college, and would like to go to law school – but is limited by her illness
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that pursuing healthcare with chronic illness is a full-time job
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Natalie’s recommendation that adults teach their kids the process of participation in one’s health and insurance needs
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the discovery that Jaelin’s jaw surgeon had knowingly damaged nerves in surgery – which left her with lifelong chronic pain – and she was beyond the statute of limitations to sue for malpractice
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that Jaelin had a second surgery to improve her comfort levels
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that Jaelin weaned herself from opioids as much as she could during a fellowship in Washington, DC
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the importance of registering with university disability offices to take advantage of opportunities to reschedule tests, etc – which are a student right
-
why Jaelin is upfront in communication with professors and other figures of authority in her life
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why CRPS and TN are both nicknamed “the suicide disease” – because both rank in pain above childbirth, and roughly 25% of patients take their lives because of the pain
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that Jaelin had her gallbladder out, but didn’t even notice the pain because as it compared to her facial pain…the gallbladder was barely a blip
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that Jaelin lives through moments of doubt, questioning her sanity AND her identity because of her chronic pain
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that Jaelin has Type 2 TN on both sides of her face, and as such is not a candidate for microvascular decompression surgery
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that Jaelin is currently seeking treatment with doctors at UCLA and at the Mayo Clinic
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that Jaelin helped plan LA’s inaugural Autoimmune Walk, along with Barbara and Haley Ramm
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that the first thing Jaelin does every day is check in with her online community
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that Jaelin struggles to make ends meet because of her disabilities
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tip tops not only for patients, but also for caregivers and loved ones of individuals living with chronic illness
Dr. Rashmi Mullur is an integrative endocrinologist leading practices at UCLA and the VA in Los Angeles. She received her medical degree from University of Texas Southwestern Medical Center, and completed her internal medicine and chief residency at Barnes-Jewish Hospital/Washington University School of Medicine, St. Louis. After this, she completed a fellowship in Endocrinology at the VA-Cedars Sinai Medical Center. A certified yoga instructor registered with the International Alliance for Yoga Therapists (IAYT), she is also a board-certified integrative medicine practitioner (American Board of Integrative Medicine), in addition to completing a research and medicine education fellowship. Dr. Mullur is also part of the David Geffen School of Medicine at UCLA curricular faculty, and chairs a course in endocrinology for first-year medical students, as well as leading the UCLA Health Integrative Medicine Collaborative as its education director. Her goal is to educate up-and-coming doctors in integrative medicine as they enter their training, with a focus on experiential learning. She has pioneered several clinical programs using integrative medicine techniques for the management of chronic disease, and she is recognized as a national leader on the use of integrative medicine for patients with diabetes. Given her background, the focus of her practice is in fully integrating Eastern and Western approaches to clinical care, using teachings from yoga, TCM, Ayurveda, and other modalities to truly connect mind and body in the treatment of endocrine disorders such as diabetes, thyroid disorders, stress management, and fatigue – often referring to acupuncturists, movement specialists, and other practitioners to complement her work. As a patient, Lauren can attest to the effectiveness of Dr. Mullur’s approach. One stunning fact: she takes a longitudinal history of each new patient, and has tailored her schedule to spend as much time with them as they need for appropriate treatment. So, basically: the needle in the proverbial healthcare haystack, and Lauren’s medical hero.
Listen in as Dr. Mullur shares…
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that she most often deals with patients who live with chronic stress and fatigue
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that she is a special needs parent, and that juggling work, life, and care-giving can be exhausting – so she has to find the space personally to deal with those challenges
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that her own experiences have given her a better understanding of what her patients are feeling, which has strengthened her empathy
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that while many of her patients live with disorders that aren’t validated by lab testing, that doesn’t mean they don’t require care
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an overview of the endocrine system, which is the focus of her work
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that she takes a longitudinal bio-psychosocial history of all her patients – and why that’s important
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her role: to bring her patients back to their own wellness
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that she started utilizing integrative medicine in her practice in 2011
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why “adrenal fatigue” isn’t an accurate diagnosis
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what makes a good doctor: curiosity
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an issue with the US healthcare system: that doctors are strapped for time with their patients
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that the VA in Los Angeles has been responsive to alternative and complementary approaches to medicine (such as yoga, Tai Chi, and acupuncture)
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how the VA has been advanced in its approach to helping veterans wean themselves from opioids, where addiction has become an issue
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how the VA has also led the charge with regard to telemedicine, and why she’s excited to be a part of its growing program
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the challenge of encouraging patients to find balance
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why she turns to her yoga training in her integrative approach to care
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that some patients have been ill for so long, they can’t hear what their bodies are trying to tell them
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that so much of suffering (from misunderstanding) – for both patients AND physicians – is based in ego
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that as a practitioner, she sees herself and patients in partnership over their care
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what’s shifting in medicine: doctors’ comfort with saying “I don’t know”
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that a lot of physicians deal with the same symptoms as patients: stress and fatigue associated with “burnout”
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the advantages and disadvantages of group intervention in medicine
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where physicians can improve in their approach to treating pain – in referring to PT, acupuncture, etc.
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the problem with hormone testing: that hormones are only a snapshot in time, and are constantly shifting – which makes the nuances harder to track
-
that treating fatigue with hormones can often be like using a sledgehammer to knock on a door – it is often far too aggressive
-
that Deepak Chopra is also AN ENDOCRINOLOGIST!!!! (This fact blew Lauren’s mind!)
-
that we need to start speaking the language of energy medicine in traditional Western approaches to care – and that she thinks this will be the next advancement in medicine
-
that she’s working on a book right now – all about coping with stress and fatigue (check here for updates!)
-
the importance of patient empowerment – which goes beyond the concept of “patient-centric” care
-
her role as an advocate in her children’s care – especially in the care of her special-needs son
-
the power of social media to connect patients and caregivers
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how elimination diets should work: for a short period of time, with professional supervision, and with the plan to reintroduce “no” foods in the future
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that she sees a lot of orthorexia in her practice – especially among younger female patients with diabetes, who are also often at risk of micronutrient deficiencies
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why it’s important for patients to document their symptoms for their doctors
Anisha Gangotra is an inclusive dance instructor living in the UK, and the sister of former guest Trishna Bharadia. In 2008, at the age of 24, she was diagnosed with ulcerative colitis (UC) – an autoimmune condition that attacks the gut. Shortly after, in 2011, she was a victim in a high-speed car accident; during her long recovery and rehabilitation, she was additionally diagnosed with PTSD, depression, and anxiety. For the next 4-5 years, she sought to access mental health treatments such as CBT (cognitive behavioral therapy), EMDR (eye movement desensitization and reprocessing, covered in Episode 11 with Michele Sherman MFT), and others – but in some cases, it took years for her to receive proper access to these treatments. In a total career shift inspired by her own experience, she also began working full-time to support people with mental health issues in the workplace – be they seeking work, navigating discrimination, or considering leaves of absence. In 2015, she began to teach inclusive dance classes – designed for people with disabilities/long term conditions, as well as for those without – partly for her own mental and physical health, but also to provide a safe space for others with similar conditions to rediscover freedom and joy in their bodies – in a safe space.
Tune in as Anisha shares…
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that colitis (including UC) is under the same umbrella as Crohn’s – the inflammatory bowel diseases (IBD)
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that she first detected the potential for UC when she passed blood in her stool
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that her diagnosis was not straightforward
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that UC consists of flares and periods of remission, much like many other autoimmune diseases
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about the period of onset, during which she questioned her own sanity
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the relief of receiving a diagnosis
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that her first colonoscopy was administered without sedation – or explanation
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that she now has a medical team she truly trusts – even though she has to travel quite far to reach them
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the importance of connecting to a chronic illness community
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her road to recovery post-car-accident: not just physically, but mentally
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how she discovered she was living with PTSD – she began to jump at loud noises, or feel triggered at the smell of smoke, crushing metal (cans), etc
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her journey through therapies to treat her PTSD – she started with CBT (two rounds), but found EMDR to be most effective
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that CBT gave her behavioral techniques to cope with triggers, but EMDR helped to remove the triggers entirely
-
a description of how EMDR works to engage both sides of the brain, allowing it to get “unstuck”
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that she lived with her PTSD symptoms for 4 years before she found EMDR – and she believed, the entire time, that she wouldn’t have to continue to live her life in fear
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that she was also diagnosed with anxiety and depression associated with her PTSD – all of which emerged after her car accident
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that she decided something good must be able to come out of her adverse experiences – and so she changed careers and began to work in the mental health field, assisting those afflicted with employment concerns
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that she sees her experience as a major strength in her job
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that she discovered Zumba as part of her recovery, and fell in love with it – specifically because it wasn’t about getting it “right”, but about enjoying it
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how teaching inclusive dance inspires her
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the role her family has played in her ongoing care
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that healing is not linear, and she still has dips in her mood from time to time – and that this is OK
-
that the responsibility of teaching her class and showing up for her students has helped her work through her moods and been key in her healing
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a study of her resilience – and an acknowledgement of her strength
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how she practices self care and manages her symptoms – and lives a full life
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the importance of doing one’s own research as a patient, and seeking targeted treatment by becoming engaged in one’s care
-
the importance of travel to expand her perspective – despite its challenges to her health
Devri Velazquez – or, as she has aptly proclaimed herself, “pretty, sick. chick” – is a content creator, writer, editor, speaker, model, and advocate for chronic illness. She lives with a very rare form of vasculitis called Takayasu’s Arteritis. Diagnosed in 2011, she was told by doctors that she might not live to see 30 – and she turned 30 last month! Not only has she defied the odds with her physical health, but her mental health has played a big role in her ongoing wellness and healing. Since diagnosis, she has worked tirelessly to advocate for awareness of this rare disease, connecting with individuals all over the world living with similar conditions. She sat down with Lauren to talk about what motivates her, how she approaches her mindset, and why hard boundaries in her relationships have kept her in good stead. We also touch on gender, ethnicity, and sexual identity as they apply to her medical experience.
Tune in as Devri shares…
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that she was diagnosed during in her last semester of her undergrad degree
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that her early symptoms included brief vision loss, rapid weight loss, jaundice, limp joints, hair loss, and heart palpitations
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that it was confusing to connect the dots of her symptoms – and that at the time she felt like an outsider looking in on her body, disconnected from it entirely
-
the revelation that caused her to look into her health more deeply: her mom, a nurse, urged her to go to the hospital
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that it was lucky her parents knew people at the local hospital – because those connections got her a diagnosis within days of checking things out
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that she saw how hard people rallied around her to find an answer
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that she was so sick at diagnosis, she worried she’d die in her sleep
-
that she was on bed rest for a full year after diagnosis – which is the antithesis of her personality
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that her partner helped take care of her that first year after diagnosis, which really humbled her
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the importance of asking for help – it’s OK, and it’s necessary
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that as intense as her physical symptoms were, the mental battles that she faced were harder
-
some background about Takayasu’s Arteritis
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that the biggest registry for Takayasu’s is in Japan, and consists of about 1,300 patients
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that 1 in 2-3 million people may be at risk for Takayasu’s – so, in essence, she is the only person in Brooklyn living with it
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that she had to get her mind around the idea of death, and come to terms with it
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that she has created discipline around her diet, rest, and relationships
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that when she was diagnosed in her early 20s, medical professionals told her family that the low life expectancy with Takayasu’s meant she had a 40% chance to live 10 more years – and she just turned 30
-
that she lives in a constant 8 or 9 on the pain scale, but has learned to accept that level as her 2 or 3
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that she’s learned grace from her experience with chronic pain
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that her pain is focused mainly in her joints, and she occasionally uses a cane as a mobility aid
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that as a freelancer, she is unable to consistently maintain health insurance
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that she takes great inspiration from the world around her
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that she feels more pain when she stands still – which is both a reality and a metaphor for her life
-
the role of mindset in her health
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that she would like everyone to have access to healthcare
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that artists and creatives aren’t taken as seriously as others in the healthcare space, and they need to be
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the need for greater compassion in politics and in healthcare
-
the burden of her healthcare costs, which make her feel like her chronic illness is a punishment
-
her experiences of judgment, harassment, and abuse in the healthcare system as a queer WOC with chronic illness
-
how the #MeToo movement has taught her to raise her voice in uncomfortable medical situations
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that she shares her story to remind others they are not alone
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that she experienced her first bout of depression at 13, and has had support from her family since the beginning
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that she utilizes therapy for her mental health, and that she started her own meditation practice at the age of 12
Chris Armstrong, PhD was first introduced to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) through research into metabolomics at the University of Melbourne, Australia. As he delved deeper into his work, he discovered its connection to ME/CFS patients, and empathized so much with their plight – and the lack of resources, funding, and research available to both patients and clinicians – that he made it his mission to continue research in this field in the hope of finding a cure. Since publishing his first ME/CFS metabolomics study in 2015, he has continued research into the disease, spurred on by patients whose stories have moved him. As the Open Medicine Foundation’s Science Liaison, Chris works on collaborative studies with their partner organizations and helps to translate scientific language for the public. He is also a Visiting Scholar at Stanford University.
Tune in as Chris shares:
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how he got involved in ME/CFS research
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his main area of expertise: metabolomics
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that ME/CFS outbreaks can be traced back as far as the mid-19th C, with symptoms commonly related to significant concerns with fatigue, sleep, pain, brain fog, and a 50% loss of general function
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a description of PEM – post-exertional malaise – which is the main component of ME/CFS
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that there are up to 50 symptoms associated with ME/CFS, but the main five are: PEM, fatigue, unrefreshing sleep, cognitive impairment, and pain
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that ME/CFS is highly comorbid with fibromyalgia and other invisible illnesses
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that ME/CFS was originally described as a flu- or polio-like illness; and was first properly explained by the Ramsay definition and given the moniker of “Myalgic Encephalomyelitis”
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that patients need to have ME/CFS for 6+ months in order to receive a diagnosis
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one of the major schools of thought with regard to ME/CFS: that it stems from a dysfunction of stress response in the body; it’s possible, however, that bacteria and other pathogens may also play a role in onset
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that 1 in 200-300 people has ME/CFS
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that ME/CFS is NOT categorized as a rare disease; but it’s treated by the medical community as such – creating stigma through lack of research and understanding
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that ME/CFS has been commonly misdiagnosed as a form of hysteria – both in the past and in the present
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that very few clinicians dig in deep enough with their patients in order to give them an ME/CFS diagnosis – but that burden is not just on doctors, as diagnostics and treatment guidelines need to be standardized in order to support their work
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that the Open Medicine Foundation was built to provide effective treatments for ME/CFS patients
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that meeting patients has inspired him in his work, even from the very beginning
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the desperate need for funding for continued research into ME/CFS
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the politics of funding medical research
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that ME/CFS is often considered to be more a psychological than a physiological illness
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that the National Institutes of Health (NIH) has been more receptive than some Aussie governing bodies when it comes to research into ME/CFS
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the biggest bright spot in ME/CFS: the momentum of funding for research
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OMF’s collaborative research initiatives with Harvard, Stanford, and others
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that ME/CFS could be a collection of several diseases, and not one disease in and of itself
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the importance of specifics in diagnostics
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why medicine needs to be patient-centered
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the importance of pacing in order to avoid a crash related to PEM
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info on OMF’s current fundraising initiative, #TripleTuesday – and how to donate to ME/CFS research and have your donation tripled by partners!
Nitika Chopra is, in her own words, “a woman on a mission to inspire radical self-love.” Her goal is not only to show us how to fall in love with ourselves, but, like her, to “learn to thrive with a chronic illness.” If she’s one thing: she’s real. Nitika shares the raw pain she had to grow through in order to find that self-love she speaks so passionately about. Diagnosed with debilitating psoriasis at 10, she was further diagnosed with psoriatic arthritis – which at that point had taken over most of her body’s joints – at 19. She lived for years with unsightly sores from head to toe, unable to move without severe pain. She lived through, as she tells us in this episode, more than 15 years of pain, insecurity, confusion, and depression. In that darkness, she made a decision: “to be more committed to [her] happiness than [to her] suffering.” By 2010, she’d mastered the concepts of self-love and self-care and founded lifestyle magazine Bella Life; a few years later, her now-glowing skin came center-stage as she became the host of Naturally Beautiful, a talk show that aired on the holistic lifestyle channel Z Living. Most recently, she became a luxury skincare spokesperson and regular expert on QVC. She’s also the host of her own podcast, The Point of Pain, which explores how we can navigate pain in our lives – both literally and figuratively – with grace and heart. This week, she launches perhaps the most heart-centered of her projects to-date: the first annual Chronicon, in partnership with Healthline. For one day in New York City, she and numerous chronic illness advocates and experts will join panels (in an ADA-compliant space!) to talk about life with chronic illness: the good, the bad, and the ugly. She prides herself on being able to truthfully feel the fear – and do it anyway. And do it she does! We are so excited to hold space for this inspirational, real woman – who pulls no punches. Uninvisible Pod crew: meet Nitika! (P.S. We know you’re all wondering – and no, she’s not related to Deepak or Priyanka!)
Tune in as Nitika reveals…
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that she was 10 when she got her psoriasis diagnosis – following a sterile, cold experience being biopsied
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that she was diagnosed with severe psoriatic arthritis at 19
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that she still struggles with inflammation, which inspires self-love conversations with herself constantly
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that she’s on AIP for her health
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that just because she doesn’t have psoriasis all over her body, doesn’t mean she isn’t managing her symptoms daily
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that she spent a lot of time beating herself up with what she calls “toxic positivity”, or the “pink bubble”, in the wellness space – that she followed the prevailing teaching that there was something misaligned in her perspective, and she had to fix it (and that, in essence, her ailments were her fault)
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that she’s passionate about debunking “toxic positivity”
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that her bones began to deform because of her arthritis
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that she is a very spiritual person, and finally came to the conclusion that maybe God also made medicine to help cure her – not just to hurt her
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her wake-up call to medicine: when she couldn’t make it to an audition, and realized that she wasn’t living a full life
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that not everybody needs to take medication – but it really changed her life
-
that no amount of green juice would have saved her – she really required medicine
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that in high school, she’d wake up with bloody sheets from the itching in her sleep
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that her ex-husband made her feel that she could trust herself – that her gut was teaching her the right things, and she needed to listen to it
-
that she has truly become her own advocate, even though she’s always considered her mom to be her nurse
-
that she’s been creating content for 10+ years now, but her health journey was never what she wanted to lead with
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that she’s always been proud of what she’s overcome and been through – but she didn’t want that journey to define her life
-
that in 2016, work began to dry up – and by the end of 2017, she had connected to her larger purpose: and realized it was time to talk about the one thing that moves her in a way that nothing else does – her health journey. As such, the world began opening up to her again
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that when she meets someone who’s struggling with their body in ways that she can relate to, nothing moves her more than being able to help that person
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how CurvyCon inspired her
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that Chronicon feels like a place that she’s creating for a LOT of people to finally belong
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how she creates balance in her life – and that she doesn’t manage everything perfectly, but she’s always learning
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how she practices self-love and self-care
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that she’s experienced more adversity as a woman in the medical system than as a woman of color
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that getting divorced was less isolating than being chronically ill
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that she started Chronicon in part to end the shame and isolation associated with chronic illness
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the American Health Council’s projection: that by 2020, 157 million people will have a chronic illness
-
that she’s learning so much from attendees and panelists at Chronicon
Clare Stafford is one of Lauren’s oldest friends. Hailing from Melbourne, Australia (by way of Irish-born parents), Clare has built a career as a social justice advocate and lawyer. Having worked in refugee camps in Greece and campaigned for indigenous rights in Australia, her focus has always been on immigration, native rights, gender equality, and climate justice. She is an avid follower of music, traveling the globe to attend festivals and visit friends far and wide. In 2017, shortly after turning 33 years old and subsequently losing her mother to lung cancer, Clare herself was diagnosed with cancer in her left breast. She has now survived this cancer twice, and has been told by her Western medical team that a third occurrence would mean she’d be treated as terminal. When she discovered integrative medicine, her doctors laughed (in a good way!) at these claims. She sat down with Lauren in July 2019 to discuss her recent trip to an integrative medicine center run by Cuban doctors in Colombia (Instituto Medico Cubano) – and how the holistic treatments she received there have changed her perspective on cancer – and on chronic illness.
Tune in as Clare shares…
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that she knew something was wrong 18 months prior to being diagnosed with estrogen-positive breast cancer – and had ECGs that showed nothing was wrong despite pain near her heart
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that she finally put her foot down and was given an ultrasound, which showed two tumors right in the area where she had been experiencing pain
-
the interesting connection between the brain and our experience of pain – because Clare’s tumor was not of a kind that typically causes pain, and yet the alarm systems in her body were somehow alerted that something wasn’t right
-
her perspective change: that cancer is not a death sentence, but a chronic illness – and she will continue to manage its symptoms for the rest of her life
-
that she was originally told she wouldn’t need chemo or radiation
-
her process of discovery: ultrasound, followed by two lumpectomies, and a mastectomy on the left side – though she opted to have both breasts removed and reconstructed (28% of it coming back on the right side)
-
that there was not much medical follow-up after her surgery
-
that she lived the “bad luck broken record” for a while – she kept getting infections and ending up back in hospital after her double mastectomy
-
that she started having abdominal pains and was continually turned away – and it turned out, following laparoscopy to make the determination, the cancer drug she’d been on had likely given her endometriosis
-
that 12 months to the day from her double mastectomy, she was diagnosed again with breast cancer
-
that she endured 3 months of chemotherapy (2 types), and maximum radiation for 5 weeks
-
that she is now on injectable cancer drugs that push her body into medically-induced menopause, as well as an aromatase inhibitor (i.e., stops the production of estrogen in post-menopausal women)
-
that she froze her eggs before chemo and radiation – and this procedure was offered to her at no cost, without insurance, through the Australian medical system
-
that she experimented with diet and Chinese herbs while being treated for her first cancer diagnosis
-
that after her second cancer and endometriosis diagnoses, she began to explore integrative medicine and found NIIM
-
that during chemo and radiation, she used scalp cooling to keep (most of!) her hair
-
that she used integrative treatments to complement her chemo and radiation
-
that her friends and family threw her a party – The Big C – to raise money for her treatment at NIIM, as well as abroad
-
the reasons she chose to travel to Colombia for additional integrative treatment following chemo and radiation
-
some of the treatments she went through at Instituto Medico Cubano – including vitamin drips, hyperbaric oxygen, immunotherapy (targeted therapy), and regressive therapy
-
that her integrative medicine doctor’s third question to her upon arrival in Colombia was: “What is your relationship with your mother?” – and she posits there is a direct connection between Clare’s cancer diagnosis and her mother’s passing
-
a discussion of Dr. Hamer’s findings on chronic illness and disease
-
that she realized after her stay in Cali that she hadn’t looked down the barrel of her trauma – and that this was the next step in her healing work
-
that she had full genomic mapping done in Cali – which will show her predispositions to pathological response to certain treatments and medications, among other things
-
that she’s found a renewed interest in meditation, and was recently introduced to Dr. Joe Dispenza’s work
-
why she is her own advocate
Ilana Jacqueline is a best-selling author, speaker, patient advocacy strategist, and professional patient advocate. While her background is in PR, her career as a patient advocate started with an early blog, Let’s Feel Better, in 2012, and gave birth to the book Surviving and Thriving with an Invisible Chronic Illness – which was Lauren’s playbook when she first got diagnosed (Ilana has a way of saying it like it is and managing to stay sane and amused that is right up Lauren’s alley). She has a longstanding relationship with Global Genes, where she served as the managing editor of The RARE Daily for five years. She was later appointed the Manager of Patient Advocacy at FDNA, where she developed the Genomics Collaborative program. Most recently, she has joined the boards of RUN (Rare and Undiagnosed Network), HAS (Health Advocacy Summit), and IDA (Invisible Disabilities Association), while also working at WEGO Health and continuing her regular column in IG Living. She has a long career of freelance writing, and has contributed to publications including The Huffington Post, Marie Claire, Everyday Health, Mashable, and The Miami Herald, among others. She speaks at medical, patient, and pharma conferences as well as consulting with companies on how the patient voice can improve the design of healthcare.
Tune in as Ilana shares…
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all about Surviving and Thriving with an Invisible Chronic Illness
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about life with PIDD (Primary Immune Deficiency Disease)
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that her family is more holistic when it comes to healing – but that holistic approaches haven’t been effective in managing all her symptoms
-
that she’s eager to try varied approaches to her healthcare
-
how difficult it was to be taken seriously by doctors
-
that she lives with constant gastrointestinal issues, nausea, etc.
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what PIDD is: a lack of antibodies to prevent illness; and how to treat it: intravenous immunoglobulin therapy (IVIG)
-
that she is one of the very rare few living with PIDD who do not have a positive response to IVIG – so now, she treats infections as they come (high-dose/IV antibiotics, etc.)
-
that she has survived pneumonia, sepsis, and other serious conditions as a result of PIDD
-
that she is constantly proactive about her health, prevention, and care
-
how telecommuting has enabled her to have a career without endangering her body
-
the role that self-care and boundaries play in her life, both personally and professionally
-
confrontations with strangers – and the audacity of the uninformed
-
what it was like to have a visible element to her chronic illness (in the form of a central or PICC line)
-
the “rite of passage” of being judged for using the disabled spot in a parking lot – when you have a parking pass and live with disability, but look young and able
-
why she’s solution-focused and doesn’t wallow in sadness
-
her “curiosity cards” – business cards that called strangers out on staring, and provided answers through her blog
-
escaping uncomfortable situations without always engaging
-
why it’s not a disabled/chronically ill person’s responsibility to educate everyone – but why instructing the public on how to respond is useful
-
her co-morbidities, among them dysautonomia (the dysfunction of the autonomic nervous system) – and why hydration and fluids are so important to her health
-
how her mom has shown up as her advocate – and discovered her own diagnoses after Ilana did
-
how she’s learned to mitigate medical trauma
-
how her husband has taken on the role of advocate from the beginning of their relationship
-
what it’s like to be a patient advocate
-
her realizations about friendship with chronic illness – and that relationships are a two-way street
-
other chronic illness warriors she admires
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how she was diagnosed with pelvic floor dysfunction
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the thin line between empowerment and shame in the chronic illness world
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the importance of finding a good therapist
Aditi Juneja is a lawyer, writer, and organizer living with epilepsy. She is the creator and host of Self Care Sundays, a podcast about self-care for communities of color. With past guest T. Sydney Bergeron Mikus, she is also the co-founder of the Invisible Illnesses Support Circle at The Wing in NYC. While at NYU law school, she co-created the Disability Allied Law Students Association (DALSA). In 2017, she also cofounded the Resistance Manual, a nonpartisan organization crowdsourcing content on legislative and policy issues and offering it to the public at a basic reading level in order to make it accessible to all English speakers. This project was created in partnership with StayWoke; as part of it, she also co-created OurStates.org. In 2018, she was selected by Forbes as one of the 30 Under 30 in Law & Policy. She is currently the communications manager at Protect Democracy. In this interview, we talk about what it has been like to manage her seizure disorder throughout her early life and career, and how we can make healthcare more accessible.
Listen in as Aditi shares…
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how her mom discovered that she was having petit mal seizures when she was 3 years old – but didn’t share this news with her until she was older
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that she had her first grand mal seizure in 2001 – shortly after 9/11
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that she noticed triggers for her grand mal seizures – and realized the need for medication to dampen the triggers
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that she has spent a lot of time adjusting her medications to stay on top of her symptoms
-
evidence of bias in the medical industry: that she was able to see specialists sooner because of networking connections
-
that she’s been seizure-free for four years now – and she hasn’t gone this long without a seizure since high school
-
that she ended up on a medication black-boxed by the FDA – meaning that it carries a high mortality or health risk rate – but that she’s been absolutely fine on it (and, as it happens, the odds of a negative reaction are low)
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her attitude about her health and quality of life: “if you’re going to live a life, it should be worth living – and be the one you want”
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that she hasn’t been injured during a seizure, but she knows plenty of people who have been
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that most epilepsy medications are downers – but she happens to be on one of the few uppers
-
that she has been diagnosed with idiopathic generalized epilepsy (like 1/3 of epilepsy survivors) – because her family history of epilepsy is scarce at best
-
that she has always been her own health advocate and been open to educating others about her condition – and her parents encouraged her in that direction
-
do’s and don’ts for helping folks having seizures: lay them on their side; if more than 2 minutes, call 911; move dangerous furniture; don’t restrain them; and don’t put anything in their mouths
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that she has learned to tell teachers, employers, etc. about her condition early on – so they know how to handle a seizure if it happens
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that she has an aura that warns her of an oncoming seizure, and she’s able to take the appropriate precautions
-
the importance of lifestyle choices and boundaries – especially when it comes to prioritizing sleep – in managing her symptoms
-
that she got involved in healthcare advocacy during the ACA repeal debates, and especially after the recent death of Jakelin Caal in CBP custody; she was also involved in the disability community in law school at NYU with the foundation of the Disability Allied Law Students Association (DALSA)
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the importance of visibility as a disabled WOC
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the disparities between mental health care and physical health care in the medical industry
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why she uses PillPack
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a recognition of her privilege
-
why it’s OK to speak about your disability – and also NOT to speak about it
-
the importance of being intentional when creating spaces for open discussion
In this second installment of Lauren’s interview with Ariel, we dig further into his conditions and lifestyle: what his advocacy work means to him, his journey through the workforce and struggle to find employment with disabilities, his experience as a service dog handler, and life with thyroid disease, bipolar II, borderline personality disorder, endometriosis as a gender-diverse individual, and chronic pain. He emphasizes that these experiences are not unique to him – but that he is privileged to share his unique experience. (Again – if you hear dogs barking in this one, it’s just Caliban’s buddy Blue giving us a shout-out!)
Join us as Ariel shares…
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what a typical day is like for him
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that he struggles with agoraphobia
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his need to connect with nature
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what it’s like to lean on others as a Spoonie
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that weather changes can trigger his symptoms, and force him to focus his work inward rather than outward
-
the expansion of his advocacy work
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his background as a college instructor, why he loves academics, and how his work as an educator influences his advocacy work
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what his advocacy work means to him
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how poorly our working world is designed for us – and the lack of accommodations and opportunities available, especially for disabled individuals
-
factions within the disability community – and how the disability community is, however, also one of the most polite out there
-
an examination of his childhood development, and how it has influenced who he is today
-
his experience of discrimination when out in public with his service dog, Caliban
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that he used to use mobility aids full-time – and now his disability markers are far less visible
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that he lives with additional diagnoses, but chooses not to discuss them because there are already great advocates for those conditions
-
his advice for other Spoonies or individuals confronting gender identity issues
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the importance of finding community
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the importance of his changed relationship to food – from dysphoria to nourishment
If you’re involved in the Spoonie community on Instagram, you’ve probably come across Ariel of @carpe_that__diem, who blogs about living in a disabled trans agender body, mental health, working with a SD (service dog), and death positivity. An academic by training and trade, Ariel’s perspective is eloquent, enlightening, and engaging. He uses this interview (in two parts) to dive into the intersections of invisibility in his life – as a disabled person living with post-hysterectomy endometriosis, Hashimoto’s disease, and a Cluster B personality disorder; as well as both inner and outer perception of his gender identity, and how his medical conditions have interfered with his self-realization. A complex and candid interview, Ariel paints pictures of frustration – and triumph – in his survival story. (And a heads-up that if you hear any barking in the background – those are Ariel’s pups saying hello!)
Tune in as Ariel shares…
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his experience of disability, invisibility, and gender
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that he had a pediatric diagnosis of hypothyroidism and Hashimoto’s disease
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that his doctors and parents advocated for him from a very young age
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this his body chemistry shifts constantly, and he has had to constantly adjust his thyroid medications reactively
-
that he originally wanted a hysterectomy as the first step of bottom surgery for gender affirmation – but it became a priority because of chronic pain associated with endometriosis
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that he lacked support from his peers as he developed – and was openly judged for his early development by both peers and adults
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that he lived in undue suffering for years – not realizing that his menstrual pain was abnormal
-
that he struggled with the emotional AND physical process of coming to terms with his own gender identity, which was compounded by gynecological pain
-
the Da Vinci robotic method for hysterectomy – and how his surgery was single-incision through his belly-button
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that the results of his initial tests (pre-hysterectomy) had been misinterpreted; as a result, recovery was devastating – and there is now a very real risk that there may still be active endometrium continuing to grow in his body. As such, he has to keep on top of that with future imaging and surgeries
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that removal of the cervix only is not typical of gender-affirmation surgery
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that the immediate recommendation post-hysterectomy was a full vaginectomy, which he may still have to do
-
that because of these surgical complications, his gender affirmation is in limbo – he must keep a female gender marker in order to continue to properly treat his endometriosis through health insurance – ultimately, his body is still interfering with his gender identity
-
the common misconception that a hysterectomy is a “cure” for endometriosis – which it isn’t. It is only a treatment, not necessarily a cure
-
that he still lives with chronic pain due to the persistence of endometriosis, as well as cramps and bloating
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that he also lives with borderline/bipolar 2/Cluster B personality disorder – and that this disorder has largely been misunderstood because of its presentation in media
-
that borderline personality disorder is really scary for the person who lives with it – he feels he lives with a monster
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that the medical community has not yet come to a conclusion as to the cause of Cluster B personality disorder – whether it is hereditary, trauma-related, or otherwise
-
how a Cluster B personality disorder manifests – and what “splitting” looks like
-
that Cluster B personality disorders are notoriously medication-resistant
-
that he treats his mental health disorders with CBT (cognitive behavioral therapy), DBT (dialectical behavioral therapy – blunt de-escalation strategies that address negative feelings), and various medications
-
that his partner has been an incredible support across the board – but that he also presents as cis-gender male, and tends to be taken more seriously than Ariel in many situations, particularly medical – because of “the enormity of his masculinity”
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that his service dog, Caliban, gave him back a life outside of the house – and in the world
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what it means to be transgender, and how he has undertaken his transition
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that he considers himself agender – which is part of the non-binary spectrum
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that being agender means he can make a self-determination about what masculinity and femininity means to him
-
that he has tried using gender-neutral pronouns before – but it was an uphill battle to argue the use of they/them (despite its existence in language as a whole) – so he started using “he/his” instead – not because he disagrees with the use of gender-neutral language, but because with everything else on his plate, he wasn’t willing to die on that hill to prove his point – or to legitimize his existence
-
that even Marsha P. Johnson lived with multiple disabilities and mental illness – and her calling card was “I may be crazy, but that don’t make me wrong”
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the medical prejudice that queer-identifying individuals still come across on a daily basis
-
TRANSCARE from the University of Iowa – and how everybody in the medical world has to get comfortable communicating effectively with their patients in order to create an affirming and safe environment
Rachel Hill is an author, writer, thyroid patient advocate, and creator of the award-winning website, The Invisible Hypothyroidism. Diagnosed with hypothyroidism and Hashimoto’s disease, she talks openly and honestly about what it’s like to have these diagnoses, as well as what has helped her and many others to recover their health and to thrive. She is passionate about helping those with hypothyroidism and giving them a voice, and is recognized as a valuable contributor to the thyroid community.
Listen in as Rachel shares…
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how she was first diagnosed with hypothyroidism as a teenager
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that before her diagnosis with Hashimoto’s (at 21), she had two severe flus, as well as symptoms that included uncontrolled loss of weight, migraines, irregular periods, acne, acid reflux, bloating, contact dermatitis, eczema, and the loss of about 80% of her hair
-
how common thyroid disease is – and how few of us are talking about it
-
that her symptoms left her bed-bound and immobile many days, and forced her to reduce her work commitments
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that she was originally prescribed T4 (Synthroid/levothyroxine) only, and this didn’t’ help – but she started researching alternate options and found a thyroid community
-
that based on her research, she decided she wanted to try NDT (natural desiccated thyroid), which she had to self-source because no doctors in the NHS would prescribe it
-
that not only has she struggled to get doctors to believe her, but many of the fellow thyroid patients she hears from have been in the same boat (including Lauren)
-
the emotional toll of not being believed as a patient
-
the importance of becoming an active participant in your own healthcare – in other words, becoming your own advocate
-
how risky self-sourcing medications can be
-
how important it is to always keep your doctors in the loop with regard to medications and treatments
-
the best tests for thyroid function, and what they teach us: TSH, free T3, free T4, thyroid peroxidase antibodies (TPO), thyroglobulin antibodies (TgAb), and reverse T3 (which can often be the most difficult to obtain)
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why TSH isn’t enough of a test on its own in order to fully understand our thyroid function
-
that Hashimoto’s and hypothyroidism are not mutually exclusive diagnoses
-
that her husband, Adam, has acted as an advocate for her in medical settings
-
that, disappointing as it may sound, female patients often find they are taken more seriously by doctors when they bring a male advocate with them to their appointments
-
that her husband’s advocacy has brought them closer together – so much so that they have now written a book together!
-
that her husband truly understood what she was experiencing when she explained Spoon Theory to him
-
that fatigue and brain fog always troubled her when she was sick, and made her worry that she might have early-onset dementia
-
that she now avoids gluten; when she does accidentally consume it, she can be knocked down for a few days
-
the importance of making your workplace as comfortable and accommodating as possible for your needs when you have chronic illness
-
the importance of conserving energy, even in small ways, when you live with chronic illness
-
how her book, Be Your Own Thyroid Advocate, was designed to help thyroid patients – and was born from her blog, The Invisible Hypothyroidism
-
info about her newest book with hubby Adam: You, Me, & Hypothyroidism, which charts both patient and loved-one POVs on navigating chronic illness
-
how she started her award-winning blog
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that while the NHS is wonderful, it has let Rachel down as a thyroid patient – she wasn’t tested for hypothyroidism until she’d had symptoms for 4+ years
-
how common thyroid disease is – 1 in 20 in the UK live with it, but as much as 60% of cases are undiagnosed
-
the fact that although so many people likely have thyroid disease, it’s not commonly screened in the UK
-
that UK doctors are forced to jump through additional hoops to screen and medicate thyroid disorders
-
the importance of power in numbers to create change
Todd White is the founder of Dry Farm Wines, and is a leading authority on healthy organic/natural wines and the importance of micro-dosing alcohol for health, longevity, and vitality. His passion is in unlocking the best way to enjoy alcohol – how to enjoy the benefits of moderate consumption while avoiding its potential negative side effects. Dry Farm Wines was born from Todd’s interest in biohacking and his role as a health evangelist; the company has been endorsed by many leading US health influencers, including Mark Sisson (Primal Blueprint), Dave Asprey (Bulletproof), Chris Kresser, and Dr. Mark Hyman, among others. Dry Farm Wines is the only lab-tested, all-natural, health-quantified wine merchant in the world; Lauren discovered them thanks to former guests Becca Murray and Liz Beebe (Ep 6), who touted the fact that every wine sold is held to incredibly high standards, and safer for some of us with chronic illness to consume because they are sugar-free (< 1g/L), low in sulfites (< 75ppm), low in alcohol (< 12.5%), mycotoxin/mold-free, dry-farmed, additive-free, gluten-free, naturally or biodynamically farmed, and safe to consume for those following the Keto or Paleo diets, among others. Todd has a lot to share about the wine industry that we DON’T know – prepare to have your minds expanded! TW: alcohol consumption/addiction.
Join us as Todd shares…
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that alcohol is a dangerous neurotoxin and drug – and therefore needs to be consumed responsibly and in moderation
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that he has always loved wine, but found it was producing negative side effects when he imbibed – and wanted to find a way to drink wine that wouldn’t produce these effects
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that he started to suspect that drinking less alcohol (alcohol percentage under 12.5%) would control some of the negative side effects
-
that wine labeling is controlled by distributors and manufacturers, who have lobbied to keep facts from consumers: including up to 76 additives APPROVED by the FDA – so essentially, consumers don’t know what is – or is not – in any bottle of wine they purchase
-
that Dry Farm Wines is the only merchant that independently lab-tests the contents of the wines they sell
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that the TTB (Tax & Trade Bureau) is responsible for labeling alcohol – and these labels can legally be inaccurate because of variances built into laws written in the 1940s (read: collusion between the wine industry and the US government)
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that most wine produced in the US is made by only three wine conglomerates – hiding behind of thousands of labels
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that higher amounts of alcohol combined with sugar can cause negative side effects
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that Dry Farm Wines rejects 70% of the wines that they taste and test – because they do not meet strict criteria
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the difference between drinking to check out – or to tap in
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that the difference between 11% and 15% alcohol is radical – your body is likely to react in very different ways
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that the term “natural wine” has no certification program – there’s no legal definition for it, but there’s a general understanding in the wine industry – and in the case of Dry Farm Wines, it’s dry farmed, and either organically or biodynamically farmed
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the science of wine production – and the importance of the strict criteria Dry Farm Wines uses to distinguish the wines they sell from others on the market
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why Dry Farm Wines only carries wines from Europe and South Africa – none from the US
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where you can find natural wines in stores: NYC, LA, San Francisco, Chicago, and Dallas – but harder to source elsewhere
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that the only way to change the system is to elect different people with the ideals we believe in
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that the “organic” or “biodynamic” label does not mean a wine is additive- or sugar-free – and while it’s better to drink than conventionally-farmed wine, it is still not necessarily the healthiest choice
Karyn Buxman is a neurohumorist (living at the intersection of the brain and humor), author, researcher, keynoter, coach, and TEDx speaker. For the last 30 years, she has worked with clients like NASA, the Mayo Clinic, Cigna, and 800+ others to empower with healthy humor. She runs custom retreats at her HumorLab in San Diego, and focuses on high performers in the ROI of laughter. She is quick to distinguish that humor ≠ comedy. Her next book, Funny Means Money: Strategic Humor for Influence & World Domination is due to be published by Forbes Books in winter 2020.
Tune in as Karyn shares…
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what it means to be a neurohumorist
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the relationship between humor and health
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Norman Cousins’ story, and how it inspired her research
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the range of people she works with – from patients to professionals, employees to employers
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that she is working on a new book for Forbes Books – about humor and influence
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that humor is a whole-brain process that fires off a cascade of neurotransmitters
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that humor has the power to heal, connect, and enlighten
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that humor is a holistic complementary process in healing – it reduces inflammation, which is known to exacerbate disease
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the cardiovascular benefits of laughter – it is an aerobic exercise
-
that laughter can increase the healing properties of the blood – studies have shown that it increases the presence of IgA and T-killer cells, as well as an increased general immune response (in both the short-term and long-term)
-
that laughter = better blood pressure
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that the regular practice of healthy humor lowers bad cholesterol and increases good cholesterol
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that healthy humor can aid in the release of tension, as well as increase one’s tolerance to pain
-
that humor lowers cortisol, and can lower blood glucose among pre-diabetic and diabetic patients
-
that laughter can reduce the occurrence of kidney disease among diabetes patients
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that humor can influence epigenetics
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that what we do in medicine isn’t working across the board – and if we know laughter and healthy humor works, it’s worth adding into a holistic health regimen
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that humor decreases anxiety, and increases creativity
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the close relationship between laughter and tears – and why both are healthy
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that humor can allow us to express anger and frustration in a socially-acceptable way
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that just thinking about humor can have the same effect on the brain that humor does – it has an anticipatory effect
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Victor Borge’s quote: “Laughter is the shortest distance between two people” – and Karyn’s addition, “Laughter has no accent” – it can connect one and all
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that laughter releases oxytocin, which is a bonding hormone
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the importance of communication, and how bad for the physiology isolation can be
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that exhibiting humor increases likeability, which is important for influence and connection
-
her personal connection to invisible illness: through her sons and her mother
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that laughter can help us change our relationship to illness: from victim to victor
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the 2% solution: 2% of 24 hrs is 10 min. Can we dedicate that time to healing?
-
her tip to share humor every day: print some funny postcards and send one a day to a friend
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her belief that some insurance providers are beginning to see the value of being well (in other words, preventive care)
-
the importance of collaboration … and of being the squeaky wheel
-
the importance of intentionally choosing humor
-
the distinction between humor and comedy
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that if we seek humor, we can rewire ourselves to see it everywhere
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consistency trumps commitment – make an agreement with yourself to seek humor for 10 minutes each day
Tonya Butts is the founder of Sweet Apricity, a sweets company that makes elimination-diet-compliant caramels (and caramel sauce!), marshmallows, and more. The company started on a whim: Tonya began crafting her dairy-free caramels as a graduation gift for her best friend Wendy, who manages debilitating symptoms with the Autoimmune Protocol (AIP). While offering powerful relief for those with autoimmune disease, AIP also eliminates a number of ingredients that limit indulgence (read: sweet!) options. Tonya knew what most of us who have tried a strict diet understand: sometimes the greatest gift is a sweet treat that won’t wreck our progress. Sweet Apricity’s Caramels, Marshmallows, and Caramel Sauce offer a sweet reward for all the work it takes to heal. They are grain-free, dairy-free, and refined sugar-free, made only with simple ingredients allowed on the AIP and Paleo diets. Still locally crafted by hand in Portland, Oregon, Sweet Apricity remains true to its roots with real ingredients, small batch production, and a growing line of artisan offerings. From the beginning, the mission of Sweet Apricity has been to offer a treat made with ingredients our bodies will love. In the course of start-up and as the company has grown, Tonya has discovered a shocking truth: that she’s been living with toxic mold symptoms for years. In her “coming out”, she tells Lauren about transitioning from “well” to “sick”, how this has affected her identity and her work-life balance, and how grateful she is to be connected to the caring community of Spoonies (and their loved ones) that Sweet Apricity has brought into her life.
Join us as Tonya shares…
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that when she first brought the caramels to her friend Wendy, Wendy’s response was one of total shock and joy – she screamed with delight and immediately began to sob with relief
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the meaning behind Sweet Apricity’s name
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why Tonya does what she does: that she wants to serve “a feeling that is elusive to people following a restrictive diet”
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that while her friend’s restrictive diet was never a roadblock in their friendship, Tonya became very protective of Wendy’s health and of others’ judgment
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that she lives with PCOS and has had her gallbladder removed
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that she experienced a lack of follow-up care with regard to both her gallbladder removal and the use of birth control for her PCOS
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that she unknowingly moved into a moldy house in the PNW, where she lived for 5 years
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that it’s not necessarily realistic to remove oneself immediately from a moldy home – because of the cost of living and the remediation process
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that she went on AIP for 14 months to experience what life was like for Wendy – but also because of its healing properties
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that she gained a lot of weight because of her mold experience
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that she couldn’t even begin to treat her mold toxicity until she left her old home
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that she is treating her toxic mold infections with a functional medicine doctor – whom she travels to Seattle to visit
-
that the doctors she sees in Seattle are two of the first to have been trained by Dr. Klinghardt (known for work in Lyme), and utilize ART (autonomic response therapy) to treat her mold toxicity
-
that she also struggles with heavy metal toxicity
-
that she’s been very good at hiding her symptoms
-
that in order to balance work and life, she’s surrounded by colleagues who know her well and want to see her succeed – so she’s able to create accommodations for her chronic illness
-
the irony that someone can spend exorbitant amounts of money for a meal that isn’t safe for them – and the realization that often, eating out/eating while traveling will make her feel unsafe in her body
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that she has experimented with veganism, paleo, keto, and intermittent fasting over the years
-
that diet change is rarely easy – and the key to success is mindset
-
that she’s an emotional eater – and that’s OK
-
that chronic illness can lend itself to a disordered relationship to food and eating
-
that her biggest struggle right now is with cognitive function – between mold, heavy metal toxicity, and hormone dysfunction
-
that she recently stumbled upon the book Radical Metabolism, which she has found to be very useful
-
that she gets ghost migraines – which affect her vision – when she experiences inflammation
-
that she makes a conscious effort to hide her impairments – and she realizes she is often not having the kindest internal dialogue with herself
-
that she questions – and sometimes doubts the existence – of her chronic illnesses, because they’re invisible, and she is sometimes able to hide them
-
how often Wendy was dismissed by doctors, who tried to tell her the symptoms were all in her head
-
that dairy wreaks havoc on her mental health – so she has to be very careful when she consumes it
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that she’s been able to reintroduce corn, but she’s unable to consume tapioca
-
one of her favorite indulgences: ‘smores made with her marshmallows and caramels
Michelle Roberts is formerly of Kantor & Kantor LLP, and now founder of Roberts Disability Law in the Bay Area. She has spent her entire legal career helping individuals with disabilities obtain income replacement benefits from their employer’s group disability plans, and works from the heart after watching her father, a disabled veteran, struggle to work and support his family while dealing with the consequences of debilitating medical conditions. In so doing, she has worked with hundreds of clients with invisible illnesses and understands the unique challenges of proving disability to an insurance company. Her focus is handling claims under the Employee Retirement Income Security Act of 1974, also known as ERISA. Michelle is a recognized “Super Lawyer” in her field and speaks and writes regularly about the developments in ERISA law. Michelle received her law degree from the University of California, Berkeley School of Law.
Join us as Michelle shares…
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what ERISA is, and how it applies to the disability community
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her personal connection to the disability community, and disabled veterans
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the role of the opioid crisis in legal proceedings under ERISA
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that she happily takes on an empathic role with her clients
-
typical social security benefits turnaround time: 1.5-2 years
-
that client surveillance is fairly common in the insurance field
-
the importance of quality mental health care
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the moral imperative of employers to provide benefits that include mental health services
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her volunteer work in the local legal community, through Legal Aid and the AIDS Legal Referral Panel
-
tips for Spoonies on obtaining disability insurance and fighting claim denials
Writer and filmmaker Vincent Sabella lives with OCD, depression, anxiety, and schizoaffective disorder. In 2013, he was diagnosed with non-Hodgkin’s lymphoma; he has been in remission for six years. Vinny’s film Elizabeth Blue was written after a harrowing year during which many of his medications, with which he is diligent, failed. His husband, Joseph, has been his consummate advocate, and has never been fazed by any of his diagnoses. He sits down with Lauren to discuss his life, his work, and the positive mental attitude he brings to all he does. TW: mental health and suicide.
Listen in as Vinny tells us…
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that he has just celebrated his 6th year of remission from cancer
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that he was undiagnosed with childhood schizophrenia until he was about 16 – when he first attempted suicide. He was initially diagnosed with depression.
-
that he had a second suicide attempt at 22
-
that he developed OCD in his late 20s – and his particular form of OCD is related to his health
-
the nature of his schizoaffective episodes: they involve visual, auditory, and tactile experiences. At first he thought the voices he heard were his subconscious or his imagination; as a kid, he would tell his mother he saw a man dressed in black coming out of his closet
-
that mental health wasn’t openly discussed in the ‘80s, when Vinny was a kid
-
that he recognizes undiagnosed mental health issues in his family
-
that when he was a kid dealing with mental health issues, no resources were readily available to him – he couldn’t Google his symptoms, and he wouldn’t have known where to begin searching at the library
-
what it’s like to be institutionalized in a psychiatric facility – and state vs. private
-
that he taught himself to push through his hallucinations, so his early schizoaffective episodes didn’t disrupt his lifestyle
-
that his film, Elizabeth Blue, reflects much of his experience with mental health disorders – and his lead actress was a dark horse for an Oscar nomination
-
that he has a great psychiatrist and is now diligent with his medications, which keeps his condition under control
-
that in 2010, his medications failed because his body built up a tolerance – and Elizabeth Blue is about this difficult year in his life
-
he recognizes the importance of support and information for these mental health conditions – and that many people don’t have access to them
-
that he recognizes most of his hallucinations now; but occasionally new ones occur
-
the importance of language: that certain terminology can minimize and negatively reflect individual experiences of mental health disorders
-
that schizophrenia is often confused with multiple personality disorder
-
the importance of celebrities and media more openly discussing mental health
-
the importance of finding a good psychiatrist when you live with mental health issues
-
that he can tell when he’s “off” – because it feels like he’s hungover
-
how he was diagnosed with non-Hodgkin’s lymphoma: he pulled something in his abdomen that felt like a hernia, which later filled with fluid
-
that a gastroenterologist sent him for a wet scan of his abdomen – which showed either a bad intestinal infection or cancer – and a week from the initial injury, he was diagnosed with the latter
-
how his husband, Joseph, advocates for him in medical settings, and protects him from his own anxieties – and why he’s grateful for Joseph’s care
-
that he endured 5 months of chemo, and was mentally stable during that period of time
-
why he’s opting not to participate in Smart Brain (Transcranial Magnetic Stimulation / TMS) treatment – because he sees his mental health concerns as blessings
-
that staying mentally positive is work – but it’s worth it
-
that working out is a form of therapy for him
-
that he’s never had a medical professional NOT believe him
-
that he donated a portion of proceeds from Elizabeth Blue to NAMI – The National Alliance on Mental Illness
-
that he continues to be involved with NAMI
-
that he wanted to get involved with Covenant House (he has a soft spot for homeless youth), but was unable to because of his mental health status
-
the importance of privacy – and sharing only when and if you’re ready
-
that the LA LGBT Center offers free and low-cost medical screenings
-
the films he turns to in order to calm down
In Part 2 of Lauren’s interview with award-winning patient advocate Trishna Bharadia, we dig deeper into the details of her work and what drives her every day. While she has faced instances of discrimination and seen the same happen to her friends, she remains strong and uses these episodes as teaching moments for others. Her passion truly keeps her going, and she recognizes the historical importance of patient advocacy, drawing inspiration from the other patients and advocates she encounters. While she sees that no two patients are going to have the same path, she emphasizes the importance of finding the right kind of support to live a full life.
Tune in as Trishna shares…
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stories of chronic invisible illness discrimination
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a discussion of visible disability markers, such as wheelchair use
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the various organizations she works with as a patient advocate
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what she does as a patient advocate – writing, media, consulting, and beyond
-
the importance of seeing patients as an integral part of developing therapies, from medical equipment and pharmaceuticals to bedside manner and training
-
what makes her passionate about patient advocacy
-
that patient advocates don’t need special training – being patients themselves is what usually fuels their passion and expertise
-
that patient advocacy starting with the HIV/AIDS epidemic really paved the way for the patient advocates of today
-
the importance of friends and loved ones who are accommodating of the needs of the chronically ill
-
her tips for anyone who is living with chronic illness
-
that she not only serves as inspiration for others, but she is also inspired by the other patients and advocates she encounters
-
her favorite exercise activity: Zumba! She goes to inclusive classes taught by her sister, Anisha
Trishna Bharadia is an award-winning patient advocate, and was diagnosed with relapsing-remitting multiple sclerosis (MS) at the age of 28. As she tells Lauren in this episode, the diagnosis helped her find her true purpose: to actively campaign for patient engagement and to represent the possibilities of living – and thriving – with MS. She has since become a public speaker, writer, vlogger, blogger, consultant, advisor, and educator in the chronic illness sphere, volunteering with organizations such as the MS Society, Asian MS, ADD International, and the MS Trust (among others), as well as being recognized by the British Prime Minister with the Points of Light award, which recognizes outstanding volunteers who are making a change in their community and inspiring others. In 2015, Trishna was selected out of thousands of nominees to take part in The People’s Strictly – the UK version of Dancing With The Stars, which features individuals making an impact in their communities, with proceeds going to Comic Relief. Her persistence is made all the more extraordinary because her advocacy work is done in her spare time! She works full-time as a translator, and has done so since before her diagnosis. She campaigns with added vigor in the Asian community, as well as with young people. More on that part of her work in a future episode!
Join us as Trishna shares…
-
how she was first diagnosed – and that she was initially misdiagnosed, as are so many fellow spoonies
-
that a newly-qualified doctor provided her diagnosis; and that an MRI, spinal tap, and blood tests confirmed it – after she lost feeling down one side of her body
-
that waiting for a diagnosis was stressful, but that the diagnosis itself was a relief
-
that current treatments for MS don’t cure the disease; however, they slow degeneration and reduce the severity of symptoms
-
that she wasn’t initially offered direction and support for her diagnosis
-
that she was on her first treatment for 3 years before developing an immunity to it; and that she developed two long-term conditions in response to the next treatment – urticharia (chronic hives) and angioedema (deep tissue swelling)
-
that she sees a neurologist and an MS specialist for ongoing care
-
that she travels 80 miles round-trip to see her MS specialist – but she does this to see the best of the best
-
that she recognizes the importance of lifestyle and mindset in managing her condition
-
the importance of asking for help
-
that she now relies more on her parents than ever before – and she’s learned to embrace that shift positively. She’s learned to see this changing relationship as the gift of extra time with her family
-
that her younger sister has ulcerative colitis, and those symptoms started the same year Trishna’s MS symptoms began; and that her identical twin sister was diagnosed with MS 2 years after she was diagnosed
-
her day-to-day symptoms: fatigue and bladder issues
-
as an advocate, the current focus of her work is patient engagement – and her work has gone beyond just MS, and into all patient communities
-
that in UK airports, sunflower lanyards indicate that someone has an invisible disability, so they can seek assistance without judgment
Becca Lustgarten is a vocalist, writer, and classically-trained actress. A few years ago, after suffering severe digestive distress, she was diagnosed with Celiac disease. Celiac is more than an allergy – it is a degenerative disease that causes major digestive destruction if left untreated. The only treatment? To go gluten-free. Becca joins us to share her story of discovery, and how she’s worked to heal her gut since her diagnosis.
Listen in as Becca shares…
-
that she was always a sickly child, and had physical manifestations of her emotional reactions to stimulus
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that she discovered symptoms when she was working at a bakery in NYC, of all places
-
that while beer contains gluten, spirits don’t – even vodka and gin
-
that every Celiac patient has a radically different experience of symptoms – and often, as in Becca’s case, it would feel like a hangover
-
that Celiac patients are notoriously at risk for malabsorption because of the states of their stomachs
-
the availability of gluten-free foods
-
how getting Celiac changed her relationship to food and eating – and even drinking (bye, beer!)
-
restaurant etiquette when you have Celiac
-
feeling good and looking good – and the relationship between disordered eating and having to change one’s diet for health-related reasons
-
men, women, and our relationships to food, eating, and shame
-
boundaries – and what to do when you’re sick at work
-
her favorite GF foods
-
the importance of genetic testing
-
the role of CBD in managing symptoms
Listen in to Part 2 of Lauren’s interview with Dr. (of music!) Ginny Orenstein, who healed herself of lupus SLE, rheumatoid arthritis, two benign brain tumors, and stroke with Medical Medium Anthony William’s protocols for diet and lifestyle. Not only has Dr. Ginny been able to tackle her own health concerns, but after a major cardiac event her husband has also joined her on the journey to wellness through MM…and has seen remission of heart damage, diverticulitis, diverticulosis, and a diseased colon. It seems the stuff of fantasy, we know! Tune in for this real-life story of renewal.
Join us as Ginny shares…
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that, in the beginning of her recovery, she was in a devastating car accident – and didn’t flare. She attributes this to MM
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that 1 year after starting MM protocols, her brain tumors were gone – and there was no sign of her having had a stroke
-
that she surmises MM protocols saved her from spinal surgery post-accident. She applied protocols specifically for inflammation and spinal health
-
that she sets alarms throughout the day to remind her to pause and breathe
-
that her husband was dead for 46 minutes after cardiac arrest, and doctors found his main artery was 100% blocked, the bottom muscle of his heart was so damaged, it would never heal – but whatever he’d been doing the last few months (MM), it had saved his life
-
that at this point, Ginny decided her hubby was going fully on the heart healing protocols from MM
-
that 3 months into MM heart-healing protocols, her hubby showed signs of healing in his heart – and that based on this success, his doctors estimated that 6 months later he’d have no signs of prior cardiac concern
-
the role of Reiki, meditation, and mindfulness in her daily life – and how she learned these lessons from MM
-
the importance of boundaries in mindfulness – and in removing toxic influences from our lives in every way in order to facilitate healing
-
that healing foods are meant to unblock you – and that once you’re unblocked, then you can begin to heal
-
the importance of self-advocacy, and how she learned it as a chronically ill patient – and on MM
-
the importance of community in chronic illness
-
that she was initially told by doctors that because of all the medication she required, she couldn’t risk pregnancy – and now that she’s almost off all her medication, she and her husband can begin to try for a baby. Wish them luck!
At 34, Dr. Ginny Orenstein (doctor of music!) had finally been diagnosed with severe systemic lupus erythematosus (SLE), rheumatoid arthritis in her chest and spine, two benign vascular brain tumors, and a microvascular ischemic brain disease (stroke). Her life was one of confinement – she had been bedridden for 2.5 years, and prescribed medications and chemotherapy were causing more harm than good. Her Hail Mary was played out on a whim: she purchased Medical Medium by Anthony William – now known widely himself as the Medical Medium. She started following his protocols and, with her doctors’ supervision, made lifestyle changes – particularly with regard to mindset and diet. Four years later, Ginny has done a total 180 – she has shrunk the brain tumors to almost nothing, her brain shows no signs of stroke, her lupus and RA are in total remission – and she’s almost entirely off prescription medication. As she began to see results, her husband became gravely ill and suffered a heart attack. He was witness to Ginny’s healing and decided to join her on the Medical Medium journey. He has now almost entirely reversed severe heart damage, diverticulitis, diverticulosis, and a congenitally diseased colon. This couple has changed their lives completely. We hear a lot about Medical Medium (MM) in the chronic illness community, and we thought – who better to tell us more about their experience with his work than a woman who has healed herself – and her hubby – with his advice? Listeners: meet Dr. Ginny.
Listen in as Ginny shares…
-
that she had her first flare in 2003, which was likely triggered by extreme stress
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the frustration of seeking her first diagnosis
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that fluid around her heart and lungs were drained in 2012; her pericarditis persisted and would flare monthly after this point
-
that she first saw a rheumatologist in 2013
-
that Obamacare was really helpful to her, even if it was a long and winding road
-
that she didn’t get her lupus diagnosis until 2015 – 13 years after her first flare (and despite a negative ANA result)
-
that she had adverse reactions to almost every treatment she was prescribed
-
that she almost died because of drug interactions
-
that she met the rheumatologist who turned her life around almost by accident – and that he campaigned to get her off prednisone, telling her the “P” in prednisone stood for poison
-
that she tried a ton of diets to lose the weight she gained on prednisone
-
that she had read books on lupus that informed her she had 5 years left to live after diagnosis
-
that she stumbled upon Medical Medium in 2017, and brought it to her doctors to ask their advice – and that they were thrilled (GI, rheumatologist, and cardiologist were on board from the start)
-
that her transformation was incredible, but it didn’t happen overnight
-
the loneliness of living with chronic illness
-
that despite our love for our advocates, chronic illness can still strain relationships
-
that she started to notice a change in her health by week 4 on MM’s protocol
-
that after 6 weeks on MM protocols, she was no longer pre-diabetic or anemic
-
that because she very gently and slowly eased herself onto MM protocols, she didn’t experience any negative withdrawal symptoms
-
that mindfulness and energy healing have become a new focus and career path for her
-
that she is now writing a book about her healing journey
-
the interconnectedness of body and mind, and how she could only heal by working on both
-
that she relies on Reiki, breathwork, meditation, and yoga – among other practices – to target her mindful healing work
-
that her husband’s stoma healed incredibly quickly when he went whole hog on MM protocols after major surgery
Eric is originally from Philadelphia, PA, and was born with cystic fibrosis. Diagnosed at the age of 1, his original life expectancy was between 10-14 years. As advances in medical treatment have moved forward, so has his life expectancy…so much so that Eric has now, at 41, surpassed his doctors’ hopes. He moved to Southern California as an adult to take advantage of the statewide Genetically Handicapped Persons Program, which enables him to get his treatments and medications fully covered by insurance. Rather appropriately, he has channeled his passion for environmentalism – and the idea of creating pathways to combat climate change – into a career as a solar engineer. You may hear him cough periodically in this interview, which is one of the symptoms of living with CF – as mucus builds up in the lungs, he has to cough it loose.
In this episode, we dive into....
-
what cystic fibrosis is and how it affects the body
-
that when Eric was born, the life expectancy for patients was 10-14 years; that advances in treatment have increased his life expectancy greatly – and he has now surpassed doctors’ expectations
-
how he was initially diagnosed at the age of 1
-
that CF affects the exocrine glands, which can include the digestion – as well as the pancreas and lungs
-
that he takes 80+ pills a day to survive
-
the Genetically Handicapped Persons Program, and how he moved to CA to take part in this program and get his treatments and medications fully covered by insurance
-
that his parents were not only active fundraisers for CF awareness, research, and treatment; but that his mom ended up going to nursing school and becoming a CF clinic nurse
-
where we can find out more about CF: through the archived video blogs of the late Claire Wineland
-
that it takes him at least 2 hours/day to complete his treatments, and he has to adjust his lifestyle around it
-
that he has worked part-time for most of the last decade in order to effectively manage his health – to manage his stress
-
that there are varying levels of CF severity – some patients only have GI problems, and no lung issues; others aren’t diagnosed until they are in their 40s or 50s
-
that he had part of his lung removed at the age of 11 because it was a source of repeated infection; after this surgery, he went several years without being admitted to the hospital with an infection
-
that he developed a community during his hospital stays, and he looked forward to seeing his friends during his visits
-
“the world kind of absolves you of responsibility when you go to the hospital”
-
that to his knowledge, he is the only one of his peers from growing up who has survived CF
-
the emotional toll of losing friends so young
-
that he learned to be his own health advocate at an early age
-
that CF doesn’t define who he is – it’s an aspect of his lifestyle
-
that his work is a source of inspiration, and an area in which he’s willing to spend his limited time
Lara Bloom is the international Executive Director of the Ehlers-Danlos Society. Finally diagnosed with EDS at the age of 24 (after many years of chronic pain and frustration), she channeled her healing into patient advocacy. Her job is to raise global awareness of rare, chronic, and invisible diseases, with a focus on the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD), and related disorders. Lara manages coordinated medical collaboration, raising funds for research, and focus on global progression, education, and awareness. From 2013–2015, Lara was part of the specialized rheumatology CRG (Clinical Reference Group) working with the NHS, and she regularly works with umbrella organizations lobbying in British Parliament. She is a member of the Patient Empowerment Group for Rare Disease UK and the Rare Disease International Patient Advocacy Committee. Before joining the Society, Lara ran EDS UK from 2010-2015. In 2016, she completed expert-level training in medicines research and development, and became a fellow of the European Patients Academy, EUPATI. Lara played a key role in the recent international effort to re-classify EDS and create management and care guidelines. She was a published author on the subsequent classification publication in the American Journal of Medical Genetics (AJMG) March 2017, and serves on the steering committee of the International Consortium for EDS and Related Disorders.
Join us as Lara shares…
- that she was initially believed to have Marfan syndrome – another connective tissue disorder
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that there was a major delay in her diagnosis of Ehlers-Danlos with hypermobility
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that before her diagnosis, she was prescribed certain surgeries which ultimately did more harm than good – and that she should have had different surgeries that were never realized
-
that EDS’ best friend is muscle strength – and physical therapy is really helpful
-
the dichotomy of the struggles she experienced with regard to her sexuality and disability as a teenager – and how tough it was to live with chronic pain from EDS while coming out
-
The Ehlers-Danlos Society’s Project ECHO®, which aims to streamline diagnosis and treatment protocols for EDS by 2022 and empower medical practitioners with a deeper understanding of the syndrome in order to provide better clinical care – and access to said care
-
that the international approach of The Ehlers-Danlos Society is really opening pathways to understanding this complex spectrum of disorders – and how this is inspiring not only Lara, but also her colleagues
-
that there are currently 13 different kinds of EDS recognized, with a 14th in consideration
-
that The Ehlers-Danlos Society has a global registry for patients to increase understanding of EDS, HSD, and related disorders
-
that genetic testing is not fully accessible, which perpetuates our lack of functional clinical knowledge with regard to the spectrum of EDS and HSD
-
the challenges of being in the public eye as a patient who “looks just fine”, works incredibly hard, and advocates so personally for EDS and HSD
-
how demanding her work is – but that it’s worth it for the strides made forward in EDS advocacy
-
how chronic illness has impacted her relationships, particularly on a personal level
-
how a support system can make or break a chronic illness experience
-
the role of fatigue in chronic illness – and in determined, non-stop advocacy
-
the importance of positive mindset in symptom management
-
the need for continued research into EDS
-
that there is no such thing in the medical world as an EDS specialist
-
the added challenge of having a disability that’s invisible
-
why survivors of EDS call themselves Zebras
-
her vision for the future of EDS diagnosis and treatment
T. Sydney Bergeron Mikus is an award-winning writer, artist, designer, model, and activist based in NYC. They live with TBD (tick borne disease), including Lyme, Bartonella, and ehrlicia, as well as POTS (postural orthostatic tachycardia syndrome). They create work driven by healing advocacy, art, and narrative as tools for change, and self-care as disruption. They are the founder and director of Simple Politicks, and co-host the Invisible Illnesses Support Circle at The Wing. They are also an inaugural member of the disability council at The Wing, advising on events, new spaces, and other accessibility topics. Sydney is a queer, nonbinary femme living with chronic illnesses that cause intersystem disabilities.
**Listen in as Sydney shares…**
- how it took almost a decade for them to be diagnosed
-
that tests for tick-borne disease can be very unreliable; and even inconclusive results can mean diseases and co-infections are present
-
that sometimes symptoms are hard to pinpoint, especially if they are subtle and feel like “just part of being a person”
-
that their mom also has Lyme
-
that so many Lyme specialists do not take health insurance, which makes treatment restrictive
-
that they waited until they were really sick to finally get treatment
-
that they started treatment with holistic methods before starting intravenous treatment; they were supposed to get a PICC line, but discovered they were allergic to heparin (blood thinner), which is used to clear PICC lines in treatment
-
that they are combining holistic and intravenous treatments now, and will soon start antibiotics again to combat TBD symptoms
-
that they are now using therapies that track the frequencies of bacteria in their blood
-
that the CDC does not recognize Bartonella as a TBD, but most Lyme organizations do
-
that they have their cat, Lupin, registered as an emotional support animal – and he really helps with their mental health, as well as supporting when they have physical symptoms that crop up
-
that many TBDs have overlapping symptoms, which makes them even harder to diagnose, treat, and be aware of in general
-
that Lyme can cause POTS – not in all cases, but in some
-
that water, salt, and beta blockers have been useful for their POTS symptoms
-
that Ritalin has been helpful for brain fog
-
that they were very close to a final diagnosis of Hashimoto’s at the time of recording, and this has now been confirmed
-
that they didn’t identify as disabled for a long time – but they do now
-
that they are their own advocate in most ways, having dived into research of their conditions independently – but that their mom has also been a great support
-
that brain fog is incredibly frustrating
-
their heroes in the invisible illness community, who have inspired them to be more open about living with disability and to become more empowered in that identity
-
how they have channeled their experience into advocacy
-
stories about accessibility, accommodation, inherent privilege, and disability awareness
With a vision to build the safest, most consistently effective and non-invasive solution to the epidemic of chronic pain, Brendon Lundberg (a chronic pain survivor himself) co-founded Radiant Pain Relief Centres in Oregon. The centres use an FDA-approved and Mayo Clinic-tested treatment for chronic pain called Scrambler Therapy, which targets the brain’s response to pain in the body and aims to retrain its feedback loop by encouraging neuroplasticity. Brendon combines his mission to change the way chronic pain is treated with deep experience in healthcare management and business development; he and his co-founder, David B. Farley, M.D., released their book, Radiant Relief – A Case For A Better Solution To Chronic Pain in 2018. In this episode, Brendon sits down with Lauren to discuss the his work and the growth of Radiant Pain Relief Centres, as well as to share some beautiful stories of healing – and triumph over pain.
Listen in as Brendon shares…
-
about the therapy, education, and experience that Radiant Pain Relief Centres deliver
-
how chronic pain affects patients, and the joy of helping them heal
-
that all pain is neurogenic, though experienced in the tissue – its origin is in the brain
-
that most doctors are trained in outdated pain research from the 1960s, and newer technologies and research are much more comprehensive and offer hope for relief
-
that many chronic pain patients are disbelieved or brushed off by medical practitioners
-
the definition of chronic pain, and how chronic pain is a protective function of the brain that’s become maladaptive
-
that Radiant Pain Relief Centres use an FDA-approved and tested treatment for chronic pain called Scrambler Therapy, which encourages neuroplasticity: attaching electrodes to the skin in proximity to the site of pain, and sending signals to the brain to rewire its understanding of pain at the site
-
how neuroplasticity works: it dynamically re-trains the brain; and the brain learns through repetition
-
that patients average an 84% reduction of pain using the technology at Radiant Pain Relief Centres, over the course of a few weeks of treatment
-
how life-changing chronic pain relief can be
-
his take on the opioid crisis
-
why Radiant Pain Relief Centres shares a heart-centered mission for Brendon: because he is a survivor of chronic pain, which he has successfully treated using Scrambler Therapy
-
the neuroscience of pain: how the brain triggers the nervous system and tissues in the body to experience pain
-
the most prominent side effect of Scrambler Therapy: fatigue, because the brain is working overtime to balance and adapt
-
that, because of pain’s origin in the brain, pain relief treatment can be accelerated when a psychological element is at play
-
the few restrictions on treatment at Radiant Pain Relief Centres: expectant mothers and MS survivors
-
Brendon’s take on the current US healthcare model
-
that the relief of chronic pain begets patient empowerment and freedom
Noah Gardner is a scientist based in Massachusetts. He was diagnosed with type 1 (juvenile) diabetes in 1995, at the age of 12. While this autoimmune condition is genetic, his diagnosis came completely out of the blue to both him and his family. A little background on T1 diabetes: in an autoimmune reaction, the immune system attacks beta cells in the pancreas (which produce insulin), thus destroying them. Hence the need for insulin and devices like insulin pumps, which effectively act as an external pancreas for survivors. 24 years since his diagnosis, Noah is living in central Massachusetts with his wife and toddler, working at biotech company Intellia Therapeutics on gene editing. And he is here to share his story with us!
Join us as Noah shares…
-
the classic symptoms of T1 diabetes
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how he was diagnosed
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that T1 diabetes is a genetic disease and an autoimmune condition
-
how T1 diabetes works
-
how he has worked to manage his symptoms
-
the distinction between his pre-diabetes life and his post-diagnosis life; and the physical and emotional grieving and growth processes involved – especially as a child
-
technologies that have improved his quality of life (and these get better every year): insulin pumps and a CGM (continuous glucose monitor)
-
what makes T1 diabetes easier to manage than some other invisible illnesses: it’s pretty straightforward, because treatment is very targeted
-
health complications and implications of diabetes
-
that, at 36, he is already dealing with one complication of diabetes: glaucoma
-
the community he has slowly built in his post-diagnosis life
-
how he has become an advocate through the Juvenile Diabetes Research Foundation
-
the stigma associated with diabetes, and how this can affect kids in particular
-
the biggest stressors associated with diabetes: health insurance (an awareness of always being sure to have it), and that you are constantly on alert re: your symptoms and management
-
that there is still no cure for diabetes
-
how being chronically ill has impacted his personal and professional relationships
-
the challenge of traveling with an insulin pump and a CGM
-
his thoughts on the insulin crisis and health insurance concerns with regard to diabetes
-
his tips for living with T1 diabetes, and how families can manage the disease together
Em & Kate are the sisters behind the wellness blog Two Being Healthy. Both live with lupus, postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndrome (EDS), mast cell activation disorder (MCAD), and cytochrome mutations (which have affected their ability to metabolize certain drugs). Having spent much of their adult lives living with and navigating the symptoms of invisible illness, the two act as co-advocates for one another and have been by each others’ side through their ups and downs. Their goal is to shine a light on invisible chronic illnesses, share all they’ve learned along the way, and document their everyday journey. In finding community with each other, they have given community to countless others on the road to wellness.
Join us as Em & Kate share…
-
that on top of lupus, POTS, EDS, and MCAD, Em also has muscle myositis
-
that Kate is also prone to chronic migraines
-
that both women began to show symptoms when they were around 17
-
that Em’s initial lupus symptoms came on like an extended flu that never healed
-
considering both women have similar conditions, they are on different medications
-
that the medication journey is a never-ending one – as their bodies shift, their medications do
-
that the most constant in their medication regimens has been an immune booster (which lowers antibodies)
-
the psychological journeys they’ve been on in reaction to their physical struggles
-
that low-histamine diets has all but eliminated their MCAD symptoms, in addition to histamine blockers
-
that, in addition to each other, Em & Kate have been able to lean on their mom for support – and, as they were to discover, she lives with some of the same conditions that they do
-
the link between POTS, EDS, and MCAD
-
that they had to give up yoga because of the hypermobility associated with their EDS, and now do mat Pilates instead
-
why they advocate for therapy, and awareness of emotional fluctuations in relation to physical frustrations
-
the challenge of being undiagnosed
-
the grieving process of accepting your body as it is, post-diagnosis
-
that they used to be much more private about their conditions, and suffered social anxiety as a result – but tired of the isolation, and began to own their lives fully
-
that being chronically ill has developed their ability to communicate: because often, friends wouldn’t understand their conditions or that they were invisible
-
that they’ve been discriminated against for using handicap parking passes and taking elevators, because they are young and healthy-looking
-
how being chronically ill has taught them to remove their inherent judgments of others
-
the gender divide on discrimination
-
that the added stress of not living up to the standards of people who don’t understand us can make us sicker – and sometimes, losing those relationships lifts a burden and allows us to heal
-
what inspired them to start Two Being Healthy, and their individual strengths within the blog
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how empowering the blog has been for them
-
why they are so in touch with their emotions, and the importance of a good cry
-
why having a doctor who doesn’t understand you can be soul-crushing
-
the importance of learning to be your own advocate and trusting your body
-
the connection between the onset of symptoms and anxiety, and how having a comfort pack in your handbag can reduce worry
-
why managing health insurance requests is a full-time job
-
why they joke that they are each other’s hype women, and how that has strengthened their bond through chronic illness
-
the importance of a doctor whose ego is not involved in their decisions and diagnoses
-
the importance of a circle of trusted friends, and a support system – even if it’s on FB
-
the importance of finding ways to reduce stress and increase comfort
-
the importance of moderation, even in the application of healing modalities – and why you still need to live your life and do the things you love
In an effort to preserve this guest’s privacy, we are using an alias in this episode – an Uninvisible first! Ilene is an award-winning 6th-grade elementary school teacher. She is also a survivor of rape, “endometrial symptoms” (aka, undiagnosed endometriosis – chronic pain that was only compounded by her sexual assault), and hypothyroidism. She joins Lauren for a no-holds-barred conversation about her how her health and physical experiences have affected her emotional world, and informed the woman she is today. A note: while rape and sexual assault are not traditionally categorized as “invisible illnesses”, the emotional scarring these experiences can leave behind is most certainly a mental health issue – and a social issue, at that. We hope that by allowing Ilene to share her story, we can provide a platform of encouragement for survivors to speak their truth – whether that means they heal by sharing their stories, or heal by choosing not to. You are with us, and we are with you. We stand together.
Listen in as Ilene shares…
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that never being officially diagnosed with endometriosis made her mentally tough: if doctors wouldn’t legitimize her pain, she wouldn’t, either – and she has taught herself, for better or for worse, to “push through”
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that she learned she didn’t have a “normal” reproductive system because she got her period and was spotting very early
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that she was diagnosed with hypothyroidism at the young age of 14, because she exhibited extreme fatigue
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that she was put on birth control to regulate her periods, but quickly taken off it because it did not interact well with her thyroid medication – and luckily, her doctor spotted the issue (a risk of potential stroke)
-
that she had a cervical infection at 21 that gave her acidic discharge – the kind that burned through her underwear (this is not uncommon, and can be brought on by stress)
-
that her cervical infection and its subsequent doctor’s appointment allowed her doctor to find a cyst on her cervix which she removed
-
that she was raped the day she had the cyst on her cervix removed – after sharing with her rapist (a then-boyfriend) that she was not to have sex while the removal area healed
-
that, because of shame and embarrassment, she didn’t tell her doctor she had been raped when she went back the next day to have her cervix checked
-
that, looking back on her story, she was told over and over again by colleagues and medical professionals that she should be able to function normally with her painful periods
-
that, in grad school, she started having fainting spells associated with a regrowth of her cervical cyst and another cervical infection
-
how long it took her to acknowledge her experience with her former partner as rape
-
how meal and bathroom breaks as an elementary school teacher create a lot of inconveniences with regard to female reproductive system management, especially for people with pain and heavy bleeding (Ilene would carry extra pants and underwear, and would bleed through multiple pads AND tampons, as well as clothing) – while managing young children
-
that a doctor finally told her she could elect to have an invasive surgery to officially determine an endometriosis diagnosis – but Ilene opted out of the surgery, instead telling herself she didn’t have endometriosis, and was “not sick”
-
that she continued to have cervical cyst regrowth over the scar tissue caused by her rape – and she had to have the cyst removed 20+ times
-
that she dove into family history to understand her reproductive system
-
that her paternal aunt had once been diagnosed with a condition called “swampy uterus” – a reflection of how women are so often perceived by the medical system
-
that getting an IUD was a major factor in her physical recovery (once she got past the concern of hormone disruption); before that, it was regular monitoring of her hormone levels and fertility, which allowed her doctors to customize estrogen and progesterone shots. In addition, she had a light D&C (dilation & curettage), which is a procedure typically used to remove tissue from the uterus during or after a miscarriage or abortion, or to treat fibroids and polyps – and this scraping of her uterine lining was immensely helpful in reducing her symptoms and pain
-
that she has resisted the need for a hysterectomy because she wants to have children
-
that meeting someone else with endometriosis while on her journey to wellness helped to legitimize her own symptoms – she suddenly understood it was all real
-
that she channeled much of her rage at her rapist into blame for the pain in her body
-
her mantra: “You are unbreakable”
-
the moment when she lost her sh*t over the remarks of a male doctor-in-training – and her female nurse defended her
-
that her mother was also raped, and at knifepoint – and so she felt it was her duty to conceal the truth of her circumstances to her mother for a long time
-
why she loves acupuncture
Jameisha Prescod is a London-based activist who lives with lupus, Raynaud’s, and femeroacetabular impingement (FAI); she is also waiting on possible diagnoses of endometriosis and Celiac disease. She is the founder of You Look Okay To Me, an online platform for pain and chronic illness that is chock-full of content about invisible illness, disability, and their roles in tech, art, culture…and everyday life. In this episode, Jameisha sits down with Lauren to talk about gaslighting in the medical industry, and how this has affected her not only as a woman, but also as a woman of color; she also talks about her journey to diagnosis, self-advocacy, and her experience of workplace discrimination. At 23, Jameisha is not only wise beyond her years, but she is also incredibly open, honest, and real. She has founded a thriving community and regularly produces entertaining videos about living with chronic illness and disability, which appeal not only to the Spoonie community, but also to those seeking perspective and understanding.
Join us as Jameisha shares…
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that she first started showing symptoms at 16
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that her doctors dismissed her – and her symptoms – at first; medical providers presumed she had a psychological disorder before they took her physiological symptoms seriously
-
that, where the NHS failed her, she sought assistance from a private health insurer
-
that it was on her to bring resources and information to her doctors in the NHS
-
that it wasn’t until she made a complaint to the NHS that she was referred to a top rheumatologist with a specialty in lupus, Professor David D’Cruz
-
that she’s been discriminated against by medical providers not only for being female, but also for being a woman of color (especially with regard to her reproductive health), and for presenting as younger than she is
-
the prevalence of unconscious bias in the medical industry, especially with regard to women’s reproductive health
-
that as a child, she thought her Raynaud’s was cool because her fingers would change color!
-
that many of her illnesses have a genetic link
-
the “ping-pong blame” of having multiple chronic illnesses: that medical providers often blame one better-known illness for another’s symptoms
-
that she often has to drop her well-known doctor’s name to be taken seriously by medical providers; and the irony of requiring a man’s name to legitimize her symptoms
-
the relief of being vindicated in a diagnosis
-
the frustration of having to fight with doctors
-
how she’s learned to be her own advocate, and how she advocates for friends
-
reflections on a talk she recently attended with the founder of the health app Babylon, and how AI has less inherent bias than a human medical provider is apt to have
-
that her entire family works as advocates for one another – from her grandparents to her mum
-
the importance of speaking up for your needs. While this advocacy started for her at the hospital, it now extends to the workplace and in social situations. She is no longer a “keep calm and carry on” type of person
-
the BBC Extend scheme, and how her employers work entirely around her accessibility needs
-
that she was fired from her previous job for being disabled – which is entirely illegal; but she opted out of taking legal action
-
a discussion about disability discrimination laws in UK workplaces
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what inspired her to start You Look Okay To Me
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how she had to adjust her career aspirations around her physical limitations
-
that she is aware of both able-bodied and disabled audiences when producing her content, keeping both in mind to keep a light, educational tone without being “finger-waggy”
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that her aim with You Look Okay To Me is to create an open space for learning and comfort
Alison Yates is a multi-hyphenate creative living in Los Angeles. A comedienne and actor, producer, writer, photographer, social media manager, website designer, and skincare consultant (phew!), she performs sketch and comedy regularly with Second City and the Groundlings, and has a production company called The People Zoo. She’s been featured on several TV shows, including Jane the Virgin and Mom. She’s lived with migraines since she was 6 years old, and depression and anxiety since she was 15; she very clearly sees the direct link between her migraines and her mental health symptoms.
Listen in as Alison shares…
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when she had her first migraine (aged 6), and that she sees a genetic link in her family
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that she also has digestive issues associated with her migraines and emotional wellbeing, and as such is always aware of the location of the nearest bathroom
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that her digestive issues are currently undiagnosed (have been diagnosed as IBS in the past), but she manages her symptoms with dietary restrictions
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how her migraines come on and manifest
-
treatments she’s tried to manage her migraine symptoms: pharmaceuticals (including Imitrex, Cymbalta, and Aimovig), marijuana and CBD, sleep, chiropractic, massage, physical therapy, acupuncture, Botox, daith piercing, yoga, meditation, and dietary changes
-
that many migraine medications also have an antidepressant effect
-
that women are more prone to migraines than men
-
that her entire life is designed around her migraines
-
that there is a cause and effect for every migraine, and her migraines are easily triggered by bright lights and spinal re-alignment (especially Alexander Technique and chiropractic)
-
that she sees a direct link between her migraines and depression/anxiety
-
that she overdosed on her migraine meds when she was 18
-
that she struggled to access Aimovig (monthly migraine medication) for 5 months, and finally got it
-
that she’s gone through at least 15 medical practitioners and medical practices in an effort to control her symptoms
-
that she experiences numbness after her aura – very similarly to stroke patients; sometimes she can’t distinguish whether she’s having a stroke or a migraine
-
that she’s at a higher risk for stroke because of her migraines
-
that she has learned to be her own health advocate
-
that she makes occasional visits to the ER for morphine if her pain is off the charts
-
that her migraines have wrecked her financial life and spiraled her into debt – between specialists, insurance costs, and surgeries
-
the guilt she feels when canceling plans when she has a migraine coming on, and the gender divide on guilt and responsibility toward others
-
that remote work has been essential to her earning capacity because she can’t work 9-5
-
that she’s created her own community of migraine survivors through social media
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that, while social media can be helpful in terms of building community, it can also be incredibly alienating
-
that it’s much easier to talk publicly about her migraines than it is for her to address her anxiety and depression
-
that migraines have given her some agoraphobia and social anxiety
-
that she was told early on by friends that her “feelings were too big”, so she retreated into herself and her comedy is drawn from an accordingly deadpan style
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that acting has been a productive outlet for her depression
-
the prevalence of mental illness in the entertainment industry
-
that trying to “be better” is exasperating
Join us for another joyous installment with the incomparable Sascha Alexander. Remember that time she thought she had toxic mold, in addition to interstitial cystitis, candida, and Hashimoto’s disease? Well, guess what? That toxic mold ain’t so moldy…it’s Lyme! Lauren sits down with Sascha to find out how she was ultimately diagnosed, and how she’s increasing her detox protocol to rid her body of one of the most insidious of invisible diseases: the tick-born illness, Lyme.
Listen in as Sascha shares…
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that the detox protocols she had begun 5 years ago to treat toxic mold have actually given her a leg up on Lyme treatment, as some of these protocols overlap (infrared saunas, antibacterials/antimicrobials, coffee enemas)
-
that she is now working with the same doctor Lauren works with for her thyroid: Dr. Lisa Hunt at Holtorf Medical Group
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that the more updated protocol for treating Lyme is to boost one’s immune system, rather than to deplete it entirely with long-term IV antibiotics
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that Sascha’s current treatment regimen includes ozone therapy, peptide therapy, and FMT (fecal microbiota transplantation)
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how Lyme works: it survives by destroying the inter- and extra-cellular nervous systems
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that Lyme and syphilis are both spirochetes, and can look similar under a microscope
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the different tests used to diagnose Lyme
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the gold standard for Lyme testing in the US: iGeneX, which is even more accurate and detailed than the Western blot test
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that Lyme thickens blood cells with biofilms (almost like an exoskeleton around the cells), and the biofilms need to be dissolved before treating the infection; this thickening of the blood is similar to HIV infection, as well
-
Lyme is known as the “great imposter” because its symptoms can mimic, and it is often misdiagnosed as, one of the following: rheumatoid arthritis, lupus, MS, ALS, Parkinson’s, fibromyalgia, and CFS/ME
-
her recommendation that anyone with symptoms related to RA, lupus, MS, ALS, Parkinson’s, fibromyalgia, or CFS/ME also seeks out the assistance of an LLD, or Lyme Literate Doctor, to be thoroughly tested and rule out Lyme as a root cause
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that band 58 of her Lyme testing was the definitive indicator of her infection
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the relief and vindication that came with her definitive Lyme diagnosis
-
that Lyme may be one of the worst diseases of all time, BUT it’s curable
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that Lyme causes autoimmune diseases – which may include her Hashimoto’s disease diagnosis
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that her current protocol is being undertaken in steps. First, she has to kill the Lyme in her system; next, she has to repair the damage the Lyme has done to her immune system
-
that her doctor recommended stem cell treatment, but it’s very expensive and she finds her current regimen is working well
-
what a fecal transplant (FMT) is, how donors are selected, and how it works – including all the dirty details!
-
that C. diff (Clostridium difficile) is the only infection for which FMTs are currently FDA-approved; so FMTs are difficult to get a hold of otherwise, unless you find a doctor willing to help
-
what distinguishes Bartonella and Babesia co-infections in Lyme
-
how ozone therapy works: using O3, it kills pathogens in your blood on contact
-
the healing process of Lyme: patients tend to get worse before they get better, and the die-off period during which they feel worse (generally flu-like symptoms, because the die-off releases toxins in the body) is called a “Herxhiemer reaction”, or Herx
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the process of being more “seen” by others since she got her Lyme diagnosis – because her network understands this diagnosis more than they did the previous ones
-
how she has allowed her illness experience to change her for the better: she has learned self-compassion, and to ask for support with acceptance and grace
Dominique Viel is the founder of InvisiYouth Charity, a 501(c)3 nonprofit organization that helps teens and young adults around the world with varied chronic conditions and disabilities discover empowering lifestyle programs to live full lives while battling illness. A natural progression of speaking engagements she began as a teen in research hospital treatment centers, she launched InvisiYouth in 2015 after years of self-advocacy, having experienced a lack of patient-centered platforms that served to bridge the gap between the medical and non-medical aspects of her life while living with invisible illness. In particular, her focus is on teens – the “older” pediatric patients often overlooked and misunderstood by the medical establishment. She strives to foster greater communication and compassion between these patients and their medical teams, and to encourage teens to find outlets to live creative, fulfilling lives in spite of – but with reverence to – their disabilities.
Join us as Dominique shares…
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that she lives with both visible and invisible illness in the forms of: RSD (Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome/CRPS), scoliosis, tachycardia, and undiagnosed EDS (Ehlers Danlos Syndrome) with hypermobility
-
that she first got sick a decade ago (right before she turned 16), and RSD ended her competitive tennis career
-
that, like so many patients with chronic illness, she experienced the “revolving door” of specialists, tests, and procedures in the early stages of her diagnosis
-
that she struggled to maintain and keep balance in her life as a high school student with her mounting medical conditions
-
that she taught herself to be ambidextrous as a result of RSD/CRPS
-
that she was apprehensive to try acupuncture and cupping, but had great success with these therapies for managing symptoms of RSD/CRPS
-
that she struggled with chronic illness visibility in college, and transferred schools in her freshman year because of a lack of accommodation
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that she learned very early on to be her own health advocate, and had an additional early advocate in her mother, who is a nurse
-
that she adapted quickly to new career options because of her physical limitations; her narrative came second to her body’s needs
-
the grieving process of health changes, which accelerated her maturation process because of discussions about mortality
-
that she had no community in the invisible illness world until she launched InvisiYouth at the age of 22; many of her friends either backed off or struggled to understand her conditions because they couldn’t see them
-
the importance of being proactive about your health, rather than reactive
-
that she’s been unofficially diagnosed with EDS – and not officially diagnosed because of the cost and limitations of testing
-
that when she was younger, her lack of ability to explain her conditions made her feel like less of an authority on her own body
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the lack of disability representation in the media, and how important it is to expand our understanding of representation
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that the name of InvisiYouth was rooted in her feeling of invisibility being in an older, often misunderstood youth demographic
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that for the last 7 years she’s speaking publicly at the Children’s Hospital of Philadelphia, addressing doctor-patient communication and responsibilities with particular reference to the teen and young adult community
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that she structured InvisiYouth to work functionally around her disabilities
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how she prepares daily and weekly to manage work and life around her symptoms
-
her advice for those with disabilities seeking remote work
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the importance of meaningfully asking our friends “how are you?” and seeking a truthful response
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that chronic illness, success, and happiness are NOT mutually exclusive
-
the importance of celebrity disability awareness, and how these individuals can put a face on invisible illness for the masses
-
that she’s now been to 47 doctors, and very few ever asked about how she was feeling – which has impacted her goal to empower both patients AND doctors to better communicate together
-
the importance of owning one’s medical adaptations
Lauren brings back a familiar guest: Calliope Tsoukalas, a nutrition and wellness coach based in Los Angeles, CA. Calliope is on the show again not only to go more in-depth about her practice, but also to share her experiences living with one of the most nebulous of invisible illness diagnoses: IBS.
Listen in as Calliope reveals…
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that she felt more connected to her body at a young age because she grew up with digestive problems and gut pain
-
that diet is 75% of IBS management, but exercise and stress are also major factors – but food is the one potential trigger we can most easily control
-
that, like so many of us, her doctors told her she was fine at first when she knew she wasn’t
-
how the apple cider vinegar fad actually made her symptoms worse
-
that changing habits quickly is unsustainable, and fast elimination can sometimes cause more harm than good – moderation and “slow and steady” are key to success
-
that having a support system is an integral part of making lifestyle changes successful
-
that knowing what DOESN’T work is as important a part of the process as knowing what does work
-
that her current diet isn’t strictly Paleo, but rather a combination of various eating protocols – a unique individual diet she’s designed around her own health
-
that supplements aren’t necessarily a Band-Aid – there is a place for them depending on individual needs, and they can be very beneficial
-
that taking prescription drugs never felt right to her, and she resisted them
-
what tends to work best for IBS patients: small meals frequently throughout the day, not lying down after a meal, and drinking (water) 30 minutes before or after a meal, but not during
-
another key to success: meal prep and having snacks on hand at all times
-
that good quality, healthy food can also be delicious food
-
her endorsement of “mindful eating”, and how promoting relaxation while eating can help remove and reduce stressors, and also assist in discovering food sensitivities
-
that blood tests are most accurate in order to discover food sensitivity tests – which are distinct from food allergy tests, and just as – if not more – important
-
that food sensitivities can wreak more havoc on the body over a longer period of time, because they can have a cumulative effect
-
that she usually sees digestive problems in conjunction with depression, anxiety, and insomnia
Sarah Belclaire is an art librarian, fine art photographer, writer, and researcher based in Boston. Believe it or not, she and Lauren connected over email when Uninvisible first launched…because, like our first guest Mercedes Yvette, Sarah had lupus! Let’s explain the use of past tense here…Sarah lived with drug-induced lupus for two years – a reaction to medication she was prescribed for a GI issue (and one that was later diagnosed as only a food sensitivity – and cured with diet change). While her lupus has since passed, she lives daily with the long-term side effects of its presence: in the form of dilated cardiomyopathy. In addition, she has a tendency toward chronic migraines bought on by the long-term use of oral birth control. Sarah has had to make a number of adjustments in her daily life as she lives with heart disease, and her avenue to advocacy has been to document her healing from surgery to implant an internal defibrillator. Through photographs in a series called Unmending, Sarah beautifully illustrates the light and shadow of invisible illness – and inspires us all to remember that the only way out is through.
Join us as Sarah shares…
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that she first got sick about a decade ago, when she was on medication for a GI issue that caused drug-induced lupus
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that drug-induced lupus was so much more damaging to her health than the original GI issue
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her surprise (and Lauren’s!) that a medication with such wide-reaching and devastating side effects was a) still prescribed, and b) not monitored closely enough to prevent the worsening of side effects
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how the side effects of the drug manifested: fluid in her lungs, swelling, protein urea (which affected her kidneys), an enlarged heart, and irregular heartbeat (dilated cardiomyopathy); but luckily – NO nervous system damage
-
that her GI issues were ultimately related to food sensitivity, and were solved with a total diet change – no medications required
-
that she also suffers from chronic migraines – which are related to her long-term use of oral birth control
-
that her recovery from drug-induced lupus took 2 years
-
that she suspects her cardiomyopathy was caused by her drug-induced lupus, even if doctors haven’t yet confirmed this hypothesis
-
that she sought legal counsel when she was diagnosed with cardiomyopathy, but was questioned as to why she waited so long to report the issue (hint: she was healing and being diagnosed!)
-
that she ultimately didn’t pursue legal action against the drug company or against her doctors for malpractice, because it would have been very stressful for her to continually relive the trauma of her illness
-
how she manages her conditions in the workplace
-
that she has to exercise to keep her heart healthy, but she also can’t overdo it – it’s a delicate balance because of her heart issue
-
that there is a possibility she may need a heart transplant in the future; her emotional reaction strategy is to live in the moment as much as she can
-
that she has had an internal defibrillator implanted
-
that she has documented her surgical scarring (as a tool for recovery) in a fine art photography series called Unmending; this experience helped her normalize the healing process because it allowed her not only to express herself, but to return to a comfortable (and comforting) working medium
-
that she’s been fortunate to find a wonderful medical team at Mass General hospital
-
that there is not a culture of compassion in the workplace, but she’s been fortunate to have support for her conditions at work
-
which advocates in the invisible illness world inspire her
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the need for greater community-building – and access to these communities – in the invisible illness world
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how she stays active and motivated to exercise
Kent Holtorf, M.D. is the medical director of the Holtorf Medical Group, and a founder and director of the non-profit National Academy of Hypothyroidism (NAH). He has trained numerous physicians across the country in the use of bioidentical hormones, hypothyroidism, complex endocrine dysfunction, and innovative treatments for chronic fatigue syndrome, fibromyalgia, and chronic infectious diseases, including Lyme and its co-infections. Lyme, in particular, has been the focus of the Holtorf Medical Group and has been a passion of Dr. Holtorf’s – not least because he, himself, lives with chronic Lyme. He is also a fellowship lecturer for the American Board of Anti-Aging Medicine, the Endocrinology expert for AOL, and is a guest editor and peer reviewer for a number of medical journals, including Endocrine, Postgraduate Medicine, and Pharmacy Practice. He has published innumerable studies and papers on his various topics of interest and expertise.
Dr. Holtorf has helped to demonstrate that much of the long-held dogma in endocrinology and infectious disease is backed by evidence that proves it is inaccurate. He is also a contributing author to Denis Wilson’s Evidence-Based Approach to Restoring Thyroid Health. He has been a featured guest on many TV shows, including CNBC, ABC News, CNN, Discovery Health, TLC, The Today Show, and CBS Sunday Morning; in addition, he has been featured in print in The Wall Street Journal, LA Times, US News and World Report, SF Chronicle, WebMD, Health, Elle, Better Homes and Gardens, Forbes, the NY Daily News, and Self magazine – among many others. He joins Lauren on this episode to discuss his work at the forefront of chronic illness and thyroid medicine, medical “quackery” and evidence-based approaches not yet recognized by larger medical organizations, the need for healthcare reform in the US and how this might be achieved, and his own struggles with Lyme, which have greatly informed his methodologies and patient-centered care approach.
Listen in as Dr. Holtorf shares…
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about being both a survivor of chronic illness (Lyme) and a practitioner
-
how so many medical practitioners who treat chronic illness came to alternative/integrative/experimental treatments because they themselves were once sick
-
that societal guidelines are far more restrictive and often less evidence-based than innumerable anecdotal cases, particularly with regard to chronic diseases like Lyme – and how organizations like ILADS and the Infectious Disease Society of America still don’t even classify Lyme as a chronic illness despite the mounting evidence to the contrary
-
that the fatigue of chronic illness is entirely different from general fatigue
-
that he first went into anesthesia because he was so fatigued, and he knew this field would keep conversations with patients – which were further exhausting him – to a minimum
-
that he started attending “alternative medicine” conferences, and found the studies and practitioners coming out of these events were far more evidence-based than the materials with which he was presented in medical school and in residency
-
that he worked on optimizing his hormones to get well
-
how everyone’s “normal” is different
-
the studies from his Fibromyalgia and Fatigue Centers (FFC), which indicated that most patients saw – on average – 7.2 physicians without improvement in chronic symptoms (current numbers are more like 12-14 physicians without improvement in symptoms)
-
how care in the US has become more segmented, and it’s deteriorating
-
that doctors are the least empathetic group he’s ever seen
-
what doctors are working against: the business model of health insurance (which is tied into quantity over quality, time restraints, and big pharma); ego and self-esteem issues
-
how quickly his work has been dismissed as “quackery”
-
how few practitioners can’t – and often don’t want – to take the time to find the source of chronic and invisible illness
-
the stress connection to health – it can devastate the immune response and be a huge factor in chronic illness
-
that he knew he had Lyme – and his blood was so thick he had to wait months to thin it out in order to properly test it
-
that he used antibiotics for 4.5 years – and would never prescribe them that long for ANY patient
-
that he is a fan of Ozone, LDN, stem cells, and peptides for treatment of specific chronic illnesses, and has used these therapies himself
-
if you don’t fix the immune system, you won’t get rid of the infection; his ethos is root-cause based for this reason
-
his whole life, he was never able to get out of bed before noon. Now, he is much more highly functional
-
the chronic illness cycle of rest and anxiety when you can’t get to sleep despite total body and mind fatigue
-
his take on the opioid crisis: that so many highly addictive opiates have been approved by the FDA because of special interest groups and big pharma
-
the frustrations of the rising cost of medication
-
how the US has the least free-market healthcare system in the world, despite our acceptance of capitalism – and how this is entirely tied to big dharma
-
the frustration of communication between “standard” Western doctors and the more “experimental” medical establishment
-
placebo doesn’t work in chronically ill patients in the same way it does in “well” patients – it’s more of a “no-cebo” among the chronically ill
-
that the sicker the thyroid patient, generally…the more T3 they need (combo therapy of T3 and T4)
-
that doctors are taught to memorize and to segment the body, rather than understanding multi-system symptoms and treatment
-
the cost of chronic illness
-
that Lyme is often misdiagnosed as Parkinson’s, ALS, and MS – among other conditions
-
that his Lyme disease was initially misunderstood as HIV/AIDS because his immune system was so incredibly suppressed
-
that coagulation of the blood is common among immune-suppressed patients
-
that he is in favor of universal healthcare, but fixing our system is not as simple as that – it also requires a free market and reduced prescription costs, as well as a removal of price-fixing among big pharmaceutical companies
-
restrictions on publishing medical studies: even medical journals are funded by big pharma ads, which presents a conflict of interest and some collusion
-
that he encourages healthy, informed debate over angry outbursts
Paige Fockler is a performer and podcaster who lives with depression, anxiety, and bipolar disorder. She is the host of Greetings From Depression, a podcast in which she interviews individuals who live with mental illness, and aims to create an environment in which discussions about mental health are acceptable, productive, and completely de-stigmatized. In this episode, she talks about her personal struggles, distinguishes between bipolar I and II, and tells us what being an “oversharer” means to her; the fear of not being believed by health professionals, shame, and making it OK.
Join us as Paige shares…
-
when she first noticed she was experiencing manic episodes
-
how her family (and her mom, in particular) is her main support system
-
that the boundaries of her relationship with her empathetic health advocate (her mom) can be blurry; as such, she doesn’t always share everything with her
-
that she wasn’t diagnosed with bipolar II until she was in her 30s; but she was diagnosed with general depression in her late teen years
-
the relief that comes along with diagnosis
-
that she has to be physical to cope with her symptoms in order to avoid her condition manifesting in anxiety
-
the generational role the Internet has played in her diagnosis and treatment, particularly in the way it has enabled her to do research on her condition
-
that her anxiety in healthcare stems from a fear that practitioners will not believe her
-
the stigma associated with conversations about mental health
-
the role gender – and gender roles – plays in her emotional experiences, and the lack of shame she’s always felt about sharing
-
the accommodations she’s made for herself in professional environments
-
the greatest bugbear of mental illness: when people’s reactions are to feel “sorry” for her or to judge
-
why she’s an “oversharer” – because she doesn’t want to be alone
-
that she needs structure to cope with symptoms
-
the importance of empathy
-
that she had to learn the difference between “sharing” and “oversharing”
-
how comedy is a natural outlet for her
-
why she doesn’t have a definitive opinion of suicide
-
how journaling has helped her
-
that her superpower is being empathetic and being able to tell if someone is depressed – almost instantly
-
that it’s important we understand how others cope, and support them – and that we remove stigma and normalize these support behaviors
-
support apps she recommends: MoodNotes, TalkSpace, and Stigma
-
how she manages shopping addiction, and when she realized it was a trigger for manic episodes
Karen Felice is a renowned Reiki Master Teacher in the Usui and Karuna traditions. She’s no stranger to the demands of a busy work-life, with a background as a TV news producer and editor. Having made a career shift in 2011 with her training school and Reiki practice, Reconnect to Wellness, she now keeps a space in West Hollywood, CA, and is a published author. Her first book, “Compassion Speaks”, offers a modern approach to self-care through messages of compassion for self and for others. As a healing modality, Reiki can be incredibly supportive of various health treatments, both physical and mental. In addition, Karen’s understanding of compassion – a central theme of our conversations on the podcast – made her the perfect guest to talk about self-care in a world where busy-ness is often rewarded, and invisible conditions go so long unnoticed and unacknowledged.
Listen in as Karen shares…
-
the origins of Reiki and what it is: a collectively balanced approach to energy healing
-
that Reiki does not interfere with western medicine or with religious beliefs; it is non-invasive and operates along energy frequencies
-
that it helps to begin one’s Reiki experience with an intention: what energies we want to clear, and what we want to replace those energies with
-
her key points of clarity: that there is enough goodness to go around for everyone, and that compassion is essential
-
that Reiki enables clients to decompress and reconnect to wholeness and wellness (hence the name of Karen’s practice!)
-
that she has worked with patients in hospice and in oncology wards, and has clients who have invisible illneses such as EBV
-
that the soul is in the heart chakra, and that’s where she sees people’s true selves
-
that her work is in aligning chakras and sharing love
-
that even Cedars-Sinai has a Reiki master on staff
-
that colors correspond to the chakras, and they hold a vibrational resonance
-
that she feels where energy is flowing and where it is not flowing; but that a lack of flow doesn’t mean a block – it actually means the body is trying to heal along with the mind
-
that so much of energy flow in Reiki is about a removal of judgment, which is replaced with compassion
-
that she is intuitive in session, and shares the messages she receives
-
that so much of her work is about the restoration of the mind-body connection
-
that she most commonly sees patients suffering from anxiety – which is ultimately a desire for clarity
-
that she helps patients shift the narratives that may be harming them emotionally
-
that it’s a practice to remain centered when we are surrounded by chaos; as energetic beings, we need to develop a filter
-
how her book, “Compassion Speaks”, is a great meditation companion; it can serve as a wonderful reset
-
that Deepak Chopra was her meditation teacher, and he told her: “Turn off the news. Start telling a better story.”
-
“Compassion dispels fear.”
-
that she also recommends meditation as a healing modality; she’s been doing it (with a mantra) every day for 11 years
-
Deepak Chopra’s teaching that 30 minutes of meditation is equal to 8 hours of rest and sleep
-
the importance of eating clean and cooking with intent to receive nourishment
-
the importance of gratitude
-
how to shift thought patterns to mine for joy and become present in a new vibration
-
that negativity attracts negativity, and to shift this energy Karen goes to her heart and seeks the opposite…in what she calls “The Opposite Game”
-
that a diagnosis is a compass; it is not final
-
that she encourages people to be kind to themselves, especially if they’re facing invisible illness; and to get complete checks through their doctors
-
that Karen’s dog, Shayna, joins patients in session and is a great support
Sonora Chase is an actress and writer living in Los Angeles. She has now survived not just one, but TWO acoustic neuromas – benign, fast-growing brain tumors that have affected her hearing, balance, spatial awareness, and facial nerves. In this episode, she shares her brave story – which involved a battle with health insurance companies, the steep learning curve of discovering her rights as a patient, and one big happy ending: getting the doctors she wanted and having both tumors removed. In addition to her experience surviving her own invisible illness, Sonora is also the survivor of others’…she shares about the importance of finding community as you navigate mental illness and addiction, and how Al-Anon has been an irreplaceable resource for her as the loved one of individuals with addiction.
Join us as Sonora shares…
-
what an acoustic neuroma is
-
that a fellow actor who also had an acoustic neuroma: Mark Ruffalo
-
the difficulties of navigating the health insurance system with an acoustic neuroma
-
that as her symptoms continued, she experienced facial paralysis without pain (but with numbness); and that it took her longer to discover the hearing loss associated with her acoustic neuroma
-
that she didn’t realize something was really wrong until she realized the extent of the hearing loss in her left ear
-
that the tech at her MRI was especially nice to her – and she suspects it’s because he could see the growing tumor in her brain
-
that her acoustic neuroma was pushing her brain stem over, which causes trouble breathing and contributed to intense fatigue and balance issues, as well as constant nausea
-
that visual stimulation also contributed to fatigue – half her brain was working twice as hard to keep up. Her fatigue persists to this day.
-
that her inner ear was removed with her tumor, and she had to relearn how to walk after surgery
-
how daily chores and tasks look when you are a Spoonie – and how she has to be deliberate in her choices
-
her amazing surgeon, Dr. Rick Friedman, neuro autolaryngologist, and the translabyrinth surgeries he has performed to treat her acoustic neuromas – which involve a medically-induced coma
-
that acoustic neuromas are generally considered inoperable at 4 inches…and Sonora’s first one was 3.8 inches!
-
that, based on continuity of care, patients can push for the same doctors for major health interventions – even if health insurance providers say “no”
-
for three months, she spent 8-9 hours a day on the phone pushing her health insurance providers for the care she needed
-
that CA Dept of Managed Healthcare exists to assist patients in imploring health insurance companies to do the right thing
-
that the fight for proper healthcare taught Sonora about her rights as a patient – but it took three months, because several operators weren’t even aware of their company’s legal obligations
-
how important patient education is; that it is key to know your healthcare rights, and to be KIND to the messengers on the other end of the line
-
how getting her surgery at UCSD was one of the best experiences of her life, because the Acoustic Neuroma Center at UCSD is incredibly well-designed with patient sensitivities in mind
-
that she is still waiting for a surgery to “install” a bone-anchored hearing device (Baha) so she regains some hearing in her left ear
-
how she connects to spirituality to manage her health from a psychological perspective – through Buddhism and crystal healing
-
some of the complications of brain surgery, including a brain leak – which Sonora suffered after her second surgery (and is relatively rare)
-
a personal analysis of the pain scale – that all pain is relative
-
that Sonora is not only a survivor of invisible illness where her tumors are concerned, but that she has also survived loved ones with addiction problems, and regularly attends Al-Anon meetings
-
that she credits the Centre for Neuro Skills in Encino for helping her get back on track after her first surgery
Lauren interviews another amazing health practitioner in this episode: Michele Sherman, MFT. Michele is a specialist in EMDR (eye movement desensitization and reprocessing) therapy, which can be extremely useful in overcoming traumas of all shapes and sizes. She runs a practice out of Encino, CA
Listen in as Michele reveals…
-
why EMDR is an effective and fast treatment for trauma
-
how EMDR works
-
why EMDR is really a mind-body treatment, and has helped patients surviving eating disorders, PTSD, childhood trauma, grief, loss, anxiety, depression, and sleep problems, among other concerns
-
how EMDR allows patients to release unconsciously held pain in their bodies (when associated with trauma)
-
how EMDR treats a root cause for a solution and change
-
the importance of universal mental healthcare coverage
-
the importance of normalizing variations in mental health among individuals, and offering resources and advocacy
-
that there is help out there, and we need to de-stigmatize the search for treatment
-
that employers should offer opportunities and education on healthcare incentives, because it’s their job to provide access to help – and health
-
that social media is a form of isolation, and leads to depression among millennials
-
that being depressed doesn’t have to be a way of life
In episode 10, Lauren conducts her first international interview with actress Katie Georgiou, who lives in London (UK). Katie has been living with Relapsing-Remitting Multiple Sclerosis (MS) since she was young, and waited 10+ years for her official diagnosis at age 19. In this conversation, she tells us what her flares look and feel like, gives her frank opinion of her experience with the National Health Service (NHS) in the UK, and shares about the perspective shift that enables her to survive with grace (hint: it’s all about taking responsibility for her healing and taking ownership of her condition).
Listen as Katie shares…
-
how she first experienced symptoms at the age of 9, but wasn’t properly diagnosed with Relapsing-Remitting MS until she was 19
-
that even when she was given her official diagnosis, she was never given an immediate treatment protocol – only prescribed an anti-depressant to assist in reducing the swelling in her brain
-
that when she was given a diagnosis, she felt her world fall apart – because nobody told her what to expect or how to cope
-
her initial concerns about taking anti-depressants as an artist
-
what a flare looks like for her: incontinence, often uncontrolled muscle action, tingling and numbness in her extremities, slurred speech
-
the key to her survival: finding the humor in her illness, and OWNING her condition without apology
-
that, before she was able to openly acknowledge, cope with, and treat her condition, she felt like she was living with a monster…her behavior was erratic and she felt out of control (both of her body and of her mind). At this time, her illness had ownership of her – and her stress would increase her symptoms.
-
that, as an adult, she was treated with steroids – and that this treatment was not only invasive and inconvenient, but was, at the time, not tested for long-term side effects. This lack of market research gave Katie pause and made her wary of being fed information without further research, and taught her to say NO: because she knows her body better than anyone else.
-
her current health protocol: more regimented sleeping and a largely vegetarian diet, resting when she needs to, and taking active steps to control stress
-
that she still struggles daily with the the concept of WHEN to share her health story – especially in work situations, where she fears judgment
-
that, as an invisibly ill person, you make one of two choices: you become an advocate, or you get on with your life
-
that, especially with neurological disorders, positivity of mind, spiritual health, confidence, and a lack of shame are key…but are often lacking in online forums, which can be full of “symptom porn”
-
that key to her perspective shift is gratitude. It has allowed her to make peace with living with MS and lighten up, stop judging others for not understanding, and experience her body in a way that enables her to empathize with others
-
that she is grateful for the NHS (nationalized health), but sees its downside as well
-
that no caregiver has ever asked her about how her illness affects her mood – which is central to the invisible illness experience
-
the importance of representation, and our best MS example to-date: President Bartlet in The West Wing
-
that stem cell and chemotherapy treatments for MS are not readily available in the UK
-
that one of the best things those of us in the invisible illness community can do for ourselves is to become articulate about our needs and experiences – and be willing to share with others, without shame
-
that we are ALL WORTHY of respect, care, and love – and that low self-esteem is rampant in the invisible illness community and we have to shift away from it
-
the responsibility of artists and creatives to use their platforms to continue the dialogue about invisible illness and “taboo” topics in their work
Lauren sits down with Rachel Trobman, founder and CEO of Upside Health, creators of the pain management app Ouchie. Not only is Rachel a busy working mom of 2, but she also lives with mixed connective tissue disease. She gives us a glimpse into her life running a fast-growth business and helming a family on limited bandwidth, and explains the birth of her heart-centered mission to help others reimagine chronic pain care. Not only is Rachel a survivor of invisible chronic illness, but her mother and step-brother are, as well (Lupus SLE and cystic fibrosis). This powerhouse former TV news producer is no stranger to pushing herself to the limit, and she’s doing it with true purpose in a bid to make the world a better – and more compassionate – place.
In this episode, Rachel reveals…
-
how her personal experience and family history of chronic illness led her to develop Ouchie, a mobile companion for pain management
-
the symptoms and treatment of mixed connective tissue disease
-
how a lack of understanding of rheumatological and autoimmune conditions in the medical community can lead to a lack of proper care (in many cases)
-
that you’re stronger than you think you are, and sometimes we limit ourselves because of fear
-
that pregnancy didn’t worsen her symptoms, but in fact improved them – and she had to go to the doctor once a week to keep tabs on her condition
-
why patients on Plaquenil need to have regular retinal screenings
-
that the way in which chronically ill patients are monitored (with regard to minor risks and symptoms, often annually) can build frustration, because these patients are asked to live for long periods of time in relative uncertainty
-
that she’s never been envious or resentful of loved ones for being well; but she can sometimes harbor some irritation toward those in the wide world who take no notice of how lucky they are to be well
-
what she believes all people with chronic illness should embrace more: “what you’re able to accomplish is enough, and nobody else is judging it other than you”
-
that she has faced more discrimination as a mother than she has as a patient of chronic illness
-
that her goal with Ouchie is to educate, advocate, and EMPOWER users, and ultimately to facilitate better patient-clinician relationships and assist patients in navigating complex healthcare systems – to ensure that no one hurts alone
-
that ultimately, working on Ouchie has made her HOPEFUL for the future of medical science and pain management
-
that Ouchie grew out of examples she saw growing up of loved ones who lived with chronic conditions but were not controlled by them
-
that Ouchie uses evidence-backed research in order not to ignore the fact that patients will have bad days, but to help them move through those rough patches with a team behind them
-
that setting small goals can give you something to work toward and be proud of as you work on healing
Join us as we embark on a series of interviews in search of a diagnosis. Dayna Schaaf is an entrepreneur based in Phoenix, AZ. She started having symptoms a few months ago and has early possible diagnoses of rheumatoid arthritis and/or lupus SLE. What does the search for answers in the invisible chronic illness world look like? How has it affected Dayna’s day-to-day? What about her access to healthcare? How has she found clinicians and community? What are the pitfalls – and the wins – of being on the hunt for a label? And should she allow that label to define her personhood as she gathers information?
Listen in as Dayna shares...
-
how she had an extended “summer flu” before she realized something more was going on
-
that she thought initial physical pain symptoms were related to her favorite workout: boxing
-
how she didn’t start exploring a deeper diagnosis until she found a lump in her armpit – which wasn’t cancerous, but seemed reactive (and which, in classic Dayna style, she has named…Nora the Node)
-
why she recommends you bring a friend or advocate with you to your first mammogram
-
that she has an aversion to doctors because of an early diagnosis of IBS, which she never felt was taken seriously
-
that former guest and autoimmune wellness coach Sascha Alexander is part of her support system
-
why she advocates for keeping a medical history file; Dayna keeps a medical notebook and brings it to every appointment, using it to track symptoms
-
what indicators she has for lupus and for rheumatoid arthritis
-
a detailed analysis of her blood work and x-rays
-
the struggle to adjust her lifestyle as an active person with chronic fatigue, brain fog, and pain
-
why working from home actually delayed her response to her symptoms – although it’s a saving grace that she’s able to dictate her own schedule as she seeks a diagnosis
-
how she has to become deliberate with her time and energy during a flare
-
the rush to meet the deadline to sign up for a comprehensive healthcare plan as she upgraded to cover her needs more effectively – and how much work it was to gather information and make a decision
-
the key piece of advice that got her a doctor’s appointment right away despite a weeks-long waiting list: asking for the doctor’s cash rate
-
that she believes in western medicine and science, but is also aware of her position as a customer in the rubric of American healthcare
-
why she sought a functional/integrative practitioner to treat her symptoms and diagnose her
-
her current doctor’s advice: “don’t get attached to your diagnosis. Just because you don’t have a clinical diagnosis doesn’t mean your symptoms aren’t real.”
-
that, in order to get a clinical lupus SLE diagnosis, patients have to meet four of 11 total criteria
-
her fear that people will think she’s faking it
-
how gratitude journaling has helped her shift her mindset
-
that nobody knows more about your body than you do: so take all advice you receive with a grain of salt, and remember any doctor on your team is a team member – but YOU are the CEO
In this episode, Lauren sits down with Dr. Harold Kraft, owner and operator of LaserMD Pain Relief in Southern California.
With a background in anesthesiology and engineering, he has been working in groundbreaking Class 4 laser technology to treat and cure various forms of pain and injury, from neuropathy, arthritis, CRPS, and sciatica to fibromyalgia, PTSD, and TBI (traumatic brain injury). Sometimes in just a few short treatments, he has observed incredible results and reduced symptoms – and, in many cases, eliminated or bypassed the need for prescription opioids. While his practice thrives, he has plans to make laser therapy (which has been common in veterinary work for many years) more accessible and affordable to the average person – and continues to offer life-changing treatment to the masses.
Listen in as Dr. Kraft shares:
-
how laser therapy is non-invasive and has little to no side effects, but can have incredible anti-inflammatory and nerve growth/repair results; in PTSD or Alzheimer’s, it can assist the brain in developing new circuits
-
that in terms of pain relief, he has observed a genetic link (through the maternal side) to a patient’s receptivity to treatment
– 3 out of 5 tend to see results; this same link does not seem to apply with regard to PTSD/TBI, in which the odds of benefit from treatment are, across the board, “nothing short of stunning”
-
that his practice is completely unique in that he uses ONLY laser treatment; he no longer prescribes pain me dication or gives injections for pain
-
that many of his patients have come to him after having “failed” to manage their pain in every other case
-
that the pendulum has swung too far away from opioids for people who need them
– some of this need is entirely legitimate, and the difficulty in acquiring pain medications for those in need is a crisis of its own
-
how his wife’s dog, Harley, is the reason he discovered hot laser therapy
-
that he tested the laser on himself first, and saw incredible results in treating hip bursitis
-his belief that high - dose laser will, in a few years, become the gold standard of treatment for PTSD and TBI
-
that previous studies of hot laser therapy in treating PTSD and TBI showed a 30
-
60% decrease in depression, and appeared to entirely eliminate nightmares and sleep disturbances
-
that, based on his research, he estimates 1 million veterans and 5 million civilians
in the US suffer from PTSD; females suffering from PTSD are most often survivors of sexual trauma
-
that, based on the treatments he’s been offering to PTSD patients over the last year, he’s seen a 30
-
100% reduction in depression, along with the elimination of sleep disturbances
-
that he needs funding and investment to continue genetic research and to scale in the field to create a PTSD/TBI mobile laser clinic; “there is tremendous potential – it just needs to be developed”
-
that laser treatment for PTSD is not currently covered by insurance; laser treatment for pain and neuropathy are sporadically covered
-
that the VA is flawed, and unlikely to be early adopters of hot laser PTSD treatment
-that the US healthcare system is terribly flawed, and that the introduction of health insurance companies has ended as a bad experiment that we’re sort of locked into; that the VA is an example of a medicare for all system that has had equally bad results; and that the major problem with both models comes down to TOO much trust in physicians (and physicians having too much belief in their infallibility)
-
that the key to fixing the system is education
-
that health insurance is not the same as health care, and that health care is not the same as prevention; prevention is the most important of these, and could allow us to treat people at substantially reduced cost
-that, though he is not an expert on depression itself, he sees hot laser therapy as a potential treatment for chronic and major depression
- that he’d love to see hot lasers in every primary care practice, and that he is developing a laser for that purpose right now
-perhaps most amazing about hot laser treatment is that, unlike many opioids, it is not a Band-Aid; rather, it treats a root cause
-
that patients should push their insurers to cover treatments like hot laser (if it is not already covered on their plan)
-
why patients should keep a journal: so they can speak the same language as their physicians, who are often data-driven
In episode 5 of Uninvisible, Lauren is joined by best-friend duo Becca Murray and Liz Beebe – and a snoring pup named Leroy! Becca is a body-positive lifestyle and wedding photographer based in LA, and Liz is the writer of feelsgoodblog.com and lead singer of Dustbowl Revival (not to mention dog-mom to Leroy!). Why are these ladies on the show, you ask? Because both have lived through – and continue to thrive through – their fair share of invisible illness diagnoses (and lack thereof), from Chron’s and IBD to SIBO, Candida, a heart murmur, gallstones, toxic mold, metal toxicity, and parasitic infections like blastocystis hominis. As best friends, they have supported and advocated for each other’s care and treatment protocols – and are here to share their journeys with us. Let’s bust some ass on this SUPERDELUXE episode – good for a long drive or divided between two shorter trips!
Listen in as Liz and Becca reveal...
-
how Liz presents with Chron’s…but most likely lives with a version of IBD
-
how Liz was first introduced to elimination diets
-
how meditation helped Liz find a pathway to whole body health
-
how Becca’s heart murmur likely caused her to overdose on antibiotics growing up – which probably contributed to more problems later on
-
how growing up in a diet-culture-focused household prevented Becca from learning how to eat healthfully, and how a lack of healthy fats gave her gallstones at 19
-
how diet culture turned Becca toward an eating disorder
-
how Becca’s dad noticed she was having balance issues, and after seeing a neurologist – who recommended she take a sleep study because she was a “sleepy lady” – she was diagnosed with idiopathic hypersomnia and temporarily given a prescription for military-grade speed
-
how Nuvigil allowed Becca to feel “normal”, but when her insurance changed, she was no longer able to afford it
-
how AIP was triggering for Becca, from an eating disorder perspective
-
how the meat these women choose to consume has only had “one bad day” – they seek sustainable, well-cared-for options not only for health reasons, but also for moral ones
-
how both women have survived metal toxicity, treating themselves with both supervised chelation and NDF drops
-
that your gut is your second brain
-
what it looks like to justify your invisible conditions to people who can’t see them or understand them
-
Liz’s #howdoyoueatontheroad – her tips for healthy eating when she’s touring with the band
-
how Becca’s health struggles have given her the opportunity to do a deep dive into body positivity – and who has inspired her in that space
-
why body positivity is a great space to explore when you’re going through health challenges – because it will remind you how hard your body is working and how strong it is to have gotten you this far
-
what is most fascinating about functional medicine: that most functional medicine doctors were once sick themselves
-
how Liz has learned to be unapologetic about her health needs: because she’s learned the hard way what happens when she doesn’t listen to her body
-
why Liz believes in food first
-
why it’s important to be politically active when it comes to your health insurance
-
how your skin is as much an indication of what’s going on in your body as your digestion and energy levels are
-
how talking creates community – and why you should look outside yourself for help
-
why you must set yourself up for success in your health
-
that if you can’t give yourself permission, Beebe does
-
how vitally important sleep is to healing your body
-
that self-care is not selfish, and rest is a weapon (and stress management is part of self-care)
In part 2 of Lauren’s interview with Sascha Alexander, we delve deeper into her life as an autoimmune wellness coach. What are her tips and tricks for those of us living within the invisible illness spectrum? And how has perspective shift informed her personal journey to wellness, and to coaching others?
Join us as Sascha reveals…
- The 6 root causes of chronic illness
- Why health coaching is so important for survivors of chronic illness - That everyone with an autoimmune disorder has a gut imbalance
- How her inspiration to help others kept her alive in her darkest moments
- Additional resources and advocates who have inspired Sascha and informed her work
- Her take on recent documentaries about invisible chronic illness
- Her top tips for those in the invisible chronic illness community
- Her favorite patient forum on Facebook
- Her favorite indulgences
- Everything you need to know about coffee enemas
In this episode, Lauren sits down with Certified Nutrition Specialist and health educator Alyson Roux (MS, CNS, member of the CAN and IAHC). Alyson lives with invisible illness (Familial Mediterranean Fever and degenerative disc disease), and also operates a weight-inclusive (HAES approach) practice in Silverlake, Los Angeles.
Listen as Alyson reveals:
- How an Ayurvedic practitioner originally suggested her diagnosis of Familial Mediterranean Fever, and how an episode of House finally convinced her to treat it!
- The common cycle of responsibility for one’s symptoms, and the continuing cycle to heal oneself as a survivor of invisible illness
- The lack of proper screening tools for mood disorders among those surviving invisible illness (and how many of us are prescribed an SSRI when doctors haven’t even screened us for such disorders)
- That the medication prescribed for FMF can cause significant B12 deficiency if not monitored properly – and that this deficiency is likely the underlying cause of the peripheral neuropathy with which Alyson currently lives
- That her degenerative disc disease forced her to go on disability for a brief period of time, and that this upheaval in her life opened the way to an entirely new career path in nutrition and wellness
- That the shift in Alyson’s health spurred her interest in dietary changes, which in turn changed her relationship to food in a positive way
- That poop is a great barometer for individual optimal health!
- The importance of weight-inclusive clinical practices
- The importance of bringing your health advocate to your doctors’ appointments, and why you should arrive at every appointment prepared
- Why we should all throw out our scales – and what you can say at the doctor’s office if you don’t want to be weighed at every visit
- How those living with invisible illness have to be deliberate with every minute of their day – and why that can be exhausting
- That “Compassion Fatigue” in the healthcare industry is real – and clinicians can be trained in how to cope with it!
- Why patients with multiple healthcare providers should make sure each member of their team is in contact with one another
- Why having a pet is one of the best things you can do for your overall health
Meet Sascha Alexander, Certified Autoimmune Wellness Coach extraordinaire. In part 1, learn about Sascha’s personal battle with autoimmune disease: her symptoms, diagnosis, and the steep learning curve of treatment for invisible illness. Specifically, Sascha lives with mold toxicity, Interstitial Cystitis, and Hashimotos disease. Stay tuned for part 2, where we will hear more about how her journey to wellness turned her onto coaching, and how becoming a coach has changed her life.
In this episode, Sascha reveals:
-
when and how she first realized she was battling invisible chronic illness and how she suspects it all started with childhood mold exposure
-
how her microbiome was wiped by overuse of antibiotics administered for smaller infections as a child, which she believes also contributed to her autoimmune diagnosis
-
how her dads genetics may be stronger than the rest of her family’s, because he’s the only one who never got sick
-
the cost of health and how she has had no choice but to shell out
-
how her Hashimotos disease and the inflammation associated with it led her into an eating disorder; a common occurrence among autoimmune patients
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how she was lucky to avoid radioactive iodine treatment for her thyroid at the time of her Hashimotos diagnosis
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her battle with her doctors, which lasted years and contributed to the long-term trauma of living in an unstable vessel
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that many doctors gaslight women over their symptoms, when women are 7:1 more likely to develop autoimmune disorders than men are
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that if you’re not being tested for all four of the following: reverse T3, free T3, TPO, and TSH then you’re not seeing a full thyroid panel
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her theory that interstitial cystitis is related to toxic mold and candida, both of which she’s survived
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that if you’re having acid reflux and you have Hashis, that doesn’t mean you have an overabundance of stomach acid but that you don’t have ENOUGH stomach acid
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how you need a practitioner who can treat your root causes, but in the meantime you need to figure out how to be functional
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how a diagnosis is sometimes the Best. News. Ever.
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that for a long time, she took for granted her œsteely will to live because she felt for years that she was dying
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her discovery of Autoimmune Wellness and AIP
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that as an autoimmune wellness coach, she hopes to give her clients a sense of agency in their treatments
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that getting well is an experiment in determination, and if she can do it YOU can do it
Join Lauren as she chats with Mercedes Yvette, known internationally for her star turn on Americas Next Top Model. Mercedes continues to model, and is also an actress, jewelry designer, activist, and busy working momma living with Lupus. She has been a Lupus advocate for many years, and in this episode recounts her diagnosis treatment, and ongoing self-care and symptom management behaviors.
In this episode, Mercedes reveals:
-How she was diagnosed with Lupus, and how a regular yoga practice and Ayurvedic therapies have been integral to her healing journey.
-Why she stopped treating herself with Chinese herbs.
-How she became a contestant on ANTM only 3 months into her diagnosis, and how producers discovered she was sick and focused on her illness as a storyline.
-How she had to hit rock bottom to shift her perspective from negative to positivity.
-Why anyone with potential Lupus diagnosis should see a rheumatologist.
-Why remote work and self-employment are great options for people with chronic illness, and can even be creatively fulfilling while creating income
-How she had a perfectly normal pregnancy despite her Lupus.
-How community and purpose can give your life meaning.
-How she has learned to look out for herself by speaking up when she’s in need.
-Her favorite indulgence: Netflix + wine!
What's is all about, anyway?! Join your host, Lauren Freedman, for an intro to the WHO, WHAT, and WHY of UNINVISIBLE.
This is a short episode, perfect for listening on a quick walk or drive. Get to know us and our mission to bring greater awareness, insight, info, and, above all humanity to the invisible illness community and beyond.
In this episode, Lauren reveals:
- How she first discovered she had Hashimoto's disease and sleep apnea
- How these diagnoses affected her both personally and professionally
- Why advocacy for invisible chronic illness is so important to her
- How to get in touch with questions or suggestions for the podcast
- How excited she is to share this journey with you, the listeners!