Made Visible: Recent Episodes
Harper Spero
Made Visible is a podcast that gives a voice to people with invisible illnesses. This podcast aims to change the conversation around invisible illnesses, helping those who experience them —whether as patients, caregivers, or friends or family members — feel more seen and heard.
I moderated a panel discussion at ReelAbilities Film Festival on The Quiet Epidemic, an eye-opening film about Lyme disease that highlights the emotional toll of patients’ journeys with the illness and the scientific facts of the disease.
During the panel I spoke with the film’s Emmy-winning producer Chris Hegedus, who helped the directors bring this topic to light, 19-year-old Julia Bruzzese, a patient with Lyme disease featured in the film who bravely shared her story because she knew it could help other patients, and Julia’s dad, Enrico Bruzzese, who has been her caregiver and biggest supporter.
This episode also includes my recent conversation with past guest and the film’s executive producer, Ally Hilfiger, who talks about her own Lyme story and how important it was for the film to include both real, digestible science and a patient’s story for viewers to connect with.
The Quiet Epidemic reminds us how important it is to educate about a devastating tick-borne disease like Lyme, which is growing more and more common, yet still so difficult to test for and treat.
For more information about The Quiet Epidemic and ReelAbilities, visit our website at madevisiblestories.com/podcast
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
This podcast aims to change the conversation around invisible illnesses and we need your help! Support our mission by sharing this episode and leaving a review!
Join the conversation and connect with us online!
Website: madevisiblestories.com
Facebook: madevisiblestories
Instagram: @madevisiblestories
LinkedIn: madevisible
Author and patient advocate Ilana Jacqueline experienced medical gaslighting from a young age. At age 19 she was diagnosed with Hypogammaglobulinemia, a rare immunodeficiency.
While navigating young adulthood with an invisible illness, Ilana also faced lots of medical gaslighting, encountering doctors who shamed her out of seeking care.
Ilana has devoted her career to patient advocacy. Through her work, as well as public speaking, social media, and writing books (Surviving and Thriving with an Invisible Chronic Illness, and the upcoming Medical Gaslighting: A Guide to Help You Recognize It, Prevent It, and Fight For Your Life) Ilana helps patients survive and thrive with chronic illness, and spot and combat deadly medical gaslighting. If you have experienced medical gaslighting, you’re not alone, and Ilana is in your corner.
For more information about Ilana Jacqueline, visit our website at madevisiblestories.com/podcast
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
This podcast aims to change the conversation around invisible illnesses and we need your help! Support our mission by sharing this episode and leaving a review!
Join the conversation and connect with us online!
Website: madevisiblestories.com
Facebook: madevisiblestories
Instagram: @madevisiblestories
LinkedIn: madevisible
Melissa is a functional fitness instructor, photographer, and Lupus warrior. After living her whole life in pain, Melissa was finally diagnosed with Lupus in 2006. She began a variety of treatments that helped combat her symptoms, but the physical and mental toll of pain and treatment left Melissa in a place of exhaustion, depression and self-pity.
A few years later, Melissa shifted gears and adopted an approach to managing her pain that included nutrition and lifestyle changes, as well as medical observation when needed. Melissa also shifted her mindset, creating obtainable goals, avoiding all-or-none thinking, and listening to her body.
Melissa has drawn from her transformation to build a career in holistic nutrition and wellness, helping her clients embrace their individuality and be in charge of their own stories.
For more information about Melissa Coulier, visit our website at madevisiblestories.com/podcast
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
This podcast aims to change the conversation around invisible illnesses and we need your help! Support our mission by sharing this episode and leaving a review!
Join the conversation and connect with us online!
Website: madevisiblestories.com
Facebook: madevisiblestories
Instagram: @madevisiblestories
LinkedIn: madevisible
Akiva Zablocki is a former healthcare consultant and the founder of the Hyper IgM foundation. When Akiva’s son Idan was just eight months old, he was diagnosed with Hyper IgM, an incredibly rare genetic mutation that severely compromises the immune system. After three years of diligent research and advocacy, Akiva and his wife were able to obtain a life-saving bone marrow transplant for Idan.
Through this experience, Akiva connected with other Hyper IgM patients and their families all around the world, as well as many doctors and immunologists working to help those patients. This growing community led Akiva to found the Hyper IgM Foundation, which has become a much-needed way for patients and families to connect and share resources that were previously so difficult to find for such a rare illness. Akiva continues to work tirelessly to support his fellow Hyper IgM families and help them feel less alone.
For more information about Akiva Zablocki and his family’s journey, visit our website at madevisiblestories.com/podcast
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
Join the conversation and connect with us online!
Website: madevisiblestories.com
Facebook: madevisiblestories
Instagram: @madevisiblestories
LinkedIn: madevisible
Join me for a very special episode where I sit down with my best friends, Melissa Aives and Danielle Scaramellino, as we reflect on a life-changing moment eleven years ago when I underwent a life-threatening surgery, introducing my friends to a world of uncertainty about my health.
Despite our close bond, they had never witnessed this side of me, leading to an adjustment and redefinition of our friendship. Discover the power of vulnerability, the importance of asking for support, and the lessons we've learned about adapting, prioritizing health, and building a strong support system. This heartfelt episode is a testament to the enduring strength of true friendship and the growth that comes from understanding and compassion.
For more information about Melissa Aives and Danielle Scaramellino visit our website at madevisiblestories.com/podcast
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
This podcast aims to change the conversation around invisible illnesses and we need your help! Support our mission by sharing this episode and leaving a review!
Join the conversation and connect with us online:
Website: madvisiblestories.com
Facebook: madevisiblestories
Instagram: @madevisiblestories
LinkedIn: madevisible
Jamie Nicole is a highly regarded certified health coach dedicated to helping individuals achieve optimal health through complementary medicine and holistic health lifestyle changes. Her passion for health and wellness was sparked when she witnessed the transformative power of holistic health in her own life.
After being diagnosed with Hashimoto's Thyroiditis and later fighting for a narcolepsy diagnosis, Jamie became aware of the lack of representation and access to support for BIPOC individuals with autoimmune conditions. Determined to make a difference, she started engaging in conversations and leading the way for BIPOC individuals suffering from debilitating symptoms. Her story offers hope, understanding, and inspiration to anyone facing similar health challenges while shedding light on the experiences and limitations that many BIPOC individuals encounter on their healing journeys.
For more information about Jamie Nicole visit our website at madevisiblestories.com/podcast
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
This podcast aims to change the conversation around invisible illnesses and we need your help! Support our mission by sharing this episode and leaving a review!
Join the conversation and connect with us online!
Website: madvisiblestories.com
Facebook: madevisiblestories
Instagram: @madevisiblestories
LinkedIn: madevisible
Kate Milligan is an Emmy-nominated producer, writer, speaker, storyteller, and founder of 1 Girl Revolution: a multimedia platform dedicated to highlighting the authentic stories of everyday women and girls who are changing the world through their lives.
Diagnosed with Job’s Syndrome at a young age, Kate faced years of uncomfortable symptoms that doctors couldn't identify or treat. However, with her mother's unwavering advocacy and self-directed research into dietary solutions, Kate found her path to improved health and confidence. Join her as she explores the power of determination, community support, and limited resources, highlighting the unique impact of conditions like Job’s Syndrome and the personal nature of healing journeys.
For more information about Kate Milligan visit our website at madevisiblestories.com/podcast
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
This podcast aims to change the conversation around invisible illnesses and we need your help! Support our mission by sharing this episode and leaving a review!
Join the conversation and connect with us online!
Website: madvisiblestories.com
Facebook: madevisiblestories
Instagram: @madevisiblestories
LinkedIn: madevisible
Dr. Truong is a pulmonary and critical care trained physician with 12 years of experience as assistant professor at Emory Midtown Hospital. Since August of 2020, he and Dr. Adviteeya Dixit have been running the Emory Post-COVID clinic where they care for patients with lingering symptoms from their COVID infection.
Dr. Truong’s passion for helping people get the care they deserve and recover from post-COVID physical and mental symptoms is undeniably inspiring. To provide a comprehensive understanding of the topic, he further explores the distinctions between long COVID, active COVID, and other medical diagnoses, as well as avenues for seeking both conventional and alternative medical treatments.. Dr. Truong acknowledges the importance of celebrating the fact that we saved more lives than we lost.
For more information about Dr. Alex Truong visit our website at madevisiblestories.com/podcast
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
This podcast aims to change the conversation around invisible illnesses and we need your help! Support our mission by sharing this episode and leaving a review!
Join the conversation and connect with us online!
Website: madvisiblestories.com
Facebook: madevisiblestories
Instagram: @madevisiblestories
LinkedIn: madevisible
Marina Khidekel created Hugimals World, a TIME Best Inventions- winning line of weighted stuffed animals that "hug you back" to ease anxiety and bring calm. Prior to becoming a founder, Marina was a health & wellness journalist. She previously worked at Arianna Huffington’s workplace well-being enterprise SAAS startup Thrive and held senior editorial roles at Women’s Health, Glamour and Cosmopolitan.
She openly discusses the strategies she employed to manage her mental wellness while launching her brand. While starting a business inevitably presents numerous difficulties, the experience ultimately strengthens both the entrepreneur and the business itself.
For more information about Marina Khidekel visit our website at madevisiblestories.com/podcast
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
This podcast aims to change the conversation around invisible illnesses and we need your help! Support our mission by sharing this episode and leaving a review!
Join the conversation and connect with us online:
Website: madvisiblestories.com
Facebook: madevisiblestories
Instagram: @madevisiblestories
LinkedIn: madevisible
Erica Domesek, founder of P.S. - I Made This and ELD Creative discusses mental health struggles, creative inspiration, and the support systems needed to navigate tough times. Erica reflects on her eating disorder in college and her experience with postpartum depression, ADHD and anxiety, emphasizing that recovery and support may look different for everyone. She talks about her journey from the fashion industry to creating her DIY lifestyle brand and appearing on The Today Show, Rachael Ray, The Martha Stewart Show, E! News, and many others to encourage people to get creative with the items in their own home. She also talks about the importance of therapy and medication, finding the right care team and how daily routines can help manage anxiety.
For more information about Erica Domesek visit our website at madevisiblestories.com/podcast
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
This podcast aims to change the conversation around invisible illnesses and we need your help! Support our mission by sharing this episode and leaving a review!
Join the conversation and connect with us online!
Website: madvisiblestories.com
Facebook: madevisiblestories Instagram: @madevisiblestories
LinkedIn: madevisible
Melissa Bernstein, co-founder of Melissa & Doug, discusses her struggles with existential depression and how she uses writing and creating to cope. She also talks about the importance of embracing all emotions, utilizing daily practices for resilience, and creating her latest company, Lifelines, to help people be more present and get more in touch with their senses and emotions.
For more information about Melissa Bernstein and Lifelines, visit our website at madevisiblestories.com/podcast
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
This podcast aims to change the conversation around invisible illnesses, and we need your help! Support our mission by sharing this episode and leaving a review!
Join the conversation and connect with us online!
Website: madvisiblestories.com
Facebook: madevisiblestories
Instagram: @madevisiblestories
LinkedIn: madevisible
A brief reminder about Mental Health Awareness Month and the tribute to my friend, Phil Kohn.
Join the monthly Made Visible Writing Session on May 24th here.
We’re 3+ years into the COVID-19 pandemic and it’s impossible to deny that life still doesn't feel quite the same as pre-pandemic. We’re all saddled with the trauma of a life-threatening illness, the isolation and fear we experienced. In honor of Mental Health Awareness Month, clinical psychologist Dr. Michelle Chung helps us navigate this new world in a healthier way. In this episode, Dr. Chung discusses the many hidden traumas people incurred during the pandemic, including losing relationships, worsened social skills, and of course, the long-term effects of all the stress and emotions. She shares some of the coping strategies she uses with her patients, as well as some great advice for processing trauma and stress in other parts of life.
For more information about Dr. Chung and Psychology In Practice, visit our website at madevisiblestories.com/podcast.
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
This podcast aims to change the conversation around invisible illnesses and we need your help! Support our mission by sharing this episode and leaving a review!
Join the conversation and connect with us online!
Website: madvisiblestories.com
Facebook: madevisiblestories Instagram: @madevisiblestories
LinkedIn: madevisible
Surely we’ve all heard someone say, “Oh, I’m so OCD!” at least once in our lives. But what is it really like to live with this clinical diagnosis? How is everyday life managed, and how often does it affect people and their ability to live an uninterrupted, fulfilled life? Allison Raskin, noted podcaster, writer, and mental health advocate, joins the podcast this week to shed light on these questions and more.Using a combination of content creation and writing, Allison has been able to share her methods and experiences in the hopes of supporting and offering advice to those who are feeling lost or misunderstood as a result of mental illness.
For more information about Allison and her journey, visit our website at madevisiblestories.com/podcast.
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
This podcast aims to change the conversation around invisible illnesses and we need your help! Support our mission by sharing this episode and leaving a review!
Join the conversation and connect with us online!
Website: madvisiblestories.com
Facebook: madevisiblestories Instagram: @madevisiblestories
LinkedIn: madevisible
This episode provides an in-depth look into my life navigating a rare primary immunodeficiency, Hyper IgE Syndrome after ten years of not being diagnosed and almost three decades of hiding my condition. I share all the bumps along the way to launching Made Visible, and the how and why behind the show.
For more information about my journey, what I'm up to next, or to sign up for writing classes, visit our website at madevisiblestories.com/podcast.
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
Support our mission by sharing this episode and leaving a review!
Join the conversation and connect with us online!
Website: madvisiblestories.com
Facebook: madevisiblestories
Instagram: @madevisiblestories
Dating on an app is already hard, no matter what. But have you experienced dating on mainstream apps while also living with a disability, chronic, or invisible illness? Jacqueline Child has been disabled since childhood; after disclosing that information countless times and being ghosted, Jacqueline and her sister Alexa decided it was time to make an app that eliminates the worry of being misunderstood, ghosted, or berated with questions, focusing on a userbase that is inclusive and informed. Dateability is the new app created by the Child sisters that gives people with disabilities a platform to find love online without the worries that come with mainstream dating apps. To those who just want to stop having to explain their medical history over and over to mixed reception, this app is for you.
For more information about Jacqueline and Alexa's venture, visit our website at madevisiblestories.com/podcast.
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
This podcast aims to change the conversation around invisible illnesses, and we need your help!
Support our mission by sharing this episode and leaving a review!
Almost all of us will assume a caregiving role for a close loved one at some point in our lives. When is the correct time to start mentally preparing? Do you think you'd feel comfortable administering treatments that deeply affect your loved one's quality of life? How do these people balance caregiving and their careers? Kate Washington, author of Already Toast: Caregiving and Burnout in America provides insight into the world of caregiving. Kate details her experience as a caregiver to her ill (former) husband, and explains the sheer number of caregivers in the United States; how to introduce systemic policies to benefit these overworked, often struggling people; and to offer advice to those who have already experienced burnout.
For more information about Kate Washington and her experience, visit our website at madevisiblestories.com/podcast
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
This podcast aims to change the conversation around invisible illnesses, and we need your help!
Support our mission by sharing this episode and leaving a review!
Join the conversation and connect with us online!
Website: madvisiblestories.com
Facebook: madevisiblestories
Instagram: @madevisiblestories
LinkedIn: madevisible
Have you ever tried meditation to help manage chronic pain? After realizing that meditation, mindfulness, and compassion practices are transformational in how we relate to what is happening to us, Dr. Christiane Wolf found a passion in teaching it to others. Internationally known as a Mindfulness and Insight Meditation teacher, she explains the connection between chronic pain and mindfulness and how it can help people who are silently struggling. Through her years of education and experience with the mind-body connection, she believes that everyone can benefit from the practice of mindfulness, regardless of their background or current struggles.
For more information about Dr. Christiane Wolf and her journey, visit our website at madevisiblestories.com/podcast
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
Support for this episode comes from Credo. Credo was founded in 2015 in San Francisco. Credo currently operates a robust online business, along with 12 stores across the country. The company’s trailblazing brand standard, The Credo Clean Standard, is actively building a cleaner, more sustainable, more ethical beauty industry. Credo’s owned brand portfolio includes Exa Beauty, Follain and EleVen by Venus Williams SPF. Visit bit.ly/madevisiblecredo to start shopping.
This podcast aims to change the conversation around invisible illnesses, and we need your help!
Support our mission by sharing this episode and leaving a review!
Join the conversation and connect with us online!
Website: madvisiblestories.com
Facebook: madevisiblestories
Instagram: @madevisiblestories
LinkedIn: madevisible
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Podcast Editor & Strategist: @episodeready
In this episode, Dr. Stella Safo, a board-certified HIV primary care physician and the founder of Just Equity For Health, talks about healthcare redesign and equity. She discusses her personal journey into healthcare and how her commitment to social justice led her to found her company. She also dives into the stigma surrounding HIV and chronic illnesses, and the work she's done to advocate for equitable care delivery across all sectors of medicine. Join us as we explore Dr. Safo's journey to becoming a healthcare advocate and her dedication to making healthcare accessible for all.
For more information about Dr. Stella Safo and Just Equity For Health, visit our website at madevisiblestories.com/podcast
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
Support for this episode comes from Credo. Credo was founded in 2015 in San Francisco. Credo currently operates a robust online business, along with 12 stores across the country. The company’s trailblazing brand standard, The Credo Clean Standard, is actively building a cleaner, more sustainable, more ethical beauty industry. Credo’s owned brand portfolio includes Exa Beauty, Follain and EleVen by Venus Williams SPF. Visit bit.ly/madevisiblecredo to start shopping.
This podcast aims to change the conversation around invisible illnesses and we need your help!
Support our mission by sharing this episode and leaving a review!
Join the conversation and connect with us online!
Website: madvisiblestories.com
Facebook: madevisiblestories
Instagram: @madevisiblestories
LinkedIn: madevisible
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Podcast Editor & Strategist: @episodeready
Step into the life of Isaac Zablocki as he shares his personal journey of living with dysgraphia - a neurological condition that affects one’s ability to write. Isaac opens up about how his experience with dysgraphia has helped shape his professional career as the co-founder of ReelAbilities, a groundbreaking film festival that celebrates the talents of people with disabilities and champions for their representation on screen.
For more information about Isaac and ReelAbilities, visit our website at madevisiblestories.com/podcast
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
Join the next Made Visible Writing Class! An 8-week writing class for people living with or affected by invisible illness. Write, share and connect with others in a safe and supportive space. This class will also include guest teachers who will share their experience with writing, sharing and publishing their invisible illness stories. Class begins March 29th. Click here to learn more!
This podcast aims to change the conversation around invisible illnesses and we need your help! Support our mission by sharing this episode and leaving a review!
Join the conversation and connect with us online!
Website: madvisiblestories.com
Facebook: madevisiblestories
Instagram: @madevisiblestories
LinkedIn: madevisible
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Podcast Editor & Strategist: @episodeready
This bonus episode of the Made Visible podcast features the exclusive readings of two powerful essays written by students of the Made Visible Writing Class.
Laura Frégeau's "Seeking Care" takes a humorous tongue-in-cheek approach to the task of finding a caregiver for her future needs, listing specific requirements for the ideal candidate. Lindsay Ellis's "Dis-ease done right" offers a raw and honest reflection on the challenges of living with an invisible illness, from navigating the healthcare system to coping with the emotional toll that comes with it. Both essays provide unique and insightful perspectives that you won’t want to miss!
For more information about Laura and Lindsay’s essays, visit our website at madevisiblestories.com/podcast
Please note: This podcast is intended to provide information and education and is not intended to provide diagnosis, treatment, prevention, cure, or guarantee. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
Join the next Made Visible Writing Class!
An 8-week writing class for people living with or affected by invisible illness. Write, share and connect with others in a safe and supportive space. This class will also include guest teachers who will share their experience with writing, sharing and publishing their invisible illness stories. Class begins March 29th! Click here to learn more!
This podcast aims to change the conversation around invisible illnesses and we need your help! Support our mission by sharing this episode and leaving a review!
Join the conversation and connect with us online!
Website: madvisiblestories.com
Facebook: madevisiblestories
Instagram: @madevisiblestories
LinkedIn: madevisible
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Podcast Editor & Strategist: @episodeready
Before I could learn how to live with my invisible illness, I needed a way to process what I was going through. So I created what I wished had existed for me, the Made Visible Writing Class. A safe place where people living with invisible illnesses could write, share and connect with one another while confronting life’s challenges through writing.
In this episode, four of my students from the Made Visible Writing Class, share their experiences and their reflections on how writing has impacted their lives. Whether grappling with chronic pain or navigating through mental health challenges, each student shares how writing has given them a voice and a community in the midst of their struggles.
For more information from this episode, visit our website at madevisiblestories.com/podcast
Please note: This podcast is intended to provide information and education and is not intended to provide diagnosis, treatment, prevention, cure, or guarantee. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
Join the next Made Visible Writing Class!
An 8-week writing class for people living with or affected by invisible illness. Write, share and connect with others in a safe and supportive space. This class will also include guest teachers who will share their experience with writing, sharing and publishing their invisible illness stories. Class begins March 29th! Click here to learn more!
This podcast aims to change the conversation around invisible illnesses and we need your help! Support our mission by sharing this episode and leaving a review!
Join the conversation and connect with us online!
Website: madvisiblestories.com
Facebook: madevisiblestories
Instagram: @madevisiblestories
LinkedIn: madevisible
–
Podcast Editor & Strategist: @episodeready
Join Serena, Katie, and host, Harper Spero, for a special IG Live event on March 10th at 12:00 PM EST! Follow @madevisiblestories on Instagram to tune in.
Serena Wolf and Katie Dalebout have embraced vulnerability when it comes to living with anxiety. They’re the hosts of Spiraling, dubbed an “optimistic” anxiety podcast, and they talk openly with me about what it means for them to live with anxiety, how they cultivate awareness around their mental health, and what strategies they’ve developed (or are in the process of developing) to manage day-to-day moments with anxiety. This episode features tons of laughs and relatable moments of anxiety real talk.
This episode previously aired on December 3rd, 2019.
For more information about Serena and Katie, visit our website at madevisiblestories.com/podcast
This podcast aims to change the conversation around invisible illnesses and we need your help! Help support our mission by leaving a review and sharing this episode!
Please note: This podcast is intended to provide information and education and is not intended to provide diagnosis, treatment, prevention, cure, or guarantee. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
Join the conversation and connect with us online!
Website: madvisiblestories.com
Facebook: madevisiblepodcast
Instagram: @madevisiblestories
LinkedIn: madevisible
Support for this episode comes from Find Your/self Boxes. Find Your/self Boxes is a queer-owned, mental health focused, self-care box company, created to promote good mental health, because mental health is something we ALL have. Find Your/self Boxes serves as an easy way for people to send love and care to those in their life who may be struggling or who need a little pick me up, by offering customizable and curated self-care boxes, filled with research backed wellness products that promote healing. Use code findyourselfcare for 10% off your order at www.findyourselfboxes.com.
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Podcast Editor & Strategist: @episodeready
Join Lara Bloom and host, Harper Spero, for a special IG Live event on March 1st at 11:00AM EST! Follow @madevisiblestories on Instagram to tune in.
Before being diagnosed with Ehlers-Danlos syndrome at 24 years old, Lara Bloom endured 12 years of undiagnosed pain and mysterious symptoms. According to Lara, who is now the president and CEO of The Ehlers-Danlos Society, this experience isn’t uncommon. On today’s episode, Lara and I talk about why she’s dedicated her career to EDS awareness, why it’s important to her that The Ehlers-Danlos Society is in it for the long haul, and how her life changed when she stopped waiting for a cure for EDS.
This episode previously aired on February 18th, 2020.
For more information about Lara and her journey with Ehlers-Danlos Syndrome, visit our website at madevisiblestories.com/podcast
This podcast aims to change the conversation around invisible illnesses and we need your help! Help support our mission by leaving a review and sharing this episode!
Please note: This podcast is intended to provide information and education and is not intended to provide diagnosis,treatment, prevention, cure, or guarantee. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
Join the conversation and connect with us online!
Website: madvisiblestories.com
Facebook: madevisiblepodcast
Instagram: @madevisiblestories
LinkedIn: madevisible
Support for this episode comes from Find Your/self Boxes. Find Your/self Boxes is a queer-owned, mental health focused, self-care box company, created to promote good mental health, because mental health is something we ALL have. Find Your/self Boxes serves as an easy way for people to send love and care to those in their life who may be struggling or who need a little pick me up, by offering customizable and curated self-care boxes, filled with research backed wellness products that promote healing. Use code findyourselfcare for 10% off your order at www.findyourselfboxes.com.
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Podcast Editor & Strategist: @episodeready
Join Akilah Cadet and host, Harper Spero, for a special IG Live event on February 22nd at 12:30pm EST! Follow @madevisiblestories on Instagram to tune in.
Akilah has been diagnosed with pericarditis, coronary artery spasms, and orthostatic hypotension, but she’s still searching for a reason why she’s experiencing intense and chronic pain on the left side of her body. On today’s episode, we talk about how why she no longer thinks of her health journey as a temporary bump in the road, why she decided to start talking about her health with clients, and how she advocates for herself, despite the bias she encounters as a woman of color, so she can find answers.
This episode previously aired on December 4th, 2018.
For more information about Akilah and her journey with advocating for herself, visit our website at madevisiblestories.com/podcast
This podcast aims to change the conversation around invisible illnesses and we need your help! Help support our mission by leaving a review and sharing this episode!
Please note: This podcast is intended to provide information and education and is not intended to provide diagnosis, treatment, prevention, cure, or guarantee. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
Join the conversation and connect with us online!
Website: madvisiblestories.com
Facebook: madevisiblepodcast
Instagram: @madevisiblestories
LinkedIn: madevisible
Lily CBD’s hemp-based CBD oil offers an alternative way to nurture yourself, and can be especially beneficial for relieving anxiety and inflammation. Because Lily CBD focuses on small, single-farm harvests, more nutrients are able to make their way into each bottle. Think of it like a glass of beautiful natural wine from a small family vineyard. Visit lilycbd.com and use code madevisible at checkout for 15% off.
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Podcast Editor & Strategist: @episodeready
Join Devri Velazquez and host, Harper Spero, for a special IG Live event on February 15th at 11:00am EST! Follow @madevisiblestories on Instagram to tune in.
When Devri Velazquez was diagnosed with Takayasu's arteritis at 20 years old, the prognosis was devastating. Doctors didn’t think she would live to age 21. On today’s episode, we talk about what Devri’s life looks like now, ten years after her diagnosis, and what it was like to hear such a scary prognosis when she was first diagnosed. We also talk about why, today, managing her physical stress and setting boundaries is so important, and how owning her identity is so central to the advocacy work she does.
This episode previously aired on July 28th, 2020.
For more information about Devri and her journey with Takayasu’s Arteritis, visit our website at madevisiblestories.com/podcast
This podcast aims to change the conversation around invisible illnesses and we need your help! Help support our mission by leaving a review and sharing this episode!
Please note: This podcast is intended to provide information and education and is not intended to provide diagnosis, treatment, prevention, cure, or guarantee. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
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Lily CBD’s hemp-based CBD oil offers an alternative way to nurture yourself, and can be especially beneficial for relieving anxiety and inflammation. Because Lily CBD focuses on small, single-farm harvests, more nutrients are able to make their way into each bottle. Think of it like a glass of beautiful natural wine from a small family vineyard. Visit lilycbd.com and use code madevisible at checkout for 15% off.
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Podcast Editor & Strategist: @episodeready
Join Hannah Olson and host, Harper Spero, for a special IG Live event on February 8th at 12:00pm EST! Follow @madevisiblestories on Instagram to tune in.
When employers come to Hannah Olson and ask her why they should hire people who have chronic illness, she has a lot to say. Hannah is the founder is Chronically Capable, a platform that connects people who are chronically ill or disabled with meaningful remote work. On today’s episode, Hannah and I talk about what it was like to balance her first post-grad job with managing Lyme disease, why the year 2020 looms so large, and what makes people with chronic illness so well equipped for the workforce.
This episode previously aired on November 5th, 2019.
For more information about Hannah and hiring people with chronic illness and disability, visit our website at madevisiblestories.com/podcast
This podcast aims to change the conversation around invisible illnesses and we need your help! Help support our mission by leaving a review and sharing this episode!
Join the conversation and connect with us online!
Website: madvisiblestories.com
Facebook: madevisiblepodcast
Instagram: @madevisiblestories
LinkedIn: madevisible
Lily CBD’s hemp-based CBD oil offers an alternative way to nurture yourself, and can be especially beneficial for relieving anxiety and inflammation. Because Lily CBD focuses on small, single-farm harvests, more nutrients are able to make their way into each bottle. Think of it like a glass of beautiful natural wine from a small family vineyard. Visit lilycbd.com and use code madevisible at checkout for 15% off.
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Podcast Editor & Strategist: @episodeready
Join Genevieve Gorder and host, Harper Spero, for a special IG Live event on February 1st at 11:30am EST! Follow @madevisiblestories on Instagram to tune in.
Interior design star Genevieve Gorder wants to live in the light, not in her illness. What does that mean, exactly? For Genevieve, who has both Lyme disease and Hashimoto’s thyroiditis, it means refusing to stake her identity in her health challenges. On today’s episode, Genevieve talks to me about the role that learning plays in her journey with Lyme and Hashimoto’s, how a home can be healing, and how she maintains her sense of positivity and remains mightier than her illness.
This episode previously aired on February 5th, 2019.
For more information about Genevieve Gorder and her journey with Hashimoto’s Thyroiditis and Lyme Disease, visit our website at madevisiblestories.com/podcast
This podcast aims to change the conversation around invisible illnesses and we need your help! Help support our mission by leaving a review and sharing this episode!
Join the conversation and connect with us online!
Website: madvisiblestories.com
Facebook: madevisiblepodcast
Instagram: @madevisiblestories
LinkedIn: madevisible
Support for this episode comes from Find Your/self Boxes. Find Your/self Boxes is a queer-owned, mental health focused, self-care box company, created to promote good mental health, because mental health is something we ALL have. Find Your/self Boxes serves as an easy way for people to send love and care to those in their life who may be struggling or who need a little pick me up, by offering customizable and curated self-care boxes, filled with research backed wellness products that promote healing. Use code findyourselfcare for 10% off your order at www.findyourselfboxes.com.
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Podcast Editor & Strategist: @episodeready
Join Ally Hilfiger and host, Harper Spero for a special IG Live event on January 25th at 2pm EST! (Rescheduled from 12:30pm EST)
Follow @madevisiblestories on Instagram to tune in.
Ally Hilfiger was bitten by a tick at age seven and battled severe physical and neurological symptoms throughout her childhood, but she wasn’t diagnosed with Lyme until after a hospitalization at age 18. On today’s episode, Ally and I talk about why she wrote a book chronicling her experience, the shift that occurred when she chose homeopathic treatments and lifestyle changes over antibiotics, and how harnessing the power of changing her subconscious perspective has helped her heal.
This episode previously aired on March 5th, 2019.
For more information about Ally and her journey with Lyme Disease, visit our website at madevisiblestories.com/podcast
This podcast aims to change the conversation around invisible illnesses and we need your help! Your feedback is invaluable when it comes to bringing awareness to invisible illnesses and helping those who experience them - feel seen and heard. Help support our mission by completing this quick survey and sharing this episode!
Join the conversation and connect with us online!
Website: madvisiblestories.com
Facebook: madevisiblepodcastInstagram: @madevisiblestories
LinkedIn: madevisible
Support for this episode comes from Find Your/self Boxes. Find Your/self Boxes is a queer-owned, mental health focused, self-care box company, created to promote good mental health, because mental health is something we ALL have. Find Your/self Boxes serves as an easy way for people to send love and care to those in their life who may be struggling or who need a little pick me up, by offering customizable and curated self-care boxes, filled with research backed wellness products that promote healing. Use code findyourselfcare for 10% off your order at www.findyourselfboxes.com.
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Podcast Editor & Strategist: @episodeready
Tune in to hear more about the latest happenings with Made Visible.
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In Fall 2020, when I launched the Made Visible Writing Class, the editors at Health Magazine held a contest for my class participants. At the end of class, they selected one essay to publish on their website. Today's episode features the winner of the contest, Rita Maureen Thompson and her essay, “POTS Is an Illness Causing Fatigue, Rapid Heartbeat, and Nausea—Here's What It's Like to Live With It.”
The next Made Visible Writing Class begins on May 4th. Space is limited to keep the group intimate, and a few spots have already filled. To apply and learn more, click here.
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I’m excited to be talking with my dad, Harry Spero, for this final episode of the podcast. We talk about how Job’s syndrome has impacted my life from childhood to the present, how he and my mom have supported me in different ways throughout my life, and his impression of me as a person who is resilient and determined. My dad told me between Episode #30 and #40 that he wanted to interview me on Episode #100, and I’m so thrilled to be able to celebrate 100 episodes with him as my guest.
Learn more about my dad, Harry Spero and check out the show notes here.
Apply for the Made Visible Writing Class here
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Support for this episode comes from Lily CBD. Lily CBD’s hemp-based CBD oil offers an alternative way to nurture yourself, and can be especially beneficial for relieving anxiety and inflammation. Because Lily CBD focuses on small, single-farm harvests, more nutrients are able to make their way into each bottle. Think of it like a glass of beautiful natural wine from a small family vineyard. Click here to try Lily CBD for yourself and use code madevisible at checkout for 15% off your first purchase.
It was only a couple years after Trish Gauthier’s son had been diagnosed with leukemia that she received her own diagnosis: breast cancer. Even though she had just had her physical and everything had looked great, Trish knew that something was off in her body. On today’s episode, Trish talks to me about how she’s advocated for herself and her son through their journeys with illness, her determination to find a community, and her advocacy for equity in the medical system (and how we can all do our part).
Learn more about Trish and check out the show notes here.
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Support for this episode comes from Lily CBD. Lily CBD’s hemp-based CBD oil offers an alternative way to nurture yourself, and can be especially beneficial for relieving anxiety and inflammation. Because Lily CBD focuses on small, single-farm harvests, more nutrients are able to make their way into each bottle. Think of it like a glass of beautiful natural wine from a small family vineyard. Click here to try Lily CBD for yourself and use code madevisible at checkout for 15% off your first purchase.
As founder of #HalftheStory, Larissa "Larz" May is focused on an invisible struggle we’re all facing: our relationship with technology. Larz became aware of her own unhealthy relationship with social media during college, when she was experiencing challenging symptoms of depression and anxiety. On today’s episode, Larz and I talk about her mental health journey, why she’s passionate about digital wellbeing, and her work with #HalftheStory, which aims to empower the next generation’s relationship with technology.
Learn more about Larz and check out the show notes here.
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Support for this episode comes from Lily CBD. Lily CBD’s hemp-based CBD oil offers an alternative way to nurture yourself, and can be especially beneficial for relieving anxiety and inflammation. Because Lily CBD focuses on small, single-farm harvests, more nutrients are able to make their way into each bottle. Think of it like a glass of beautiful natural wine from a small family vineyard. Click here to try Lily CBD for yourself and use code madevisible at checkout for 15% off your first purchase.
Sign up for the Made Visible Writing Class here: https://harperspero.com/madevisiblewritingclass
When Felicia Stingone talks about her brother, who has bipolar disorder, it’s clear how important this relationship is to her. She sees her brother as a person, not as his illness. As she starts to write a book about her experience as a “caring sibling” to her brother, she embraces that her story is both of their stories. On today’s episode, we talk about how Felicia is navigating the writing process, what she means by “caring sibling,” and her advice to people who have loved ones managing menta
Learn more about Felicia and check out the show notes here.
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Read the blog post about my decision to end Made Visible after 100 episodes here.
Support for this episode comes from Betterhelp. Betterhelp is an online counseling service that matches you with a licensed professional therapist. No matter where you are in the world, Betterhelp lets you schedule video and phone sessions with your therapist, or even text them. Plus, they’ll work with you to find a counselor you love. It’s not self help, it’s better help. Take 10% off your first month of Betterhelp by visiting https://betterhelp.com/madevisible
Elizabeth Tikoyan didn’t always share her health story the way she does now. Diagnosed with Lyme disease in high school, she was very aware of the stigma around having a health condition. On today’s episode, Elizabeth tells me about her journey to get diagnosed, and how misdiagnosis after misdiagnosis led to her symptoms reaching a chronic stage. We talk about how she navigated college, why she founded Riley App (a patient networking app) and her decision to start putting her story out in the world.
Learn more about Elizabeth and check out the show notes here.
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Support for this episode comes from Betterhelp. Betterhelp is an online counseling service that matches you with a licensed professional therapist. No matter where you are in the world, Betterhelp lets you schedule video and phone sessions with your therapist, or even text them. Plus, they’ll work with you to find a counselor you love. It’s not self help, it’s better help. Take 10% off your first month of Betterhelp by visiting https://betterhelp.com/madevisible
For creative arts therapist Stephanie Omens, it’s all about storytelling--even in the most challenging of circumstances. She works with children who have illnesses or who have parents or siblings who are ill, and it’s her job to help them understand what they’re experiencing. On today’s episode, Stephanie talks about why white lies don’t serve kids and why truth telling empowers them, how she uses story and play in her practice, and how she’s helping kids and parents understand life during the pandemic.
Learn more about Stephanie and check out the show notes here.
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Support for this episode comes from Betterhelp. Betterhelp is an online counseling service that matches you with a licensed professional therapist. No matter where you are in the world, Betterhelp lets you schedule video and phone sessions with your therapist, or even text them. Plus, they’ll work with you to find a counselor you love. It’s not self help, it’s better help. Take 10% off your first month of Betterhelp by visiting https://betterhelp.com/madevisible
When she was 15, Tricia Huffman made a big decision--she wanted to move through life in a different way. On today’s episode, Tricia and I talk about this choice, which was wrapped up in the emotional and physical pain of her then-undiagnosed invisible illness. We also discuss her eventual diagnosis of fibromyalgia, and how she managed her condition while working as a touring sound engineer. Finally, we talk about why “should” isn’t in her vocab, and why she wants to remind us to claim our joy.
Learn more about Tricia and check out the show notes here.
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Support for this episode comes from Betterhelp. Betterhelp is an online counseling service that matches you with a licensed professional therapist. No matter where you are in the world, Betterhelp lets you schedule video and phone sessions with your therapist, or even text them. Plus, they’ll work with you to find a counselor you love. It’s not self help, it’s better help. Take 10% off your first month of Betterhelp by visiting https://betterhelp.com/madevisible
Since Pamela Hunter’s daughter Ransom was diagnosed with sensory processing disorder at age two-and-a-half, Pamela has done everything she can to get her daughter the help she needs. On today’s episode, we talk about what it means to be a parent to a child with this condition. We also talk about how difficult moments have given Pamela the conviction to stick with her gut, and how Ransom’s story also led Pamela to found Sheltered.Co --a company selling handwoven weighted blankets made from deadstock.
Learn more about Pamela and check out the show notes here.
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Support for this episode comes from Betterhelp. Betterhelp is an online counseling service that matches you with a licensed professional therapist. No matter where you are in the world, Betterhelp lets you schedule video and phone sessions with your therapist, or even text them. Plus, they’ll work with you to find a counselor you love. It’s not self help, it’s better help. Take 10% off your first month of Betterhelp by visiting https://betterhelp.com/madevisible
Fans know Este Haim for her ability to hold a killer baseline as part of HAIM, a band she formed with her two sisters, Danielle and Alana. Less well-known is the fact that Este was diagnosed with Type 1 diabetes in high school. On today’s episode, Este talks about how having a supportive family has meant that diabetes and music can always coexist in her life. We also talk about how Este manages her physical and mental health (especially while touring), and HAIM’s latest album, Women In Music Pt. III.
Learn more about Este and check out the show notes here.
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Support for this episode comes from Lily CBD. Lily CBD’s hemp-based CBD oil offers an alternative way to nurture yourself, and can be especially beneficial for relieving anxiety and inflammation. Because Lily CBD focuses on small, single-farm harvests, more nutrients are able to make their way into each bottle. Think of it like a glass of beautiful natural wine from a small family vineyard. Click here to try Lily CBD for yourself and use code madevisible at checkout for 15% off your first purchase.
Jen Pastiloff has built her identity and career around connecting with people. She also has profound hearing loss and tinnitus and is deaf without her hearing aids. As a result, she’s had to cultivate other ways of understanding and hearing. On today’s episode, Jen and I talk about the specific challenges that come with tinnitus and hearing loss, the assumptions people make if they don’t know that she’s hard of hearing, and how a sense of courageousness helped her carve out a space to truly be herself.
This episode previously aired on October 23, 2018.
Learn more about Jen and check out the show notes here.
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After Sonali Gupta was diagnosed with limb-girdle muscular dystrophy in 2008, she went on a trip to India with her dad to explore options for healing. As an NYU grad, Sonali had been eyeing a career in the music industry, but she found a health journey in India instead. She now lives in Mumbai, and is writing a memoir about this experience. On today’s episode, Sonali and I talk about what that trip with her dad was like, how being aware of her needs gives her independence, and her identity as a writer.
Learn more about Sonali and check out the show notes here.
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We want to learn more about you! Tell us about you and what got you listening to Made Visible here.
Support for this episode comes from Lily CBD. Lily CBD’s hemp-based CBD oil offers an alternative way to nurture yourself, and can be especially beneficial for relieving anxiety and inflammation. Because Lily CBD focuses on small, single-farm harvests, more nutrients are able to make their way into each bottle. Think of it like a glass of beautiful natural wine from a small family vineyard. Click here to try Lily CBD for yourself and use code madevisible for 15% off your first purchase.
Mira Mariah thinks tattoos are rock 'n' roll, and so are disabled people. As she says, disabled people have to be really “innovative and creative”--and what’s more rock 'n' roll than that? Though Mira didn’t always associate with the word “disabled,” that sense of herself shifted once she had amputation surgery and got a prosthetic leg. On today’s episode, I talk with Mira about fashion’s role in her life, the invisible challenges that amputees face, her career as a tattoo artist, and leaning in to joy.
Learn more about Mira Mariah and check out the show notes here.
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Support for this episode comes from Lily CBD. Lily CBD’s hemp-based CBD oil offers an alternative way to nurture yourself, and can be especially beneficial for relieving anxiety and inflammation. Because Lily CBD focuses on small, single-farm harvests, more nutrients are able to make their way into each bottle. Think of it like a glass of beautiful natural wine from a small family vineyard. Click here to try Lily CBD for yourself and use code madevisible for 15% off your first purchase.
For Quentin Vennie, despite having been diagnosed with acute anxiety and depression at 14, this wasn’t the focus as he grew up. The focus was on surviving, given that he lived in one of the most dangerous cities in America, had to contend with racism and prejudice, and lived in communities with limited resources. On today’s episode, I talk with Quentin about his decision to fight to live, why gardening is his “secret weapon” for his mental health, and how vulnerability helps remind him of his purpose.
Learn more about Quentin and check out the show notes here.
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Support for this episode comes from Betterhelp. Betterhelp is an online counseling service that matches you with a licensed professional therapist. No matter where you are in the world, Betterhelp lets you schedule video and phone sessions with your therapist, or even text them. Plus, they’ll work with you to find a counselor you love. It’s not self help, it’s better help. Take 10% off your first month of Betterhelp by visiting https://betterhelp.com/madevisible
When Devri Velazquez was diagnosed with Takayasu's arteritis at 20 years old, the prognosis was devastating. Doctors didn’t think she would live to age 21. On today’s episode, we talk about what Devri’s life looks like now, ten years after her diagnosis, and what it was like to hear such a scary prognosis when she was first diagnosed. We also talk about why, today, managing her physical stress and setting boundaries is so important, and how owning her identity is so central to the advocacy work she does.
Learn more about Devri and check out the show notes here.
Follow Made Visible on Instagram.
We want to learn more about you! Tell us about you and what got you listening to Made Visible here.
Support for this episode comes from Betterhelp. Betterhelp is an online counseling service that matches you with a licensed professional therapist. No matter where you are in the world, Betterhelp lets you schedule video and phone sessions with your therapist, or even text them. Plus, they’ll work with you to find a counselor you love. It’s not self help, it’s better help. Take 10% off your first month of Betterhelp by visiting https://betterhelp.com/madevisible
Nikki Boyer put it best, when talking about her relationship with her best friend Molly: “We’re going to say the things that people don’t say.” On today’s episode, Nikki and I talk about “Dying for Sex,” the podcast she and Molly created to tell Molly’s story of navigating terminal cancer while also embracing sexual adventures. We also dig into the complicated and layered nature of caregiving, and talk about the profound ripple effect of Molly’s story and how it has helped Nikki keep Molly close.
Learn more about Nikki and check out the show notes here.
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Support for this episode comes from Betterhelp. Betterhelp is an online counseling service that matches you with a licensed professional therapist. No matter where you are in the world, Betterhelp lets you schedule video and phone sessions with your therapist, or even text them. Plus, they’ll work with you to find a counselor you love. It’s not self help, it’s better help. Take 10% off your first month of Betterhelp by visiting https://betterhelp.com/madevisible
Jenn Donohue and her husband’s twins were born at 24 weeks, making them four months premature. On today’s episode, Jenn and I talk about how she and her husband navigated the “start and stop” feeling as they navigated their son’s health while also coping with the loss of their daughter, who passed away at one week old. We also talk about what the role of caregiving means to Jenn, and how she and her husband support their teenage son and the invisible challenges he faces due to complications from birth.
Learn more about Jenn and check out the show notes here.
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Support for this episode comes from Betterhelp. Betterhelp is an online counseling service that matches you with a licensed professional therapist. No matter where you are in the world, Betterhelp lets you schedule video and phone sessions with your therapist, or even text them. Plus, they’ll work with you to find a counselor you love. It’s not self help, it’s better help. Take 10% off your first month of Betterhelp by visiting https://betterhelp.com/madevisible
Dr. Alexandra Freeman is an infectious diseases physician at the National Institutes of Health, and as she explains, there are still a lot of unanswered questions about COVID-19. Dr. Freeman first spoke on Episode #24, and I wanted to have her back to talk about what the pandemic has been like for her and her patients, who are people with primary immunodeficiencies (like me). On today’s episode, we talk about the “new normal,” antibody testing, and possibilities for vaccine distribution.
Learn more about Dr. Freeman and check out the show notes here. Check out her original episode here.
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Support for this episode comes from Betterhelp. Betterhelp is an online counseling service that matches you with a licensed professional therapist. No matter where you are in the world, Betterhelp lets you schedule video and phone sessions with your therapist, or even text them. Plus, they’ll work with you to find a counselor you love. It’s not self help, it’s better help. Take 10% off your first month of Betterhelp by visiting https://betterhelp.com/madevisible.
Sarah Ramey has a term for people like her. She calls herself a WOMI, or a “woman with a mysterious illness.” On today’s episode, Sarah tells me about the events that set her life as a WOMI in motion, and what it was like to be told over and over that her problems were psychosomatic. We also discuss her recently published book, The Lady’s Handbook for Her Mysterious Illness, and how she hopes it will change the experience for other patients with mysterious illnesses as they seek answers.
Learn more about Sarah and check out the show notes here.
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Alisa Vitti wrote the book on women’s hormonal health--literally. WomanCode, her first book, was published in 2013, and it provides the education many women never knew they needed. A women’s hormone and functional nutrition expert, Alisa is the founder of FLOLiving.com. On today’s episode, we talk about her new book, how she developed the basis for the FLO Protocol through her experience with PCOS, and why she doesn’t buy into the narrative that women should accept pain and suffer in silence.
Learn more about Alisa and check out the show notes here.
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John Boyle was diagnosed with X-linked agammaglobulinemia (XLA) in 1978, when he was just six months old. On today’s episode, John and I talk about the routine management of his condition that allows him to live with minimal symptoms, and how taking care of his health was instilled in him at an early age. We also talk about his work with the Immune Deficiency Foundation, and why, after years of being attuned to his physical health, he realized it was time to give some attention to his mental health, too.
Learn more about John and check out the show notes here.
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As a clinical psychologist at the National Institute of Mental Health, Dr. Krystal Lewis is interested in how to make therapy, specifically cognitive behavioral therapy (CBT), more effective for children and adolescents.On today’s episode, Krystal and I talk about what led to her interest in psychology, and how CBT can treat anxiety and increase resilience. Then, we shift to the COVID-19 pandemic: how it’s affecting people on an emotional level and how principles from CBT can help us during this time.
Learn more about Krystal and check out the show notes here.
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Right now, ban.do founder and CCO Jen Gotch was supposed to be on tour for her first book, “The Upside of Being Down.” But because of the coronavirus pandemic, the tour was cancelled. While she did feel sadness about that, as Jen says, her knee-jerk reaction when most things happen is, “this is going to be okay.” On today’s episode, Jen and I talk about the meaning of that phrase and the power of optimism, why she doesn’t feel the stigma of mental illness, and how she’s choosing to get the news these days.
Learn more about Jen and check out the show notes here.
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Like others with compromised immune systems, Jodi Taub’s life is at risk due to COVID-19. Jodi was diagnosed with primary immunodeficiency around 14 years ago, and she manages about 22 different health conditions as a result. On today’s episode, Jodi and I talk about recognizing that she felt unsafe in NYC, and what her new normal looks like. We also talk about how, as a psychotherapist, she’s helping clients with chronic illness navigate the emotional shifts and trauma that this pandemic has created.
Learn more about Jodi and check out the show notes here.
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The coronavirus pandemic has changed life as we know it. This crisis is a scary time for all of us, and it presents unique challenges for the invisible illness community. For this episode of Made Visible, we reached out to past podcast guests to hear how coronavirus is impacting their lives. As we face an era of physical distancing and isolation, we believe it’s more important than ever to connect with our community and hear their stories. We want to hear yours, too: https://www.speakpipe.com/MadeVisible.
The coronavirus pandemic has changed life as we know it. This crisis is a scary time for all of us, and it presents unique challenges for the invisible illness community. For this episode of Made Visible, we reached out to past podcast guests to hear how coronavirus is impacting their lives. As we face an era of physical distancing and isolation, we believe it’s more important than ever to connect with our community and hear their stories. We want to hear yours, too: https://www.speakpipe.com/MadeVisible.
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On today’s episode, we’re covering the recent coronavirus outbreak and the impact that global health challenges can have on people with invisible and chronic illnesses. To get expert perspectives, I spoke with Hernando Garzon, MD, an emergency medicine physician with experience in disaster response and global health; Andrew Kessler, founder of Scough, a company that makes scarves and bandanas that function as masks; and John Boyle, president and CEO of the Immune Deficiency Foundation.
Learn more about Hernando, Andrew and John and check out the show notes here.
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As an officer in the Marine Corps, Zach Iscol was mentored by people who emphasized the importance of taking care of your people...and that lesson came home with him. After his service ended, he saw the heavy toll of PTSD and other military-related trauma on veterans. In particular, the suicide rate among veterans drove him to action. On today’s episode, Zach and I talk about how the Headstrong Project removes barriers for veterans seeking care, and the impact it’s had for over 1,500 veterans in 7 years.
Learn more about Zach and check out the show notes here.
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When Aliza Licht was diagnosed with breast cancer in 2015, she didn’t tell anyone but close family. That changed in 2019, when she agreed to share her story in a TV segment for abc7NY. Only today’s episode, Aliza and I talk about why, after keeping her story to herself for so long, she decided she wanted people to know the facts of her diagnosis. We also chat about how life has changed for her since cancer happened, and why she thinks everyone has a responsibility to take the initiative in their health.
Learn more about Aliza and check out the show notes here.
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Before being diagnosed with Ehlers-Danlos syndrome at 24 years old, Lara Bloom endured 12 years of undiagnosed pain and mysterious symptoms. According to Lara, who is now the president and CEO of The Ehlers-Danlos Society, this experience isn’t uncommon. On today’s episode, Lara and I talk about why she’s dedicated her career to EDS awareness, why it’s important to her that The Ehlers-Danlos Society is in it for the long haul, and how her life changed when she stopped waiting for a cure for EDS.
Learn more about Lara and check out the show notes here.
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When Shannon Shores was diagnosed with a strain of HPV that can cause cervical cancer, it was an emotional and scary experience. But at the same time, it helped cement her new career path, validating her decision to build a product that would offer discreet and fast STD testing to people all over the country. On today’s episode, we talk about how education and empowerment factor into the mission of samedaystdtesting.com, and why shame and judgement don’t belong in conversations around sexual health.
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Dr. Shari Auth has been a healer for over 20 years. Now, as co-founder of WTHN, she’s helped thousands of people experience their first acupuncture treatment. On today’s episode, we discuss why many people no longer see holistic medicine as a last resort, but instead view it as a first stop. We also talk about how WTHN makes acupuncture, herbs, and cupping accessible for a larger audience, the symptoms people seek to alleviate through acupuncture, and why regular wellness treatments are key.
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YouTubers Simon and Martina Stawski share many aspects of their lives with their audience, including how they approach Martina’s diagnosis of Ehlers-Danlos syndrome (EDS). On today’s episode, I talk with Simon and Martina about how honest conversation plays a huge role in their team effort to manage EDS. We also talk about the ups and downs of managing a chronic illness, what they choose to share with their fans, and why the term “caregiver” doesn’t feel like the right way to describe Simon’s role.
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As deputy editor at Health.com, Esther Crain has developed features that reflect the hidden health experiences of people today. Focusing on women who have been misdiagnosed or diagnosed with invisible illnesses, she looks for stories that are relatable and help shine a light on different conditions and experiences with healthcare. On today’s episode, we talk about what led to her interest in health publishing, the power of personal narrative, and how the humanity in stories can make them hit home.
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For the first few months after she was diagnosed with multiple sclerosis, Jessie Ace felt like her life was over. But, as she learned how to advocate for herself as a patient and reframe her mindset, her experience changed. On today’s episode, Jessie and I talk about what it was like to be diagnosed at age 22 and how she felt when she was suddenly labeled as having a disability. We also chat about her work as an illustrator, writer, and podcast host, and why she champions the term “enabled” vs. disabled.
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Lara Parker deals with vagina problems (which is also the title of her book, coming in 2020). On today’s episode, Lara I talk about why she started being upfront and open about how endometriosis and other conditions have affected her life, and why she feels a responsibility to tell her story. Whether she’s talking about dating with penetrative sex off the table or giving advice to people who are navigating endometriosis, Lara talks candidly about her experience...because as she puts it, why wouldn’t she?
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At age 26, Mickey Trescott had been diagnosed with both Hashimoto’s thyroiditis and celiac disease. With her symptoms becoming increasingly unmanageable, she decided to take her health into her own hands. On today’s episode, Mickey and I talk about her drive to learn about the impact of diet on autoimmune conditions, the role that experimenting with diet has played in her health, and why educating people about the Autoimmune Protocol--which she calls a template, not a diet--is so important to her.
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Molly O’Malley Pitman’s son was diagnosed with autism before he was two years old. For Molly and her husband, the diagnosis was devastating, but it also gave her something to fight for. On today’s episode, Molly and I talk about how losing many family members to Huntington’s disease has influenced her life’s purpose, and how she aims to honor her family. We also talk about how her son’s life is impacted by his diagnosis, and her decision to start an activity center and preschool for kids of all abilities.
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Katie Dalebout and Serena Wolf have embraced vulnerability when it comes to living with anxiety. They’re the hosts of Spiraling, dubbed an “optimistic” anxiety podcast, and they talk openly with me about what it means for them to live with anxiety, how they cultivate awareness around their mental health, and what strategies they’ve developed (or are in the process of developing) to manage day-to-day moments with anxiety. This episode features tons of laughs and relatable moments of anxiety real talk.
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For Elana Safar, navigating the world isn’t always simple. That’s because she has multiple chemical sensitivity (MCS), a condition where the body reacts to chemicals often found in perfumes, deodorants, cleaning solutions, and beyond. On today’s episode, Elana and I talk about the physical symptoms of MCS and how the condition impacts her day-to-day life. We also discuss why it’s uniquely hard to ask people to stop using perfumes, and her hope that, one day, fragrance-free spaces will be the norm.
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Amy Lacey created a cauliflower crust in her kitchen after deciding she would need to make nutrition changes to manage her lupus diagnosis. On today’s episode, Amy and I talk about the physical and emotional challenges that her health presented, and how inventing a tasty, healthy pizza crust that she and her family could enjoy helped restore “normalcy” in her life. We also talk about the path to starting her business, Cali'flour Foods, and what’s next now that the company has seen such successful growth.
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Developed at Columbia University in 2000, narrative medicine isn’t quite like any other discipline out there. On today’s episode, I talk with Catherine Rogers and Ben Samuel, who both teach writing in the Program in Narrative Medicine at Columbia. We discuss what students learn in narrative medicine creative writing classes, how an education in narrative medicine can translate to medical settings, and how the program, with its students from many different backgrounds, is like a one-room schoolhouse.
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When employers come to Hannah Olson and ask her why they should hire people who have chronic illness, she has a lot to say. Hannah is the founder is Chronically Capable, a platform that connects people who are chronically ill or disabled with meaningful remote work. On today’s episode, Hannah and I talk about what it was like to balance her first post-grad job with managing Lyme disease, why the year 2020 looms so large, and what makes people with chronic illness so well equipped for the workforce.
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“Unremarkable.” That’s the word doctors have used to describe Beth Schrock’s test results, and it signals that her tests are coming back normal. For Beth, who has been living with nerve pain and mobility issues since 2017, this means she still doesn’t have a diagnosis for her symptoms. On today’s episode, Beth and I talk about how she’s learned to deal with pain so that it doesn’t control her life, and how she’s using her talents as an art director and photographer to make invisible illness visible.
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In 2007, Menna Olvera was introduced to Urban Zen Integrative Therapy, a healing modality founded by Donna Karan after her husband passed away. Now, as a UZIT practitioner, Menna supports patients and clients through five different healing modalities. On today’s episode, Menna and I talk about her journey to become a UZIT practitioner, and what patients and clients can gain from integrating UZIT practices. We also talk about the importance of self care, and why it’s not selfish to be kind to yourself.
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As Jaime Walden explains, navigating Crohn’s disease is a little different than navigating other illnesses. Long story short: you might spend a lot of time being trapped in the bathroom. On today’s episode, we talk about Jaime’s long journey to a diagnosis, how she manages the often painful symptoms of a Crohn’s flare, the emotional component of this invisible illness. This episode is the first time that Jaime is sharing a deep glimpse into her health, and she does so with incredible honesty and humor.
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Corinne Gray was diagnosed with depression during university, but for most of her 20s, she didn’t deal with her diagnosis head on. On today’s episode, Corinne and I talk about her decision to start managing her symptoms, and what living with depression has been like for her (including her experience as a caregiver for her husband, who has leukemia). We also talk about neurodiversity and inclusion, and the central role of these concepts in URevolution, a digital magazine she started with her husband.
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For Erica Matluck, part of her job as a naturopathic doctor is to be a teacher. By providing education to her patients, she aims to make them feel empowered about their health. On today’s episode, Erica and I talk about what drove her to explore naturopathic medicine, and why she looks at the big picture of physical, mental, spiritual, and emotional health. We also chat about the philosophies of naturopathic medicine, and her belief in the connection between our minds, belief systems, and ability to heal.
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When Ashley Weiss was diagnosed with postural orthostatic tachycardia syndrome, or POTS, it changed everything in her life. On today’s episode, Ashley and I talk about the realities of living with POTS, the difficult diagnostic testing she went through, and the decision to postpone her wedding. We also talk about adjusting to life with chronic illness (including grieving for her old self), how chronic illness has opened her up to new opportunities, and why her mantra is to take things one day at a time.
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Adrienne Nolan-Smith isn’t interested in healthcare approaches that slap a band-aid on the problem. For her, it’s about getting to the root cause. On today’s episode, Adrienne and I talk about her diagnosis with Lyme disease at age 9, and how her mom’s pursuit to find her treatment options led to some unconventional scenarios, but also helped her find remission. We also talk about the importance of root cause medicine, and how patients have to advocate for themselves in today’s healthcare system.
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Growing up, Russell Markus didn’t understand his mom’s chronic pain, but severe knee pain as an adult made him realize the reality of what she had been dealing with for decades. On today’s episode, Russell and I talk about his shift in awareness about his mom’s experience, and how he chose to start Lily CBD before CBD was the trend it is today. We also talk about the complexities of the cannabis world, the impact of pharmaceuticals, and what people should know if they’re new to CBD but ready to explore.
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After undergoing a preventative double mastectomy in 2014, Erika Stallings told a therapist that she felt her life now had to have a lot of meaning. After all, she had just done this radical thing to save her own life. On today’s episode, Erika and I talk about why she didn’t immediately pursue BRCA testing after learning her mom has a mutation, the racial disparities in genetic testing that impact Black women, and how she navigated surgery and recovery with the help of some great friends and doctors.
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About five years ago, Martel Catalano realized she couldn’t ignore her chronic condition (retinitis pigmentosa) any longer. On today’s episode, Martel and I talk about why she decided to lean into her diagnosis and address her stress about her condition, and how she hopes Beyond My Battle will help other people with illnesses and disabilities do the same. We also talk about what it’s like to live with a visual impairment that’s invisible to others, and how she handles moments of misunderstanding.
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Interior design star Genevieve Gorder wants to live in the light, not in her illness. What does that mean, exactly? For Genevieve, who has both Lyme disease and Hashimoto’s thyroiditis, it means refusing to stake her identity in her health challenges. On today’s episode, Genevieve talks to me about the role that learning plays in her journey with Lyme and Hashimoto’s, how a home can be healing, and how she maintains her sense of positivity and remains mightier than her illness.
This episode previously aired on February 5, 2019.
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When Rachel Trobman was diagnosed with non-specific connective tissue disease, the rheumatologist who diagnosed her showed her that healthcare could go beyond personalized: it could be humanized. Today, that principle plays out on Ouchie, an app for pain management created by Upside Health, the company she co-founded. On today’s episode, Rachel and I talk about treating the symptoms versus the disease, and how Ouchie supports people so that they can live their lives while managing their pain.
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When Madelaine DeRose was very young, her mom realized that she saw things differently than other kids, and Madelaine was ultimately diagnosed with dyslexia. On today’s episode, Madelaine and I discuss how people with dyslexia experience the world, and how being bilingual impacts her dyslexia. We also chat about the link between creativity and dyslexia, how she manages dyslexia in her professional life, and why she wants to correct misperceptions and raise awareness about the reality of the disorder.
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When talking about her experience with eczema, Sarah Harris is not just thoughtful; she’s also laugh-out-loud funny. For instance, she calls her experience with eczema herpeticum “the best clickbait ever,” but also acknowledges that it was shocking to be told that her eczema had re-manifested as a dermatological emergency. On today’s episode, Sarah and I talk about what it’s like to have a condition that’s both visible and invisible, and why she wants to keep complicating the conversation around skin.
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In 2017, after four years of misdiagnoses by 30 practitioners, Evan Golub was finally diagnosed with Lyme disease. Since then, he’s dedicated his life to educating himself on Lyme while supporting others who are also managing the condition. On today’s episode, Evan and I discuss why he gravitates towards functional medicine and is always up for exploring the latest in natural treatments. We also chat about why he founded Wana, a new digital health platform for people with chronic and invisible illnesses.
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Living in Israel, Allie Kashkash faces unique challenges when it comes to managing her son’s allergies. Not only is the most popular snack in Israel made of peanuts, she also discovered a lack of allergy resources in Hebrew. On today’s episode, Allie and I talk about the difference between how Americans and Israelis view allergies, how she protects her son while ensuring he can still experience many childhood activities, and why she started a business to provide resources and gear for allergy families.
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Christopher Hooton was diagnosed with depression almost a decade ago, and he’s discovered that his symptoms are somewhat treatment-resistant. He’s had to find other ways to manage his mental health, and creativity plays a big role in that. On today’s episode, Christopher and I talk about why he recently transitioned from arts critic to arts creator, and how the evocative nature of The National’s music, which is the subject of his podcast, provides a jumping-off point to talk about mental health.
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Listener Favorite
Gunnar Esiason believes cystic fibrosis drug development is in its golden age, and that’s good news for people like him. Gunnar was diagnosed with cystic fibrosis (CF) at age two, and since then, he’s relied on an intensive treatment regimen to manage his symptoms. On today’s episode, Gunnar and I talk about why he feels a sense of promise around CF research, how he copes with his condition using humor and transparency, and his two jobs, both of which he loves: CF advocacy and coaching ice hockey.
Learn more about Gunnar and check out the show notes here.
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When Sophia Saad was younger, learning wasn’t especially fun for her. Years later, as a teacher and art therapist, Sophia had the chance to provide students with learning opportunities that she didn’t have. Working with special education students, Sophia found her calling in the classroom. On today’s episode, we talk about her experience as a teacher and her transition to a private art therapy practice, the role art plays in her own life, and why her practice is ultimately about process, and not a finished work of art.
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Being diagnosed with type 1 diabetes at age nine didn’t stop Amanda Goldberg from pursuing a competitive tennis career. Due to sports injuries, however, Amanda ultimately left tennis and joined the family business, Goldberg’s Famous Bagels. On today’s episode, Amanda and I talk about how tennis helped her develop the ability to really listen to her body, the value of having doctors that you trust, and how she juggles her health with her growing responsibilities at a family business she loves.
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Yali Szulanski has navigated eating disorders, anxiety, depression, self harm, and trauma. Around ten years ago, she realized that if she didn’t seek recovery, she would continue to lose relationships in her life. On today’s episode, Yali and I talk about the role her husband has played in her recovery (and how she tried to convince him not to date her), the importance of learning compassion for herself, and how she practices awareness and cares for her body now that she’s a mom to two kids.
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When journalist Susannah Meadows learned that her three-year-old son, Shepherd, had juvenile idiopathic arthritis, she was told there was no cure. Shepherd started medication, but not only was it ineffective, it made him feel sick. On today’s episode, Susannah and I talk about how experimentally changing Shepherd’s diet helped him completely recover, why she felt compelled to write a book that dug into the science behind his recovery (and beyond), and her belief in the power of medical success stories.
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At age 29, CC Webster Marrone was an advertising executive specializing in pharmaceutical healthcare advertising. When she got her “cancer call” from the doctor who had performed her biopsy, she almost didn’t pick it up because she was in an important meeting. Now, as a Hodgkin's lymphoma survivor who is in remission, CC’s parameters for success have dramatically changed. On today’s episode, CC and I talk about why remission has been the hardest part of cancer and what her life and career look like today.
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Emily Fletcher found out she was having a miscarriage on her way to teach a meditation retreat. Or so she thought. As it turned out, when she had an ultrasound, the baby had a heartbeat. But at the three-month mark, she was told--again--that she had miscarried. This time, it was true. On today’s episode, Emily and I share a lot of laughs as we talk about how she broke the news of her second pregnancy to her husband with an inside joke, giving birth to her son, and why she’s open about her story.
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Author Bob Martin writes books for children that bring more understanding to the chronic diseases and disorders that kids face. Bob lost a granddaughter to a highly terminal brain tumor and has a grandson who manages ADHD, so he writes from the heart on these issues. On today’s episode, Bob and I talk about his lifelong dedication to advocating for children, the unique role that grandparents can play, and how his grandson’s experience has helped him make sense of challenges from his own childhood.
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Emily Fletcher found out she was having a miscarriage on her way to teach a meditation retreat. Or so she thought. As it turned out, when she had an ultrasound, the baby had a heartbeat. But at the three-month mark, she was told--again--that she had miscarried. This time, it was true. On today’s episode, Emily and I share a lot of laughs as we talk about how she broke the news of her second pregnancy to her husband with an inside joke, giving birth to her son, and why she’s open about her story.
Learn more about Emily and check out the show notes here.
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Author Bob Martin writes books for children that bring more understanding to the chronic diseases and disorders that kids face. Bob lost a granddaughter to a highly terminal brain tumor and has a grandson who manages ADHD, so he writes from the heart on these issues. On today’s episode, Bob and I talk about his lifelong dedication to advocating for children, the unique role that grandparents can play, and how his grandson’s experience has helped him make sense of challenges from his own childhood.
Learn more about Bob and check out the show notes here.
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Ally Hilfiger was bitten by a tick at age seven and battled severe physical and neurological symptoms throughout her childhood, but she wasn’t diagnosed with Lyme until after a hospitalization at age 18. On today’s episode, Ally and I talk about why she wrote a book chronicling her experience, the shift that occurred when she chose homeopathic treatments and lifestyle changes over antibiotics, and how harnessing the power of changing her subconscious perspective has helped her heal.
Learn more about Ally and check out the show notes here.
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For most of her life, Melissa Marans didn’t have an invisible illness. That all changed in 2015, when she began showing signs of rapidly worsening muscle weakness and fatigue. She went to see her doctor, and in a week, had a diagnosis: a rare autoimmune disease called dermatomyositis. On today’s episode, Melissa and I talk about the challenges she has faced, why she went silent on social media for a period of time, and how she prioritizes her own ongoing health needs while also being a mom to her newborn.
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Before discovering bee products, Carly Stein was the person who was always sick. That all changed when she discovered magical natural products like propolis, royal jelly, bee pollen, and honey. On today’s episode, Carly and I talk about what led her to found Beekeeper’s Naturals, why education about bees is such an important part of her company’s mission, and how her own health has improved since she began integrating bee products into her everyday routine.
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About ten years ago, Letty Cottin Pogrebin (a founding editor of Ms. Magazine) was sitting in the waiting room at Memorial Sloan Kettering when she had the idea for a book. On today’s episode, Letty and I talk about her experience with breast cancer, and why it inspired her to write How to Be a Friend to a Friend Who’s Sick. We talk about the difficulty of finding the right words when you learn someone is sick, her tips for giving gifts, and why honesty should be the core of your efforts to be supportive.
Learn more about Letty and check out the show notes here.
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Interior design star Genevieve Gorder wants to live in the light, not in her illness. What does that mean, exactly? For Genevieve, who has both Lyme disease and Hashimoto’s thyroiditis, it means refusing to stake her identity in her health challenges. On today’s episode, Genevieve talks to me about the role that learning plays in her journey with Lyme and Hashimoto’s, how a home can be healing, and how she maintains her sense of positivity and remains mightier than her illness.
Learn more about Genevieve and check out the show notes here.
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Monique Gore-Massy is a lupus survivor living purposefully. At the beginning of her journey, her debilitating symptoms diminished her sense of hope, tested her faith, and challenged her identity. On today’s episode, Monique and I talk the incredible support system that helped lift her out of the darkest period of her condition, her advice for navigating relationships and chronic illness, and why--especially as a woman of color--she feels driven to use her voice to advocate for others with lupus.
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This week, I’m so thrilled to present a very special guest: my mom, Norine Spero, who has been a caregiver for me since I was born. My mom and I are very close, so I found it really incredible that there were parts of her story--and my story--that I had never heard before. On this episode, we talk about the long journey to obtain my Job’s syndrome diagnosis, the doctors who listened to me (and those who had less-than-great bedside manner) and why, above all, she follows my lead when it comes to my health.
Learn more about my mom, Norine and check out the show notes here.
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Nitika Chopra was diagnosed with psoriasis, a chronic skin condition, at age 10. At 19, she was also diagnosed with psoriatic arthritis. On today’s episode, Nitika and I talk about the emotional and physical challenges of growing up with a chronic illness, and how she came to embrace little acts of self-love--even if she didn’t call it that at the time. We also discuss her faith in God, her shift to pivot her business to serve the chronic illness community, and how her heart plays a role in all of it.
Learn more about Nitika and check out the show notes here.
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Gunnar Esiason believes cystic fibrosis drug development is in its golden age, and that’s good news for people like him. Gunnar was diagnosed with cystic fibrosis (CF) at age two, and since then, he’s relied on an intensive treatment regimen to manage his symptoms. On today’s episode, Gunnar and I talk about why he feels a sense of promise around CF research, how he copes with his condition using humor and transparency, and his two jobs, both of which he loves: CF advocacy and coaching ice hockey.
Learn more about Gunnar and check out the show notes here.
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As a physician at the NIH, Dr. Alexandra Freeman treats patients with rare diseases who have exhausted the easy options. On today’s episode, Dr. Freeman and I talk about what makes the NIH so different from other medical organizations--and how that impacts research and medical discoveries. We also discuss the challenging and rewarding aspects of her job, and why patient-focused care is so important to her work as a physician specializing in primary immune deficiencies (Job’s syndrome in particular).
Learn more about Dr. Alexandra Freeman and check out the show notes here.
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While sorting through her mother’s belongings, Becca Skolnick made an interesting discovery: a printout of an article her mother had written. The article mirrored her real life in so many ways; it was advice that her mother had put into practice over the course of her 32-year journey with scleroderma. On today’s episode, Becca and I talk about who her mom was--a person who had a remarkable way of connecting with people--and someone who Becca seeks to continue to honor through her work and writing.
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Akilah has been diagnosed with pericarditis, coronary artery spasms, and orthostatic hypotension, but she’s still searching for a reason why she’s experiencing intense and chronic pain on the left side of her body. On today’s episode, we talk about how why she no longer thinks of her health journey as a temporary bump in the road, why she decided to start talking about her health with clients, and how she advocates for herself, despite the bias she encounters as a woman of color, so she can find answers.
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In pursuit of answers for her daughter, Tracy Shaw went on a diagnostic odyssey. Thanks to Tracy’s research, using data from Madison’s many hospitalizations and visits with 21 doctors, Madison was diagnosed with common variable immune deficiency (CVID) at age 13. On today’s episode, Tracy and I talk about the judgement she faced as a single parent and caregiver, why she was inspired to tell her story and work for change, and how she navigates her role as a safety net for Madison.
Learn more about Tracy and check out the show notes here.
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In his mid-twenties, Sah D’Simone’s life as he knew it changed in an instant, and he entered the darkest episode of depression he’d ever had. Realizing that his mindset had to shift, Sah embarked on a journey of self-healing and compassion-seeking that led to his career as a meditation teacher, author, coach, and speaker. On today’s episode, Sah and I talk about the moment he realized meditation had opened a door, and why he’s passionate about making his practices accessible to marginalized communities.
Learn more about Sah and check out the show notes here.
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When Lucy Wiese was three years old, she was diagnosed with a rare disease called Job’s Syndrome (or Hyper IgE Syndrome). For Jan Wiese, Lucy’s mom, that was the beginning of her journey as a full-time caregiver. On today’s episode, Jan and I talk about the trajectory of her daughter’s serious illness and the experimental treatment Lucy received at the NIH, how she and her husband have navigated caregiving for Lucy while also parenting their son Joel, and her hopes for Lucy’s future and her own.
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When Emily Sause first started experiencing symptoms of narcolepsy in college, she wasn’t even sure what was happening. It wasn’t until she asked students and professors, who confirmed that she had been sleeping in class, that she realized something wasn’t right. She was officially diagnosed with narcolepsy, and since then, has sought both self-awareness and acceptance of her condition. On today’s episode, we talk about why she has embraced her curiosity about her condition, mysterious qualities and all.
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When Joe DiNardo discovered he’d been living with a brain tumor for almost two decades, he relied on his meditation practice to help him face his own mortality. Several years later, when his wife Marcia was diagnosed for Stage IV pancreatic cancer, he relied on that practice once again to help him find his way as a loving caregiver. On today’s episode, Joe and I discuss why brain surgery was life-changing, and how a feeling of unconditional love was at the core of his experience as a caregiver for Marcia.
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Jen Pastiloff has built her identity and career around connecting with people. She also has profound hearing loss and tinnitus and is deaf without her hearing aids. As a result, she’s had to cultivate other ways of understanding and hearing. On today’s episode, Jen and I talk about the specific challenges that come with tinnitus and hearing loss, the assumptions people make if they don’t know that she’s hard of hearing, and how a sense of courageousness helped her carve out a space to truly be herself.
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When Lauren Chiarello was 23 years old, she was diagnosed with Hodgkin’s lymphoma. Now over nine years in remission, Lauren is deeply involved in cancer advocacy at Memorial Sloan Kettering. From speaking at nurse orientations to being a resource for patients, one thing is clear: Lauren believes that by sharing our stories, we cultivate community. On this episode, Lauren and I talk about her journey with cancer, her recent experience with an ectopic pregnancy, and how she stays optimistic through it all.
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When you picture a therapy office, you might imagine something tucked away in an office building. Self Space, founded by Jodie Cariss, is just the opposite. With its storefront location, the modern therapy practice is like nothing you’ve encountered before. And that’s 100% intentional, because Jodie wants to normalize the idea that it’s okay to talk about how we feel. On today’s episode, Jodie and I discuss how Self Space seeks to change the status quo in the mental health service world.
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When Anthony Piccione was just a year-and-a-half old, he was diagnosed with autism. In his teenage years, he was also diagnosed with anxiety and mood disorder not otherwise specified. Now, Anthony is a playwright and actor, and uses art to bring awareness to the situations he’s experienced. On this episode, Anthony and I talk about the role writing plays in his life, why he’s committed to breaking down stigmas, and why he wants the arts to elevate the voices of people who experience the issues firsthand.
Learn more about Anthony and check out the show notes here.
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