Humancare: Recent Episodes

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Helping individuals with chronic illness can be very difficult because there are not always clear answers to their problems. That can be challenging, especially for doctors whose years of training have taught them to find problems and ultimately fix those problems. To overcome this, Eva stresses the importance of making a human connection with patients and validating their pain even if there may not be clear answers to their problems. Eva remarks in our conversation that the focus needs to be on not just the patient, but also the relationship.
– Tim Hamilton, host of Planning on Call

This week is a little different - we’re re-publishing Eva’s guest interview on the Planning on Call podcast!

Hosted by Tim Hamilton, CFP®, CIMA, CSLP, ‘Planning on Call’ is a series of podcasts, blog posts, and other content focused on providing medical professionals, and their spouses, the important information they need to know as they plan their future.

Other episodes of the Planning on Call podcast can be found here:https://atlaspwm.com/category/planning-on-call

In this episode of Planning on Call, Eva and Tim discuss the following:

· Eva’s build-block story that led to her chronic conditions and related career path

· Her views on the disconnect between doctor-patient relationships

· How to humanize healthcare

You can listen to this episode on the original Planning on Call podcast here:https://atlaspwm.com/planning-on-call-blog-12-humanizing-healthcare-chronic-illness

Apple Podcasts
Spotify
Libsyn

You can also find out more about Tim and financial planning resources for medical professionals here: https://atlaspwm.com/medical-professionals

Eva’s bio from the original Planning on Call show, written by Tim Hamilton:

I had an amazing conversation with Eva Minkoff in my latest episode of Planning on Call. In this episode, I had the opportunity to learn about living with chronic illness and the support structures that can be built through humanizing healthcare. A Planning on Call listener connected me to Eva because they thought she had a unique perspective to discuss, and I could not agree more! Chronic illness and its treatment is a topic I knew very little about before speaking with Eva. I found our conversation very illuminating personally, so I hope it resonates with listeners as well.

Eva has an impressive background which consists of but is not limited to being a serial entrepreneur in healthcare, Nutrition Scientist, and NASM Certified Personal Trainer. She also has spent a lot of time developing an impactful podcast, [Human]Care . This podcast features conversations with health entrepreneurs, care professionals from all walks of life, patient advocates, and industry change-makers all with the mission to humanize healthcare… and is part of a top-rated chronic illness podcast and network, Invisible Not Broken. Also, you can listen to her TEDx Talk, “5 Minutes to Fix Our Broken Healthcare System”, this talk boldly hypothesizes how elevating the patient-physician relationship through a proposed structured conversation can improve the healthcare systems.

Eva has dealt with chronic illness in her own life, suffering from Fibromyalgia, Hypermobile Ehlers Danlos Syndrome, and Mast Cell Activation Syndrome (among other ailments). Navigating the difficulties of living with, diagnosing, and treating chronic illness for most of her life has given her the firsthand experience needed to help find solutions for other individuals living, struggling, and persevering with chronic illnesses.

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THE IMPACT OF ILLNESS ON FAMILY DYNAMICS: CLORINDA WALLEY

“I don’t regret any of it. I probably would have done it differently. But I didn’t. You don’t get to choose what’s happened to you when it’s happening.”

-Clorinda Walley

About Clorinda: Clorinda Walley is the President of the Good Days charity, which funds medical expenses for those with chronic conditions.

Clorinda has over 20 years of experience in the healthcare industry and over 12 years in strategic philanthropy. As a member of the chronic illness community herself, Clorinda has ulcerative colitis, migraines, Hashimoto’s disease, arthritis, endometriosis, clotting disorder, and ADHD. Clorinda is also 1 of 13 siblings, and many of her siblings also have chronic conditions like Raynaud’s, Sjogren’s, and psoriasis. In short, living with and caring for people in this community has been her entire life. Now, Clorinda has made it her mission through Good Days to promote preventional medicine, given that so many of our chronic conditions are, in fact, preventable or at least well-managed through healthy lifestyles and attention to well-being. Clorinda’s illness journey has taught her how to care, how to caregive, and how to be a voice for those suffering from chronic disease.

In this episode, Clorinda and Eva discuss:

Importance of relationships and being held accountable for your health

Knowing the role that you and your support network play in your chronic illness journey

How to develop realistic expectations about your health

Timestamps

4:55- 52:08 Clorinda’s chronic illness journey

54:17-57:31 How to be efficient when dealing with a health crisis

57:36-1:00:56 When expectations don’t match up with reality

1:00:57- 1:07:30 When relationships fall apart

1:07:41-1:14:26 Keeping the lines of communication open

1:14:42-1:18:10 What to do when you don’t have a support system

1:18:37-1:20:04 How to meet people on their level of the chronic illness journey

1:21:06-1:24:03 What we can do to lower the number of people dealing with chronic disease

Clorinda’s links:

Good Days’ Website: www.mygooddays.org

Good Days’ Facebook: https://www.facebook.com/mygooddaysorg

Good Days’ Twitter: https://twitter.com/MyGoodDays

Instagram: https://www.instagram.com/gooddaysorg/

Additional Interview Question Responses:

Could you give us a brief snapshot of what your daily life is like? What is your “normal”?

I have had to adjust over the years since my initial struggle with Ulcerative Colitis. I am happy to say that most days now I manage well. I no longer have to take a plethora of medications and any discomfort that I have is manageable.

What does “trust” mean to you in the patient-practitioner relationship?

I found that trust goes two ways. It is not a matter of taking everything at face value and moving on. I learned that is okay to ask questions. To be your own advocate. I also had to take accountability for my care and be a diligent patient. Make my appointments, document my illness, discuss concerns and follow my treatment plan. And also to be okay if something is not working and trying something else. The same diagnosis does not mean the same care. Listen to what your body is telling you and discuss it with your provider. A road map to autoimmune diseases does not exist. They affect people differently. Document your path and find the practitioner that will listen, answer questions and work on creating your personal road map and treatment plan.

What are you most passionate about in regard to your work/helping people?

No one wants to get sick. The one thing I have found is everyone wants to have more time. More time to create experiences and lasting memories. More time to love and be loved. I believe we all have a collective responsibility to help people any way we can. I want people to know they are not alone. I want to create a connection that comes from heart. I am passionate about providing hope and more good days to anyone I touch.

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EXPLICITLY SICK WITH MONICA

HUMANCARE WITH EVA

DISCOMFORT ZONE WITH JASON

SEX AND CHRONIC ILLNESS WITH DR. LEE

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Chronic Illness Trauma Treatment With Mindfulness: Veronique Mead

“There are things like a mindfulness practice where you actually look at and work with and practice being with yourself as you are without judging and that's part of how I discovered my first triggers- by really paying attention and not thinking about my body is broken, but thinking about it as responding intelligently to what's going on in the world.”

– Veronique Mead

About Veronique: Veronique Mead was an Assistant Professor of Family Medicine and a practicing physician when she changed careers to retrain as a Somatic Trauma Therapist.

For the past 20 years she has been integrating the science and her personal journey of gradual recovery from disabling chronic fatigue syndrome into a new model for making sense of chronic illnesses of all kinds.

Her research explains how effects of trauma are not psychological as is still often mistakenly believed. Veronique shares the model and science she never learned in her medical training on her blog, Chronic Illness Trauma Studies.

In this episode, Veronique, and Eva discuss:

Approaches for addressing trauma

The impact that trauma can have on relationships

Listening to your body when seeking treatment

Time Stamps:

3:17 Veronique’s Journey with CFS

39:17 Factors that will help with your healing journey

46:26 The importance of listening to your body during your healing journey

51:51 What are some important things to know about trauma therapy?

59:05 Unrecognized trauma and its impact that it can have on your body.

1:07:16 How has trauma affected your relationships?

Veronique’s links:

Website: https://chronicillnesstraumastudies.com/

Linkedin: https://www.linkedin.com/in/veroniquemeadillnessblog/

Facebook: https://www.facebook.com/chronicillnesstraumastudies/

Youtube: https://www.youtube.com/channel/UCh-ng96Ji8rJSIJdXjCpCqA/videos

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EXPLICITLY SICK WITH MONICA

HUMANCARE WITH EVA

DISCOMFORT ZONE WITH JASON

SEX AND CHRONIC ILLNESS WITH DR. LEE

CHECK OUT OUR OFFICIAL INVISIBLE NOT BROKEN FACEBOOK PAGE AND OUR INSTAGRAMS!

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Researcher & Patient Collaboration to Humanize Care: Ella Basala

“ People really do accept and like us for who we are. It has taken a long time to understand that. As a younger person dealing with a chronic illness, that was definitely an inhibitor for me to make these close relationships and to just to be myself.“

– Ella Basala

About Ella: Ella Balasa is a patient advocate and a person living with cystic fibrosis. Diagnosed at 18 months old, cystic fibrosis (or “CF”) is a life-limiting, invisible, chronic, and rare lung disease. Before digging into Ella and her background, I want to shed some more light on what it means to have CF to give you all some context: Since early childhood, Ella has had countless hospitalizations to receive intravenous antibiotics to treat the lung infections that are the hallmark of the disease. These infections deteriorate the lung tissue over time, reducing function, and ultimately leading to failure requiring a double lung transplant to prolong life. Her disease is becoming visible as she requires using supplemental oxygen with physical activity. But despite having 28% lung function, she’s never let it be her excuse.With an academic background in biology, Ella is an advocate for the development of novel therapies for the treatment of antibiotic-resistant infections. She has spoken publicly about the value of patient voice in research as well as her experience with phage therapy (which we’ll talk about) as a previous speaker at the FDA, the Milken Institute's Future of Health Summit, and other conferences. She is deeply involved in the CF community through being a director of the US Adult CF Association, serving as a member of research committees for the CF Foundation, and through her passion for writing. Ella writes about her research experiences and introspectively about the hardships, yet triumph that comes with living with a chronic illness. Through these opportunities, she provides a scientific voice and hopes to encourage empowerment in patient communities. In her free time, Ella enjoys cooking, drawing, spending time with friends, and traveling when she can.

To learn more about her work and experiences visit, www.ellabalasa.com.

In this episode, Ella and Eva discuss:

Patient Empowerment in the world of research

The overlooked patient-researcher relationship

The formation of research (and all) relationships through vulnerability

Links to Visit:

Ella’s Website: www.ellabalasa.com

Twitter: @ellabalasa1

Instagram: @thisgirlella

Time Stamps:

3:00 Ella’s Journey with CF

5:42 The role of relationships In Ella’s Journey

7:33 Ella’s personal journey to self acceptance

8:58 The aspect of vulnerability in relationships

10:20 Ella’s experience with connecting through vulnerability

17:27 Is vulnerability in the doctor-patient relationship the same as in research?

19:49 The disconnect of researcher vulnerability

22:17 Ella’s experience with advocacy work

26:28 Why is there a shortage of self advocacy in healthcare?

36:57 How to take action in the researcher-patient relationship as a patient

38:21 How to break the patient language vs. researcher language barriers

48:33 How can patients better self advocate?

53:00 What have you learned from your experience with CF?

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Two Being Healthy and Social: Em & Kate Miller

“ I feel like we all want this deep human connection and you're not going to have a deep connection without intimacy. “

– Emily Miller

About Em and Kate: Eva was joined this week by Emily and Kate MIller. Emily and Kate are two sisters who have each been diagnosed with multiple chronic illnesses. They started a blog called Two Being Healthy that aims to share tips and advice about navigating the chronic illness world while promoting patient advocacy.

In this episode, Kate, Emily, and Eva discuss:

Effective communication in your relationships with chronic illness

Working through the “trial and error” period of treatment

The importance of emphasizing self-care

Links to Visit:

Two Being Healthy Blog: https://www.twobeinghealthy.com/

Two Being Healthy YouTube channel: http://bit.ly/2TOvA7E

Doctors Appointment – Our Top 10 Tips! : http://bit.ly/2sO6DxX

Instagram: @twobeinghealthy

Time Stamps:

22:31 The “Why?” of Two Being Healthy

35:00 Chronic illness and being honest with others (And yourself)

43:00 What tips do you have for communication with friends and family?

1:03:00 Healthier communication with others (for yourself)

[Guest’s] links:

Website: TwoBeingHealthy.com

Instagram: @TwoBeingHealthy

Twitter: @TwoBeingHealthy

CLICK HERE FOR FULL TRANSCRIPT.

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Doctor Dating Game: Joe Balewski

“What you have to look for in a doctor is not somebody who gives you the diagnosis that you want. It’s finding the doctor who listens.” – Joe Balewski

About Joe: Eva was joined this week by Joe Balewski. Joe is no stranger to the healthcare system - he has a lifetime of experience with Osteogenesis Imperfecta and, most recently, 13 years with Postural Orthostatic Tachycardia Syndrome. This past year, Joe started a practical chronic illness podcast called THE CHRONIC ILLNESS PLAYBOOK where he interviews Spoonies about the practices that get them through the day.

In this episode, Joe and Eva discuss:

The doctor-patient “Dating game”

The importance of having human interactions with your doctor

The path to getting a diagnosis (With POTS)

Timestamps:

07:15 The trial and error period of your first diagnosis

15:00 What started “The Chronic Illness playbook”

26:15 Getting diagnosed with Osteogenesis

54:24 The similarities of the doctor-patient relationship and a romantic relationship

1:16:07 The reality of finding a good doctor

Joe’s links:

Instagram: @chronicillnessplaybook

Facebook: @ChronicIllnessResourceGuide

Bonus questions:

What are your top 3 tips for someone who is undiagnosed but they know that something is “off”?

Listen to your body; Take notes; Be patient.

If you could have a giant billboard, metaphorically speaking, that could get a message out to millions or billions of people, what would it say and why? It could be a few words, a sentence or a few. It can be your quote or, if helpful, someone else’s quote. (i.e. Is there any quote you think of often or live your life by?)

“Motivation is fleeting. Fall in love with the process.”

CLICK HERE FOR FULL TRANSCRIPT.

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DON’T FORGET TO LISTEN & SUBSCRIBE TO EACH OF OUR PODCASTS:

EXPLICITLY SICK WITH MONICA

HUMANCARE WITH EVA

DISCOMFORT ZONE WITH JASON

SEX AND CHRONIC ILLNESS WITH DR. LEE

CHECK OUT OUR OFFICIAL INVISIBLE NOT BROKEN FACEBOOK PAGE AND OUR INSTAGRAMS!

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Gender, Race, and Relationships (And Endometriosis): Lauren Kornegay

“I never recommend advocacy for anybody who is not focused on themselves first. Because it is not an easy process. It is very overwhelming sometimes and you have to make sure that you are helping yourself because how are you going to help someone else if you aren’t helping yourself?” – Lauren Kornegay

About Lauren:

Eva was joined this week by Lauren Kornegay. A native of Oxon Hill, MD, Lauren R. Kornegay is the Founder and Executive Director of Endo Black, Inc. Diagnosed with endometriosis at the age of 20, Lauren experienced the pain, struggles, exhaustion, and confusion accompanying the disorder. In October of 2015, she started her journey and created ENDO Black, a platform designed to connect women of color affected by endometriosis together. In January, Lauren released “Your Personal Journey Log for Endometriosis”, a step-by-step guide on effectively tracking your endometriosis, and launched Your Favorite Endometriosis Coach, where she offers one on one sessions, planning sessions, and group coaching for people affected by endometriosis.

In this episode, Lauren and Eva discuss:

Race and gender struggles for patients in the medical field.

Self advocacy in your medical journey.

The importance of telling your doctor all of the details.

Timestamps

Introduction 4:26

What is Endometriosis? 4:56

Lauren’s story 7:10

Racial stereotypes in the field of healthcare 26:58

The importance of communicating with your doctor 46:59

Tips on advocating 51:16

Conclusion 1:14:18

Lauren’s links:

Website: laurenkornegay.com and endoblack.org

Instagram: @iamlaurenrenee and @endo_black

Facebook: FACEBOOK

Twitter: TWITTER

Additional Interview Questions:

How has your disorder affected your relationships?

Surprisingly, endometriosis has mainly affected my relationships in a positive way. My friends and family members are extremely supportive of me and the struggles I face with endometriosis.

What is your best coping mechanism or health "life hack"?

For me, I believe that my coping mechanism or health “life hack” is monitoring my self-care and learning to say No.

What are your top 3 tips for someone who is undiagnosed but they know that something is “off”?

Top three tips are to get diagnosed, to don’t take no for an answer and to always get a second, or third option is necessary.

CLICK HERE FOR FULL TRANSCRIPT.

PLEASE SUPPORT US BY:

SHARING WITH LOVED ONES 😍

SUBSCRIBING + LEAVING A RATING & REVIEW 👍

DON’T FORGET TO LISTEN & SUBSCRIBE TO EACH OF OUR PODCASTS:

EXPLICITLY SICK WITH MONICA

HUMANCARE WITH EVA

DISCOMFORT ZONE WITH JASON

SEX AND CHRONIC ILLNESS WITH DR. LEE

CHECK OUT OUR OFFICIAL INVISIBLE NOT BROKEN FACEBOOK PAGE AND OUR INSTAGRAMS!

@HUMANCARE_PODCAST

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Humancare Stories: An awareness and conflict resolution project.

The Humancare Stories segment will be a collection of anonymously contributed stories from listeners like you, about negative interactions experienced within the context of healthcare – whether that be an interaction with a patient, provider, loved one, or stranger.

For example, subitted stories could be about a disheartening dialogue with a doctor, an offensive conversation with a romantic partner, or even an infuriating exchange with someone in a waiting room. Essentially any person-to-person interaction related to one’s health journey.

After the submission of a story through voice recording, these stories are validated and dissected before being published on the Humancare podcast. (All submissions, will be reviewed although only a select few stories will be chosen to be published.)

For those that are, these episodes will begin by playing the original recording of the story.

Then as the host, I will analyze “what happened” from both a factual and experiential viewpoint.

From there, I will present to you, the listeners, thought-provoking reflection questions paired with insights from a board of advocates, as well as tools and suggested resources

– all of which aim to stimulate a potentially different way of looking at the story told that best serves both parties involved.

The purpose is to be both supportive and proactive.

It isn’t about choosing sides. It isn’t about being right or wrong.

It’s about shedding the labels. It’s about removing the ego.

It's about seeing one’s self as human, seeing that other person as human – as awful as the interaction may have been - and finding a common ground as two humans.

I am looking to encourage listeners, like you, to adopt tools to mentally, emotionally and physically prepare you for similar situations in your lives going forward.

I hope to provide you with alternative options in terms of actions and reactions so that you can feel a greater sense of control going forward.

I believe that if we individually shift our approach to these often angering, upsetting, frustrating interactions, that we can collectively and collaboratively shift the broken relationship dynamics within healthcare as a whole.

Again, it isn’t about choosing sides. It isn’t about blame or shame. No one wins in these interactions. No one.

The way we approach these difficult conversations need to change.

You know it. I know it. We all know it.

At the end of the day, relationships in the context of healthcare are between two humans just like any relationship.

And that’s ultimately the purpose of this project:

to humanize healthcare first through humanizing our stories.

If you are open to sharing your story with the community, text “I want to share my story” to 585-484-0232. From there I will send you the submission requirements.

While I will need to be in contact with you to receive your recording, all stories will be published anonymously.

Thanks again for being supporters of the Humancare podcast and our mission to humanize healthcare.

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(Part 2) The Need to Humanize Healthcare: Stephanie Tait

"Find ways to show up intentionally for your right now life, and don’t lose yourself to 'someday when.'"

- Stephanie Tait

Bio:

Stephanie Tait is a disabled disability advocate with Lyme disease. In the fourteen years it took her to get a diagnosis, she struggled with miscarriages, medical indifference and sexism, and the birth of her two sons. Her book, The View from Rock Bottom, is a tale of her struggles with chronic illness along with messages about faith, pain, suffering, joy, and hope. In this episode, Tait discusses her calls for change and the importance of centering the chronically ill in discussions about necessary changes to the medical community and healthcare system.

In this episode Stephanie and Eva discuss:

Gender bias in medicine

Fallibility and medical testing

Patient-provider dialogues

Access to care

Insurance and quality of care issues

Call to action - the need for cultural shift and advocacy in healthcare

Stephanie links:

Stephanie’s Website

Twitter: stephtaitwrites
Facebook
Instagram: @stephanietaitwrites

BONUS QUESTIONS

What is your illness(es)?

-I had Lyme disease and other coinfections for 15 years before they got it correctly diagnosed. As a result I have permanent heart damage, permanent neurological damage (causing a variety of symptoms including an intermittent tremor, neuropathy, balance issues, aphasia, memory problems, chronic fatigue, anxiety, and more,) epilepsy, arthritis, and a variety of immune dysfunctions.

-I also have Complex Post Traumatic Stress Disorder (C-PTSD) stemming from childhood trauma but exacerbated by some additional trauma I experienced later in life.

What’s your business/initiative?

• I’m an author and speaker. Earlier this year I released my first book, The View From Rock Bottom, in which I advocated for a deeper and more robust Christian theology of suffering, grief, and lament.

What conditions/audiences do you cater to primarily?

• My audience is super diverse, likely because I speak to a variety of issues in my work, ranging from disability advocacy, adoption related issues (from my adoptee perspective,) mental health & trauma, Christian theology, social justice, and more. A large percentage of my audience is either disabled or chronically ill though.

How did your illness shape your career?

• In essence, my career sprung directly out of my illness. I tried for many years to hold down a number of “traditional jobs” as people would think of them, but every time I ended up either let go or I had to quit - because my health would make it all but impossible to show up consistently and keep up with my work. Eventually my health got to the point where I spent a lot of time effectively bedridden, which was really difficult for a super extroverted personality like me. I started relying on social media as a tool to connect with the outside world and to seek relationship with others. I’m a natural over-sharer, so I would end up sharing a lot of details of what was happening with both my health and with the financial struggles that my healthcare costs (and inability to work) created. I never really set out to “grow a platform” as people call it, it just sort of happened organically out of my attempts to share my stories and connect with people while stuck in bed. Eventually I started a lifestyle blog, because that was one of the clearest avenues at the time for a woman with a social media following to try to monetize that platform and support themselves. But after a couple of years it became pretty apparent to me that I didn’t want to have to keep playing the blogger game, in terms of generating Pinterest worthy content to supplement the important writing. I started pitching more freelance articles to more serious outlets, and took a number of jobs as a public speaker. An attendee at one of those speaking jobs ended up being the connection that introduced me to a publisher, and ultimately led to my book deal.

• Ironically though, as much as my career sprang directly out of my illnesses, it is those same illnesses that have been the biggest catalyst to growth in that same career. My body already struggles with the small amount of travel I do right now, it make it hard to book a lot of better speaking jobs in other locations. My neurological problems can make it hard for me to write on many days, so my work schedule can be super unpredictable and I often find myself overwhelmed with how behind I feel. Because of my immune dysfunctions, I get sick constantly, especially in the winter, which provides additional challenges as well. I have so many big goals and ideas and ways I’d like to grow my career, but the two biggest challenges to that are my health, and the financial difficulties created by the enormous cost of my healthcare.

What makes your mission as an “influencer” unique?

• I’m an open book, with virtually no division between my public and private life, which makes me a pretty big anomaly not just in the world of internet personas, but more specifically in the Christian author/speaker world. For Christian women especially, there is a particular “type” of woman you generally see writing and speaking, and I’m pretty far from the stereotype in just about every way. I’m politically liberal, I share candidly about my struggles (whether that be my physical health, my mental health, our finances, or whatever they may be,) and I lack the polish and branding you would usually expect. I don’t have a clearly defined “niche” with my work, and have resisted any attempt to streamline myself into one specific label at the expense of other areas I want to speak into. I get into trouble a lot because I’m unwilling to edit myself or my stories to make audiences more comfortable or to make myself more appealing to the market. But I think that’s exactly what people respond to most in my work: so many of us are tired of the branded and inauthentic world of influencers and “thought leaders,” and we’re craving something different. Something shockingly real. Something we can relate to.

What’s your latest project/post/feature that you are most excited about?

• My book just came out back at the beginning of August, and I’m really REALLY proud of the work I did there. That book was essentially 3 years worth of work, sweat, and tears (SO many tears,) and it’s been amazing to see the responses I’m getting from readers, and the conversations the book has inspired.

What are you most passionate about in regard to your work/helping people?

• I want people to learn how to show up completely for their lives RIGHT NOW TODAY, and not wait for “someday when.” Too much of our lives are wasted on the “someday when” lie. “Someday when” I get better, “someday when” I’m out of debt, “someday when” I have a spouse or kids or that career goal or I can buy a house or whatever the arbitrary line of “then I’ll have arrived” looks like for us - THEN I can allow myself to do all these things I want to do. THEN I can let myself have more than bare minimum survival. THEN I can be happy. Except “someday when” is a lie. Sometimes those goals will never happen for us. Sometimes they work out, but we are surprised to find a new “someday when” pop up in its place. And in the end, we lose years of our lives chasing the “someday when,” instead of allowing ourselves enjoyment today.

How do/did you handle flares while working?

-Poorly? (lol) But seriously though, I’m the worst. I have a downright predictable tendency to dramatically overdo it the second I have a little bit of energy, and then find myself paying for it for days or weeks afterwards. One of the things I’ve learned in trauma therapy is that for many of us with chronic illnesses and/or disability, we tend to disconnect ourselves from our body’s signals as a survival mechanism. In order to keep up with even the bare minimum demands of life, we often have to train ourselves to ignore our body’s signals of pain, fatigue, etc. The problem is that the more we disconnect from those signals, the more difficult it can be to register ANY of our body’s cues. The biggest component of trauma therapy for me has been learning tools for better embodiment, trying to connect my cognizant brain back to my physical body, so I can pursue a healthier sense of wholeness. I’m still learning, and there are years and years of unhealthy habits to unwind, so I would be lying if I said I have it all figured out now. But I’m trying to create more intentional routines of rest, and learn how to respect my body’s limitations without shame or guilt. I’m also trying to advocate for myself better with outlets I write articles for or places that ask me to come speak. That can look like asking for longer deadlines to build in more cushion, or requiring speaking gigs to pay for an additional overnight hotel stay either before or after the event so that I can space out the work from the travel to give my body a better chance of managing it all.

If you had one message to send out to every chronic illness warrior out there, what would it be?

• Find ways to show up intentionally for your right now life, and don’t lose yourself to “someday when.” Ask yourself, what would it look like to find happiness, purpose, fulfillment, and even joy in your life as a chronically ill/disabled person? Let yourself have more than just survival mode. You deserve happiness now, not “someday when” or even if you can get all the right ducks in a row.

What was your journey like finding the right care? Did you find good practitioners? (Diagnosis, treatment, management, etc.)

https://www.today.com/health/living-chronic-lyme-disease-symptoms-after-misdiagnosis-t148747
I think that piece I did with the Today Show helps answer this question best. I could so easily fill up like 12 pages here just trying to answer this question.

Why do you think the patient-practitioner relationship is important?

• Because many MANY illnesses don’t have a simple test with an easy yes/no result to read, they require a practitioner to really listen to their patients to get a clear picture of what’s going on, and more important to believe us. Too many healthcare providers are dismissive of the symptoms their patient’s are describing (especially when those patients are women and/or people of color,) and are quick to assume it’s all in our heads if the tests can’t point to a simple answer.

What does “trust” mean to you in the patient-practitioner relationship?

• Believe us. Reaffirm us. Validate us. LISTEN to us. And then treat us the way you would want to be treated in our shoes. Trust is earned by the way respect us, not simply by giving us the correct tests or treatments.

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The Need to Humanize Healthcare: Stephanie Tait

“We can encourage the conversation”

- Stephanie Tait

Summary:

Stephanie Tait is a disabled disability advocate with Lyme disease. In the fourteen years it took her to get a diagnosis, she struggled with miscarriages, medical indifference and sexism, and the birth of her two sons. Her book, The View from Rock Bottom, is a tale of her struggles with chronic illness along with messages about faith, pain, suffering, joy, and hope. In this episode, Tait discusses her calls for change and the importance of centering the chronically ill in discussions about necessary changes to the medical community and healthcare system.

In this episode Stephanie and Eva discuss:

Gender bias in medicine

Fallibility and medical testing

Patient-provider dialogues

Access to care

Insurance and quality of care issues

Call to action - the need for cultural shift and advocacy in healthcare

Stephanie links:

Stephanie’s Website

Twitter: stephtaitwrites
Facebook
Instagram: @stephanietaitwrites

BONUS QUESTIONS

What is your illness(es)?

-I had Lyme disease and other coinfections for 15 years before they got it correctly diagnosed. As a result I have permanent heart damage, permanent neurological damage (causing a variety of symptoms including an intermittent tremor, neuropathy, balance issues, aphasia, memory problems, chronic fatigue, anxiety, and more,) epilepsy, arthritis, and a variety of immune dysfunctions.

-I also have Complex Post Traumatic Stress Disorder (C-PTSD) stemming from childhood trauma but exacerbated by some additional trauma I experienced later in life.

What’s your business/initiative?

• I’m an author and speaker. Earlier this year I released my first book, The View From Rock Bottom, in which I advocated for a deeper and more robust Christian theology of suffering, grief, and lament.

What conditions/audiences do you cater to primarily?

• My audience is super diverse, likely because I speak to a variety of issues in my work, ranging from disability advocacy, adoption related issues (from my adoptee perspective,) mental health & trauma, Christian theology, social justice, and more. A large percentage of my audience is either disabled or chronically ill though.

How did your illness shape your career?

• In essence, my career sprung directly out of my illness. I tried for many years to hold down a number of “traditional jobs” as people would think of them, but every time I ended up either let go or I had to quit - because my health would make it all but impossible to show up consistently and keep up with my work. Eventually my health got to the point where I spent a lot of time effectively bedridden, which was really difficult for a super extroverted personality like me. I started relying on social media as a tool to connect with the outside world and to seek relationship with others. I’m a natural over-sharer, so I would end up sharing a lot of details of what was happening with both my health and with the financial struggles that my healthcare costs (and inability to work) created. I never really set out to “grow a platform” as people call it, it just sort of happened organically out of my attempts to share my stories and connect with people while stuck in bed. Eventually I started a lifestyle blog, because that was one of the clearest avenues at the time for a woman with a social media following to try to monetize that platform and support themselves. But after a couple of years it became pretty apparent to me that I didn’t want to have to keep playing the blogger game, in terms of generating Pinterest worthy content to supplement the important writing. I started pitching more freelance articles to more serious outlets, and took a number of jobs as a public speaker. An attendee at one of those speaking jobs ended up being the connection that introduced me to a publisher, and ultimately led to my book deal.

• Ironically though, as much as my career sprang directly out of my illnesses, it is those same illnesses that have been the biggest catalyst to growth in that same career. My body already struggles with the small amount of travel I do right now, it make it hard to book a lot of better speaking jobs in other locations. My neurological problems can make it hard for me to write on many days, so my work schedule can be super unpredictable and I often find myself overwhelmed with how behind I feel. Because of my immune dysfunctions, I get sick constantly, especially in the winter, which provides additional challenges as well. I have so many big goals and ideas and ways I’d like to grow my career, but the two biggest challenges to that are my health, and the financial difficulties created by the enormous cost of my healthcare.

What makes your mission as an “influencer” unique?

• I’m an open book, with virtually no division between my public and private life, which makes me a pretty big anomaly not just in the world of internet personas, but more specifically in the Christian author/speaker world. For Christian women especially, there is a particular “type” of woman you generally see writing and speaking, and I’m pretty far from the stereotype in just about every way. I’m politically liberal, I share candidly about my struggles (whether that be my physical health, my mental health, our finances, or whatever they may be,) and I lack the polish and branding you would usually expect. I don’t have a clearly defined “niche” with my work, and have resisted any attempt to streamline myself into one specific label at the expense of other areas I want to speak into. I get into trouble a lot because I’m unwilling to edit myself or my stories to make audiences more comfortable or to make myself more appealing to the market. But I think that’s exactly what people respond to most in my work: so many of us are tired of the branded and inauthentic world of influencers and “thought leaders,” and we’re craving something different. Something shockingly real. Something we can relate to.

What’s your latest project/post/feature that you are most excited about?

• My book just came out back at the beginning of August, and I’m really REALLY proud of the work I did there. That book was essentially 3 years worth of work, sweat, and tears (SO many tears,) and it’s been amazing to see the responses I’m getting from readers, and the conversations the book has inspired.

What are you most passionate about in regard to your work/helping people?

• I want people to learn how to show up completely for their lives RIGHT NOW TODAY, and not wait for “someday when.” Too much of our lives are wasted on the “someday when” lie. “Someday when” I get better, “someday when” I’m out of debt, “someday when” I have a spouse or kids or that career goal or I can buy a house or whatever the arbitrary line of “then I’ll have arrived” looks like for us - THEN I can allow myself to do all these things I want to do. THEN I can let myself have more than bare minimum survival. THEN I can be happy. Except “someday when” is a lie. Sometimes those goals will never happen for us. Sometimes they work out, but we are surprised to find a new “someday when” pop up in its place. And in the end, we lose years of our lives chasing the “someday when,” instead of allowing ourselves enjoyment today.

How do/did you handle flares while working?

-Poorly? (lol) But seriously though, I’m the worst. I have a downright predictable tendency to dramatically overdo it the second I have a little bit of energy, and then find myself paying for it for days or weeks afterwards. One of the things I’ve learned in trauma therapy is that for many of us with chronic illnesses and/or disability, we tend to disconnect ourselves from our body’s signals as a survival mechanism. In order to keep up with even the bare minimum demands of life, we often have to train ourselves to ignore our body’s signals of pain, fatigue, etc. The problem is that the more we disconnect from those signals, the more difficult it can be to register ANY of our body’s cues. The biggest component of trauma therapy for me has been learning tools for better embodiment, trying to connect my cognizant brain back to my physical body, so I can pursue a healthier sense of wholeness. I’m still learning, and there are years and years of unhealthy habits to unwind, so I would be lying if I said I have it all figured out now. But I’m trying to create more intentional routines of rest, and learn how to respect my body’s limitations without shame or guilt. I’m also trying to advocate for myself better with outlets I write articles for or places that ask me to come speak. That can look like asking for longer deadlines to build in more cushion, or requiring speaking gigs to pay for an additional overnight hotel stay either before or after the event so that I can space out the work from the travel to give my body a better chance of managing it all.

If you had one message to send out to every chronic illness warrior out there, what would it be?

• Find ways to show up intentionally for your right now life, and don’t lose yourself to “someday when.” Ask yourself, what would it look like to find happiness, purpose, fulfillment, and even joy in your life as a chronically ill/disabled person? Let yourself have more than just survival mode. You deserve happiness now, not “someday when” or even if you can get all the right ducks in a row.

What was your journey like finding the right care? Did you find good practitioners? (Diagnosis, treatment, management, etc.)

https://www.today.com/health/living-chronic-lyme-disease-symptoms-after-misdiagnosis-t148747
I think that piece I did with the Today Show helps answer this question best. I could so easily fill up like 12 pages here just trying to answer this question.

Why do you think the patient-practitioner relationship is important?

• Because many MANY illnesses don’t have a simple test with an easy yes/no result to read, they require a practitioner to really listen to their patients to get a clear picture of what’s going on, and more important to believe us. Too many healthcare providers are dismissive of the symptoms their patient’s are describing (especially when those patients are women and/or people of color,) and are quick to assume it’s all in our heads if the tests can’t point to a simple answer.

What does “trust” mean to you in the patient-practitioner relationship?

• Believe us. Reaffirm us. Validate us. LISTEN to us. And then treat us the way you would want to be treated in our shoes. Trust is earned by the way respect us, not simply by giving us the correct tests or treatments.

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WHEN YOU’VE TRIED EVERYTHING TO FEEL BETTER: DR. NICOLE RIVERA

"Our biggest mission is to truly evolve how healthcare is being done by making sure we're figuring out the root cause....We want to look at the neurological system. We want to look at the mental, emotional. We want to look at the DNA. We want to look at all of those different avenues to really truly know what the foundational problem is.”

– Dr. Nicole Rivera

Summary:

Eva was joined this week by Dr. Nicole Rivera. She was born and raised in New Jersey and her passion for functional, integrative medicine, nutrition, and personalized care knows no bounds. She is owner and founder of Integrative Wellness Group and actively works alongside her husband Dr. Nick Carruthers to provide cutting edge healthcare for those in need. The center is located in Belmar, NJ where they’ve laid down their roots together and prospered.

Dr. Nicole Rivera prides herself in her specialty-- finding the root cause to chronic and mystery-illnesses through unique testing for each patient.

She is an integrative physician, nutritionist, chiropractor, business owner, and author.

In this episode Nicole and Eva discuss:

-Integrative, individualized health care through functional medicine

-How to find balance in one’s diet and lifestyle, and the Doctor Demartini Method

-The function of ‘why?’ and why it’s important to establish one for working towards a goal

-How stress and emotional trauma can manifest into physical problems

-Finding the foundational problem, and trusting the process of personalized care

Nicole’s links:

Integrative Wellness Group Website

Integrative Wellness Radio

Instagram @integrativewellnessgroup

Eat For Your Gut

Timestamps:

Introduction to Integrative Wellness Center 2:43

Their Mission 6:56

Personal Trainer Story 8:32

Balanced Health 9:23

The Elephant in The Room: Stress 12:04

Where is Your Why? 15:53

Building Trust Through Transparency 15:51

Reaction to Stress 20:03

Human Design 25:19

A Patient Story: Emotions Tied to the Body 27:39

Emotions Manifesting as Physical Pain 31:36

When You’ve Tried Everything 35:07

Trust The Process 40:02

Core Values 41:27

Ending Mantra 44:42

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Body Breakdowns and Self-Love Breakthroughs: Lisa Pachence

"I want what's best for my clients and for the people that I serve, therefore I want to strive to be as excellent as I possibly can. So, I think that there's some good in survival mechanisms and there's also a way to shoot for the same goal, but from a place that is empowering, has a different story, and a different motivation than from a disempowered place.”

– Lisa Pachence

Summary:

Eva was joined this week by Lisa Pachence. She is an Executive Life Coach and Career Consultant for big-hearted, high-achieving women who crave extraordinary lives without the exhaustion.

As an Elite Coach for coaches, entrepreneurs, and leaders, Lisa brings deep insights, practical tactics, and masterful partnership to enact transformative life and business changes.

Lisa is a Professional Certified Coach (PCC) and founder of LP Coaching and Consulting, which offers designer programs for Executives, Young Leaders, Business Owners, and Career Changers.

In this very special episode Lisa and Eva discuss:

Feelings of isolation from chronic illness and pain - taking the “Body breakdown” to transformed relationship to self

Victim mentality vs. the responsibility to consistently choose

Guilt vs shame (shout out to Brene Brown!)

Taking control, and regaining a sense of self through coaching

Having patience in the process

+ How our automatic “survival mechanism” isn’t inherently bad (in fact, sometimes it’s necessary) but we can practice choosing more empowering contexts

Lisa’s links:

Coaching with Lisa Pachence Website

@coachingwithlp Instagram

Lisa Pachence Facebook Group

LinkedIn Page

BONUS Interview Questions:

What makes you feel:

GOOD? Forming or deepening relationships.

BAD? Being misunderstood, misquoted, scapegoated.

RIGHT? Standing against injustice.

ANGER? Seeing injustice or bullying.

JOY? Laughing with a good friend over a shared joke.

What is/are your disorder(s) and or illness/ condition/ailment?Unresolved back pain for over a decade. Degenerative Disc Disease.

What would you like people to know about your daily life?

I’m somewhat recovered now, but having almost two decades of back pain has completely changed me and my relationship to myself. I have to continuously shed layers of shame, betrayal, and disappointment from years of body breakdowns.

What kind of support do you get from family or friends?
Quite a lot, but my friends and family didn’t understand for years. There was sympathy, and attempts to send solutions, but rarely empathy.

What stigma’s have you experienced related to your health? What do you think would have helped remove that stigma?
The stigma of “she looks fit, why can’t she take a walk or participate in this easy activity?” The stigma could usually be removed with explanation, but it came with wracking guilt that I was a burden.

What is the hardest and/or best lesson your disorder has taught you?
Patience, inner healing, forgiving myself, and forgiving others.

What is your best coping mechanism or health "life hack"?

Getting OODLES of support. Unreasonable amounts of support.

What are your top 3 tips for someone who is undiagnosed but they know that something is “off”?

Don’t give up on the discovery. Keep inquiring until your body speaks to you and points you in a direction.

Don’t stop once you’ve been given a solution, or if a solution doesn’t work. Try it again, or seek another avenue. No one size fits all.

Find a coach, therapist, or community that you can lean on and get advice from. We CAN’T do it alone.

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Allies and Advocacy: Spoonies Unite

"Chelsea, especially with not having a chronic illness herself. Really did an amazing job of helping me believe that there are humans out there who don't have to experience what we're going through in order to have compassion and empathy and understanding.”

– Cassandra Da’Luz Vieira

Summary:

Eva was joined this week by Cassie and Chelsea. Cassie is originally from Oxford, England, and Chelsea from Golden, Colorado. They currently live in Wichita, Kansas, and advocate for those with a chronic illness to live a full, thriving lifestyle. Together, with Cassie's real-life experience living with Crohn's Disease and Chelsea's knowledge of coaching, the duo provides resources that encourage a better quality of life.

The fantastic things they offer include a podcast - The Real Life Show: Living with a Chronic Illness, a workbook - Mastering Energy Management, a resource library for all things chronic illness at MyWellnessHub.co, an online community full of educational and supportive resources, and their non-profit, Spoonies Unite, to help provide financial assistance for wellness treatments.

Their mission and passion are to inspire those living with a chronic illness and their loved ones to feel their best. Cassie and Chelsea were also selected by Aerie of American Eagle Outfitters to be part of the 2020 Aerie Changemakers cohort and are so proud to use their many platforms to bring awareness to the chronic illness and disability experience.

In this episode, Cassie, Chelsea, and Eva discuss:

• Comparisons between Spoonie vs. Non-Spoonie lifestyles, understanding limitations and how pain is relative.
• How to be an ally for your chronically ill friends.
• How to say “no” to unsolicited advice.

Cassie and Chelsea’s links:

https://therealspooniesunite.buzzsprout.com

https://www.instagram.com/therealspooniesunite

https://www.facebook.com/groups/2443751542368935

https://mywellnesshub.co/

What #AerieREAL Changemakers REALLY Are Made Of: https://www.youtube.com/watch?v=M4J29KUzNT8

Holiday Gift Guide: https://marvelous-thinker-3927.ck.page/71c114737b

BONUS Interview Questions:

What is/are your disorder(s) and or illness/ condition/ailment?Cassie- Crohn’s Disease, Chelsea - none, just an advocate (does have anxiety at times)

What would you like people to know about your daily life?
That it changes based on the needs of that day.

What kind of support do you get from family or friends?
Listening on phone calls, being understanding of canceling plans, Chelsea and Cassie hold each other accountable and are always flexible with each other

How has your disorder affected your relationships?
Some relationships have ended, some don’t include Cassie’s illness, but being open and honest has strengthened some especially between Cassie and Chelsea

How has your experience turned into advocacy on a larger scale?

We want to share real stories to bring awareness of the experience of so many which turned into a podcast, an online community, a non-profit organization, and being Aerie Changemakers.

If you could have a giant billboard, metaphorically speaking, that could get a message out to millions or billions of people, what would it say and why?

Listen to the experiences of others, they are valid.

In the last 5 years, what have you become better at saying “no” to?

YES! Saying no to some things means you get to say yes to what really matters to

When you feel overwhelmed or unfocused, or have lost your focus temporarily, what do you do?

Take a break, practice self-care

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Nurturing Relationships through Creative Resilience: Jenni Grover

"There's opportunities to play and find joy and creativity, but we have to really look for them, and that goes for this tiny moment in world history of pandemic, it goes for living life with chronic illness - It just helps us feel like there's more to this life than what's right here in front of us.”

– Jenni grover

Summary:

Eva was joined this week by Jenni Grover, the founder of the School of Creative Resilience, where she teaches people how to tap into their innate creativity, grow it as a resource, and use it to boost resilience and joy. She currently offers 1:1 coaching, digital courses, in-person workshops, and consulting services.

Jenni’s passion for teaching creative resilience evolved through 15 years of experience as a professional patient advocate. Through her organization, ChronicBabe, she taught sick folks how to craft incredible lives beyond illness... with a focus on resilience. Her website, videos, social media, and speeches around the world—as well as her book, ChronicBabe 101: How to Craft an Incredible Life Beyond Illness—reached countless people.

For 31 years (the past 18 as an entrepreneur), Jenni has collaborated with hundreds of media outlets and organizations worldwide. Today, she’s happily focused on lifting up others and bringing more creativity into the world.

Learn more about Jenni and connect:

JenniGrover.com

CreativeResilience.com

Instagram and a more personal Instagram

School of Creative Resilience on Facebook

Take The Daily Creative, a course on creativity

In this episode, Jenni and Eva discuss:

how to be playful and bring lightness to life by bringing creativity to the mundane, the simple day-to-day things

how relationships play an important role in building up our resilience

how creative external expression of self can be a safety and copy strategy

Jenni’s links:

JenniGrover.com

CreativeResilience.com

Instagram and a more personal Instagram

School of Creative Resilience on Facebook

Take The Daily Creative, a course on creativity

Time Stamps

0:00-intro

4:30- feeling “different”

5:55 - teaching other people how to thrive

7:11- defining creative resilience

11:00 - improv class story

12:36 - what creative resilience looks like for others

14:00 - creative process being like a lifestyle etc.

17:45- being creative and simplicity

18:21 - who is a safe person to show weird creative side to

12:10 - how to establish creative relationships during the pandemic

23:00 being playful

23:54 - therapy and inner childhood

24:50 - bathroom remodel story

26:00- weight of the pandemic and of chronic illness

27:50 - chronic babe

29:20- supportive entrepreneurship

31:25 - quilting about abuse

32:20 - making friends through the pandemic

32:51- friends in person vs over zoom calls etc. when you have chronic illness

34:26 - how you make friends when you have chronic illness

35:16 - intentional commitment

40:00 - does talking about chronic illness make it better/worse?

44:00 - pink hair - 49:00

53:00- chronic illness and possibility

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Intuitive Eating, Body Image Resilience and Self-Trust: Holly Toronto

"You are the number one authority on your body. That's what intuitive eating is about, it’s putting you back into the driver's seat.”

– Holly Toronto

Summary:

Eva was joined this week by Holly Toronto, a certified Master Level Coach specializing in body image and intuitive eating.

Holly is certified through the Health Coach Institute and has 4 years of experience helping highly driven women stop dieting and build resilience to toxic beauty messages. She uses an intuitive and spiritual approach that guides her clients towards self trust, confidence and Sovereignty over their entire being; body, mind and soul. From this place, her clients are able to make self guided decisions and finally live the life they desire in the body they live in today.

In this episode, Holly and Eva discuss:

stigmas around weight and dieting in the medical world and beyond

the benefits (and social realities) of intuitive eating

how losing weight through dieting backfires - mentally and physically

Holly’s links: ➡️ Visit

IG: @holly_toronto

Website: www.loveyourbodyhc.com

Intuitive Eating Private Facebook group

BONUS Interview Questions:

What makes you…

Feel good: Watching my dog run around and play

Feel right: Sovereignty and personal freedom are extremely important to me and built into my life and work.

Feel bad: Overworking and not listening to my body.

What would you like people to know about your daily life?

That it's flexible and rooted in listening to my body and what she needs.

What kind of support do you get from family or friends?

Husband, coaching, therapy

Has your experience turned into advocacy on a larger scale? If so, in what way?

My experience with disordered eating and body image struggles led me to doing the work I do today

Personal meaningful quote: “Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure." Marianne Williamson

Best Investment: My dog - it's weird to think of him as investment but he's changed my life for the better.

Habits that help: My daily spiritual practice of prayer, reading and journaling

It's allowed me to become more resilient and I no longer believe in failure in the traditional sense - only feedback.

What have you learned to say “No” to?: Diets, diets, diets! All the diets!

Also to invitations - knowing that when I don't honor my no that builds resentment which is actually worse for my relationships than not having my physical presence at the event.

Message for all those youngins out there:

You deserve to set boundaries with your work, don't buy into hustle culture to get ahead. I would tell them to ignore that it's all about "hardwork" because I think that leads to burn out and illness.

Best purchase at $100 or less: It's not $100 or less, but my backyard furniture that allows me to comfortably work outside.

Books to recommend: Intuitive Eating, The Universal Christ, Untamed

Fun(nny) Fact: I make up songs about my dog.

Favorite activity: Hosting a group of friends and cooking them an amazing dinner.

Favorite message to self: I am worthy, enough and valuable just as I am.

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"When people are empowered they often pay the favor forward by positively impacting other people's lives."

– DR. PAYAL BHANDARI

SUMMARY:

Eva was joined this week by Dr. Payal Bhandari, M.D., a leading practitioner of integrative functional medicine and the founder of SF Advanced Health. She combines the best in Western and Eastern medicine to define the root cause of illness. By being an expert of cell function, Dr. Bhandari specializes in cancer prevention and reversal, digestive & autoimmune disorders.

LINKS:

➡️ Visit Dr. Bhandari's site to learn more and connect with her.

And don't forget to check out the SF Advanced

blog

Instagram

newsletter

INTERVIEW BREAKDOWN:

• What is/was your profession? Integrative Functional Family Physician specializing on cellular health and the impact of the microbiome, nutrient deficiencies, and toxin overload.

• What is your illness(es)? Chronic eczema

• Where do you work/what’s your business? Owner and senior physician of integrative medical center, SF Advanced Health in San Francisco, CA

• What types of patients/conditions do you work with? Patients with either a chronic disease or no diagnosis with debilitating symptoms who have already been evaluated by many different medical physicians and other healthcare specialists but unfortunately are not getting better.

1. What makes your approach to care unique? I give people as much time as necessary to truly understand the full picture and discover exactly where their problem lies on a cellular level. I can then define an effective personalized treatment plan which drives results quickly and empowers the patients to use tools they easily have access to.

2. How did your illness shape your career? The persistence and intensity of my chronic eczema throughout my life has never responded or resolved with all the treatment options offered by conventional western medicine. The debilitating nature of my skin disorder would cause severe itching, skin bleeding, anxiety, and poor sleep. When my youngest daughter also began to develop variants of eczema in the form of idiopathic hives by age 2 and my oldest daughter required an emergency oophorectomy at age 6, I became determined to find real answers. I couldn’t accept that my daughter’s and my health issues were idiopathic (aka., without a cause) as we were always informed by our doctors.

I began doing aggressive research outside of allopathic scientific research, and discovered how intertwined nutrition, gut function, the nervous system, and environmental toxins are with one’s health. I realized that all acute symptoms and chronic diseases are actually caused by cell dysfunction and poor neurotransmitter signaling caused by environmental factors. These discoveries led me to shift my perspective on how I lived my life, cared for my family and patients.

I began shifting away from being a traditional family physician who just treated patients’ symptoms with pharmaceuticals loaded with side effects or recommended expensive tests and invasive procedures which did not necessary address the underlying cause. I began integrating from many different schools of thought in order to understand exactly how the body functions on a cellular level. I now specialize in discovering the root cause of any chronic condition by blending the best in evidence-based Eastern and Western Medicine. Patients are now given personalized treatments utilizing tools they already have and hence, feel empowered. Significant results occur within weeks.

3. What do/did you do when you don’t know what to do about a patient? I have built an amazing team of healthcare professionals both within my integrative medical center and within the community which I reach out for guidance in helping care of my patients.

4. Are/were you open about your illnesses with your patients? Always! When practitioners connect with patients on the same level, we humanize the experience, and built trust and confidence with our patients.

5. What does “trust” mean to you in the patient-practitioner relationship? Everything! Without trust, there is no confidence, faith, and hence, no relationship.

6. What are you most passionate about in regard to your work/helping people? In touching as many people's lives as possible in innovative ways and transforming their lives. When people are empowered they often pay the favor forward by positively impacting other people's lives.

7. How do/did you handle flares while at work? By staying calm and not getting overwhelmed while also increasing hydration, and decreasing how much food I consumed and eventually eliminating certain foods.

8. How do/did you handle being a practitioner, patient and your personal life? My work has always been intertwined with the rest of my life and who I am. When I continue to embrace how best to care for myself, I give my best to all aspects of my life. When hiccups come along, I have had to take a few steps back and reassess where I needed to own myself in order to get back on the right path.

9. Do you tell your patients what you tell yourself/do you practice what you preach? YES! I can’t recommend treatments I haven’t tried myself. It is the only way I know exactly how to help patients and exactly what is going to help them get better.

10. How do you research conditions? By attending educational conferences, staying in close touch with laboratory and supplement companies in order to understand the latest developments in diagnostic and medication research, being connected to other integrative holistic practitioners, keeping up with the latest research through extensive readings.

10A. How do you convey this knowledge to patients? In the most concise, simple, comprehensive way which connects with each patient

11. How have you found care? Did you find good practitioners? What was your experience like? Through word-of-mouth; My experience has been that people are very open to help and to be a part of a collaborative community focused on taking amazing care of clients and professionals simultaneously.

12. Tell us about a special experience with a patient that you found to be inspiring: I recently saw a patient with debilitating psoriasis which covered her entire body and causing severe constant itching. It had led to increasing isolation and poor self-esteem. We uncovered the root cause of the patient’s skin disorder and began making some dramatic changes in her diet and overall lifestyle. The patient initially was surprised to lose all of her excess weight and start breathing more comfortably. She eventually saw the rash completely resolve. Her confidence dramatically improved allowing her to begin dating and becoming more physically active, desires she had had for years but found impossible to obtain.

13. If you had one message to send out to every chronic illness patient out there, what would it be? Love is all around. You just have to stop isolating yourself and know that you have never been alone or will be alone on your journey. Hope will always help you find a way to heal.

14. Where can the audience find you in terms of social media, website, etc.?

Our website

Our blog

Our Instagram

Our newsletter

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You Don't Know What You Don't Know: Tami Stackelhouse

Finding your joy and purposefully adding joy into your life is what makes life worth living. It’s why we choose to say no to some things so we can say yes to other things.

– Tami Stackelhouse

Summary:

Eva was joined this week by Tami Stackelhouse, a Fibromyalgia Coach, fellow podcast host & Author. Tami has Fibromyalgia, Hashimoto’s thyroiditis, chronic daily headache, migraines among others.

Tami Stackelhouse dreams of a day when all fibromyalgia patients have access to the care and support they need to thrive; she is doing all she can to make that dream come true. A fibromyalgia patient herself, Tami has gone from disabled to thriving. Her compassion, gentle support, and fun coaching style have helped fibromyalgia patients all over the world take back control of their lives.

She is the Founder of the International Fibromyalgia Coaching Institute, creator of the Fibromyalgia Podcast, and author of The Fibromyalgia Coach and Take Back Your Life.

Links:

➡️ visit https://FibromyalgiaPodcast.com and IFCInstitute.com

@fibrocoach

https://www.instagram.com/fibrocoach/

Interview breakdown:

1. How did your illness shape your career?

It was hiring a coach that turned my health around. I was in the process of filing for disability and working with a coach got me to the point I could begin working again. It’s the entire reason I became a coach.

2. Are/were you open about your illnesses with your patients?

It’s the whole foundation of my business. What would I have to teach if I hadn’t gone through it myself?

3. What are you most passionate about in regard to your work?

I am passionate about changing what happens when a patient is diagnosed with fibromyalgia. Right now, we are basically being told, “There’s no cure. There really aren’t very many good treatment options. Here’s an antidepressant and good luck.” Instead, I want people to be told, “Okay, you have fibromyalgia. It’s not a big deal; here’s what we do….”

4. How do/did you handle flares while at work?

I really don’t have flares any more, largely because I’ve designed my life to help me feel my best. Part of this was designing my business to be do-able even when I’m in a flare. At the beginning, that sometimes meant coaching my clients on the phone from bed. Today, it might mean sitting in my zero-gravity chair instead of at my desk.

5. Do you tell your patients what you tell yourself/do you practice what you preach?

I know I wouldn’t feel as good as I do if I wasn’t a coach. Teaching this all day reminds me every day why I need to keep up on my self-care and healthy habits. There are so many times I’m coaching myself as I’m coaching my clients!

6. What is a message you want to leave our listeners with?

Keep your eyes on the bigger picture to find your balance.

Purposefully add in joy into your life — it's what makes life worth living.

7. One action step:

Make a “Joy List”!

CLICK HERE FOR FULL TRANSCRIPT.

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“‘Something that is really heavy and big on my heart is just the fact that wherever you are, whatever you’re doing, wherever you’re at in life that you matter as a person. Whether you’re doing something super small or super big, if you’ve achieved your goals or you haven’t, or if you’re in bed all day or you’re not, you matter so much as a person’” – Allyn Amerongen

Summary: Eva was joined this week by Allyn Amerongen, a wellness coach who specializes in empowering women with chronic illnesses. Together they spoke about a number of topics from negotiating relationships with doctors to the mantras they have found useful during the years.

➡️ visit https://doingitdespite.com/

@doingitdespite

What’s covered

2:59- what do you value most in life?

‘Grace and transparency’

4:21- what makes you feel good?

5:18- what makes you feel bad?

6:04- what makes you feel right?

7:46- what makes you feel anger?

8:51- what makes you feel joy?

10:01- Allyn’s story

17:17- asking about Allyn’s relationships in all this (family, doctors, challenges of romantic relationships)

22:02- romantic relationships discussed

26- doctors

36:51- Allyn advice that you’re worth it

39- Eva advice, it is possible

42:48- doing it despite

50:30- ‘everybody’s got their own shit’

59:35- rapid fire questions

References mentioned in the episode

Tim Ferris questions mentioned at 59:35

Cloe Wade 1:00:25

Where do I begin? Where do I start?

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HOW TO COPE DURING COVID-19: THE JOURNEY OF A PSYCHOTHERAPIST WITH PRIMARY IMMUNODEFICIENCY

“GIVE YOURSELF PERMISSION TO COPE HOWEVER YOU WANT TO COPE…NO JUDGMENT NECESSARY” – JODI TAUB

Jodi Taub is a psychotherapist with a private practice in NYC. She is a specialist in chronic illness and is a chronic illness warrior herself. Her first episode on Invisible Not Broken was called “The Emotional side of chronic illness” (Jan, 2019).In today’s episode, we dive into Jodi’s personal and professional journey as a very high-risk patient with Primary Immunodeficiency.

We talk about coping – both internally and externally - during this acutely difficult time in history, and we cover a number of related thoughts like fear, gratitude, judgment, life-risk, behavior change, trauma, and more.

Emotions are running high, everyone. But we can get through and we can do so together (even when we cant physically be together).

Stay safe. Stay home. Stay well.

(Trigger warning: we talk about PSTD, loss, trauma, war, etc.)

➡️ VISIT HTTPS://WWW.JODITAUBTHERAPY.COM

@JODITAUBTHERAPY (ON FACEBOOK)

Eva’s personal coping tactics:

My coping: Being in control of what you can

· ROUTINE (Stretching and “body-feels” Special coffee; Review “schedule”) for Wellacopia, podcast, chores, workouts

· TAKING WALKS! Avoiding Cabin fever and being present (but safe) outside

· Makeup and dressing - even if no one sees me! Makes me feel good.

· Being in touch with the reality to an extent – read the news every day, talk to my friends about how they're feeling

· Projects I have been putting off (organizing a photo album)

· Meditation

· Writing in my journal

· Games with friends (via Zoom)

· Staying fit (live and recorded online videos)

· Cooking experimentation (made a vegan gluten free lasagna!)

· Conscious time with my husband - #1 coping strategy. Very grateful for his support.

· Watching “Friends” again. Always makes me happy!

· PODCASTS! “Practicing human with Cory Muscara”, “Happier with Gretchen Rubin”,

· Funny things: “coronials”, toilet paper memes, quarentinis

· ZOOM PARTIES!

· Gratitude journaling: toilet paper, comfy clothes, HEALTH HEALTH HEALTH despite being in more pain, parents

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“IT'S IMPORTANT THAT PEOPLE KNOW THAT IT IS GOING TO BE OK AND THAT THERE IS IS POSSIBILITY"'

• Jodi Taub

Jodi Taub, LCSW is a psychotherapist in NYC (currently providing telehealth only due to COVID-19). She has over 20 years of direct care experience with children, adolescents, and adults including individuals, couples, family, and group therapy. She specializes in treating issues related to Mood and Anxiety Disorders as well as the emotional issues that arise from coping with Chronic Illness.

Jodi is also an expert lecturer, public speaker, published writer, researcher and active contributing member of the Immune Deficiency Foundation.

➡️ visit https://www.joditaubtherapy.com/

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Know that most people have something going on in their life that is challenging, and they have their battles. For some it may be mental illness, the loss of a loved one, cancer, heart disease, financial stress / job loss. This isn’t to make you feel better about Fibromyalgia, but to make you feel better that you are not alone.-

• Dr. Casey Sinclair

EPISODE LINKS

Website:

www.familyhealthadvocacy.com + https://www.streetsvillechiropractic.com/

Instagram: @drs.sinclair —> https://www.instagram.com/drs.sinclair/

PRE ORDER/ORDER NOW! BOOK: ‘FREE YOURSELF FROM THE SHACKLES OF FIBROMYALGIA’

Other Links

Brene Brown’s talk with Tim Ferris (SO AMAZING, A MUST LISTEN!)

GUEST QUESTIONS

What is your profession?

Chiropractors & Functional Medicine Practitioners

What’s your business?

Our private practice is called Streetsville Chiropractic & we are also co-founders of Family Health Advocacy.

What types of patients/conditions do you work with?

We work with patients who are of all ages that come in for general wellness and those with a myriad of conditions. Many patients come to us experiencing chronic pain of various causes and among them, people who are suffering with Fibromyalgia.

What makes your approach to care unique?

We take a natural approach to healing. We believe that the body has an ability to heal if given the opportunity to however we understand that is more difficult for some people than others. We look at the entire body and how it is connected as a whole. Emotional, chemical and physical stress causes interference to the body’s ability to heal. We help patients identify and peel back the layers of healing interference.

How did illness shape your career?

For Casey, his injury and chronic pain brought his empathy to the next level and allows his him to relate to people who struggle with their simple tasks of daily life.

What do/did you do when you don’t know what to do about patient?

We have a strong network of practitioners that we are connected with through Family Health Advocacy in addition to having the two of us plus our father and brother who are also natural healthcare practitioners. We use this network to bounce ideas, share success stories and motivate each other to serve greater. It’s easy to get a 2nd opinion within our clinic but also from other practitioners.

Are/were you open about your illnesses with your patients?

Absolutely. We are very transparent with our patients and community. We prefer to be authentic and honest. We find this builds stronger relationships which is what life is all about.

What does “trust” mean to you in the patient-practitioner relationship?

Trust means that the patient knows that unconditionally the doctor will provide a non-judgement, safe and loving space for the patient to be comfortable and open in. We tend to attract these types of relationships with our patients. They tell us everything, sometimes even unrelated to conditions they present with and that we know they haven’t told anyone else. We feel that it’s an honor to serve them and we treat the relationship like its sacred. Our patients know we will go to bat for them!

What are you most passionate about in regard to your work/helping people? We are passionate about getting results and celebrating them every step of the way. This is what drives us and our team.

How do/did you handle being a practitioner, patient and personal life?

We have a unique set up in that we spend most weekends together at the cottage and can debrief the week or bounce ideas off of each other. So even when we leave the office, we have an outlet to express emotions, ideas, frustrations, stories that we experienced during the busy week prior. If a patient is in need or urgent care, between the three of us (Casey, Morgan & our father) we are able to deliver support. However, most of the time, when we are not at the office, we check out and indulge in hobbies we love and are passionate about. For Casey, he has a partner, 2 kids and a dog. He enjoys running, playing hockey, golfing, surfing, boating and reading. For Morgan, she is married and 6 months pregnant. She runs a dog rescue charity, enjoys doing interval training, wake surfing, long boarding and spending time with her two rescue dogs. To be honest, it took us awhile to get work-life balance in our life. For many years we were work horses and were unstoppable. Thankfully life experience and wisdom has brought us to a more balanced life.

Do you tell your patients what you tell yourself/do you practice what you preach?

For the most part. 80% yes. We are Not perfect and there is room for improvement. It is nice that we can hold each other accountably otherwise we may not be 80% there J

How do you research conditions? On your own? Drug companies? Medical journals? Colleagues?

How do you convey this knowledge to patients?

We research on our own. We do read peer reviewed research. We came out of chiropractic college and functional medicine university with a lot of knowledge. However, we learn additional details or information through research ourselves. We discuss what we have learned on a weekly basis.

Tell us about a special experience with a patient that you found to be inspiring.

Page 38 in our book is Lucas’s Testimonial. Pretty moving experience, he had with Fibromyalgia!

We focused on removing nerve interference when Lucas would come into the office. We educated him on mindset, nutrition, exercise and toxicity and guided him through the small steps to take to remove healing interference and making his body a healing machine. We provided him hope, when no one else would.

What is one message you want to send out to every chronic illness patient out there?

Have HOPE, and if you can’t, find someone to have hope for you! This is usually the case with many patients when they walk into our office.

Also know that most people have something going on in their life that is challenging, and they have their battles. For some it may be mental illness, the loss of a loved one, cancer, heart disease, financial stress / job loss. This isn’t to make you feel better about Fibromyalgia, but to make you feel better that you are not alone.

BONUS Q’s

What purchase of $100 or less has most positively impact your life in the last 6 months? Or in

recent memory?

For Casey, 3 pairs of sunglasses for $30 on Amazon. They feel great, they look great. Morgan liked them so much, she bought two packs. We both were constantly losing sunglasses so we decided spending money on them resulted in us feeling frustrated when we misplaced them. Now we have little attachment to these!

In the last 5 years, what new belief, behavior or habit has most improved your life?

Casey: Intermittent fasting.

If you could have a giant billboard (metaphorically speaking) that could get a message out to

millions or billions of people, what would it say and why? It could be a few words, a sentence or

a few. It can be your quote or, if helpful, someone else’s quote. Are there any quotes you think of

often or live your life by?

“You never know how far reaching something you think, say or do today, will affect the lives of millions tomorrow.” -BJ Palmer

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"We’re all put on this earth for different reasons…when things get hard, don’t give up" - Hannah Olson

SITE: https://www.wearecapable.org/
IG: @hanrosols @chronicallycapable
TW: @hanrosols @chroniccapable
FB: https://www.facebook.com/chronicallycapable/

Today my guest is Hannah Olson. She is the co-founder and CEO of Chronically Capable, a platform that connects people with chronic illness or disability to flexible work opportunities.

Hannah’s own experience navigating her career while undergoing intensive treatment for Lyme disease sparked the idea for her company, which was founded last year in Washington, D.C. Recently Hannah and Chronically Capable were featured in Forbes, Fast Company, and HR Dive. (Not too shabby!)

GUEST QUESTIONS

What is/are your disorder(s) (illness/condition/ailment)?

Chronic Lyme

Is there anything you are afraid to tell people in your life?

I think I’m afraid to admit my fear of failing. There’s a lot of pressure for me to succeed (both internally and from the people around me) so I really just don’t want to fuck up.

What is your best coping mechanism?

Taking breaks!!!!!

What is the hardest and/or best lesson your disorder has taught you?

You can do whatever the fuck you want and use your neg experience to do good in this world!!! (Lots more to say)

What are you the most concerned about and the most hopeful for in the future?

I'm most concerned about not getting funding and failing. I have a lot of internal pressure and I just cannot fail. I'm most hopeful for taking this bad larry to the next level and continuing to create systemic change for my community.

In your opinion, in what way does the health system work for patients? In what way does it fall short / require improvement?

lots to say, quick talking points:

-im grateful that we do have a health system in the first place but generally speaking its pretty flipped

-invisible illnesses are called invisible for a reason

-every dr will tell you something different -insurance sucks

What are your top 3 tips for someone who is undiagnosed but they know that something is “off”?

1. listen to your body

2. dont give up on your quest for answers

3. it might take time to figure shit out, so try to be patient

BONUS: Rapid-Fire Questions

CREDIT: Tim Ferriss Podcast

What purchase of $100 or less has most positively impact your life in the last 6 months? Or in recent memory?

my one night solo getaway during COVID

How is a failure (or a perceived failure) set you up for success? Do you have a “favorite failure?” of yours?

It makes me want to get back up and try again. I'm know if I'm have a fav failure but I'm been turned down by a lot of investors. I'm gonna keep trying though

If you could have a giant billboard metaphorically speaking that could get a message out to millions or billions of people, what would it say and why? It could be a few words, a sentence or a few. It can be your quote or, if helpful, someone else’s quote. (i.e. Is there any quote you think of often or live your life by?)

It's nice to be nice to the nice.

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I’m Eva Minkoff - a chronic illness warrior, #Spoonie, person with a chronic illness – whatever you wanna call me, and I have fibromyalgia and hypermobility syndrome (possibly EDS, but still figuring that one out).

I have been passionate about health since a young age and I have dabbled in the professional world of health for over a decade with degrees in neuropsychology, nutrition science and working in clinical, laboratory, corporate and startup healthcare.

At the same time, for the past 20 years I have been living with chronic illness, and for the first 10 of those 20 years, I went undiagnosed. I was confused and in pain with no answers for 10 years all while being called a hypochondriac and bouncing around from doctor to doctor around Manhattan. At the time I had also been professionally training as a ballet dancer and therefore was deemed a drama queen without the recognition that my love for ballet may actually have been leading me to suffer physically, mentally and emotionally. Once I was finally diagnosed the search for the right support was still a huge struggle and I found that at the foundation of my struggle to find the right diagnoses and the right care had one big, fundamental issue in common: HUMAN connection.

We often don’t give enough credit to the influence of the relationship between a doctor and a patient in terms of proper care including diagnosis, treatment and outcomes. There is more than enough research out there that without a doubt demonstrates the impact of a positive vs a negative doctor-patient relationship. These interactions (short or long term) have the ability to shape our overall health as patients but also the quality of life of the health professionals on the other end.

In this podcast, I aim to lift the veil over the blinded eyes of healthcare from both sides. Patients are people. Practitioners are people. As people we have our humanity in common and it’s time that we started treating our interactions as those with humanity in common.

As a quick disclaimer, I love doctors. Not all, but in general, I have enormous respect for them. I wanted to be a doctor, I have many friends who are doctors, hell I even ended up marrying a doctor! So its important to note that I don’t choose sides. Like I said, we’re all people with humanity in common, which means that our default is to live in our own worlds and sometimes that leads to making mistakes.

The conversations in this podcast are meant to challenge the status quo of ALL relationships related to our healthcare journey. The Relationships with our healthcare providers, the relationships with our friends and family, the relationships with our colleagues, and in my mind most importantly, the relationships we have with ourselves along our health journey.

In fact, in every episode we touch upon the relationship to ourselves – if not focus on it fully – because that is a non-negotiable relationship. In my opinion, understanding yourself as human and being compassionate to yourself as human is the best thing you could ever do for your health.