Humancare

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.

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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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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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

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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.”

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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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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.

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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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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.

(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.

CLICK HERE FOR FULL TRANSCRIPT.

PLEASE SUPPORT US BY: 

SHARING WITH LOVED ONES 😍

SUBSCRIBING + LEAVING A RATING & REVIEW 👍