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 CallThis 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
LibsynYou 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.
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!
@HUMANCARE_PODCAST
@DRLEEPHILLIPS
@DZONEPODCAST
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Missing episodes?
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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
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
@DRLEEPHILLIPS
@DZONEPODCAST
@EXPLICITLYSICK
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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?
CLICK HERE FOR FULL TRANSCRIPT.
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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.
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
@DRLEEPHILLIPS
@DZONEPODCAST
@EXPLICITLYSICK
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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
@DRLEEPHILLIPS
@DZONEPODCAST
@EXPLICITLYSICK
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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: @stephanietaitwritesBONUS 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.
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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: @stephanietaitwritesBONUS 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.
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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 otherHow 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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