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.”

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

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.