86. The Unfair EDS Journey with Amanda Cassil, PhD

It's YOUR time to access information that #BendyBodies need, crave, and deserve. Medical insights, science-based information, inspiring stories, empathy and support, hypermobility hacks, and news you can use.

In this episode, psychologist Dr. Amanda Cassil discusses the unfair EDS journey (Ehlers-Danlos Syndromes) and provides strategies for effectively communicating with healthcare providers.

YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD.

Takeaways

Approach advocacy from a place of compassion and understanding
Regulate your nervous system and slow down to make more intentional and strategic decisions
Acknowledge and process grief as a natural part of living with chronic illness
Consult with trusted individuals and healthcare providers for guidance and support.
Collaboration between patients and healthcare providers can be challenging due to the merging of different knowledge and experiences.
Patients can advocate for themselves by asking doctors how to prioritize and address multiple symptoms and issues.
Dialectical behavioral therapy (DBT) is an effective tool for nervous system and emotional regulation.
Patients should remember that their medical journey is often unfair, but there are healthcare providers working to make systemic changes.


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Chapters ➡

00:00 Introduction
01:04 Motivation for Giving the Talk at the EDS Society Global Conference
04:14 Advocacy and the Challenges of the Healthcare System
07:16 Approaching Advocacy without Blame
10:27 Grief and Acceptance in Chronic Illness
13:34 Key Takeaways from the Talk
18:04 The Role of the Prefrontal Cortex in Chronic Illness
19:12 Neurodiversity and Advocacy
20:12 Presenting Research to Doctors
23:02 Dealing with Suboptimal Experiences with Clinicians
26:09 Processing Traumatic Experiences
29:16 The Role of Grief in Chronic Illness
36:09 Coping with Traumatic Experiences
40:36 Presenting Research to Doctors (Continued)
46:27 Navigating the Challenges of Collaboration
48:07 Addressing Multiple Symptoms and Issues
53:42 Dialectical Behavioral Therapy (DBT) for Nervous System and Emotional Regulation
59:41 Finding Your Way Through an Unfair Journey

Connect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.

Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them.

Join YOUR Bendy Bodies community at www.BendyBodiesPodcast.com.

YOUR bendy body is our highest priority! 🧬🔬🦓

Resources mentioned during the episode:

https://www.STEMpsychology.com

  / stempsychology  

  / drcassil  

https://drgabormate.com/book/the-myth...

https://www.resmaa.com/merch

https://www.besselvanderkolk.com/

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⭐⭐⭐ About Bendy Bodies Podcast ⭐⭐⭐

Do you perform contortionist-like party tricks? Are you known as “Gumby” by your friends and family? Being “double-jointed” can create problems all throughout the body. Connective tissue disorders, like Ehlers-Danlos Syndromes (EDS), cause life-altering symptoms rarely recognized by doctors. Pain, frequent injury, joints “giving way”, fatigue, gastrointestinal problems, and insomnia are just some common issues. Hosted by EDS expert, Dr. Linda Bluestein, MD, the Bendy Bodies podcast covers topics relevant to everyone with symptomatic joint hypermobility. Learn from specialists with diverse expertise and optimize your hypermobile health!

#HealthJourney #ChronicIllness #EhlersDanlos #HypermobileLife #MedicalGaslighting
#BendyBuddy #HypermobilityMD #BendyBodies #HealthAdvocacy #SupportPatients #HealthcareStruggles