January 18, 2024

86. The Unfair EDS Journey with Amanda Cassil, PhD

1 hour 8 minutes

In this episode, psychologist Dr. Amanda Cassil discusses the unfair EDS journey (Ehlers-Danlos Syndromes) and provides strategies for effectively communicating with healthcare providers. Dr. Cassil provides valuable insights and tools for navigating the healthcare system and improving the quality of life for individuals with chronic illnesses. In this conversation, Dr. Amanda Cassil and Linda Bluestein, MD discuss the challenges faced by patients with hypermobility disorders (like Ehlers-Danlos Syndromes) and chronic illnesses.

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.

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

This important conversation with Dr. Amanda Cassil about the unfair EDS journey will leave you feeling better equipped to handle difficult medical encounters.

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 https://www.bendybodiespodcast.com/.

YOUR bendy body is our highest priority!

Resources mentioned during the episode:

https://www.STEMpsychology.com

https://www.instagram.com/stempsychology/

https://www.linkedin.com/in/drcassil

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

https://www.resmaa.com/merch

https://www.besselvanderkolk.com/

#HealthJourney #ChronicIllness #ChronicPain #EhlersDanlos #HSD #JointHypermobility #HypermobileLife #MedicalGaslighting

#BendyBuddy #HypermobilityMD #BendyBodies #HealthAdvocacy #SupportPatients #PatientEmpowerment #HealthcareStruggles #WomenInStem #DisabledInStem

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By Dr. Linda Bluestein

4.9

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