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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:
#HealthJourney #ChronicIllness #ChronicPain #EhlersDanlos #HSD #JointHypermobility #HypermobileLife #MedicalGaslighting
#BendyBuddy #HypermobilityMD #BendyBodies #HealthAdvocacy #SupportPatients #PatientEmpowerment #HealthcareStruggles #WomenInStem #DisabledInStem
Creators & Guests
What is Bendy Bodies with the Hypermobility MD, Dr. Linda Bluestein?
Connective tissue disorders, like Ehlers-Danlos Syndromes (EDS), have far-reaching consequences. Multi-systemic symptoms affect quality of life -- with pain, frequent injury, joints “giving way," fatigue, headache, gastrointestinal problems, and insomnia being common. Welcome to Bendy Bodies with the Hypermobility MD, with your host and founder, Linda Bluestein, MD. Learn from specialists with diverse areas of medical and scientific expertise. Conversations cover topics relevant to everyone with symptomatic joint hypermobility (EDS, HSD, Marfan's). Learn to optimize your hypermobile health!