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, YOUR guest is Colin Halverson, PhD.  He received his Ph.D. in linguistic and medical anthropology from the University of Chicago, where he studied communication issues in medical genetics, based on fieldwork at Mayo Clinic. At Chicago, he also completed a fellowship in clinical ethics, and then a postdoctoral fellowship in medical ethics at Vanderbilt. He is currently a professor at Indiana University School of Medicine, where his research focuses on ethical care for patients with rare disease, in particular Ehlers-Danlos Syndrome (EDS).YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD.Takeaways
Patients with Ehlers-Danlos syndrome often face an antagonistic relationship with healthcare professionals, leading to mistrust and negative health outcomes.
The diagnostic odyssey experienced by patients with EDS can be likened to a hero's journey, characterized by challenges, misdiagnoses, and a long path to diagnosis.
The panoply of symptoms in EDS and the complexity of chronic pain make it difficult for patients to describe their experiences and receive appropriate care.
Clinician-associated traumatization is a distinct construct that captures the negative experiences and trauma patients with EDS face in their interactions with healthcare professionals.
Building a trustworthy team of clinicians and seeking support from the EDS community can help patients navigate the challenges of their condition and improve their healthcare experiences.
Chapters00:00 Introduction00:29 Dr. Halverson's Background and Research Interest03:02 The Hero's Journey of Patients with Ehlers-Danlos Syndrome05:51 Challenges Faced by Patients with Ehlers-Danlos Syndrome07:02 Antagonistic Relationship with Healthcare Professionals08:29 Impact of Antagonistic Relationship on Patients09:47 Triggers for Transition into Unbearable Symptoms12:36 The Panoply of Symptoms in Ehlers-Danlos Syndrome13:44 Importance of Panoply of Symptoms in Diagnosis15:22 Challenges in Describing Multi-Systemic Symptoms16:26 Numeric Pain Scales and the Complexity of Chronic Pain19:40 Research on Hypermobile Ehlers-Danlos Syndrome20:39 Research on Other Forms of Ehlers-Danlos Syndrome23:56 Failure of Empathy in Patient-Provider Relationships27:24 Worse Health Outcomes and Trust Issues28:06 Impact of Failure of Empathy on Patients30:33 Dealing with Antagonistic Relationships31:45 The Isolation and Invisibility of Ehlers-Danlos Syndrome36:12 Clinician-Associated Traumatization and its Differences from Other Constructs39:21 Surprising Aspects of the Research42:01 Recommendations for Patients with Clinician-Associated Traumatization45:01 Future Directions of Research49:04 Closing RemarksThis important conversation with Dr. Halverson about clinician-associated trauma in patients with Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorder (HSD) will leave you feeling better prepared to advocate for the care you need.  Connect with YOUR Bendy Specialist, Linda Bluestein, MD! 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!Products, organizations, articles, and services mentioned in this episode:https://bioethics.iu.edu/people/colin-halverson.htmlhttps://pubmed.ncbi.nlm.nih.gov/34524722/https://doi.org/10.1016/j.ssmqr.2023.100237Dr. Halverson can be reached at chalver@iu.edu.#InvisibleIllness #HealthJourney #PatientAdvocacy #ChronicIllness #ChronicPain #EhlersDanlos #HSD #JointHypermobility #HypermobileLife #BendyBuddy #HypermobilityMD #BendyBodie