82. The Impact of Clinician-Associated Trauma on EDS and HSD with Colin Halverson, PhD

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. Chapters 00:00 Introduction 00:29 Dr. Halverson's Background and Research Interest 03:02 The Hero's Journey of Patients with Ehlers-Danlos Syndrome 05:51 Challenges Faced by Patients with Ehlers-Danlos Syndrome 07:02 Antagonistic Relationship with Healthcare Professionals 08:29 Impact of Antagonistic Relationship on Patients 09:47 Triggers for Transition into Unbearable Symptoms 12:36 The Panoply of Symptoms in Ehlers-Danlos Syndrome 13:44 Importance of Panoply of Symptoms in Diagnosis 15:22 Challenges in Describing Multi-Systemic Symptoms 16:26 Numeric Pain Scales and the Complexity of Chronic Pain 19:40 Research on Hypermobile Ehlers-Danlos Syndrome 20:39 Research on Other Forms of Ehlers-Danlos Syndrome 23:56 Failure of Empathy in Patient-Provider Relationships 27:24 Worse Health Outcomes and Trust Issues 28:06 Impact of Failure of Empathy on Patients 30:33 Dealing with Antagonistic Relationships 31:45 The Isolation and Invisibility of Ehlers-Danlos Syndrome 36:12 Clinician-Associated Traumatization and its Differences from Other Constructs 39:21 Surprising Aspects of the Research 42:01 Recommendations for Patients with Clinician-Associated Traumatization 45:01 Future Directions of Research 49:04 Closing Remarks This 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 https://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.html https://pubmed.ncbi.nlm.nih.gov/34524722/ https://doi.org/10.1016/j.ssmqr.2023.100237 Dr. Halverson can be reached at chalver@iu.edu . #InvisibleIllness #HealthJourney #PatientAdvocacy #ChronicIllness #ChronicPain #EhlersDanlos #HSD #JointHypermobility #HypermobileLife #BendyBuddy #HypermobilityMD #BendyBodies #EhlersDanlosResearch #MedicalGaslighting #PatientSupport #ResearchOpportunity #DiagnosticJourney Learn more about your ad choices. Visit megaphone.fm/adchoices