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.

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