Abstract
Hypermobile Ehlers Danlos Syndrome (hEDS) is a subgroup of connective tissue disorders, characterized by widespread joint pain, frequent subluxations and dislocations,
gastrointestinal distress, and neurological manifestations (Gensemer et al., 2021). As a disorder with no known gene association, diagnosis relies fully on clinical assessment, putting pressure on physicians to learn the signs and symptoms. Given the multi-system nature of the disorder, physicians are historically undereducated about hEDS and how to diagnose it. Patients with hEDS wait an average of 14 years between symptom manifestation and when they receive a formal diagnosis, oftentimes seeing dozens of physicians in the interim (Eurordis et al., 2009). This delay can cause tensions in doctor/patient relationships among those with hEDS. This study seeks to retrospectively explore reflections on the diagnosis journey as it pertains to the doctor-patient relationship from the perspective of both those diagnosed with hEDS and those who treat it. Through semi-structured interviews, clear timelines of each parties’ awareness and introduction into hEDS was established. Physicians expressed themes of frustration with their peers, a sense of respect and responsibility towards their patients, and an awareness of their role as pioneers in the field. Patients showed frustration towards physicians and the diagnosis journey as a whole. Many expressed signs of medical trauma and lingering emotional turmoil due to frequent dismissal of their symptoms in the doctor’s office. Establishing a better understanding of the doctor/patient relationship among those with hEDS offers important insights for the future of doctor/patient relationships as a whole.