Navigating the psychosocial landscape of Ehlers-Danlos syndrome: an autobiographic case study

Abstract

Living with a rare disorder, such as Ehlers-Danlos Syndrome (EDS), presents unique psychosocial challenges. This autobiographical case study explores the psychological, social, and professional impacts of navigating life with hypermobile EDS (hEDS), a condition marked by chronic pain, joint instability, and diagnostic uncertainty. Placing personal experiences into the context of clinical findings and research, this study highlights both the physical and emotional toll of the syndrome, including stigma, isolation, and medical gaslighting often accompanying rare conditions. The first-person case study of the first author extracted by the second author experienced in qualitative interviewing provides a first-hand account of the importance of addressing the psychosocial dimensions of rare disorders to foster understanding, empathy, and systemic improvements in patient care. In addition to calls for more encompassing medical care, this work also advocates for increased access to psychosocial support and recognition of the broader implications of living with rare, often invisible conditions.

Keywords: Chronic pain; Ehlers–Danlos syndrome (EDS); Psychosocial impact; Rare disorders; Stigma and isolation.