Document Type
Article
Publication Date
8-17-2025
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.
This article was published Open Access through the CCU Libraries Open Access Publishing Fund. The article was first published in the journal Discover Mental Health: https://doi.org/10.1007/s44192-025-00268-5
Creative Commons License
This work is licensed under a Creative Commons Attribution 4.0 International License.
Recommended Citation
Locke, J.D., Eastman, J.T. Navigating the psychosocial landscape of Ehlers–Danlos syndrome: an autobiographic case study. Discover Mental Health 5, 123 (2025). https://doi.org/10.1007/s44192-025-00268-5. Available at https://digitalcommons.coastal.edu/sociology/3/