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...
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| Format: | Article |
| Language: | English |
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Springer
2025-08-01
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| Series: | Discover Mental Health |
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| Online Access: | https://doi.org/10.1007/s44192-025-00268-5 |
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| author | Jessica D. Locke Jason T. Eastman |
| author_facet | Jessica D. Locke Jason T. Eastman |
| author_sort | Jessica D. Locke |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-ffdef6be3e3c43af930f626513ae5bb9 |
| institution | Kabale University |
| issn | 2731-4383 |
| language | English |
| publishDate | 2025-08-01 |
| publisher | Springer |
| record_format | Article |
| series | Discover Mental Health |
| spelling | doaj-art-ffdef6be3e3c43af930f626513ae5bb92025-08-20T03:46:54ZengSpringerDiscover Mental Health2731-43832025-08-015111410.1007/s44192-025-00268-5Navigating the psychosocial landscape of Ehlers–Danlos syndrome: an autobiographic case studyJessica D. Locke0Jason T. Eastman1Independent ResearcherCoastal Carolina UniversityAbstract 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.https://doi.org/10.1007/s44192-025-00268-5Rare disordersEhlers–Danlos syndrome (EDS)Psychosocial impactChronic painStigma and isolation |
| spellingShingle | Jessica D. Locke Jason T. Eastman Navigating the psychosocial landscape of Ehlers–Danlos syndrome: an autobiographic case study Discover Mental Health Rare disorders Ehlers–Danlos syndrome (EDS) Psychosocial impact Chronic pain Stigma and isolation |
| title | Navigating the psychosocial landscape of Ehlers–Danlos syndrome: an autobiographic case study |
| title_full | Navigating the psychosocial landscape of Ehlers–Danlos syndrome: an autobiographic case study |
| title_fullStr | Navigating the psychosocial landscape of Ehlers–Danlos syndrome: an autobiographic case study |
| title_full_unstemmed | Navigating the psychosocial landscape of Ehlers–Danlos syndrome: an autobiographic case study |
| title_short | Navigating the psychosocial landscape of Ehlers–Danlos syndrome: an autobiographic case study |
| title_sort | navigating the psychosocial landscape of ehlers danlos syndrome an autobiographic case study |
| topic | Rare disorders Ehlers–Danlos syndrome (EDS) Psychosocial impact Chronic pain Stigma and isolation |
| url | https://doi.org/10.1007/s44192-025-00268-5 |
| work_keys_str_mv | AT jessicadlocke navigatingthepsychosociallandscapeofehlersdanlossyndromeanautobiographiccasestudy AT jasonteastman navigatingthepsychosociallandscapeofehlersdanlossyndromeanautobiographiccasestudy |