The Invisible Struggle: Unveiling the Realities of Living with Ehlers-Danlos Syndrome

Author

Maura A. Stewart, Institute for Clinical Social WorkFollow

Graduation Semester and Year

Spring 2025

Language

English

Document Type

Thesis

Degree Name

Master of Social Work

Department

Social Work

First Advisor

Regina Praetorius

Second Advisor

Karla Arenas-Itotia

Third Advisor

Craig Keaton

Abstract

Ehlers-Danlos Syndrome (EDS) is a group of rare connective tissue disorders that impact multiple systems of the body and are frequently misunderstood or misdiagnosed. This thesis explores the lived experiences of adults with EDS, focusing on the physical, emotional, and systemic challenges they face in daily life and healthcare. Using a mixed-methods survey, data were collected from 83 participants across the United States and beyond. The results revealed common themes of delayed diagnosis, medical dismissal, mental health struggles, and lack of access to knowledgeable providers. While chronic pain and fatigue were the most frequently reported symptoms, participants also described emotional exhaustion, financial strain, and isolation. Many reported never working with a social worker or receiving adequate mental health support. Despite these challenges, themes of resilience and self-advocacy emerged. This study emphasizes the need for earlier diagnosis, interdisciplinary care, and greater inclusion of social work and mental health professionals in the treatment of EDS. By centering patient voices, this research calls for a more compassionate and informed approach to supporting individuals with EDS.

Keywords

Ehlers-Danlos Syndrome, hypermobile EDS, chronic illness, patient experience, medical gaslighting, delayed diagnosis, rare disease, healthcare access, social work, mental health in chronic illness

Disciplines

Counseling | Disability Studies | Social Work

License

This work is licensed under a Creative Commons Attribution 4.0 International License.

Recommended Citation

Stewart, Maura A., "The Invisible Struggle: Unveiling the Realities of Living with Ehlers-Danlos Syndrome" (2025). Social Work Theses. 214.
https://mavmatrix.uta.edu/socialwork_theses/214