My journey with hypermobile Ehlers-Danlos Syndrome (hEDS) has been one of persistence, adaptability, and learning to find strength in vulnerability. While often misunderstood as a benign condition, hEDS has brought challenges that have touched every part of my life—from mobility and energy to internal health—proving it is anything but trivial.
I’ve served as a Licensed Clinical Social Worker in the U.S. Navy, stationed overseas, and have always been passionate about helping others reclaim their voices. Over time, I’ve realized that in doing so, I’ve also reclaimed my own.
For much of my life, I didn’t see myself as “chronically ill.” There were moments- knee instability as a child, a sudden and nearly life-threatening gastrointestinal surgery, occasional fainting- but I viewed them as isolated incidents. It wasn’t until years later, when chest pain, rib subluxations, and unrelenting fatigue became part of daily life, that I began to understand the bigger picture.
Seeking answers was challenging. My symptoms were often met with “everything looks normal” or “it’s probably anxiety.” At times I felt dismissed and unseen. The turning point came while visiting family stateside. Because of ongoing symptoms, I decided to make the rounds with a few specialists. One call to the genetics department at my hometown’s major hospital set the wheels in motion.
The specialist listened closely, examined me, ordered genetic testing, reviewed my history, and finally connected the dots: “Your exam suggests hypermobile Ehlers-Danlos syndrome.” It wasn’t until later, as I began learning how to advocate for myself and others, that I discovered my geneticist listed in The Ehlers-Danlos Society’s own “Find a Provider” directory. That moment felt like confirmation that I was exactly where I needed to be.
Living with hEDS means adapting every part of my life – work, social activities, and even basic routines- to the realities of pain, fatigue, and unpredictability. But it’s also given me purpose. I’m committed to raising awareness in the military, medical, and mental health communities about the complexity of connective tissue disorders, encouraging earlier recognition and better care.
Despite the challenges, I remain proud of my service and grateful for the perspective hEDS has helped me build. My hope is that sharing my story will remind others—patients, providers, and peers alike—that what we can’t see can still be very real, and that compassion and understanding can change everything. – Jacqueline
