When I received my hypermobile Ehlers-Danlos syndrome (hEDS) diagnosis, I walked out of the doctor’s office with a strange sense of validation and hope. Finally, I had an explanation for my symptoms—and, perhaps naively, I imagined sharing this news with my family would be a moment of collective acceptance. I wanted them to know about hEDS, since it’s genetic and could affect their health or future generations. In my mind, group chats would buzz with medical articles, physical therapy tips, and maybe even a little mutual commiseration. I pictured a journey we’d share.
Reality, however, had other plans.
I broke the news to my family while they were on a European vacation, thinking that the novelty of travel and distance from daily routine might inspire some open-mindedness. Maybe, I thought, miles apart, we’d finally bridge the gap between medical facts and family myths. But when I told a family member about my diagnosis, their response was a simple thumbs-up emoji—and the suggestion that, if they ever needed surgery, it might be wise to mention a first-degree relative with hEDS. That was my first clue my imagined family medical summit was pure fantasy.
Once they were back home, we met for a meal, and I tried again. I explained that, according to my research, hEDS is likely linked to my autism and that both traits probably come from their side of the family. What followed was the most baffling genetics conversation I’ve had. Suddenly, a relative I’m not even related to was proposed as the source of my hEDS, as if the diagnosis were some sort of airborne contagion that skipped family trees. In that moment, I realized we weren’t going to share a reality about genetics—or much else in the realm of medical facts.
hEDS isn’t the most critical form of Ehlers-Danlos syndrome, and from what I’ve read, it’s among the more commonly diagnosed. But in my family, it’s apparently a spontaneous mutation that appeared in me and only me. Despite a plethora of symptoms that could easily be traced across our family tree, I remain, officially, the only one with hEDS.
I’ve had to accept that my vision of a supportive, mutually invested family group chat was a fantasy—unicorns and all. Instead, I’m left with a solitary reality: managing my diagnosis alone, booking appointments with specialists, experimenting with supplements, dutifully following prescribed exercises.
I understood, on some level, that coming to terms with my autism would be a personal journey. But I assumed a genetic connective tissue disorder—something so clearly medical—would be different. I expected solidarity. Instead, I’m learning to let go of expectations and turn inward, focusing on my own care, research, and path to understanding.
If there’s anything I’ve learned, it’s that sometimes the support you imagine simply isn’t there, and the journey becomes yours alone. While that’s not what I wanted, it’s the reality I have—and I’m learning to live with it.
What’s most frustrating is seeing family members struggle with health issues that, through the lens of my hEDS diagnosis, suddenly make sense. Symptoms or patterns that were always brushed off as “just the way things are” now look like pieces of a much bigger, genetic puzzle. Yet these experiences are still explained away or labeled as normal. It’s hard to watch, knowing that what’s dismissed or normalized in my family could actually be signs of the same condition. But I also have to respect that everyone has their own way of understanding their health—even when what I see feels so clear.
Ultimately, sharing my diagnosis has taught me more about acceptance than I expected—just not in the way I hoped. I’ve learned to build my own support systems and find comfort in communities that understand. I’m deeply grateful for the wonderful professionals who have helped me along the way, and for the supportive community I’ve found so far. My journey with hEDS is still unfolding, shaped by both solitude and resilience. And while my family may never see the full picture, I also know this: it’s never too late to get the medical care you need, and it can make a substantial difference in your quality of life.
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