When Advocacy Meets Reality: The Hard Truth About Disclosure

There are laws in place to protect people from having to disclose their medical conditions. They exist for a reason—to prevent bias, stigma, and unnecessary scrutiny. In theory, these laws ensure that people with medical conditions are judged based on their abilities, not their diagnoses. And yet, I still find myself disclosing mine, thinking that honesty will foster understanding and awareness. I should have learned by now, but maybe I’m just naïve.

I share, hoping for compassion and for people to see me rather than just my condition. But the reality is that most don’t separate the two. They look at the “whole picture,” and unfortunately, that picture often includes their misconceptions. I live with TNXB-associated Ehlers-Danlos Syndrome and its comorbidities, a rare disorder with specific, manageable triggers. It’s no different than a person with diabetes having to adjust for low blood sugar—sometimes, I need to adapt my routine, but it doesn’t mean I’m incapable or a safety concern. Yet, because my condition is rare and not well understood, it’s stigmatized. Instead of seeing it as something I effectively manage, people see unpredictability, risk, or weakness.

So, hopefully, I’ve learned—reluctantly—that while I want to be an advocate and fight for change, I can’t do it and hold a full-time job without facing the consequences of disclosure. The world isn’t ready for that level of openness. My fight for awareness will have to exist separately from my career, even though the two are intrinsically connected.

That doesn’t mean I’ll stop advocating. It means I have to be more thoughtful about how I do it. Increasing awareness about rare diseases like Ehlers-Danlos Syndrome is crucial, not just for those of us who live with them, but for society as a whole. Education leads to change, and change leads to a world where people don’t have to choose between their health and their livelihood. Maybe one day, disclosing won’t feel like a risk.