Avoiding the Doctor: Living with EDS and the Fear of Judgment
For four weeks, I dealt with relentless nosebleeds—bad ones every other day. Yet, I avoided the doctor. Why? Because living with Ehlers-Danlos Syndrome (EDS) isn’t just about managing symptoms—it’s also about managing how you’re perceived.
I didn’t want to walk into a doctor’s office, explain the bleeding, and feel that unspoken judgment: Are they lying about the cause? EDS is a rare condition, and for many of us, that rarity translates to skepticism. Chronic nosebleeds aren’t unusual with EDS, but convincing someone that it’s not due to drug use or some other fabricated excuse can feel impossible.
It’s not that I don’t trust doctors’ medical knowledge—I do. But it’s hard to put yourself in a position where you have to prove your honesty while also seeking help for your health. Living with EDS already means fighting to manage a body that doesn’t work as it should. The last thing I want is to fight for credibility on top of that.
So I waited. I managed the nosebleeds myself because sometimes, it feels safer to avoid judgment altogether than to risk being dismissed, even silently. For those of us with rare conditions, healthcare is rarely straightforward.
To anyone else in this position: I see you. I get it. It’s okay to struggle with seeking help. But it’s also okay to remind yourself—you deserve to be cared for, without judgment. Let’s keep pushing for the understanding we need and deserve.
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