2:06 PM — Coming Out
I've been starting to "come out" to people about my disease HS (hidradenitis suppurativa). I've heard the term "hidden disease" or "hidden disability," and for some people it really is. It's not at the level for disability, but it is a burden at times, and I think the primary thing that makes me uncomfortable about telling people about it is that they won't take it seriously.
"What's the big deal? It's just pimples. Quit being a wimp." That's what I'm worried they're thinking, though they won't say it, and I wouldn't tell anyone who would. I even worry that my close friends and boyfriend think that.
It's not just pimples. I've been on antibiotics for three weeks now to try and prevent an outbreak. I was rejected from donating blood because of that. Thursday, at the end of a hard day, I discovered that one of my "normal" cysts was becoming inflamed. It's located in the middle of my chest, right at the level of my bra strap. Friday morning instead of taking my "maintenance" antibiotics, I took the "super killer" antibiotics. I'm almost out of those. I sufferred through Friday. Imagine if you tried to stick a thumb tack in your skin. As you first touch the skin, and then gently start to push it in, there comes a point, probably before you ever break the skin, where you just can't bring yourself to push it in any further. This cyst feels a little worse than that. The dermatologist's office was closed by the time I managed to call.
Today it's worse: I can't wear a bra, and I'm hanging out with my boyfriend's friends tonight. Man, I hope none of them read this; I should switch to LJ where I can friends-lock posts. No, the whole point is that I'm trying get over my insecurity about it and come out about it so my friends understand me more, and more people become aware of it, and eventually drug companies will be motivated to research treatments. It's an "orphan disease," meaning there's no good research on it because of the low incidence rate. Putting labels on HS makes me think it'll go away.
If you do read this, you're allowed to say something like "I hope your skin's feeling better" but no braless comments or I'll probably break down crying. Only Jethereal's allowed to make a crack like that.