Strange Musings *hyuk*
Saturday, October 01, 2005
  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.
 

Comments:
All my support and hugs to you Zandi! I know from having chronic cystic acne that pimples aren't always "just pimples"... and I never had to wear a bra strap on my face. (Well, except that one time, but that was totally voluntary....). Just wanted to send a little love your way and say I do hope your skin feels better soon, and that you are both awesome and brave.

hugs,
J
 
ADVICE TYPE=UNSOLICITED: I don't remember the last time I wore a bra, and I've never gotten flak for going without. If you're really worried about nipple visibility, wear a dark-colored textured shirt and/or a jacket or sweater. Beyond that, enjoy the freedom! If someone does ask why you aren't wearing a bra (and honestly, what sort of crass obnoxious person would?), you can always say "I burned it" and turn the topic towards feminism and away from your chest.

From my time with tendonitis, I definitely sympathize with the distress of fighting an invisible or--worse--a what's-the-big-deal health problem. (People didn't usually get it until I explained that I couldn't wash my own hair because it hurt to have my arms unsupported for that long.) It's terrible to have to draw extreme parallels or feel like you need to exaggerate to get any support when the day-to-day things are the worst part of actually living with it. I wish you speedy healing and an absence of annoying commentary from others. I'm sure your boyfriend will be supportive, and your friends too; that is, after all, what friends do.
 
I can definitely sympathize with your situation as I am another HS sufferer. I have been battling a rather nasty flare for the past 2 months & just recently decided to file for Social Security Disability. You are quite fortunate in that you have a boyfriend who is supportive of you.

I agree with what rose fox said ... I can not wear a bra either due to the location of the boils/lesions. In an effort to help conceal the nipples, I generally will wear either a dark colored shirt or a tank top under my shirt. It does seem to help.

I enjoyed reading your blog. I have one as well on Yahoo (htt://360.yahoo.com/laratt1962) ... I invite you to take a look & hopefully you might find some other information on this disease there. There is a lot of info on the web about HS, but it is so scattered. I am trying to educate others as well!

Here's hoping you have a painfree day!

((((HUGS))))
Renee
 
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