hidradenitis suppurativa

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hidradenitis suppurativa

Postby veritas » March 5th, 2013, 8:47 am

I came out of a really good relationship about two years ago now, I guess. The end was a rational smart choice, so when we parted ways it wasn't because how we felt for each other had in any way waned. There was no resentment, or hard feelings, or anything like that. That's a hard ending, and for me that took time to get over. I took a deliberate break from dating.

While on that break a genetic disorder made itself manifest. My immune system, my sweat glands and my skin no longer get along. For now it's localized under my arms, it looks like scar tissue, sometimes inflamed, sometimes with abscesses, sometimes seeping, sometimes merely receding. Those absesses are the source of the scars. Over the next decade or two this is going to become worse before it'll likely mutate to skin cancer and become fatal. There is a laser treatment, where the skin and the underlying tissue is burned off, and then covered with skin grafts, but that's not fix, nor is that really a sight to behold. Because it's a genetic disorder that just deals with the symptoms, which return. There is no cure. They're not even sure that it's a genetic disorder. It's just the most educated guess, really. It took me a while, but I accept that now. That this has happened, and I have to deal with it, somehow.

How far do I go adapting my life plans to this new situation? Children are out. I'm not going to risk passing this on.

But a decade or two is a long time. Coming straight to the point, largely I don't feel worthy of love anymore. It's disgusting. It's repulsive. That is what my body has become, and will become more so.

Typing it out now, I know what the right approach to this is.

"You can't meet anyone if you don't risk rejection", I tell myself.

It goes so deep now, though. It's not just rejection, now. Rejection isn't really about worthiness, it's about compatibility, timing, it's a bit of gamble, always. Now, to me, it's a confirmation of worthlessness, a confirmation of no longer being a part of that aspect of the human experience, and that is scary. Diseased, with no biological imperative on my side. On the contrary. Being repulsed is a natural and even healthy reaction to disease. That's tough to confront. Real tough.

"If you are going to let fear dictate your life you might as well just lay down and die now".

Oh, shut up myself. You're not helping.

So, that's the situation. Any words of advice?
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Re: hidradenitis suppurativa

Postby ghughes1980 » March 5th, 2013, 7:43 pm

No advice but I just have to say I get the situation 100% Chronic illness sucks and you are seriously not alone on this board.
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Re: hidradenitis suppurativa

Postby Cheldoll » March 5th, 2013, 9:02 pm

First off, I want to give you a hug. You are worth loving. I don't know what you look like and, frankly, I don't care. You are worth loving. So here's a hug.

Now that we've got that out of the way, do you have any pets? Would it be possible to adopt one? Animals are a wonderful source of unconditional love. It's certainly not the same as the love of another human being, but I think it would really help you feel like you're worth loving.
xoxo,
Chel

" Many people need desperately to receive this message: I feel and think much as you do,
care about many of the things you care about, although most people don't care about them.
You are not alone. " — Kurt Vonnegut Jr.
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Re: hidradenitis suppurativa

Postby veritas » March 6th, 2013, 3:28 pm

Thank you for the hug

Hugs

No, I don't have a pet, but you're not the first to tell me to get one. I would give it serious consideration if I wouldn't live in a busy city. I would love to get a dog. I've always had a thing for retrievers. But they deserve a place to run, and play, be doggy. I might move soon, and if I do, I'll definitely factor that in.
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Re: hidradenitis suppurativa

Postby Cheldoll » March 6th, 2013, 6:27 pm

Dogs are definitely wonderful! Needing to take them for walks is also a good excuse to go outside and maybe even meet people (or so I hear -- I'm more of a cat person myself).

Even if you can't get a puppy, though, you can stay inside and talk to people like us. You are not alone. :D
xoxo,
Chel

" Many people need desperately to receive this message: I feel and think much as you do,
care about many of the things you care about, although most people don't care about them.
You are not alone. " — Kurt Vonnegut Jr.
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Re: hidradenitis suppurativa

Postby Paul Gilmartin » March 8th, 2013, 1:14 am

Veritas,
I'm sending you a big hug as well. HUG!!!!

Paul :)
http://mentalpod.comNothing degrades the quality of my life like obsessing about the quality of my life.
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Re: hidradenitis suppurativa

Postby Nevina » March 11th, 2013, 3:56 am

Hi Veritas,

That sounds exactly like what my ex had. No wonder the disease name looked familiar to me. I just wanted to say that the disease had absolutely nothing to do with why we broke up. The disease did not negatively affect our relationship on an emotional or sexual level - or any level. It was just something we had to account for, like my asthma or anxiety; it was simply part of life. I wanted to reassure you that even though the disease is icky in some ways, there are plenty of people out there who can love you for who you are, no matter what. My ex who has this? He's been married for seven years now. There is definitely reason for hope.

Lots of hugs!
When life gives you shit, make shitade.
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Re: hidradenitis suppurativa

Postby lojolane » July 10th, 2013, 11:07 pm

Hey Veritas I just wanted to let you know you are not alone. I am currently laying in bed recovering from a horrible sore in my armpit. it was so painful I couldn't even function. I totally understand what you're going through and I wish there was a cure for this annoying disease. I often find getting in the way of my relationship. my insecurity about it makes it hard for me to feel sexy and loving. I just get angry and tired of the pain. so I too would like to send you a big hug and let you know that if you search on youtube you'll find videos of others who suffer from HS. I found this really helpful the other night when I was at the end of my rope wanting to just cut my arm off and run away crying. I was suffering from this condition when I met my boyfriend and he's never judge me for it. .I want to write more but I want to go back and read your post again so I will probably post another reply. please forgive my horrible formatting I'm using google voice to write this because I'm on my phone and I couldn't handle the 10 billion auto corrects gone wrong if I tried to type it therefore there's a huge lack of punctuation here just like in this run on sentence heehee.
lOjO loves her mOjO
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Re: hidradenitis suppurativa

Postby hedgewitch » November 20th, 2013, 12:08 am

Oh, you are so not alone. I was misdiagnosed for years before a doctor finally looked at the abscesses in my groin and said that it was HS. Yeah, my groin. I've got scarring, lumps, and currently an oozing sore that hurts like a bitch. For the longest time, I didn't want to have sex with someone because I was terrified they would think I had an STD despite never having sex before. Eventually, I did have sex with someone, but it couldn't shake the fear of when he would go down on me that he could feel and see all the sores. It's heartbreaking. There are like, 100 possible 'cures' out there for HS but there is little to no research being done on it. No one wants to talk about the sores in their armpits/groins or under their breasts.

For what it's worth (and how ridiculously funny it is to me now), I had a HUGE sore burst in high school and had to waddle down from one corner of the school to the other for the nurse's office. The nurse took one look at it and had no other suggestion than to strap a maxi-pad to my leg and call it a day.

I'm here for you and get it. If it hurts more, send me a message. *hugs*
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Re: hidradenitis suppurativa

Postby sohar » August 15th, 2014, 10:09 pm

That sounds exactly like what my ex had. No wonder the disease name looked familiar to me. I just wanted to say that the disease had absolutely nothing to do with why we broke up. The disease did not negatively affect our relationship on an emotional or sexual level - or any level. It was just something we had to account for, like my asthma or anxiety; it was simply part of life
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