Hidradenitis Suppurativa Support Group

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...

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/ Hidradenitis Suppurativa Support Group

Tired... lost.. alone

ashlegrair
ashlegrair

I have had hs for the past 10 years, diagnosed 3 years ago. And I'm just so so tired. Tired of doctors not being able to help, tired of hearing people say go take another shower, tired of waiting 3 month spans before traveling over 15 miles to see a derm. I'M TIRED so so very tired of watching my body become more and more deformed, I'm tired of not feeling pretty, or good enough, feeling disgusting, staying home to avoid contact with people or just not being able to get out of bed. I really just don't feel like I can do this anymore. I don't want to do this anymore. I'm tired of feeling worthless, tired of people hurting me. And I'm just so damn tired of everyone being too busy to listen and understand. Tired of hearing "Oh I get boils some times too". Tired of the horrified faces people make when I have a visible abscess. What is the point of any of this? What's the point of living in pain everyday? What to make someone else's life better down the road? To raise awareness? I don't know because all I've seen living with this disease is judgment, and ignorance. The Drs don't care people have never heard of it so surely it can't be as bad as cancer or any other nasty disease out there. We are just dramatic and have a low tolerance for pain to them. Actually people with this disease are some of the strongest in the world. HS is the 3rd most painful disease known to man.... but what's the point of being strong if no one notices? What's the point of living on when only a few voices try to shout over the masses? I'm completely and utterly tired. 

Bmorefrank
Bmorefrank
Happy Thanksgiving! I findustry myself thinking alot of this daily. Fortunately I have some great doctors who specialize in hs so they totally understand and are truly interested in finding treatments. Even though sometimes I do get down when I speak to them. I don't know how many times I say I'm sick and tired of being sick and tired! I try to find things to look forward to like sunsets, snowy days and peace (not world but my body at peace). It does help me talking to psycologists as well. When someone I need in my life to understand I show them all they want not for sympathy but just for understanding. Others I stopped caring what they think because they haven't lived a day in our shoes and are too ignorent to get it. I've called out many people when they stare just because! Use to get in fights in school when someone would stare or say something. Now I just suround myself with friends and family that matter and that helps me alot.
Al_Moocha
Al_Moocha
Have you tried TURMERIC? https://www.earthclinic.com/turmeric-for-hidradenitis-suppurativa.html
Sadmissy
Sadmissy
I can't wait to sure my psychologist for neglect and basically racism even though I'm a white woman he is from Delhi and I don't even think that he has a real license I have no idea but this guy was completely horrible to me told me I was crazy gave me a bunch of psych meds and I ended up gaining 30 lb in the situation getting worser so if I get a diagnosis real soon you best believe I will sue him
rituals
rituals
"I'M TIRED so so very tired of watching my body become more and more deformed" I totally understand. I had pilodinal cyst all before my HS started, so the surgeries in that area have left me with a very very big and ugly scar. Right in the middle of my fucking ass cheeks. It literally looks like they're melting together at the upper end in a mass of reddish scar tissue. That's the solution the doctors found to my incessant "infection" which was not responding to any kind of antibiotics for years and years. They say it's not related to HS but I'm pretty fucking sure it is, or at least it was in my case.
How am I supposed to be intimate with people when I have this + the scars in my arm pits and around my groin? I suffer from anxiety issues and I can't see this ending any time soon.
I can't afford a psychologist because I live on welfare and student loans (I live in an EU country), so I deal with this the only way I know - trying to become numb to everything.
I admitted for the first time to people that weren't close family that I had this illness a couple of weeks ago, in that sense many of you are probably way ahead of me. It felt really good, like a big step forward toward accepting the broken and tortured human that I am.