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,...
I'm new to this forum and don't know anyone else with HS. I've had it for 8 years, it's pretty extensive, but I get by. I just wanted to share my thoughts and this seems like a good platform where people may relate to what I'm going through.
Sometimes I stand in front of a mirror...naked, just looking at the parts of myself I know I can't change, but that I've been conditioned to hate. If an image of my body was ever posted in a public place there would be a disclaimer, warning people of the disturbing nature of the images. Thinking about it brings tears to my eyes. How can something entirely out of my control, that can't be fixed, give society a right to brand my body as disturbing or graphic?
Hidradenitis Suppurativa (HS), is treated differently than other ailments. HS is hidden due to society body shaming anyone with it. People make assumptions about HS sufferers due to the areas it affects.
Growing up everyone is told not to mind what others think, because it doesn't matter. It does sometimes though, and it shouldn't. A beautiful person is not defined by how they look. It's a clich, but it's true. I have HS, and my body should not define me. I struggle to believe I'm beautiful sometimes, but I am. I have to believe that. I am beautiful, and you are beautiful. You are always beautiful to me, regardless of what any disease does to your body. We are more beautiful people because of our HS.
Sometimes I stand in front of a mirror...naked, just looking at the parts of myself I know I can't change, but that I've been conditioned to hate. If an image of my body was ever posted in a public place there would be a disclaimer, warning people of the disturbing nature of the images. Thinking about it brings tears to my eyes. How can something entirely out of my control, that can't be fixed, give society a right to brand my body as disturbing or graphic?
Hidradenitis Suppurativa (HS), is treated differently than other ailments. HS is hidden due to society body shaming anyone with it. People make assumptions about HS sufferers due to the areas it affects.
Growing up everyone is told not to mind what others think, because it doesn't matter. It does sometimes though, and it shouldn't. A beautiful person is not defined by how they look. It's a clich, but it's true. I have HS, and my body should not define me. I struggle to believe I'm beautiful sometimes, but I am. I have to believe that. I am beautiful, and you are beautiful. You are always beautiful to me, regardless of what any disease does to your body. We are more beautiful people because of our HS.
beautiful post. I understand what you're going through. This condition sucks. Looking at yourself sucks, dealing with it sucks. I'm not sure what else to say other than try and keep yourself busy. It's really the only thing that keeps me sane recently. I've been battling depression because of this condition, I hope we get some answers soon.
Your story resonates with most of us. The shame, depression, smell, pain, and all it entails.
I quit worrying about what others think of my condition. I try to be diplomatic when I don't feel like even being on the phone with friends, or relatives, etc.....
As I always post God bless us all here. I am Catholic (not pushing my faith here), but Jesus suffered in the cross for all of us. His pain was more than we could imagine. I offer up my sufferings to Him, and try to be positive by through my suffering it brings me closer to Him. The aforementioned is my take.
It took the VA system about 25 years for me to get a correct diagnosis.
Have a blessed day everyone. Let's try to stay cool this summer (our worst time of year), if nothing else stay in air conditioned spaces as much as possible.
I'm just over it.nothing works