Am I the only one in such pain?
WHO AM I?
Before I knew I had HS, I’d arrive in hospital and have my “boils” lanced and packed, resulting in missed work and a long healing process. The pain from HS Disease I’d say was agony; it’s the kind that stops you dead in your tracks. There is also the constant worry when you have an active sore of what happens if it breaks and blood is everywhere? I’ve been in that position and it was taxing, to say the least.
I was 17 when my symptoms started, but it took another 6 years to get my proper diagnosis from a doctor at a family practice. She was an amazing doctor who knew what it was at first sight. I work in Human Resources, and for a while HS affected my ability to do my job. I was unable to move my arms without pain. I could barely get myself dressed for work or move my computer mouse because of the pain. It would cause tingling in my arms from pressing on nerves. I’m happy to say though, that is no longer the case!
WHAT HAPPENS TO ME?
“I had large bumps on my groin area. At first, I thought they were pimples until they started getting really big, painful… I knew it wasn’t an STD because I was a virgin but I was too embarrassed to ask for help.”
“I do get periods when I feel like an alien or freak when I get a boil in the groin or bottom region. I feel like of all the things, why me?”
“I’m 40 and I feel like I’m untouchable. I don’t go out. I don’t date because I don’t feel comfortable. It’s disgusting.”
WHAT ARE WE DOING HERE?
“I don’t think any one of us here likes the fact that we live with HS – so why would anyone else?”
“It makes me feel good to be here and be around other people who know what I’m going through.”
“People actually listen to me when I describe what’s happening.”
Sharing experiences and stories helps. We’re Listening. Every Voice Matters.