The sponsor of my support group held a meetup this evening, and I’m glad I signed on. A dermatologist hosted, but it was an open floor setting. We were encouraged to share our story, what we use to cope etc.

I raised the question about pain management doctors and if anyone had gone that route for HS. Nobody had. I expressed how the pain in my buttocks was my reason for asking. I explained to the best of my ability what it feels like. WELL, at that time, one of the other HS patients told her experience that sounded exactly like me!!! That was the best part of the entire meeting!! OBVIOUSLY I’m not referring to another human being suffering, but to hear her say that the HS in her buttocks trumps the pain everywhere else and how tired she is of the wounds weeping and the smells, it was a big deal for me….. actually being in a moment where I truly wasn’t alone…VERY VALIDATING!

I was reminded of what a former coworker and friend once told me. He said that as much as he loved and cared about me and hated that I have this disease, the reality is that he’s still going to go to bed and go to sleep, and live life normally, that he’d never really know how I felt. That was one of the best moments of honesty I’ve experienced because it was so true!

The other reality is that there are people that understand exactly what I contend with, and tonight was proof of that. So glad we both decided to share.