I was hoping the meeting could help me start living life again. My nerves were so bad though, it was a struggle not to vomit as I entered the restaurant. I had never met another person with HS before, but now I was about to walk into a room filled with them.
When I was diagnosed I had never heard of it, nor had anyone else I talked to.
Not that there were many.
It is not the easiest thing to tell someone “I get painful boils anywhere that skin meets skin. They can be as small as a pea and up to the size of my fist. If they rupture they can stink and leak for weeks”.
I only told who I needed to tell.
Now I had agreed to go talk about it for an evening:
That meeting was a year ago, and it changed my life. I had no idea what the impact of meeting others with HS would be on me. The disease had left me feeling very alone and convinced that it was my fault I was sick.
By the end of that night though, I knew that there are others facing the same thing as me. Most of them even felt as alone and isolated as I did.
Their experiences also mirrored mine, with histories of misdiagnosis, lost work, horror stories from emergency rooms and so much more.
We also discussed the need for a Canadian voice for HS, somewhere for people to turn for accurate information and that raises awareness of the disease. It would also have to be a safe place for HS sufferers to meet others, since feelings of loneliness and isolation are common.
I think that the HS Aware website will give you what that meeting gave me.
Hope, and a sense of belonging to a community that understands me and knows what it’s like to live with HS.