Putting On A Brave Face
Last updated: June 2023
I was diagnosed with HS at 16 and I've lived with this condition now for 7 years. HS has progressed significantly each year, each year getting harder to be compliant and strong, I'm stage 3. 3 surgeries and I'm on the last option on medication (so I've been told) I've been told I deal with this well by my doctors but truth is I don't, it's hard, painful, embarrassing, I feel ashamed that I'm embarrassed.
My biggest supporter
When I was 16 it didn't matter to me much, I didn't have a partner nor wanted one. I didn't have to open up with anyone about it apart from my parents. I'm in a 4 year relationship now and thankfully my partner loves me no matter what and is my biggest support when I have flareups, but again it's embarrassing. In 2021 I had a major surgery with 2 weeks notice and no consultation at what was to come and the recovery was brutal. Skin graft and removal of the affected areas under both arms, I had drains come out of me and now suffer with panic attacks from the trauma I went through when removing drains from my raw flesh under my arms with no numbing.
People don't know what HS is really like
We want to start a family and I'm scared how my body will cope with pregnancy. I've been told I cannot be on medication if pregnant so having to choose between a family and my health is awful at 23. People don't realize what having HS is like, because for some people like me, you can't see it. I will continue to put a brave face on because that's what I'm good at. HS is hell and I don't wish it on anyone.
When you need to vent about HS, who do you turn to first?