I did not expect that I might have generalized symptoms like fatigue or that HS might be why my joints ache at times! When I first was researching I thought it was just a skin disease. But knowing it's auto-inflammatory, it makes a lot of sense that it could cause those kinds of symptoms.

I didn't expect from HS,that when it's infected and having inflammation.You can smell,the infection come out of your pores. That's, upsetting and embarrassing.But,I'm grateful for being in this group with other's.Also,learning reading and asking questions.

Psychological . There is a great deal of shame around this disease. I felt I needed t to keep it a secret.

The fatigue and anxiety

I’ve had HS for 32yrs and gone through multiple surgeries including skin grafts and I thought the last place I’ll get them was on my stomach and breast which started about a year and a half ago and had a surgery to remove a mass in my stomach. My first surgery was when I was 21 yrs old and the others in my late twenties till I was turned forty. At forty I said that’s gonna be my Last surgery which was under both arm pits they went so deep to where it destroyed nerves in both my arms, plus I had skin grafts under my arms. I never thought I’ll go through carpal tunnel, high blood pressure, and chronic arthritis, and muscle skeletal disease and being the same like I never had surgery at the age I am now. I thought I was over with everything where my HS will get calm but now it’s destroying the rest of my body and health.