Hello, my name is Searra and I’m a 22 year old female with HS disease. There is no way to describe the pain from this disease. It’s unbearable at times, to the point where you don’t want to move once you find a position that the pain is not that bad in. If I did not have this condition I wouldn’t be in pain 24/7 and I’d be able to be more active.
This is my story…
I was 12 when my symptoms started, but it took 7 years and 15 different doctors [dermatologists, infection disease specialists and plastic surgeons] before finally being diagnosed by a General Surgeon. It is hard making plans from day to day when you never know if you’re going to wake up with a flare or be in too much pain to move. I have a 3 year old daughter, and it’s hard when she wants to play or go to the park. I’ve had trouble trying to explain HS to family members who just think it’s just a boil. They say I “just need to get over it” and that “it can’t hurt that bad” they don’t understand the disease at all!
Working in an office setting and having HS has affected me tremendously. There are days when I feel like I don’t want to get out of bed due to the pain and open wounds, but since I have no sick days, I have too. I manage the condition by trying my hardest to keep the area clean and dry, and if it gets too bad I go to the ER and get them lanced.
I’m in stage 3, and had surgery under both arms to remove the sweat glands and hair follicles. I do have less of them there now, but the ones I do get there are just as big. The doctors will no longer lance them due to the scaring. I also have it in my groin and also under my breasts.
My advice for anyone just getting diagnosed is to try your hardest to keep your head up and be open with your family and have a good support system. Also, try to understand HS and do some research about it. When I have a question I go online, or I ask the other members of HS Aware.
Never be scared to ask questions!