Hello Everyone, my name is Cheyenne. I’m a 21 year old woman with HS disease. I don’t want to admit that most days I ball my eyes out wondering when I’ll be normal again. Other times I wonder when I will be able to think of myself as a good wife who can clean, cook, do laundry, and so on. There are so many things in life I took for granted before HS.
This is my story…
I was 18 when my symptoms began. It took 2 years of hearing “The wound looks good but I don’t know what it is” before finally getting the proper diagnosis from a wound care doctor. I still don’t have a dermatologist; my surgeon is who treats my HS.
I can’t really describe the pain from HS, it’s like nothing I’ve ever felt before. It’s not only physical pain, but mental as well. The physical pain is just something unbearable and unexplainable. The emotional pain though comes from being a 21 year old who wants to be able to wear tank tops, go to the beach, workout, and do so much more while being so restricted.
Currently, I am employed however I’ve been on leave since November. I work at a hospital getting patient’s information and dealing with their insurance. HS greatly affects my work because I can’t really move my arms without being in pain and you move your arms constantly. I went back in February for four days and had never felt so much pain before.
It was hard knowing I could only go back to work for four days before being put on another leave. Not being able to work and help out sucks, and makes me feel completely useless. Possibly the biggest challenge I’ve encountered living with HS is having to put my life on hold to deal with both HS itself and the severity of the disease. I am late stage 2 or early 3, and finding out how severe mine is was one of the hardest things to swallow. It’s something you don’t want to admit to yourself at all.
I’ve only ever had pain medication and different materials to put on the wounds for my HS, but they were too painful. Right now I’m managing the condition with a wound vac after having three surgeries. A wound vac is a machine that draws out all of the bacteria from the wound beds. There’s a sponge with suction on it that hooks up to the machine. It has to be changed twice a week, which is the worst part of it.
The first surgery was in November of 2016, and it was to have my hair follicles and sweat glands removed from both armpits and have a skin graph put on. That skin graph failed so on December 26th 2016 we did a second one which also failed. For my third surgery, was late in February 2017 we put a manmade skin substitute on with the wound vac and that seems to be managing it.
My one wish for someone newly diagnosed would be to never give up on finding a doctor who knows how to treat this ugly disease. I know if I did not have HS my life would be totally different. I’d be in cosmology school instead of having to put it on the back burner. I also wouldn’t be dealing with depression and finding ways to cope with it. However, I believe everything happens for a reason and even though this disease is the worst thing I’ve gone through I know there will be something positive that comes out of this!