Hello, my name is Shannon and I’m a 23 year old woman with HS disease. Because of this condition, my self-esteem has suffered tremendously. I’m about to be married, and still wonder why my fiancé loves me so much? I feel like I don’t deserve it.

This is my story…

I was 20 when my symptoms began, and it was 6 months later that I was diagnosed by a Physician’s Assistant. The way I’d describe the pain from HS is dull achy and itchy, or sometimes a stabbing pain. There is also a pulling sensation from the sinus tracts.

HS has been a challenge for me at work. I’m an Assistant Customer Service Manager, and sometimes it’s hard to walk or sit down because of the lesions in my groin area. I am on my feet a lot at my job, and walking can cause friction. My mobility can be limited because my arms are so swollen underneath from the sinus tracts. When I’m running a cash register and constantly having to extend my arm it is a very unpleasant feeling.

The tunneling beneath my skin, or the skin itself, is sensitive from the bandages having to be put on every single day. At times my lesions leak through the bandages showing through my shirt and leaving me sticky, uncomfortable and discouraged. I have to fight to control my facial expressions as certain movements cause me to wince, or silently scream in pain, which people can mistake for me being mad or having an attitude.

I feel disgusting.

I’m also pregnant, which limits what kinds of medications I can take. Pregnancy is a hormonal and stressful experience, and since stress aggravates the disease, it makes it much worse. I manage my HS in a number of ways like hot compresses and self-draining to relief the pressure. I also use Epsom salt baths and Dial antibacterial body wash as well. As you can imagine I also use lots of bandages and occasionally rubbing alcohol.

Recently I’ve tried Hibiclens [which is a surgical type of liquid soap for wounds that keeps killing bacteria after you rinse preventing bacteria transfer to other lesions] on trouble spots and I will see how it goes.

Without HS, I know I’d have more confidence and energy to do the things I love and to socialize more. I would not have panic attacks nor would I be afraid to visit the doctor or get upset when leaving. Some Doctors do not know how to handle the lesions, and have hurt me trying to get cultures.

I’m in Stage 3, but fortunately I’m only affected in armpits and groin although I feel it trying to take over elsewhere. If I could grant a person newly diagnosed with HS a wish, it would be that they have the least amount of pain as possible, and they find an effective treatment as quickly as possible before it gets too bad.