My life with Hidradenitis Suppurativa started at age 14, just as I was entering the throes of puberty. I found the first painful lump in my groin as I was getting ready for gym class. Mom took me to the doctor, who wrote it off as a boil and tried to lance it. Nothing came out, and the pain was indescribable.
Soon I was breaking out in my groin area, inner thighs, and buttocks regularly, with big, painful lesions that would sometimes drain, sometimes not. They left scars if they opened and bruising if they didn’t. The bumps ranged in size—anywhere from as small as a dime to as large as a Ping-Pong ball in diameter—and they were always excruciatingly painful. By 15, I had what can only be described as “pizza-groin.”
As a teenager, without a proper diagnosis for my condition, I was ruled by feelings of self-consciousness. I would hide to change in the locker rooms at school and I refused to go swimming without shorts on. Sometimes I couldn’t even wear underwear, and the draining lesions would soil my clothing. I had to carry Band Aids (and sometimes even gauze and tape) at all times.
Fast-forward a few years, when I began to date regularly. Here I was with this mystery skin disease in my private areas that was painful and embarrassing. I had found that shaving exacerbated the problem, so I tried to avoid that at all costs, but since being bare down there was the “in” thing, I was scared to take my pants off with the lights on or let anyone get handsy.
The first time I told a partner about my condition, for which I still had no name, I just sucked it up and came right out with it: “I have a skin condition—it’s not contagious, but it’s ugly, so be prepared,” I blurted before taking off my pants. It was tough to muster the courage to make this confession, but my honesty proved worthwhile. The guy I admitted this to didn’t seem to care one bit about my scars. I was so relieved, and for the first time I realized that I could deal with this more openly.
Once I discovered that honesty was the best policy, life was so much easier. It got even better when I received an official diagnosis of Hidradenitis Suppurativa in my early twenties. I was so happy that I could give this condition that had been plaguing me for years a name. I found out that my dad, sisters, and brothers all had it too because it’s hereditary, which helped me explain to people that it was not contagious.
Throughout my young life, I thought that this skin condition was going to be the end of my world—dating, sports, how people thought of me, etc. Once I found my voice and was able to honestly tell my partners and close friends about it, however, I found that it wasn’t that big of a deal to the people who cared.
The most difficult feat was surprisingly not dating, but work. Having to explain why I have to take off for a few days 1-2 times a year while recovering from yet another surgery was difficult, but I’ve found my bosses to be quite tolerant. It’s hard to be open about something so private, but it has to be done.
Today I have a husband who loves it when I wear sexy underwear, and helps me with my bandages post surgery to remove the affected areas where the lesions come back again and again. He’s also very understanding when it’s too painful to be intimate. HS is something I deal with on an ongoing basis, and have learned to live with. I’m still getting used to wearing bathing suits that aren’t shorts or skirts, but I’m getting there.
The fact is, some conditions cannot be helped. In my case, a mutated gene is responsible, not uncleanliness or being unhealthy. Everyone has a “thing”—something they can’t control about themselves. Everyone, at some point, is self-conscious about this thing until they realize that no one is really bothered by it but them. Once you realize that, you can live comfortably in your own skin.