What It's Like Having Hidradenitis Suppurativa

The alarm was going off and I couldn’t believe it was 6 a.m. again. I pressed snooze… twice… then finally, begrudgingly, rolled out of bed and went to brush my teeth. I looked in the mirror and was suddenly wide awake. On my T-shirt, right below my heart, was a bright red blood stain larger than a quarter.

Had I been stabbed with a small knife in my sleep? No. I quickly came to my senses.

This has been happening for 14 years now, another flare had leaked.

I was 12 years old when I noticed my first boil in my armpit. Then another in my groin. A lot of different things are happening to girls at this age, so I wasn’t particularly bothered. My mom took me to see a doctor, who told me to go to a specialist, who gave me (what felt like) a very invasive exam. Lucky for me, it only took two doctors visits to determine what I had – hidradenitis suppurativa (HS).

Hidradenitis suppurativa is described by the mayo clinic as a “rare, long-term skin condition that features small, painful lumps under the skin. They typically develop where the skin rubs together, such as the armpits, the groin, between the buttocks and under the breasts.”

It is chronic, it is at times devastating, and it is near impossible to pronounce. There are three stages of HS, the third being the most severe. It involves severe scarring and tunnels between flares. Having had the condition for more than half my life, I’m stage three at 26 years old. I’ve read about the scarring getting so bad for some people that they can’t lift their arms above their heads. That scares me.

I was an athlete growing up. When first diagnosed, I occasionally sat out soccer games due to the pain. In high school, I was starting goalkeeper and captain on the soccer team. People depended on me, and even though it hurt, I never let HS stop me from being there for my team. Pain aside, I knew immediately to be embarrassed of this disease. I’ve only ever told close friends. As the scarring has gotten worse I have more often worn long sleeves. I get flares a variety of places now, mentally it weighs on me more than when I was younger.

There is currently no cure for hidradenitis suppurativa and I feel varying levels of discomfort every day. Sometimes I’m sad, angry or tired, and it’s difficult to explain to others why. But this life is worth living fully, so I let myself feel it and then I focus on moving forward. I’m blessed in a million ways, and pain isn’t going to stop me from remembering that.

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