I Have a Rare Disease That Causes Painful Abscesses and Boils on My Skin
One woman recounts her struggle with the painful skin condition hidradenitis suppurativa.
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It started my senior year of college, when I noticed that the lymph nodes under my arms were swollen. My primary care doctor ran a few tests, all of which came back negative. Over the next few weeks, the area started to bruise and develop pimple-like bumps. I went to a few specialists, but no one had any answers (one suggested I "try to be less stressed"—gee, thanks).
After a few months, though, my symptoms hadn't gone away, and it was becoming increasingly difficult to move my arms. I went to the emergency room when the pain became unbearable. The ER doctors thought it was an infection, so they gave me antibiotics and sent me on my way. I spent the rest of the weekend curled up in bed, crying from pain and frustration.
Soon after, I scheduled an appointment with yet another doctor, and finally got a diagnosis: I had hidradenitis suppurativa (HS), a rare disease that affects areas of the skin with lots of hair follicles and sweat glands, such as under the arms, on the inner thighs, around the groin, or under the breasts. Women are more likely than men to develop HS, and symptoms can include painful bumps and abscesses that may break out into boils. The disease usually begins after puberty, so symptoms are often initially mistaken for acne.
Although it was a relief to finally know what was wrong, I've been struggling with my HS every day since. I can't shave my underarms, since it would irritate my skin, so I always wear T-shirts or cardigans to cover up the bumps. The abscesses frequently drain, and I spend a lot of time doing laundry. My greatest fear is that I'll lift up my arm in public only to realize that it's soaking wet. Shopping is a challenge, too, since I can only wear clothes made from breathable fabrics like cotton. Sometimes the heat in Los Angeles, where I live, is so unbearable that I throw on a tank top and try not to worry about people staring. During bad flares, which now happen a couple times a month, I can barely move my arms.
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About three years ago, I made the move to LA from my hometown of Chicago, and it was tough. There were the standard difficulties everyone faces when they move to a new place—finding a job, making new friends, getting into a routine. But I also had to face my own set of challenges, including finding a team of doctors I could trust. It took me a long time just to find a dermatologist who had even heard of hidradenitis suppurativa, let alone someone who could help with my long-term treatment (one doctor told me I would probably die at a young age, since he never saw elderly patients with HS). I also struggle with anxietyand depression, and I went through a few not-so-great therapists before finally finding someone I connect with. And I'm still searching for a primary care doctor—the one I saw in Chicago had been treating me since I was 16 years old, and knew my medical history like the back of her hand.
This all might sound odd to a healthy person, but for me, having a team of medical professionals I can rely on is key for managing my HS. And after three years in LA, I finally feel like I have that team in place. My new dermatologist goes to conferences just to hear about new treatments that might help me. My therapist has helped me find myself again.
Today, I've made great strides in accepting my illness. I know that what I've gone through has made me a stronger person—and as long as I have my team in my corner, HS isn't going to get the best of me.