As a child I used to get frequent heat rashes, so it wasn’t particularly concerning to me when the skin generally affected by heat rash, my inner thighs, seemed to constantly inflamed. But the inflammation had changed, and my skin began to break out in what looked like pimples and boils. The change happened at about the time I hit puberty. I let it go.
Around the time I was 15, I developed an obsessive-compulsive handwashing problem and was sent to the dermatologist. I showed her my hands and she wrote a prescription for some heavy-duty moisturizer and told me that if I didn’t get the handwashing under control, I was headed to counseling. Just as an afterthought, I showed her my inner thighs. Her response? “It’ll go away if you lose weight.”
That day I took on a lot of shame. The dermatologist didn’t think to connect the handwashing to the fact that my inner thighs looked like they were ravaged with infection. Furthermore, my mother had been diagnosed with a rare autoimmune disease. We had medical encyclopedias galore, and when I looked up skin conditions in them, as I often did, I could only conclude that I was dealing with a some very long-standing infection that miraculously had not killed me. In retrospect, I can see clearly and compassionately that my handwashing was a way that I tried to protect my mother from whatever was going on with my skin.
I never told my mother about my skin. During my teens and early twenties, what at first affected only one area grew and the lesions came to affect my beltline, buttocks, underarms, and breasts. But after that day at the dermatologist, I didn’t speak another word about my skin until I was 25.
At 25, my skin started getting really bad. What had begun as pimples and boils turned into abcesses. I decided to go in for a physical and finally show my skin to a doctor again. While I would like to say that that act took courage, it really took fear. The doctor didn’t know what I had, but after doing bloodwork, sent me to a rheumatologist. The rheumatologist saw nothing but I showed her my skin. She said it looked like Hidradenitis Suppurativa. I remember not being able to really hear after she said that; I couldn’t believe someone had just told me there was a name for what I had had for so long. I couldn’t believe that I wasn’t the only one who had it. I went to a dermatologist for diagnosis and he knew as much as there is to know about it, which isn’t that much, and started me on anti-androgen therapy. My skin improved dramatically in the sense that I stopped getting abcesses, but it won’t ever go away, not even if my thighs never rub together again. One of the heartbreaking aspects of this disease is that there is no consistently effective treatment. Another is that no one knows what causes it.
What did go away is the shame. If anyone out there has HS and has been told it’s because you’re overweight, you were told wrong. Skinny people get HS. There are a lot of us fatties with it, but it’s not caused by being overweight. It’s also common to be told that HS is caused by poor hygeine. It isn’t. While the medical community devotes almost no research to this disease, the little research that has been done suggests that hormones might have a hand in the disease process. It might also be autoimmune, a response to food allergies, or abnormal hair follicles.
Every person who has suffered in silence and shame needs to know that she has HS through no fault of her own.