How I Got Over My Shame About Living With a Painful Skin Condition

Selina Ferragamo, 27, first started experiencing hidradenitis suppurativa symptoms in high school, but she wasn’t diagnosed with the condition until she was 22. Hidradenitis suppurativa (H.S.) is a chronic, inflammatory condition that causes painful bumps under the skin, often in sensitive areas like the armpits, groin, and beneath the breasts. The bumps and lesions can burst, releasing pus and blood and causing a lot of pain. Sometimes the condition results in tiny tunnels beneath the skin that connect lesions, and it can also cause scarring.

H.S. is a very visible and uncomfortable condition, so along with the physical pain, it can also impact emotional well-being. Self-inflicted body-shaming and a lack of self-confidence are common. Ferragamo personally felt a lot of shame about the boils, cysts, and lumps brought about by her H.S., as well as the scars left behind by the condition and the surgeries she’s undergone to treat it. She says these negative feelings can make it hard to wear sleeveless shirts and bathing suits, or even just get ready to go out to a party.

During a flare, shaving can irritate H.S. bumps and lesions, worsening the condition and making it more painful. But having hairy armpits adds another layer of shame, Ferragamo says. After a boil ruptures, she’ll often place gauze under her armpits, which people sometimes comment on. She also says that people—even doctors—who didn’t understand H.S. made her feel like it was her fault: that she wasn’t showering enough, that it was due to her weight, that she wasn’t hygienic, that she wasn’t changing her razor blades enough. All of this blame really impacted how she viewed herself.

Over the past few years, Ferragamo has managed to overcome a lot of her body shame and embarrassment related to H.S. Here is her story, as told to health reporter Beth Krietsch.

Between May 2017 and August 2018, I had three surgeries on my armpits—my hidradenitis suppurativa flares were getting so big and painful that I wasn’t able to move anymore without excruciating pain. After my surgeries, it took me a long time to be comfortable wearing tank tops. If I lift my arms, my surgery scars are pretty noticeable, and you can also see the scars from the back of my arm because of how I was stitched up. It gets really hard sometimes, especially if I’m trying to find an outfit for a party or event. When I was getting fitted for my sister’s wedding, the tailor saw the scars underneath my armpits, and she asked if I had cancer. I was kind of taken aback because I wasn’t really expecting anyone to say anything about it. I was like, “Oh no, it’s just surgery scars,” but it was really uncomfortable.

Sometimes comments like that really get to me and make me feel self-conscious. I used to get really embarrassed talking about H.S. because it’s not the most pleasant thing to describe. I get nervous that people will judge me and think I’m disgusting, and then those thoughts spiral in a negative way. So it bothers me when people draw attention to my insecurities. But I try to remember this is not my fault—that this is an uncontrollable disease that I have to live with. I saw a meme that said something like, “Those scars are showing the history of everything that you’ve been through.” So I try to see it that way.