Jasmine Espy was just 13 when she woke up with a golf-ball-size lump under her arm. It turned out to be her first sign of hidradenitis suppurativa (HS), a chronic condition that causes painful cysts and nodules that develop in areas where skin rubs on skin, like the armpits, butt, and genitals. Espy spent years feeling isolated and ashamed as she tried to figure out how to control her symptoms and navigate the steep emotional and mental health challenges that go hand-in-hand with HS.
“It was so bad,” Espy, now age 30, tells SELF. “When I was a kid, I disassociated from my body to survive because it was so aggressive…I was dealing with all this depression, this anxiety, this body dysmorphia, and it really almost got the best of me.”
It’s particularly challenging if, like Espy, you are Black and have HS, because it can take you even longer to get an accurate diagnosis and you can have more severe symptoms, scarring, ER trips, and surgeries than other folks, as SELF has previously reported. “People of color typically have a higher disease burden,” Rosanne Paul, DO, an assistant professor of dermatology at Case Western Reserve University, tells SELF.
Given how little information is out there, we asked people with HS what they wish they had known earlier and what advice they would give their younger selves.
1. It’s important to know your triggers.
Tiffany Charles, 33, wishes she knew how important it is to figure out those unique things that can aggravate your skin. Charles experienced her first HS symptoms when she was about 15, but she wasn’t officially diagnosed until she was 18. Her symptoms were so severe that she skipped school on some days and ended up needing surgery at 20 to remove sweat glands under her arm.
“I think as time went on, I was more aware of my body, more aware of the triggers, the things that would affect it,” Charles says. Over time, she figured out that her symptoms got a lot worse from shaving and wearing tight or nonbreathable fabrics. Because HS is linked to inflammation in hair follicles, shaving can really ramp up symptoms (while laser hair removal may calm them down). She also noticed stress had a big impact. While stress doesn’t cause HS, it “can increase inflammation within the body, which would subsequently increase a flare for this condition,” Dr. Paul says.
For Charles, identifying her triggers helped her find ways to manage her symptoms better as she got older, and it’s one of the things she would tell her younger self.
2. HS can affect your career and relationships.
Mario Otero, 41, has been living with HS for about 26 years. The condition significantly impacted many aspects of his life, including his job. “I had to step away from my career because of my HS,” Otero tells SELF.
One study found that the unemployment rate for people with HS was about double that of the general population, and in general they had to take more sick days or days off from work.
