What Is It Like to Have Hidradenitis Suppurativa? My Story of Painful Sores, Embarrassment, and Hope
Key takeaways:
Allicia Thomas, who’s 31, lived with painful sores in her armpits and on other areas of her skin for 15 years before being diagnosed with hidradenitis suppurativa (HS).
The diagnosis gave Allicia some level of mental and physical relief.
Allicia shares her experiences with HS on social media in an effort to help others.
The first time Allicia Thomas noticed the sores that mark hidradenitis suppurativa (HS), it was the summer before her junior year of high school.
She was swimming in a wave pool with a friend, who saw tiny slits in Allicia’s armpits.
“I thought I cut myself shaving, like I nicked myself with a razor,” says Allicia, who lives in Sedro-Woolley, Washington, north of Seattle.
The painful sores came and went but got progressively worse. A year later, in 2007, Allicia visited her family doctor. The small cuts in her armpits were “10 times worse at that point,” she says. “They were like super pimples or boils.”
The doctor told her to stop shaving. He said the marks were skin irritation. And he suggested Allicia use a hair removal product like Nair instead.
“As a woman, I might stop shaving,” she says. “But as a 16-year-old who was changing in front of others in the locker room at school — and was already self-conscious — there was no way I was going to stop shaving.”
Allicia also didn’t want to use Nair. The sores in her armpits were open wounds, and she knew the hair removal cream would burn.
Instead, Allicia did nothing. She simply lived with the condition for about 15 years.
Feeling isolated and embarrassed
During her teens, Allicia says, her friends became her VIPs. They supported her, never made her feel self-conscious, and often helped her manage uncomfortable situations.
“Sometimes the hook of my bra clasp would get stuck in one of my sores. And if I couldn’t get it out, they would do it for me,” she says, referring to her friends.
But her condition did make her feel isolated and embarrassed before she knew what it was. No one else in her family has HS. In high school, she often wore a long-sleeved hoodie, even in summer, to cover her sores.
“I had little brothers, so there was a lot of: ‘What are those things under your arms?’” Allicia says.
Later, she worried what a romantic partner might say. But that’s not been an issue. Allicia is a mom to a 6-year-old son. She and her fiancé Joey will be married in August 2023.
One summer, when Allicia had a babysitting job, her sores were calm. She realized that swimming in a chlorinated pool every day dried them out. Over time, she also noticed the armpit sores flared during her menstrual cycle and when she was stressed.
In 2020 she saw a commercial on Hulu describing exactly what she was living with. “So, I looked it up,” Allicia says. “They were talking about HS.”
Getting a hidradenitis suppurativa diagnosis
Hidradenitis suppurativa is a skin condition that causes painful lumps deep in the skin. The lumps usually appear on parts of the body where skin touches skin, like the armpits, inner thighs, and groin area. Sometimes, the lumps turn into sores or boils, like a skin infection.
It wasn’t until 2021 that Allicia made an appointment to see a dermatologist. “I have ADHD and executive dysfunction decisions take me a while,” she says. “It took a long time for me to get there.”
The dermatologist diagnosed Allicia with HS and recommended a few treatments. He prescribed her an antibiotic and suggested that she use Hibiclens. The antiseptic, antimicrobial soap and skin cleanser keeps wounds clean.
Now, Allicia uses Hibiclens a few times a week, and it dries out her sores but doesn’t remove them. However, she had a bad reaction to the antibiotic, so she stopped taking it.
She wasn’t surprised by her diagnosis after seeing the condition described in the Hulu commercial. But she did find that it brought her some relief.
“It was a weight off my shoulders knowing it was an actual thing,” Allicia says. “It was validating.”
Sharing through the pain
Feeling good about having a diagnosis, Allicia made a public post on social media on her 31st birthday in March. She hoped to help others who might have HS but not yet realize what the condition is. And she wanted to encourage people to talk about the condition.
“It’s an embarrassing and shameful issue to have,” Allicia says. “Often, doctors and family members tell people the sores are there because we are fat or unhygienic or smoke. None of that is true. Skinny people have it. People who don’t smoke have it. And men have it.”
Allicia says she’s hesitant to be a spokesperson for HS because her condition is not as severe as some other people’s. But she wants to share what she’s learned.
In comparison to people with advanced HS, who experience widespread and deeper sores, Allicia’s symptoms are less acute. (She gets sores in her armpits, under her breasts, and in her buttocks.) And people with more severe cases of HS sometimes require lancing treatments or surgery to remove a gland.
One of Allicia’s friends has had to receive treatments in the emergency room for her HS, because she gets large sores that form abscesses. While Allicia has not needed that type of care, she understands the pain the sores can cause when they flare up.
“The pain is so deep and powerful,” Allicia says. “It’s all-consuming. Your whole body feels this tiny little spot of pain, and it gets intense.”Through her experience with HS, Allicia has learned that she has a very high pain tolerance. When she worked in hospitality and retail, she often worked through painful flare-ups.
“I needed to work,” Allicia says. “Working through the pain made me realize that I am a lot stronger than I give myself credit for.”
Managing life with a chronic condition
These days, Allicia homeschools her son. She knows how to care for her condition. And she has steadfast support from family and friends. But she still faces frustrations related to her HS and struggles with some of the truths about it, such as:
There is no known cause.
There is no cure.
The sores can clear and then return over and over.
There is also the emotional toll. Allicia knows how insensitive people can be when they notice the sores, even when it’s not intentional.
She was swimming in a pool with her son recently. As she went to lift him up, she hesitated because there were lots of people around. “I didn’t want to lift my arms up and call attention to myself,” she says.
But on the bright side, she’s learning to trust her gut more. Allicia says becoming a mom has taught her how to do that. Caring for herself and her son gives her confidence.
To manage her condition, Allicia washes daily with antibacterial cleansers. She showers in the morning and takes a bath at night. Swimming in a chlorinated pool helps, too. So she hopes to join a gym soon and be able to swim regularly.
She also plans to return to her dermatologist. “My fiancé told me there might be other options I could try,” she says. “I know I need to go back.”
Tips for living with HS
Allicia encourages anyone who thinks they might have HS to see a dermatologist. She also offers these tips:
Believe in yourself. You are not dirty or fat; this condition is not your fault.
Seek care early. Do not wait it out.
Do not let family members or your doctor make you feel bad about yourself.
If your doctor does not offer solutions, find one who regularly treats HS.
Do not delay care because of a bad experience with one doctor.
Try out different cleansers to see what works for you.
Do not isolate yourself; find support. Search for online support groups that might be a good fit.
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