For Katy Shusta, 28, a social worker from Tallahassee, Florida, helping others cope with hidradenitis suppurativa (HS), a rare skin condition that causes small, painful lumps to form under the skin, is personal. Shusta was diagnosed with HS when she was 17 and since then has had multiple surgeries to remove the affected skin on her abdomen, thigh, groin, and breasts.
She started documenting her health journey and educating others about HS via Instagram in 2020 (at @ksandhs and @thisiswhathslookslike). She also started an HS blog around the same time. Since then, she has been flooded with messages and questions from countless women living with the disease. “I feel an intense need to help however I can,” Shusta tells us.
Looking to garner some words of wisdom from someone like Shusta? Here, she shares the advice she gives HS sufferers most often. What works for everyone is different, but Shusta’s tips may just help you navigate your condition with a bit more confidence and ease.
#1: Bring a friend to your first doctor’s appointment.
When you’re first diagnosed with HS, it can be scary to hear the news of what this chronic skin condition can entail, says Shusta, who felt overwhelmed herself when she first got her diagnosis. That’s why she recommends asking a friend or family member to be there for your initial appointments with a healthcare provider. “I urge you to have that friend write down everything that is said during that appointment,” she says. “You’ll be told so much about HS and this is an important first step.”
#2: Create a social network.
Finding a community to support you when you have an HS diagnosis is crucial. “It’s easy to get isolated when you have HS and don’t know anyone else who has it,” Shusta says, adding, “I encourage people to lean on friends and family.”
Be prepared to explain what HS is and how it manifests on the skin since it’s a complex (and rare) condition. “As you open up to friends and family, they’ll learn how to support you,” she says. “It’s so cathartic to talk about what you’re experiencing and, while your friends and family can’t fix it, it helps to get out of your head about this diagnosis and all that it means for your future health.”
#3: Seek out professional help.
With an estimated one-third of people with chronic health issues experiencing depression and anxiety, according to the Cleveland Clinic, you might want to consider therapy, something that has benefited Shusta. “I still struggle with my diagnosis and I know it’s hard to come to terms with it,” she says. “I was private about my HS for most of my journey, but a therapist can help you open up about your feelings and find acceptance.”
#4: Find clothes that work for you.
While certain fabrics can be very uncomfortable when you have HS, Shusta felt empowered once she learned how to dress for her body. “I’ve gone on a journey with clothes and I know what fabrics work for my HS,” she says. This includes cotton pants—100 percent cotton leggings are best because they compress her skin, warding off skin irritation—and bras that need to fit just right. “If a bra is a little too big, the underwire will rub and cause a flare,” she says. “The band also has to be the perfect size.”
By focusing on what works for her, she has experienced a renewed love of fashion in the process. “You don’t have to give up and say ‘because I have this disease I can only wear leggings and a long-sleeved shirt,’” she says. “I like to play with dresses and layers. As long as the first layer feels good on my skin, I give myself permission to play with fun outfits.”
#5: It’s okay to factor in HS—every day.
When you have a chronic condition like HS, prepare to have it affect the decisions you make, Shusta says. The one thing she’s working on right now: Accepting her limitations. “I recently walked too much with a friend and afterward my HS flared a lot,” she says. “If I had been honest with my friend I probably would have said ‘I can’t do this today. I have to take a day off.’ I’m still working on that and part of my journey is to say ‘I am my HS and these are the ways it affects me.’ I think it’s important to share these experiences so people know they’re not alone.”
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