Getting dressed used to be an ordeal for Suzanne Moloney, a 37-year-old in Galway, Ireland, who lives with hidradenitis suppurativa (HS).
The condition causes painful, acne-like bumps and boils that leak pus and are prone to infections.
HS has no known cure. Treatment focuses on managing symptoms and preventing complications.
The breakouts often occur in the armpits, groin, and inner thighs, as well as under the breasts. But in Moloney’s case, they were all over her body.
She did everything she could to hide the condition, which she first started experiencing as a teenager.
“I used to be a chef, and it was a very physical job. We always wore white uniforms, and I was very self-conscious about leaking onto my jackets or onto my checkered chef pants,” she says.
She’d stuff her sleeves and pants with adhesive wound dressings that were neither comfortable nor effective in a sweaty kitchen environment.
“The adhesives would be peeling away, and the rash I’d get from the dressings was almost as bad as the HS itself,” she explains.
Despite the challenges, Moloney kept her HS under wraps at work.
A bachelorette party in 2012 proved to be another story, though. She extended her hand to greet the mother of the groom and plop — her wound dressing fell out of her sleeve onto the floor of the party.
“In my head, it was the end of the world,” she recalls.
While embarrassing at the time, the incident would soon became a major moment of change — not only for Moloney, but for the entire community of people living with HS.
“I could not believe that it was 2012, and I was here cobbling together wound dressings to go to a party. I was angry and annoyed, and I decided to do something about it,” she says. “I started speaking to other people with HS and realized that people are really struggling with managing their dressings, and it’s one part of living with the disease that’s completely overlooked by healthcare providers.”
She got to work creating what would eventually become HidraWear, a brand of under-arm garments specifically made for people with HS.
The garments, designed to be gentle on skin and easy to put on, aim to protect clothes from leakages.
Feeling shame about her condition was no longer an option for Moloney. If the product was to be successful, she would need to be open about her experience with HS.
It took a while, but each time she pitched a product she made to a room full of people, uploaded a photo of her nodules to her website, and had a conversation about HS, Moloney grew more comfortable with her condition and herself.
“Coming to this acceptance phase is hard. I only really became comfortable with HS after I started HidraWear,” she says. “I’m very happy now to talk about it. Everyone who knows me knows I have HS.”
Moloney hopes that sharing her story will help others with HS avoid the “grueling” journey she went through, which involved years of keeping her condition and treatments a secret and often feeling humiliated.
Here, she shares her tips for finding comfort and acceptance with HS.
If you’re embarrassed about what HS does to your skin, it’s only natural to want to hide it from the world. But that can heighten your shame and make it difficult to come to a place of self-acceptance.
“The best thing you can do for yourself is just to talk to someone about it,” advises Moloney.
She says that being more open about her condition earlier in her life would’ve helped strengthen her relationships and receive more understanding when HS impacted her social life.
“There wouldn’t have been friction if I was late for an event because I was dressing my wounds, or wanting to go home early. People thought I was disorganized or just moaning,” she says. “If I could do it again, I’d have been way more open about it early on.”
HS may affect as many as 4.1 percent of people around the world, according to a
But despite the prevalence of the condition,
One way to feel less alone is to connect with others who have HS, says Moloney.
“It’s so important to tap into community,” she says. “There’s huge support in different communities online.”
Beyond providing companionship, joining the HS community also allows you to learn the creative ways others manage flares and build more awareness about the condition.
Here are a few HS support groups to explore:
You wardrobe plays a major role in feeling comfortable with HS, says Moloney.
Finding a comfortable and effective way to protect your wounds, either with an HS garment or another solution, is a good place to start. This may require some trial and error.
Aside from that, Moloney focuses on wearing clothing that makes her feel “comfortable and confident.”
“All my clothes are soft and comfy. I have a lot of leggings, loose tops, loose dresses, and loads of comfy cardigans I can get wrapped up in,” she wrote in a recent blog post.
In general, avoid tight clothing made from synthetic fabrics, which can aggravate HS lesions.
As her HS symptoms worsened in her teenage years and 20s, Moloney went from being a very active person to no longer participating in some of the activities she once loved.
“I was part of a softball team, and I had to drop out of a championship because I needed surgery,” she says. “There are some weeks where I can’t run, and I felt like softball was off the list of things that I could do.”
But over time, regular physical activity became an important part of Moloney’s journey toward finding comfort with HS. She now enjoys a mix “yoga, rambling walks, and hikes,” depending on how her body feels.
“When I’m well, I like to be more active. And when I’m very unwell, I can be very sedentary for a few days, but I always try to get out for a short walk just to move my body,” Moloney says.
As frustrating as HS flares can be, focusing on the parts of yourself and your body that you love can make a big difference in your self-esteem and comfort, advises Moloney.
“Instead of always feeling like my skin is so disgusting or I’m smelly, focus on the good things sometimes and try to change your perspective a bit,” she says. “Try not to just focus on the physical aspects of the disease.”
Moloney admits that self-love can be easier said than done when you feel like your body is working against you.
“I’ve had really dark days, like everyone does, and it’s possible to come out of it,” she says. “It’s hard, but sometimes you just have to challenge yourself and your thoughts, and look for different perspectives on what’s happening.”
Changing your response to your HS flares by giving yourself a break when you need it, rather than trying to push through a challenging time, can be the ultimate act of self-acceptance.
It’s important to keep the situation in perspective. Your health comes first.
“HS does feel really persistent sometimes because you can be having a really good day, and it can come back and ruin your day,” says Moloney. “But I try to remind myself that this will get better and I’ll have better days in between. It helps me not to dwell on it too much.”