Anyone dealing with hidradenitis suppurativa can tell you that it can be extremely painful both physically and emotionally. The chronic skin condition causes lumps under the skin, especially in the armpits, groin, and under the breasts. If the bumps break open, they can be intensely painful, release fluids, and cause tunnels underneath the skin.
Oftentimes, people with hidradenitis suppurativa say they feel self-conscious about the way their skin looks due to flare-ups or scarring resulting from abscesses. And it’s understandable that you might feel emotionally drained from managing the concerns of this painful lifelong condition. But the stress from all of this can potentially lead to more flare-ups, which means looking after your mental health is an important part of managing the condition (not to mention helpful for your overall well-being).
Since this is often easier said than done, we asked people with hidradenitis suppurativa how they take care of themselves during difficult days. Here’s a few things that work for them that you might find helpful.
1. Participate in relaxing activities to reduce flare-ups.
Not everyone with hidradenitis suppurativa has the same triggers, but stress can lead to a recurrence of bumps, according to the National Organization for Rare Disorders. Bethan E., 28, finds that participating in relaxing activities helps reduce her hidradenitis suppurativa flares—and the emotional and physical pain that accompanies them. “For me, relaxing involves being outdoors, exercising, and cooking,” she tells SELF.
Sarah F., 28, agrees that she gets more bumps whenever she’s feeling particularly worried about something. “After a stressful week at work, I know that I’ll probably have a flare in a few days,” she tells SELF. To combat this, Sarah does her best to do things that make her feel calm. “I’ll make time to read books, and I find practicing meditation daily really brings my stress levels down,” she says.
Not everyone enjoys the same activities, so reading or cooking may not be your thing and forcing yourself to do these might stress you out even more. During times when you feel particularly anxious, you might want to try grounding techniques that help you avoid getting caught in a stream of worried thoughts. There are many methods out there, and you can do something as simple as running cold water over your face or practicing deep breathing. (Here are more ideas that can help.)
2. Find a community of people who have hidradenitis suppurativa.
Everyone we spoke to emphasized the importance of finding a community where you can lean on others for advice, offer your own tips, vent about flare-ups, and find people who understand the pain you are experiencing. Lindsey M., 23, gets this support by connecting with people on social media. “I find that speaking to my community on Instagram about hidradenitis suppurativa has led to others getting diagnosed. It makes me very happy that I am able to offer that support and help others find treatment,” she tells SELF.
Ghazal G., 34, agrees that finding a support group has been invaluable to her well-being. “The number one way that I work on my mental health in regards to hidradenitis suppurativa is to give back to the very community I belong in and to uplift my community members. I like to attend the Hope for HS virtual group meetings. I really enjoy getting to see people with hidradenitis suppurativa from around the U.S. and hear an expert give more information on their background and why they got involved with hidradenitis suppurativa care,” she tells SELF.
3. Write about your experiences and emotions.
For Sarah, journaling is a cathartic experience. “I struggle to talk to friends and family and explain how bad the pain can be, and sometimes I don’t want to talk to other people with hidradenitis suppurativa,” she explains. “When I’m having a flare-up I just want to be on my own, and I find that journaling helps me get through it. I pour all of my emotions onto the page and usually end up crying, but I feel better for getting it all out,” she says.