I’ve also learned to advocate for myself and ask for help, reminding myself that I know my body best and am not weak for needing assistance. Pooja P., 31, has also found that asking for help has been immensely helpful in coping with her hidradenitis suppurativa. “The people who love us want to support us but often don’t know how they can help—they feel helpless too. Asking for help can bring you even closer together and, in turn, make you feel less isolated,” Pooja tells SELF. She’s leaned on family and friends for everything from accompanying her to doctor’s appointments to stocking her fridge and washing her hair when she hasn’t been able to do so. “There is nothing weak about asking for help,” she says. “On the contrary, there is extreme strength in vulnerability.”
6. Use very gentle cleansers and moisturizers.
I’ve tried a variety of cleansers that are made for sensitive skin, but they usually caused intense burning pain when used on my lesions. Then my dermatologist recommended that I use an antibacterial and antimicrobial soap called Hibiclens every time I shower. It contains a 4% chlorhexidine gluconate solution, which helps reduce the risk of infection. This is especially important when taking a biologic that suppresses your immune system, which is a common form of hidradenitis treatment. I also just feel really clean and good after I use it because it doesn’t irritate my condition.
The Mayo Clinic also recommends using antibiotic or antimicrobial moisturizers for extra protection.
7. Create a wardrobe full of comfy clothes.
Having the right clothes is so important for ensuring that I feel comfortable and confident. I have tons of joggers, sweatshirts with fun sayings, tank tops, and looser shirts too. I love shopping at Old Navy, Target, Madewell, and Walmart. Since my clothes can get stained or wet easily because of my symptoms, I like to buy things that are cheaper so I don’t feel as bad when they get ruined.
8. Try to identify potential food triggers.
Pooja found that nightshades (like tomatoes, eggplant, and peppers) made her hidradenitis suppurativa worse, so she avoids these foods. “If I do eat a nightshade, I will get a hidradenitis suppurativa flare within 48 hours, 10 times out of 10,” she says. But as she points out, “just because they were my trigger doesn’t mean they are yours.”
Research hasn’t clarified what potential link may exist between foods like nightshades and hidradenitis suppurativa flares, but a 2019 review in the International Journal of Dermatology suggests that nightshades are thought by some to affect the skin-gut axis, or, basically, how the gut and skin are biologically connected. Other foods that are known to trigger hidradenitis suppurativa include dairy, red meat, and foods with a high glycemic index, according to the Mayo Clinic.
While I haven’t found any foods that definitely trigger my hidradenitis suppurativa, if I’m feeling okay I love to get in the kitchen and try out a new low-glycemic recipe. On my bad pain days, cooking isn’t feasible, but otherwise, I love to know what’s in my food. Cooking gives me a real sense of accomplishment.
9. Use hot water or a wet, warm compress to relieve itching and pain.
Starla M., 33, runs hot water on areas of her body that are itchy. (I currently take antihistamines to deal with the itching, but I’m looking forward to trying this technique.) If I have a new boil or one that is about to burst, I’ll use a warm, wet washcloth to help relieve the pain and swelling. I find it especially effective when I have boils in my groin area since these tend to become golf-ball-size and make it hard to walk.
10. Find a hobby you can do even on your worst days.
Krystle says that on her bad days, she focuses on finding things to do that distract her from the pain. “On some of my worst days, or when I’m recovering from [surgeries], I enjoy Netflix in bed with my two Cocker Spaniel fur babies. I’m also obsessed with antiques and spend a lot of downtime surfing the web for amazing treasures.”