Getting through the morning has become more complicated since I was diagnosed with hidradenitis suppurativa seven years ago. I usually wake up to find pus or blood on my pillow and/or sheets. I groan as I examine my arms, breasts, and groin area to see what new lesions and boils have burst or formed. I might then spend an hour in my closet trying to figure out what to wear. What I really want to do is throw on some sweats so my lesions and boils aren’t aggravated, but that isn’t always realistic, especially on the days when I need to go out in public or go to work. I might have a breakdown in my closet while my dog stares at me, waiting for his walk. After giving myself a pep talk and telling myself that I’m going to make it through the day, I settle on an outfit, then grab some pain medication in case the discomfort becomes too much. Then I forge on with my day.
Hidradenitis suppurativa is a chronic condition that causes lumps to form underneath the skin, usually in areas where the skin rubs together, like the underarms, breasts, and groin, according to the Mayo Clinic. As anyone with the condition can tell you, these lumps can be agonizingly painful, and they can rupture or create interconnected tracts of abscesses beneath the skin.
This illness appears to occur when hair follicles become blocked, but experts don’t know the exact cause behind these blockages, the Mayo Clinic explains. (They do know hidradenitis suppurativa is not a result of poor hygiene or infection.) There are quite a few risk factors, though, including biological sex (it’s more common in women than men) and hormonal fluctuations. In my experience, I’ve found that my hidradenitis suppurativa tends to get worse before my period. Age is another risk factor in that the disease most often develops when women are between the ages of 18 and 29, the Mayo Clinic says. (Symptoms sometimes become less intense after menopause.) I was 22 when I started to show symptoms. I was extremely lucky that a doctor at my local urgent care knew about hidradenitis suppurativa and was able to diagnose me within a year.
Hidradenitis suppurativa takes a toll on both my mental and physical health. I usually have to nap at least once a day due to fatigue, and I’m so uncomfortable with people physically touching me because I feel embarrassed about how I look. Both the physical pain and the sadness that my body will never look the same bring me to tears on a weekly basis. I know I’m not alone in often feeling ashamed, anxious, angry, and sad. Dealing with all of this requires some solid coping mechanisms, and there are a lot of commonalities in how those of us with this condition handle it. So if you’ve recently been diagnosed with hidradenitis suppurativa, here are 10 small but impactful suggestions from people who have been there before you. We hope it helps.
1. Find a therapist, if you can.
This disease has taken a major toll on my mental health. Going to therapy weekly gives me space to talk about my emotions. I have also learned wonderful coping techniques from my therapist, including connecting with my physical being through body scans and navigating the guilt I feel when I need to cancel plans because of my illness. If possible, try to find a therapist who specializes in chronic illness and/or chronic pain so they are better able to help you and understand your experiences.
2. Take gentle yoga classes.
Moving my body is really important to me, but exercise can exacerbate hidradenitis suppurativa symptoms. This is especially true for high-intensity activities, like cycling. I fell in love with cycling classes a few years ago and would attend sessions four to five times a week. It felt so good when I was in the class, but afterward I would find myself in intense physical pain. I finally talked to my doctor, who suggested I try something else.
For some time I struggled to find an activity that didn’t make me feel worse. Enter restorative yoga. My friend took me to a class, and the instructor taught me how to listen to my body and only do poses that felt comfortable. I learned how to take breaks and go at my own pace. I left that class on such a high. Now I regularly attend restorative classes, and on my good days, I will even take a vinyasa class at a local yoga studio.
I’ve been meditating on a daily basis for six months, and I’ve found it to be so beneficial. It helps me get in touch with my body and become more attuned to its needs. I also work through a lot of emotions during meditation sessions, like the health anxiety that hidradenitis suppurativa has caused to become more intense. If I’m feeling overly anxious or in a lot of pain, I’ll meditate to ground myself. It reminds me that I am breathing and will be okay.
When I started, I would just do a quick five-minute session. Now I’ll either go to a class (the Den and Unplug are two of my favorites in Los Angeles) or use the Headspace app for 10 to 15 minutes. I’ve also been able to find drop-in, donation-based classes all over the city. This is a great way to give it a try before committing or spending a lot of money.
4. Connect with others who have the condition.
I first shared my story in 2017, and I found the response to be overwhelmingly positive. I still get emails weekly from other hidradenitis suppurativa warriors who say they feel less alone because I’ve talked about the condition, or who want to share a new coping strategy with me.
If you’re not ready to share your story with the world, finding someone else who has hidradenitis suppurativa can still help. When I’m feeling really isolated, I’ll DM with other people who have hidradenitis on Instagram. All of this reminds me that I am not fighting this battle by myself.
Krystle B., 38, is involved with hidradenitis suppurativa organizations and finds that participating in events with other people inspires her and makes her feel less isolated. “I have been a big part of giving back to the community by helping others who suffer from hidradenitis suppurativa,” Krystle tells SELF, adding that she’s in her second year on the annual #Walking4HS committee in Edmonton in Alberta, Canada. “Finding other patients who also have hidradenitis suppurativa and connecting with them [has been] epic.… That instant connection and support system was life-changing.”
It might even help to connect with someone who has another chronic illness. My best friend has Hashimoto’s, and while it’s very different than hidradenitis suppurativa, she can relate to the fatigue and unpredictability. I find myself in deep conversations with her often, and they help keep me going.
5. Surround yourself with a strong support system.
I’ve been really lucky that my friends and family are, for the most part, supportive and understanding of my condition. They help with both my emotional and physical needs. My mom flies out for any surgeries or intense treatments, and my friends take my dog for a walk on really bad days.
My dermatologist is also a crucial part of my support system and continues to offer support and encouragement. Finding a specialist who is knowledgeable about hidradenitis suppurativa is so important. At the hidradenitis suppurativa clinic at UCLA, I’ve found doctors who know more about the disease than I do, which hasn’t always been the case.
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.”
I find this kind of distraction to be really helpful as well. I love doing crossword puzzles and listening to podcasts about issues like chronic pain, depression, and anxiety, along with comedy podcasts that allow me to escape and just laugh. Some of my favorites are The Struggle Bus, The Terri Cole Show, My Dad Wrote a Porno, Alison Rosen Is Your New Best Friend, Invisible Not Broken, and This Is Not What I Ordered. I also love reading and try to find comedic books or ones that approach mental and physical health in a refreshing way. I recently read Furiously Laughing: A Funny Book About Horrible Things by Jenny Lawson, and it had me giggling all the way through while also reminding me that I am not alone. These are all things I can do on the days when I’m stuck in bed or on the couch.
There are so many ways to cope with hidradenitis suppurativa, and not all of them will work for you. Hopefully these tips can help you as you search for a knowledgeable specialist or the best treatment to relieve your symptoms. It can feel so lonely at times, but know you are not alone on this journey.
- My Chronic Skin Condition Made Me Quit the Gym
- I Have a Rare, Chronic Skin Condition, and I Went to Questionable Lengths Looking for a Cure
- As Someone With a Chronic Health Condition, Exercise Feels Like a Gift
Originally Appeared on SELF