5 Things People With Hidradenitis Suppurativa Wish They’d Known Earlier

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Learning to manage hidradenitis suppurativa can be an ongoing process. The chronic skin condition causes painful lumps under the skin, especially in the armpits, groin, and under the breasts, according to the Mayo Clinic. Sometimes, these bumps break open and release pus and fluids, which requires learning to care for your wounds.

Although there is no cure for hidradenitis suppurativa, you can manage your condition with medication and proper care. To help you figure out which strategies may work for you, we spoke to five people with hidradenitis suppurativa about what they wish they had known about the condition earlier. Hopefully, their stories can provide reassurance and guidance if you have hidradenitis suppurativa and are still learning how to best manage your condition.

1. Hidradenitis suppurativa can be emotionally exhausting.

Living with a condition that affects every aspect of your life, including how you dress or your ability to work out, can feel burdensome, especially during painful flares, says Becky A., 29. “Sometimes I find it so hard mentally to deal with. I get to the point where I just don’t want to look at it [the sores] anymore,” Becky tells SELF. She says that she questions if she’ll ever find relief during long periods of active lesions. “I find it so mentally draining.”

For Tom P., 31, choosing a wardrobe to accommodate his medical condition has been one of the hardest aspects of having hidradenitis suppurativa. “I didn’t understand just how much hidradenitis suppurativa would affect me mentally,” Tom tells SELF. “Where I live it’s very hot a lot of the time, but I’m so ashamed of the scars and active lesions that it makes dressing really difficult. Everyone else will be in tank tops and I’ll be in long sleeve T-shirts to hide the bandages.” 

2. Joining a hidradenitis suppurativa support group can help you get through tough days.

Many people we spoke with said finding others who understand the challenges associated with hidradenitis suppurativa provided a huge amount of comfort. You can find hidradenitis suppurativa support groups on social media platforms like Facebook and Reddit where members share their advice for managing flares or just vent to people who understand.

Tanya S., 28, was diagnosed with hidradenitis suppurativa when she was 18 years old but only started talking to others about it online about two years ago. “I felt like I was the only person struggling and no one could understand my condition for a long time. Talking to people in groups on Reddit, Twitter, and Facebook has made a massive difference,” she tells SELF. “I’ve got some great advice and no longer feel as isolated. It’s made a big difference in how I feel about my body and hidradenitis suppurativa.”

Hannah N., 33, says joining a support group has been invaluable in helping her cope with the stresses of living with hidradenitis suppurativa. If you are newly diagnosed with the condition, she suggests joining as many support groups as you can find. “Knowing you are not alone will make you feel so much better,” she tells SELF.

3. Regularly doing something that you enjoy can be a helpful distraction.

Navigating a chronic condition can feel all-encompassing at times. And for some people with hidradenitis suppurativa, dealing with chronic pain, regular medical appointments, and the stresses of daily life can make it feel like they have no reprieve. Since stress can trigger hidradenitis suppurativa flares, some people we spoke with recommended finding enjoyable distractions. To cope, Philippa J., 25, says she sets aside a few hours every week to do something just for herself. “I’m very much into self-care and try to set aside a few hours every Sunday to have a little pamper session,” she tells SELF. “Maybe that isn’t your thing. Maybe you love reading or cooking or knitting. But whatever it is that you love doing, try setting aside some time to focus on doing that activity.” 

4. Safely draining your bumps can help ease your pain.

Sometimes, you may develop a lesion that ruptures quickly and then begins healing, but unfortunately, that’s not always the case. “When you have a flare, it can last for weeks and never rupture. It’s a really intense pain, which only gets better once it drains naturally or with the help of a doctor,” Tanya says.

There are several ways to speed up this process. For the safest option, you can go to your physician who can make an incision in the abscess and allow it to drain, according to the American Academy of Dermatology. Using a clean washcloth to make a warm compress for the abscess can also help, according to the AAD. Although draining the lumps may help provide quick relief, it’s generally not a long-term solution, as flares can return. If you have reoccurring flares, working with a hidradenitis suppurativa expert, if possible, can help you navigate treatments.

5. Seeing a specialist, if you can, may help you get treatment more quickly.

Many times, individuals with hidradenitis suppurativa go years without knowing what their bumps are or how to care for them. In fact, people with the condition can go 7 to 12 years until they get properly diagnosed, according to a 2015 paper published in Mayo Clinic Proceedings. And when you have hidradenitis suppurativa, this can mean enduring years of chronic pain without the best treatments for your symptoms. For example, Tom was misdiagnosed and received treatments for acne until he started seeing a physician who referred him to a dermatologist. “My hidradenitis suppurativa flares first appeared on my neck, and for a long time, they were misdiagnosed as cystic acne,” he says.

Of course, not every doctor specializes in skin conditions, so if you think you have hidradenitis suppurativa, then it’s reasonable to ask your physician for a dermatologist referral. You can use the Find a Dermatologist tool on the AAD website and search for a physician by location and condition. (Here’s how to know if your physician is a hidradenitis suppurativa expert.)

Although there is no cure for hidradenitis suppurativa, a treatment plan that includes medication, home remedies, and lifestyle changes may improve your quality of life. If your symptoms become debilitating, then it’s important to find a physician who is knowledgeable about the disease and can help you find what works for you. And connecting with others who have hidradenitis suppurativa or finding a therapist can offer emotional support throughout the process.

Related:

  • 5 Ways People With Hidradenitis Suppurativa Take Care of Their Mental Health
  • 5 Signs Your Doctor Is a Hidradenitis Suppurativa Expert
  • 6 Ways Real People Manage Hidradenitis Suppurativa Armpit Flare-Ups

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