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Living with hidradenitis suppurativa (HS) isn’t always easy. Pain, depression, stigma, and more can affect how you feel every day. Whether you’re seeing a dermatology expert or another health care professional for your symptoms or managing most of them at home, experiencing the challenges that come with flares can be hard.
No matter where you are on your HS journey, it’s important to remember that you’re not alone. Whether you’re just starting or if you need some encouragement along the way, it may be helpful to see how other myHSteam members are coping.
HS is a skin condition that can affect your daily life in many ways. It may lower your quality of life, too, so it’s important to understand what’s going on so you can take action to make some changes.
The pain from HS can make daily tasks more challenging. One myHSteam member shared, “The pain is almost unbearable. Ever been in so much pain you don’t want to eat?”
Sometimes, HS causes people to miss daily activities like school. One member shared about their son: “He’s been missing school and school is on my back, too. I don't know how to help him anymore. I’m angry at him, yet it’s not his fault. I’m very frustrated.”
HS can also make working hard. “If I wasn’t so sick, I could just get a job and all this would be so much easier!” one member exclaimed.
HS also affects all sorts of relationships, including intimate ones. In fact, the condition can make it hard to meet someone new. “It is hard for me to meet people and trust someone enough to be intimate with,” a member shared. “Not everyone can look past some bumps near your naughty bits.”
People who have intimate relationships may struggle with the physical side of things. “My husband is supportive but yeah, it kills the mood for me. I don’t want him to see, feel, or smell this outbreak during sexy time,” one member said.
HS can affect the rest of your social life, too. “My social life is nonexistent,” one member lamented. “I can’t go anywhere without worrying about where I sit and whether my homemade bandages will hold up. It’s exhausting.”
Depression is common among people who live with HS. “Sometimes, it’s hard to want to go on,” a member shared. “I mean I’m strong and all that. But it’s so painful at times and knowing that it will just come back next month is discouraging. I feel so alone at times.”
HS is also linked to higher rates of anxiety. Some of this anxiety can come from self-consciousness due to HS, as it did for the member who explained, “I get anxious because now I feel people are staring at me thinking I’m sick, and the anxiety produces more sweat. It’s just awful.”
Fortunately, there are many ways to cope with the pain and distress that can come from an HS flare-up:
Several members at myHSteam rely on heat, ice, or a combination of both for relief. This is in sync with what some dermatologists recommend.
“I find hot Epsom salt baths work well and help with pain management, so to speak,” one member shared. Another added, “The only relief I get is when I’m soaking in a tub. But I’m a mom, so I can’t do that all day.”
Keep in mind that it’s important to avoid overheating when you’re using heat on HS lesions. HS symptoms may get worse if you sweat or get too hot, so limit your use of heat to 10 minutes at a time.
Others prefer ice, like one who explained, “I used to use a heating pad all the time … but I switch up between that and an ice pack.” Yet another person said they use ice alone: “I used an ice pack on my bump to make the inflammation drain.”
Medications may help with pain, infection, and other aspects of HS. For instance, some studies suggest that the topical antibiotic clindamycin (Cleocin T) is effective in treating HS symptoms, and it’s often combined with an oral antibiotic, like doxycycline.
Some members find medications useful, like one who said, “My HS spots are healing and no new ones yet. Doxycycline and clindamycin are working!”
Other members have found success with using nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen or aspirin. “I took some ibuprofen and the pain went from a 10 to a 4,” one member said. Another wrote, “I use ibuprofen at the height of the pain. It works!”
Others find that their doctors want them to try medication before other options, like surgery. “I've just seen the surgeon,” someone explained. “He’s referring me to a rheumatologist for biologic medication.” Many members of myHSteam have tried or are getting started on a biologic medication for moderate to severe HS like one who said, “Derm started me on new Rx Cosentyx, which so far has been GREAT!” (Biologic medications are made from living cells.)
Outside support can be key to feeling better with HS and managing difficult emotions.
Family members and friends can provide some of this, as they did for a member who shared, “I have all the wound care, medication, and outside help from family I need and yet still struggle to take care of myself. I haven’t talked to anyone outside my family for months.”
However, you may want more support or different kinds of support than what your relatives can offer. A therapist or a counselor may be able to help. “I have a therapist appointment today and I’m hoping to get my mental health in a good balance,” one member shared. Another asked a friend, “Please, please find a counselor that you can talk to and find your beauty again.”
Getting support from others who live with HS can be important, too. Some people find that kind of atmosphere at myHSteam, like one member who said to another, “Welcome to the family. I feel you’ll be happy with the understanding and support from this site.”
No one knows exactly what causes HS, but members report being able to figure out what triggers it for them. Then, they can make lifestyle changes so they experience fewer abscesses, lesions, boils, and other symptoms.
One member shared, “I haven’t had an outbreak in some years. I did decide to change my lifestyle and eating habits. I've been back and forth with being a vegan.” Another said, “Over the years, I have managed to identify the strongest triggers for myself. By removing these food items/types, I now don’t get massive boils as frequently.”
Factors other than food can be triggers, too. One mother shared this about her son: “I think heat might be a trigger for him, so I’ve just bought an air conditioner for his room. I hate him having this condition.”
If you’re not sure what triggers your HS or how to manage it, talk to your health care provider. They'll be able to help you figure out what brings it on and what you should do if you experience a flare.
On myHSteam, the social support network for people with hidradenitis suppurativa, and their loved ones, more than 43,000 members come together to ask questions, give advice, and share their stories with others who understand life with hidradenitis suppurativa.
How would you describe your life with hidradenitis suppurativa? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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Steven Devos, M.D., Ph.D.
received his medical degree and completed residency training in dermatology at the University of Ghent, Belgium.
Learn more about him here.
Sarah Winfrey
is a writer at MyHealthTeam.
Learn more about her here.
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