Although hidradenitis suppurativa (HS) affects the skin, it also has a big impact on mental health. The painful bumps and sores can make you feel embarrassed, misunderstood, and alone. Finding support from those who understand is important for managing the disorder. The following simple steps can help you build the network you need.
Hidradenitis Suppurativa and Mental Health
Research shows that people with HS are nearly three times as likely to have depression. They also have double the risk of having anxiety. "Hidradenitis suppurativa can wear you down mentally," says Steve Daveluy, MD, a professor and program director at Wayne State University Department of Dermatology in Detroit. You may feel embarrassed or upset by your symptoms. The flares cause unsightly bumps, sores, and scars, usually in the armpits, groin, buttocks, and breasts. They burst and can leak blood and a stinky pus, so you may stress about it leaking onto your clothes and smelling bad.
You also have to live with chronic pain. The bumps can cause itching, throbbing, burning, and shooting sensations. "It feels like having a golf ball covered in spikes beneath your skin, which hurts every time you move," says Melonie Brown, a patient and the secretary of Hope for HS, a nonprofit patient advocacy and support group. This can make it hard to exercise, sleep, and work.
To make matters worse, many health care providers aren't familiar with HS. You may not get proper treatment right away: It takes an average of seven to 10 years to get an HS diagnosis. When Brown first had symptoms, her doctors wrote them off. "They told me it was an issue with my personal hygiene," she says. "Not only was it frustrating, but there's also a stigma attached to being told you're unclean."
This combination of factors can leave you feeling isolated and alone, says Brown. You may start to withdraw from your normal life, and grow angry, anxious, and depressed.
The Mental Health-Inflammation Connection
Stress, anxiety, and depression may make your symptoms worse. "Hidradenitis suppurativa is an inflammatory skin condition," says Danilo Del Campo, MD, a dermatologist at the Chicago Skin Clinic. Skin inflammation drives the painful bumps during your flares.
The problem is that stress can trigger inflammation. You may also not sleep well or eat as healthy when you're feeling down. This can create a negative cycle: HS causes you to feel stressed or sad, which triggers inflammation that worsens your symptoms, says Del Campo.
Build Your Support Network
Having the right social and emotional support can help you better handle the ups and downs of HS. These steps can help you get started.
Reach out to family and friends. Telling your loved ones about the condition can help them better understand what you're going through, says Daveluy. Before the conversation, decide on how much you want to share. You may not want to discuss certain details, and that's OK.
Find a time when you're not rushed. Your friends and family probably won't know much about HS, so be ready to answer questions. You can share websites and resources about the condition. Have an honest conversation about how they can best help and support you. For example, you may need breaks or cancel plans during a flare-up. Or they can help run errands, change bandages, or just listen.
Partner with your doctor. HS isn't very common, and some doctors aren't very familiar with it. Ask for a referral to a dermatologist who knows about HS. The HS Foundation's provider database can connect you with a doctor who specializes in HS.
Join a support group (in person or virtual). Talking to other people going through the same thing can help you feel less alone and more connected. "When I found a support group, it was such a relief," says Brown. "It's empowering to discover you're not the only one on this HS journey."
There are different kinds of support groups. Some meet in person, while others are held virtually. During meetings, people can talk about their feelings, share advice, and ask questions. Many support groups are run by a medical professional, such as a nurse, doctor, or therapist.
How can you find an HS support group? Search for one run by a patient advocacy group, such as Hope for HS or HS Connect. Or ask your doctor for a referral. If there's not an HS support group in your area, consider attending one for people with skin conditions or chronic pain.
Connect with others online. If you're not comfortable putting yourself out there, an online forum or social media group is another good option. Following people with HS on social media can give you a sense of community, says Brown. But keep in mind that there's a lot of misinformation about HS. Always talk to your doctor before taking medical advice and trying something new.
Consider an advocate. Managing your HS and treatments can take a lot of work. There's no one medicine that works for HS. You may need to try a combination of treatments, such as antibiotics, retinoids, and pain medicines. Having someone who can help you navigate your care is useful. You may want to ask a loved one to take notes during your doctor's appointments and help coordinate your care, suggests Del Campo.
Talk to a mental health expert if needed. Nearly 1 in 3 people with HS have a mood disorder, such as depression. Your doctor should check in with how you're feeling mentally. If you don't feel like yourself, ask about your options. You may benefit from seeing a mental health expert, such as a therapist or psychologist. "I remind my patients that they shouldn't feel embarrassed or ashamed in any way," says Daveluy. "HS is not your fault, and addressing your mental health is important in managing the condition."
Show Sources
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SOURCES:
American Academy of Dermatology: "Hidradenitis Suppurativa: An Overview."
Steve Daveluy, MD, professor and program director, Wayne State University Department of Dermatology, Detroit.
Danilo Del Campo, MD, dermatologist, Chicago Skin Clinic.
HS Foundation: "Hidradenitis Suppurativa Provider Database," "Understanding HS and Pain," "Talking About HS."
Journal of the American Academy of Dermatology: "Association Between Hidradenitis Suppurativa, Depression, Anxiety, and Suicidality: A Systematic Review and Meta-Analysis."
Skin Appendage Disorders: "Diagnostic Delay in Hidradenitis Suppurativa: Still an Unsolved Problem."
