People who have HS experience high levels of psychological distress, and pain is a big factor, according to research published in September 2019 in the European Journal of Dermatology. “These patients really struggle sometimes, understandably, because they may spend every day in pain, or spend 30 minutes or an hour just putting dressings on every day,” says Christopher Sayed, MD, an associate professor of dermatology at the University of North Carolina School of Medicine in Chapel Hill. “It’s a huge amount of time they have to dedicate, a huge amount of stress.” Unfortunately, the stress associated with the condition could actually trigger flare-ups of HS, according to the National Organization for Rare Disorders. “The pain, the discomfort that people have from their HS contributes to their stress,” says Joslyn Sciacca Kirby, MD, an associate professor and vice chair for education in the department of dermatology at Penn State University. “The stress from their condition and just struggling with it as they go about their lives, in turn, can make HS worse.”
Stress Management Tips
The good news is that by treating HS and caring for your mental health, you can do a lot to help yourself feel better physically and mentally. Try taking these steps. Work with your doctor to find a treatment plan that works for you. By improving your HS symptoms, you might be able to reduce your stress. “A lot of patients would say, ‘My mental health would be much better if I could just get this disease better,’” says Dr. Sayed. This may involve reducing pain, drainage, and the need for bandaging so that HS doesn’t affect you as much, he notes. If your condition is not improving, you might need to seek the next level of expertise: a dermatologist who specializes in treating HS. The Hidradenitis Suppurativa Foundation maintains a list of HS specialty clinics. Your dermatologist can help you find the treatment or combination of treatments that’s right for you. There are many treatment options available for HS, including topical washes and creams, antibiotics, biologic medications, and surgical procedures. Make healthy lifestyle changes. Healthy habits — exercising, eating a nutritious diet, getting plenty of sleep, maintaining a healthy weight, quitting smoking if you smoke — can help people feel better overall. “At the beginning, I think it’s potentially challenging for some people to make a lot of changes in their health, because their HS is so flared up,” says Dr. Kirby. “But there is an opportunity as we help them get their HS under control to make some of those changes, whether it’s making dietary changes or finding activities they can do comfortably to help maximize their health and find ways of dealing with the stress and coping with the condition.” Reach out for help during stressful flares. Your healthcare provider can help you if your symptoms are flaring and causing you stress. “Somebody who has HS once described it to me as ‘the roller coaster from hell,’ because it can flare up suddenly without warning and really impact your ability to get through the next day or the next week,” says Kirby. “And so I think that it can be helpful for us as providers to work with people to recognize we have treatments for when [flares] happen, and we have treatments we can use in between flares to try and make them less frequent and less severe when they do pop up.” Call your doctor or send them a message through your online patient portal to ask for help instead of struggling on your own. Talk to a therapist or counselor. A mental health professional can teach you coping skills, which is helpful since stress might exacerbate HS symptoms. “Learning to successfully use stress management techniques is helpful for everyone, but it may be especially helpful for people with HS,” says Elizabeth Seng-Tamaccio, PhD, an associate professor of psychology at the Ferkauf Graduate School of Psychology at Yeshiva University in New York. A therapist or counselor can also help you work through any stigma you may face. “Most people with HS spend years dealing with these symptoms,” says Dr. Seng-Tamaccio, who notes that many may have had experiences with doctors who told them they just needed to improve their hygiene or bathe better. “It can obviously be devastating for your self-esteem,” she says. “Some people with HS may be dealing with the double stigma of racial stereotypes and cleanliness. A therapist or counselor can help you work through these issues and find resilience in the face of chronic disease and discrimination.” Your dermatologist or primary care physician might already partner with a team of health psychologists who work with people who have chronic conditions, and you may be able to either see someone in their practice or get a direct referral, says Seng-Tamaccio. You can find psychologists who specialize in health psychology through the American Psychological Association or the National Register of Health Service Psychologists. Another option: Start with your insurance plan, and search for the keyword “health” under the psychologists category to find one with training in chronic medical conditions, says Seng-Tamaccio. Join an HS support group. Connecting with fellow HS patients could help you feel less alone. “I think these communities can help people realize how normal their symptoms are for HS,” says Seng-Tamaccio. “You are not dirty. You are not disgusting. You are not at fault. You have a disease that is painful and difficult to manage. I also think these communities can be great places to share practical tips and resources about how to find care and manage the disease in day-to-day life.” Some local hospitals have support groups, so check the websites of your local medical systems. You can also find online support groups and in-person meetings in select cities at Hope for HS, a nonprofit organization dedicated to supporting people with HS. Try yoga, mindfulness, or meditation. Yoga, mindfulness exercises, and meditation can be useful daily practices for people living with a chronic disease, says Seng-Tamaccio. “In particular, yoga and other forms of nourishing movement can help people with HS reclaim their bodies as their own and become a source of beauty, strength, and personal expression,” she says. “Mindfulness and other forms of meditation can help people shift their perspective and build resilience.” Practice deep breathing. “I would highly recommend using deep breathing, or diaphragmatic breathing,” says Seng-Tamaccio. “Set aside a few five-minute periods to keep your stress levels low throughout the day.” To do it, lie flat on your back. Put one hand on your chest and another on your stomach. “When you breathe in, your stomach should expand (your hand on your stomach should move away from your spine). When you breathe out, your stomach should contract (your hand on your stomach should move in toward your spine),” says Seng-Tamaccio. “The hand on your chest should not move.” This activates the diaphragm, a muscle in your midsection that is under your lungs. Once you isolate the muscle, take deep, slow diaphragmatic breaths. “It can be helpful to count in and out,” Seng-Tamaccio says. “You may even start with a shorter count like 4 and then increase it to 5, 6, or even a count of 8 as you get more comfortable.” When you feel confident, try practicing deep breathing while standing and then while sitting up straight, suggests Seng-Tamaccio. “Practice it for 5 to 10 minutes every day, and then you will be able to use it in the moment when you are in a stressful situation,” she says. Start a journal. “Journaling can be a particularly helpful form of coping with trauma,” says Seng-Tamaccio. This can be especially helpful for patients with HS, as it can take an average of seven years to get a correct diagnosis for this frustrating condition, according to research published in October 2014 in the journal Best Practice & Research: Clinical Obstetrics & Gynaecology. “Many people with HS have legitimately traumatizing experiences with the medical system, where their symptoms were dismissed and they were blamed for their disease,” says Seng-Tamaccio. “Journaling can be a useful way to work through this type of trauma.” Speaking with a therapist or counselor might help you develop a series of journaling prompts that will guide you through processing what has happened, she says.
