Life with hidradenitis suppurativa, or acne inversa, comes with many challenges. In addition to painful physical symptoms, many people with HS also experience the psychological effects of having a chronic skin condition that causes distress in their life. In fact, people with chronic health conditions are at higher risk of developing depression.
To understand more about how people living with HS experience mental health challenges and can develop ways to cope with depression, myHSteam spoke with Eunice Yu. Yu is a behavioral therapist with more than 10 years of experience working with children and adults with chronic illnesses and emotional disorders. She works with people who have chronic skin diseases such as eczema and HS.
“Studies reveal that depression is really common in both pediatric and adult patient populations who have HS because of the effect it has on your mental health well-being,” Yu commented. “In one study, over 38 percent of participants with HS had depression, while only 2.4 percent of the healthy non-HS control groups had it. The pain, inflammation, and emotional stress of having HS seem to play a really prominent role in the prevalence of depression in this population, as well as many other chronic and long-term conditions.”
A review of 10 studies found that depression and anxiety are common in people with HS and called for more work to be done to help recognize and treat mental health concerns. In another study, researchers in Denmark observed more than 7,000 adults diagnosed with HS. Participants with the skin condition were found to have higher rates of depression and suicide than those without it.
Note: If you or someone you know needs help, you can talk with the National Suicide Prevention Lifeline by calling or texting 988, or you can chat online here.
Several symptoms may suggest you’re experiencing depression related to your HS condition. Yu shared the following list of these possible indications:
The American Academy of Dermatology Association notes that feeling sad, hopeless, or apathetic for at least two weeks may indicate that you’re experiencing depression.
“People with HS often feel the need to self-isolate,” added Yu. “They experience mood disorders and feelings of low self-worth, which correlate with depression, as well as having physical limitations in day-to-day activities due to the very painful open sores and lesions on the skin that we know are part of having this condition. When you experience these emotions and symptoms, it is usually a sign that you should be seeking help.”
HS can come with an emotional burden due to feelings of self-consciousness, a negative body image, and low self-esteem, especially when you have chronic pain and flare-ups. It can also be hard to navigate social situations. The physical and emotional effects of HS can significantly affect quality of life, according to a survey among members conducted by myHSteam.
Researchers at the University of Copenhagen interviewed 12 individuals and conducted focus groups to try to better understand how HS affects quality of life. They found that living with HS significantly impacted almost 60 percent of the interviewees, both psychologically and socially. Participants shared problems related to emotions, self-worth, social stigmatization, intimacy, general frustration, and the need for a community where they can safely share their concerns with people who understand what it’s like to live with HS. Some also expressed challenges with taking time off from work and being afraid of losing their jobs as a result of having to request repeated sick leave.
One myHSteam member shared, “I was doing so well with so many things to help my body and mental health. Then I got to thinking about all the things that HS has and will continue to take from me. I lost my way for a few weeks with what I have been eating, my stress level, and my mental health. Well, I’m not going to let my HS continue taking things from me. So I’m here to find my way again.”
If you’re experiencing symptoms of depression, it’s important to talk to someone who can help. Whereas your primary care physician and dermatologist can help in treating the physical symptoms of HS, you may also benefit from speaking with a counselor, psychologist, or other mental health professional. In addition, support groups and networks can allow you to openly share your experience in a safe and supportive environment.
“The psychosocial impact of HS should be addressed proactively,” said Yu. “Reach out to your medical provider, your family, or your support network. There are organizations out there like the HS Foundation and myHSteam, which exist as a place for people to get resources, whether for support or day-to-day living and coping at home.”
One myHSteam member encouraged a newer member, saying, “I’ve had this for 35 years. We all feel physical and emotional pain to varying degrees. We know how it feels to think ‘Why me?’ I’m sure a lot of us know what it’s like to lose our friends and social contacts because of HS. You are NOT alone, and, here, you are safe to say what you’re feeling. No one will think less of you for feeling bad. 🤗”
In some instances, medication can be helpful in relieving depression. “This is truly a question for your health care provider. If you’re looking to treat your depression with medication, consult with your medical provider to see if it’s a viable option,” Yu said. “There are other ways to treat and cope with depression, including therapy, social support groups, exercise, meditation, and other homeopathic routes.”
Finding strategies to cope with depression related to living with HS is one of the best ways to improve your quality of life. In addition to seeking help from a professional when you need it, you could try daily rituals, such as:
“Whatever the activities are, just give yourself the commitment and consistency to check in with your own mental health. But most importantly, carve out specific times throughout your workday, your school day, and while you’re at home when you can prioritize yourself and give yourself that grace and kindness to exist with HS — and with everything else going on in your daily life,” Yu advised.
One myHSteam member shared, “For the longest time, I felt alone and still do. I have low self-esteem and depression that I hide from my family. Now that I am in my 30s, I won’t let HS define me anymore. Don’t lose hope. If you start having negative thoughts, get out of the house and do something fun.”
Yu also suggests adopting a mindfulness practice, repeating self-affirmations throughout the day: “You could say something positive to yourself, like ‘I am beautiful,’ ‘I am strong,’ or even ‘I have HS and I am fill-in-the-blank.’ Practice saying the affirmation to yourself throughout the day and saying it to your friends and family to acknowledge your condition and the fact that you’re owning it. You’re regaining control. You’re acknowledging your feelings. You’re acknowledging the social stigma, and you’re challenging your negative thoughts. Remind yourself, ‘Yes, this is tough. Yes, this is painful at times’ — but you’re in control. You’re [getting] through it day by day.”
Coping with depression and HS is an ongoing process. The good news is that there are steps you can take and people you can reach out to for help. “If you’re experiencing HS and depression, don’t worry when asking for help. It doesn’t mean you are less than or weak. You’re not limited to experiencing life this way. There are support networks out there. There are family and friends to talk to and rituals that you could experience and try. There is light at the end of the tunnel,” said Yu.
More than 28,000 members come together on myHSteam, the social network for people with hidradenitis suppurativa and their loved ones, to ask questions, give advice, and share their stories with others who understand life with HS.
Are you experiencing depression while living with HS? Share your experience in the comments below, or start a conversation by posting on your Activities page.