People with hidradenitis suppurativa (HS) are more likely to experience mental health problems like anxiety and depression compared to people without the condition. HS, or acne inversa, is an inflammatory skin condition that causes physical pain — and many people with the condition experience self-consciousness and stress, which can affect their mental health.
If you are living with HS and facing mental health issues, you’re not alone — and there are ways to get help. Finding the right mental health services can help you work through your feelings and experiences and improve your quality of life and sense of well-being.
Hidradenitis suppurativa is connected not only to depression and anxiety but also to schizophrenia, bipolar disorders, and substance abuse (including alcohol). Research has found that people living with HS are also more likely to commit suicide. If you experience negative social effects or stigmatization because of HS, your risk of mental health consequences rises even more.
It’s important to note that researchers are unsure if HS causes mental health disorders or if there are factors that predispose some people to both HS and mental health conditions. It’s easier to understand how living with chronic pain or social stigma from HS could cause anxiety, depression, and substance abuse — but it’s less clear how HS may relate to schizophrenia or bipolar disorder. However, these conditions are all comorbidities (conditions likely to occur alongside another condition) of HS.
Some members at myHSteam have experienced mental health problems that they tie to the condition. One commented about how they feel depressed when they observe how HS has changed their life. They said, “I always find depression hits as I’m recovering … once I’m draining and healing, my mental health hits the floor because the feeling of hopelessness, sadness, and sometimes anger at what I’ve lost or how my life has changed sets in.”
Another member shared that they struggle because of the way HS interferes with basic daily tasks, like self-care. “I can’t seem to find a way to cope and provide myself with things that will make me feel human, like showering,” they said.
Feeling isolated and fearing that struggles with HS may never end can also negatively affect a person’s mental health. A myHSteam member shared, “My body and mental health have really taken a beating the last few months.” Another added, “No one really understands what I am going through, my mental health is so bad.”
Mental health struggles can occur in people living with HS, but you don’t have to stay in that difficult place.
If you’re struggling with your mental health due to HS, it’s time to get some help. Accessing mental health services can feel overwhelming, but it will pay off when your quality of life improves and you feel better about yourself and the condition.
In addition to addressing your mental health head on, make sure you’ve found the best possible treatment options or treatment plan for your HS symptoms. When your skin disease is under control and you have good pain-management options, you may be less likely to experience negative mental health consequences from the condition.
Before you reach out to a therapist, counselor, psychiatry expert, or another mental health provider, get some referrals. Your dermatologist or dermatology team may be able to help you find someone local who specializes in working with people with HS or those in chronic pain. If you are a person of faith, your clergy may be able to connect you with someone who shares your beliefs.
Your insurance company is another good place to go for referrals, as they will connect you to providers they cover. Your employer or your local mental health center may also be able to help.
Finally, talk to people you know, especially those with HS. They may be able to refer you to providers they know or have worked with personally, which can help you feel more comfortable reaching out for care.
Even if you aren’t experiencing any mental health struggles right now, it’s a good idea to find a provider should you need help later. Establish a relationship with a counselor, explain HS and how it affects you, and begin meeting regularly. This can help you deal with the everyday stressors associated with life with HS.
One myHSteam member advocated for counseling for all people with HS. They said, “I think that nearly everyone that has HS needs to have mental health counseling as the stress of the disease is horrendous.”
Another found that having a mental health provider helped them learn to stay positive, even when HS was bad. They shared, “Knowing how to stay positive is rough, especially when you're not sure how long it will last. It's something I'm still working on honestly thanks to my therapist.”
If you’re struggling to find a mental health provider near you who meets your needs, consider getting online support. Although online mental health support is relatively new and needs more research, initial studies indicate that it’s effective.
Online mental health support may also be more affordable than in-person support, especially if your insurance will not cover what you need. A wide variety of therapy types are offered online. Online support can be especially helpful during an HS flare-up, when driving to and from a therapy session and sitting in an office might be particularly uncomfortable. When you can get mental health support from your bed, you might be more likely to access it and use it.
A myHSteam member enjoys online therapy and said, “I have a new therapist online … and I have hit it off with him.”
Support groups can connect you to other people living with HS who will be able to understand what you’re going through and help you navigate the ups and downs of the condition. Several HS-specific organizations offer groups that may meet either online or in your local area. You can also find support at myHSteam.
At least one myHSteam member has found support groups to be of significant help in their life. “I have seen many changes since my diagnosis so don’t get discouraged, having a support group is a wonderful tool to work with to help you with HS!” they shared.
If you are experiencing significant mental health challenges or are having thoughts of taking your own life, it’s time to get help urgently. If you or someone you know needs help, you can contact the 988 Suicide & Crisis Lifeline by calling or texting 988 or chatting online. They will help you through your time of urgent mental health needs, then help you access additional services to support you as you continue living with HS.
If your need is less urgent but you still need help soon, you can also call the Substance Abuse and Mental Health Services Administration (SAMHSA) National Helpline at 800-662-HELP (4357). This referral line can help you find affordable mental health care 24 hours a day.
If you have a counselor already, you can keep their number or other contact information available, too. While they may not be able to pick up at all hours of the day, they’ll be there for you when they can. During a crisis, it can be easier to talk to someone you already have a relationship with.
MyHSteam is the social network for people with hidradenitis suppurativa, and their loved ones. On myHSteam, more than 33,000 members come together to ask questions, give advice, and share their stories with others who understand life with hidradenitis suppurativa.
Are you living with hidradenitis suppurativa? Do you have any tips for accessing mental health services? Share your experience in the comments below, or start a conversation by posting on your Activities page.