Hidradenitis suppurativa (HS) is often described as a skin condition. But for many people living with it, the emotional impact can be just as difficult as the physical symptoms.

Painful flares, scarring, drainage, and odor can be hard to manage. These symptoms don’t just affect the body. They can also affect physical, social, and mental well-being.

We reviewed dozens of comments from members of myHSteam about how the condition affects their mental health and self-esteem. Many described feelings of shame, depression, isolation, and even grief.

At the same time, members also shared ways they manage stress with HS, build self-esteem, and find mental health support.

🗳️ What do you find most helpful when you feel sad or alone?

Reaching out to a loved one, support group, or mental health professional

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4 Ways HS Affects Mental Health

Members of myHSteam have been candid about the many ways living with HS can affect their mood, self-esteem, and overall quality of life.

For many people with HS, symptoms can feel deeply personal and hard to hide. Scars, drainage, and odor can lead to feeling very self-conscious or worrying about how others may react.

“It makes me super depressed, and I’m always crying and feeling like I’m disgusting and falling apart.”

— A myHSteam member

This can take a toll on confidence. Some people avoid certain clothes, intimacy, or social situations altogether because of their HS symptoms.

One member shared how HS affects their self-image: “It makes me super depressed, and I’m always crying and feeling like I’m disgusting and falling apart.”

Another described feeling different from others: “I’m humiliated and feel like an alien amongst normal people.”

HS is a chronic inflammatory skin condition, and living with it over time can be exhausting. The cycle of flares, pain, and partial relief can feel never-ending.

Many members described feeling emotionally drained, overwhelmed, or stuck in cycles of depression and anxiety, especially during flare-ups.

One member put it this way: “It will eventually get to anyone because of the ongoing nature (chronic) of the HS condition. It affects everyone physically and mentally.”

HS can make it harder to stay connected to others. Pain can affect movement, sleep, work, and relationships, while embarrassment or fear of judgment can lead people to pull away from others.

“It is very painful, and the odor is bad, which causes me to isolate.”

— A myHSteam member

Some members described pulling back from work, relationships, or everyday activities. Others shared that even when they’re around people, they still feel alone, especially if others don’t understand what HS is like.

One member described how symptoms lead to isolation: “It is very painful, and the odor is bad, which causes me to isolate.”

Beyond day-to-day struggles, some people with HS describe a deeper sense of loss. They may feel like they’ve lost parts of who they used to be, including their confidence, independence, or sense of normalcy.

This can show up in many areas of life, including relationships, work, and self-image. Some members described grieving the person they were before HS became a major part of their life.

“I miss the person I used to be. That determination and zest for life. It’s just a bittersweet memory now.”

— A myHSteam member

One member shared fears about how HS could change their identity: “I worry that I’m going to lose the extrovert side of me. I’m trying to remain positive, but the last couple of days, I just seem to be overcome with the not-so-positive emotions.”

Another described a deep sense of loss over time: “I miss the person I used to be. That determination and zest for life. It’s just a bittersweet memory now.”

3 Ways To Boost Your Mood and Protect Your Well-Being

While living with HS can sometimes feel overwhelming, many members also shared ways they cope and take care of their mental health.

Support from others can make a real difference. The HS Foundation notes that therapy or counseling can help people cope with pain, stress, anxiety, depression, and changes in daily life related to HS.

Talking openly about how HS affects your mental health can help you feel less alone and more supported.

One member described the benefits of therapy: “It was one of the best decisions that I made for my mental health, navigating through this new diagnosis by speaking with someone that will be objective and give a different point of view. Giving me the tools to fight back. … [I’m] adjusting to a whole new lifestyle … just hoping to get back to wholeness.”

“It was one of the best decisions that I made for my mental health, navigating through this new diagnosis by speaking with someone that will be objective and give a different point of view.”

— A myHSteam member

Another highlighted the role of connection with loved ones: “Talking to family and friends to get my mind off the pain I’m in. I’ll call my mom when I get really depressed to try and cheer me up.”

Many members described finding small ways to care for themselves during flares or difficult days. These strategies don’t make HS go away, but they can help ease stress and difficult emotions.

Common approaches include journaling, meditation, music, rest, and creating calming routines at home.

“I would treat anyone else going through this with love, tenderness, and care, so I try to do that to myself.”

— A myHSteam member

One member described intentionally practicing self-compassion: “I switch into a mode of utter self-love and nurture. I make my room clean and cosy, I light a soy candle, I put on relaxing music, I have a shower, clean my wounds. … I would treat anyone else going through this with love, tenderness, and care, so I try to do that to myself.”

Another shared simpler coping tools: “Mainly I get a lot of rest, journal how I’m feeling, prayer helps me to cope, and breathing, like meditation.”

Some members described a shift in mindset over time. While HS may not go away, they focus on what they can control, including their attitude, routines, and how they respond to challenges.

Looking at challenges in a different way may help build self-esteem and give you a greater sense of control.

One member explained this shift: “I’ve had to push through some moments that I felt were just too hard, and now it’s, ‘This is my life and reality, and I can … decide to hide and let it beat me or stand up and take control and be OK with who I am, no matter what anyone says or thinks.’”