It’s no secret that living with hidradenitis suppurativa (HS) can complicate daily life, so myHSteam aimed to pinpoint exactly which aspects of the condition are most impactful.

To evaluate how HS affects daily activities, myHSteam conducted an online survey and shared the results at the Symposium on Hidradenitis Suppurativa Advances conference hosted in September by the Hidradenitis Suppurativa Foundation and Canadian Hidradenitis Suppurativa Foundation. The survey outcomes, shared below, may not surprise those who live with the daily symptoms of HS.

Authors on the study included Dr. Christos C. Zouboulis, Dr. Iltefat Hamzavi, and Dr. Hadar Lev-Tov. The research was made possible by support from pharmaceutical partner UCB.

The survey results show why it is so important that doctors and other health care professionals recognize real-life examples of living with HS, so they can better understand the burden HS places on people with the condition.

Symptoms of HS From Those Who Know

On average, myHSteam members who took the survey reported experiencing 9.7 different symptoms, including pain, limited ability to move or lift their arms, leaking, itching, depression, and anxiety.

Members of myHSteam describe their symptoms:

• “I’ve been in constant pain from head to toe.”
• “I have a very large boil that had burst once and came back the next day. Swollen and very painful. I can barely walk, sit, or do anything. This has been going on for about two weeks now. I am so frustrated.”
• “I was up all night, scratching like a lunatic.”
• “I just want to be able to be myself again without constantly worrying about this disease and its symptoms.”

The Most Common Places To Experience HS

HS boils, lesions, and abscesses primarily affect people in their groin or genital areas and their armpits. When these areas of the body are impacted by lesions, it can be difficult to sit down, walk, or even go to the bathroom.

As one member of myHSteam wrote, “I have a lump right where my thighs rub together. It's the worst feeling in the world. I can't sleep, walk, or sit.”

HS can also make intimacy challenging. Another member said, “I’m constantly thinking about what will happen if my boils leak or if they are smelling — and sex is a thing of the past now that I'm dealing with this disease.”

How HS Affects Daily Life

Many people with HS find themselves uncomfortable with the idea of intimacy. Fears around smell, leakage, and scarring make myHSteam members self-conscious. One member asked, “Does anyone else become self-conscious when it comes to intimacy?” Another said she wished she could “not be ashamed about my health and what I look like without my clothes.”

In addition, survey respondents noted that they plan what they’re going to wear because HS limits their clothing choices. As another myHSteam member added, “I can't wear tank tops or anything that would expose my inner thighs.” Another said, “The scarring they leave is terrible. I now wear shorts when I go swimming, as I can’t bear to see them.”

HS makes many people with the condition feel anxious or stressed, and many also become depressed about it. Members of myHSteam say:

• “I try to be a social person, but it’s hard when you are in pain a lot of the time, and now I have all the holes and lumps on my face. It is embarrassing to see people.”
• “I have felt dirty and rotten for most of my life, constantly in pain, and had big periods where I've been unable to walk.”
• “I suffer from depression, as I feel ugly, contaminated, dirty, and useless.”
• “I have no confidence. … I get anxiety and don’t believe my partner now when he says I'm beautiful and he loves my body.”

Talk With Others Who Understand

On myHSteam, the social network for people with hidradenitis suppurativa and their loved ones, more than 23,000 members come together to ask questions, give advice, and share their stories with others who understand.

How has your life been impacted by HS symptoms? Share your experience in the comments below, or start a conversation by posting on myHSteam.