People with hidradenitis suppurativa (HS) often experience stigma, which means that they are made to stand out or have a sense of shame because of their HS. These feelings of stigma can be internalized or externalized. Internalized stigma refers to how people perceive themselves. Externalized stigma is based on perceived or actual actions by other people such as friends, partners, co-workers, or healthcare providers.

To better understand these experiences, myHSteam conducted a survey of myHSteam members. The survey asked questions about:

• How HS affects the way people think of themselves
• How others act toward people with HS
• Experiences with depression and anxiety

The questionnaire was developed by myHSteam and a team of HS doctors. The survey was funded by a pharmaceutical company. In addition to sharing the highlights of the results here, myHSteam presented some of the survey findings at the recent Symposium on Hidradenitis Suppurativa Advances (SHSA). This gave the broader HS community a chance to learn more about the experiences of people living with this disease.

Read on to find out more about the myHSteam survey results.

Who Took the Survey?

The survey was completed by 350 members of myHSteam. Most respondents (83 percent) have moderate HS (Hurley stage 2) or severe HS (Hurley stage 3). In addition:

• Eighty-six percent are women.
• Sixty-one percent live in the United States and 26 percent in the United Kingdom.
• The participants’ average age is 47 years old.
• Of the participants in the U.S., 58 percent identify as white, 25 percent as Black, and 10 percent as Hispanic/Latino.

84 Percent Have Feelings of Shame or Self-Consciousness Because of HS

The vast majority of survey respondents (84 percent) reported that they themselves or someone else had made them feel self-conscious or ashamed about their HS. Additionally, 49 percent reported they’d experienced external bias in the previous year. Specifically, they felt hassled, made to feel inferior, or discriminated against in at least one of the following circumstances:

• A relationship
• A social interaction
• While receiving medical care
• At work or school

“People refer to it as nasty and think I’m contagious,” one myHSteam member said.

Dr. Gretchen Roth, an author of this study, sees people with HS through the Froedtert and the Medical College of Wisconsin. She explained, “I see patients every week who come in feeling overwhelmed with their HS and how it affects their lives. Often it has taken them years to get a diagnosis, and once they do, it can be the beginning of a long journey to find the right combination of treatments that will help them. I try to partner with each patient to understand how their HS affects them, what their goals are, and how we can work together to start or adjust their treatment.”

Those Who Faced Bias Were More Likely To Say HS Affected Their Daily Lives

Respondents who faced stigma and bias from other people were significantly more likely to say HS negatively affected different aspects of their daily life compared to those who have not experienced bias from others. In other words, those who were made to feel self-conscious or ashamed because of their HS also were more likely to say that HS affected intimacy, social interactions, going to work or school, leaving home, and even going to a doctor.

Those Who Faced External Bias Were Also More Likely To Feel Badly About Themselves

Those who faced external bias also were significantly more likely to experience internalized stigma than those who had not experienced external bias. Respondents were asked to indicate how much they agreed with a series of statements about the impact of HS. These statements included whether they felt like they could be their “true self” with HS, whether they had anxiety about what people might think of them, and whether they felt shame or depression.

Dr. Roth has also found that those who experience external bias are more likely to have a negative sense of self-worth and struggle more with their mental health. She said, “It’s upsetting, but sadly, it is not surprising that people who are made to feel bad, inferior, or shameful by others are more likely to have bad feelings about themselves. No health condition should make someone feel like they can’t be their true self.”

She continued, “When people come to me feeling bad because of treatment by family, friends, or healthcare professionals because of their HS, I remind them that HS is common, not their fault, and that they are not alone. I remind patients that we have options to treat HS and that our self-worth isn’t dictated by our diagnoses.”

Talk With Others Who Understand

On myHSteam, the social network for people with HS and their loved ones, more than 46,000 members come together to ask questions, give advice, and share their stories with others who understand life with HS.

Have you experienced internal stigma or external bias? Do these survey results sound like your experiences? Share your experience in the comments below, or start a conversation by posting on your Activities page.