Hidradenitis suppurativa (HS) is an inflammatory skin condition known for deep abscesses or scar tissue in the armpits and groin that can cause severe pain and impact a person’s quality of life. Misconceptions and stigma about the condition abound, including the common myth that HS is contagious.
“It’s not easy explaining HS to people without sounding like you have an STD [sexually transmitted disease] or some form of contagious disease,” a member of myHSteam said. Another member shared their struggles: “No one understands what you go through, and when you try to explain it to people, they look at you like you’re contagious or something.”
Despite misconceptions, hidradenitis suppurativa, sometimes called acne inversa, is not contagious. HS is not an infectious disease, and a person cannot catch or spread HS by being in close contact with a person who has it. Likewise, HS is not a sexually transmitted disease, nor is it caused by poor hygiene.
Because HS leads to acne-like wounds, some secondary bacterial infections of the skin (such as staph or strep) can develop. These infections can sometimes be contagious. If you have HS and an HS-related infection occurs, keep the area clean, dry, and dressed and see a health care provider.
Scientists are not entirely certain what causes HS. The current consensus is that HS is caused by a combination of genetic and environmental risk factors.
HS was previously considered a rare disease. However, an estimated 1 percent to 2 percent of people in the United States — as many as 13 million people — may be living with HS. HS tends to affect people between puberty and 40 years of age. HS impacts women three times more than it does men, according to Hope for HS. In the United States, the condition is most common among African American women, according to the American Academy of Dermatology Association.
Certain risk factors may increase the risk of developing HS, including:
Stigmatization — social disapproval based on a particular attribute — is a common experience among people with HS, even more so than for people with other skin conditions. People with HS report higher stigmatization when their affected areas are more severe and visible, as well.
Those with HS report experiencing stigma in varying forms, such as people avoiding physical contact. These experiences can lead to several issues.
Feelings of shame and embarrassment can lead to social withdrawal or social isolation. One myHSteam member shared, “I don’t date anymore because they all think my HS is gross and contagious or an STD.” Another said, “I become very reclusive when I have bad flare-ups.”
Stigma can have a massive impact on a person’s psychological health and social functioning, which can affect self-esteem. One member said, “I still haven’t told my boyfriend about my diagnosis, and I’m really anxious and scared.”
“I find it really difficult to be intimate,” another member said. “I’m so embarrassed about all of my scars.” Another member agreed: “My flares are in my groin, inner thigh, and buttocks area, so it was really hard and embarrassing to be intimate with the pain, odor, and leakage.”
Stigma is a big contributor to psychiatric issues such as depression and anxiety, which are commonly seen in people with HS. “I have low-level depression and anger. This is largely due to hidradenitis,” said one member. Another member said, “I never had depression until I got this disease! It is very mentally difficult.”
HS is frequently underdiagnosed. On average, people see 15 doctors over seven years before having their HS accurately diagnosed. “I’ve had medical professionals who didn’t have a clue about HS,” said one member.
Not having answers can lead to further feelings of shame, embarrassment, and confusion around contagion. Delays in diagnosis also mean that a person’s condition may progress from mild to more severe stages. In a vicious cycle, severe symptoms may contribute to stress, which contributes to worsened mental and physical health.
Learn more about how HS can affect your mental health.
You don’t have to feel isolated or alone. On myHSteam, the social network for people with hidradenitis suppurativa and their loved ones, more than 22,500 members come together to ask questions, give advice, and share their experiences with others who understand life with hidradenitis suppurativa.
Have you had to explain that your condition isn’t contagious? What advice do you have for others? Share your thoughts in the comments below or by posting on myHSteam.