7 Misconceptions About Hidradenitis Suppurativa
A “gift” that seems to come along with having a chronic illness is other people’s judgments. Even if you have gotten used to your chronically ill life, hearing misconceptions about your condition from others who don’t get it can be painful.
If you live with hidradenitis suppurativa (HS) or another chronic skin condition, you may hear harmful comments such as making comments about your appearance, questioning your efforts in managing your condition, or not understanding that HS isn’t “just” a skin condition. HS is a chronic inflammatory skin condition that can cause people with HS to experience painful breakouts on their armpits, groin and other areas of the body.
We asked members of the HS community to share misconceptions that they hear about their condition. If you live with HS or are trying to understand it better, you may find these responses helpful.
1.
That it’s ‘just’ a skin disease. They don’t understand the immune-inflammatory side of it. The fatigue and risk of serious infections and complications. That it’s just acne or boils when it’s deep inflammatory abscesses. — Cat C.
HS is a systemic, inflammatory skin condition. According to the American Academy of Dermatology Association, “it is possible that HS develops in people who have an immune system that overreacts to the plugged hair follicle.”
2.
I feel like the biggest misconception is that HS has to do with our hygiene maintenance. Those who aren’t necessarily educated on hidradenitis suppurativa think we aren’t clean, when in fact, we have to keep ourselves clean to minimize flares and even infections. — Kashinda
Many people with HS find cleaning techniques that help them maintain good hygiene while not triggering flares or causing existing tunnels or abscesses to rupture. This includes using antibacterial soap for some and doing laser hair removal instead of shaving for others.
3.
That flares are due to personal hygiene and are no more painful than regular pimples or acne. I’ve met doctors who still believe this and have no idea about HS. — Cindi R.
People with chronic conditions may often deal with others, including doctors who don’t understand how painful their illness can be. HS warriors like Mighty contributor Allyson Byers describe flares of HS as causing “excruciating pain” and interrupting their lives.
4.
That it’s contagious. — Michelle A.
HS is not contagious, sexually transmitted or caused by poor hygiene, according to the Cleveland Clinic. One person who has HS cannot transmit it to another person.
5.
That it’s a ‘dirty’ disease. Truth is, we probably shower more than you do. Also that it is always visible, there is a presentation of it nicknamed ‘hide and go leak’ where the cysts are under the skin and not right on the surface. It doesn’t make them any less painful though. — Annastasia L.
Inflammation, even when it is not visible on a person’s skin, can cause people to live with HS to be in a lot of pain. HS is not caused by a person’s poor hygiene and criticisms about a person’s abscesses and other physical symptoms can lead to HS patients being unfairly judged.
6.
It’s ‘just’ acne. People say they have the same thing, and they don’t take medication. — Nichole P.
HS is a chronic skin condition, which acne is a common symptom of, but this condition is definitely more than ‘just acne.’ According to the Cleveland Clinic, people with HS are likely to also have acne, diabetes, heart disease, inflammatory bowel diseases and polycystic ovarian syndrome (PCOS).
7.
Living with HS doesn’t get any easier with time. As someone who’s been living with HS for seven years, I still have moments where it gets overwhelming for me, even outside the context of flares. — Madison L.
HS is a chronic condition that can cause people to have constant breakouts on their skin or have these breakouts reoccur in different places. Coping with the symptoms of HS can be difficult for many people.
Share any misconceptions that we might have missed about HS in the comments below.
Image via Getty Images/dragana991
Julia Métraux is a health and culture writer whose work has appeared in Narratively, The Tempest, BUST, and Briarpatch Magazine. Follow her on Twitter at @metraux_julia and on Instagram @julia.metraux
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