Important Hidradenitis Suppurativa Myths

Hidradenitis suppurativa (HS) is unknown to most people, even many medical professionals. This ignorance leads to many myths and misconceptions about HS.

Common HS myths

There are the more common myths that most sources will clarify, like:

MYTH: HS is caused by poor hygiene

HS is not caused by being dirty, poor hygiene, or not cleaning enough.

MYTH: HS is contagious

HS is not contagious through person-to-person contact, on surfaces, the air, food or drink, or bodily fluids. It is a genetic disease connected to our immune systems.

MYTH: HS is acne

HS is not acne! It is commonly misdiagnosed as acne but is not acne vulgaris or cystic acne

MYTH: HS is a sexually transmitted infection/disease

HS is not an STI/STD. HS is not contagious and can not be transmitted through bodily contact or fluid.

MYTH: HS is caused by shaving

HS is not caused by shaving. HS is often in the armpits and/or groin, where people shave and it is misdiagnosed as folliculitis or razor burn. But this is a different condition than HS and does not cause HS.

MYTH: HS is your fault

This one is SO important because HS is not our fault. We did not cause HS. It cannot be caused through our actions - whether that is our diet, our weight, our clothes, shaving, or what we wash with. HS is a condition caused by our internal immune and inflammatory systems.

Myths about hidradenitis suppurativa contributes to the stigma

There are several other myths about HS that even large medical organizations get wrong. The damage of these myths perpetuates the shame and stigma around HS. They feed into the misconception that we did something to cause HS. Debunking these myths is an important step to understanding our bodies and the disease, as well as advocating for ourselves and others. Some of these myths are:

MYTH: HS is caused by weight

HS is not caused by being overweight. Some may find that being overweight worsens their HS symptoms and some may find relief in weight loss or diet change. Others may lose weight or change their diet to find no relief in their HS symptoms.

MYTH: HS is only found in the armpits, breast area, thighs, groin, or buttocks

It is true that these are the most common areas for HS to flare. However, HS can occur anywhere on the body, including the neck, back, and abdomen.

MYTH: HS is not painful

HS is one of the most painful dermatological diseases and should be treated as such. Pain management needs to be incorporated as an essential part of HS treatment. Some may view HS pain as acute and mild, but the pain from HS can be chronic and persistent.

MYTH: Wearing loose clothes will cure HS

Clothing does not cause HS, but can be a trigger. HS triggers are individual to the person and many of us have had to figure these out through trial and error. A trigger for some people may be loose clothes, while for others may be tight clothes! Some people may find relief in different types of fabric, such as cotton or linen.

MYTH: HS is caused by a bacterial infection

Bacterial infection is not believed to be the cause of HS. Some definitions of HS state that HS boils are caused by bacteria and are infected, but this is not always true. It does, however, make one more susceptible to bacterial infection in these abscesses and wounds because of the nature of the disease. So it is important to pay attention to flares and abscesses for signs of infection.

These are the myths that I have found to be hurtful to me as a woman with hidradenitis suppurativa and are important for me to clarify to others. By debunking these myths, I hope to educate others on accurate HS information.