Most of us in the hidradenitis suppurativa (HS) community are aware that myriad stigmas surround the condition. After all, we’ve been in many situations where other people have opinions about the condition that simply aren’t true, and it’s time to set the record straight. With HS, we face enough obstacles daily that we don’t need the additional weight that these stigmas feed.

Most of us have heard at least one of these regarding HS:

• It must be something you’re doing (or not doing), or you're not trying hard enough
• It must be because you're not clean enough
• It cannot not be HS, because you’re a male, you’re a child, you’re past puberty, or you’ve hit menopause
• It must be because you are overweight
• HS is a rare condition
• You’re not contagious, right?
• Are you sure that’s not a sexually transmitted disease (STD)?
• You have an autoimmune condition
• It must not be HS, because you can’t have HS on [enter various body parts here]

None of the above statements are true. It’s time to help break the HS stigmas by advocating and informing others. It’s only a secret as long as we keep it that way. We’re busy fighting our own bodies — the last thing we need is to fight others and their opinions of our illness as well. That change starts with information and knowledge.

Here’s the quick breakdown on HS before we get into the stigmas.

What Is HS?

Hidradenitis suppurativa is a complex, chronic, and debilitating inflammatory illness, also referred to as an immune-mediated inflammatory illness and follicular occlusion. HS consists of extremely painful recurring abscesses that can develop anywhere hair follicles are found. HS is primarily a follicular occlusion, as opposed to a sweat gland disease. However, glands may be involved, depending on the situation and severity. HS has a huge impact on our quality of life physically, mentally, emotionally, and financially.

Where on the Body Can You Develop HS?

You can develop HS anywhere on the body where there are hair follicles, which means anywhere except the palms of your hands, soles of your feet, and on your lips.

A common misconception is that HS can only develop where hair grows. However, you can develop HS in hairless areas of your body because hair follicles are still present.

Another common misconception is that HS is a gland (or sweat gland) illness and only affects gland-bearing areas where there are sweat glands, which is also not accurate.

For women, it is reported that the most commonly affected areas include the armpits, under the breasts, and the groin areas. For men, it is reported that the most commonly affected areas include the armpits, back of the neck, the face, and the groin. Keep in mind, however, that atypical hidradenitis is grossly understudied at this point in time, and as a result, the statistics for this may change in the near future.

For more about anatomic locations that can be affected by HS, review the chart that indicates where HS can affect the body.

What Should I Call These … Things?

It’s recommended that you refer to the manifestations as abscesses or lesions; they should not be referred to as boils. Boils are more superficial than abscesses, and are typically smaller in comparison. A lot of misunderstandings are involved in the verbiage around HS, and it’s important to use the terminology that best serves the community.

How Do You Determine the Severity of HS?

There are three Hurley stages used to determine the severity of HS. The Hurley stages can vary per body part. You could be stage 1 in your armpits and stage 3 in your groin. While there are other scoring/rating/points systems around the world, they are rarely used in a physician office setting.

Now, Onto the Stigmas

Most of us living with HS have heard at least one of the following during the course of the condition.

Your HS Must Be Due To Something You’re Doing or Not Doing

Nope. This has nothing to do with you, something you’re doing, or not doing. There may be things that trigger your HS, but it has nothing to do with anything you’ve done. You did not create this issue with your body. HS does not discriminate based on age, race, sex, religion, sexuality, blood type, or anything else.

This is not your fault.

It Must Be Because You’re Not Clean Enough

Quite the opposite, actually. In most cases, those with HS shower or bathe more often than those without the condition, due to the odor that can come with our abscesses.

Our abscesses smell as a result of pus, which is a combination of dead white blood cells, bacteria (good/bad), tissue debris, serum, and living or dead microorganisms. Many of us can have a smell that seeps from our HS abscesses with no sign of infection when cultured. There are other HS sufferers who have no smell with their abscesses whatsoever. Depending on which stage you are in, you may also have scar tissue and tunneling, which can collect pus, sometimes for years, which can also contribute to the smell of an abscess.

It Can’t Be HS Because You’re...

• Male
• A child
• In menopause or beyond it

As noted above, HS does not discriminate based on your age. HS can affect children before puberty, and can even start or continue after menopause. While it is most common that HS symptoms begin during puberty, the symptoms can begin at any age and do not stop based on puberty or menopause. In fact, when it comes to gender, HS is reported to be more common among women in North America, but data from other regions shows a higher prevalence of HS in men.

You Have HS Because You’re Overweight

Nope. There are many people who have HS who have never been overweight — HS doesn’t discriminate based on body type. Many who are diagnosed with HS find it difficult to exercise due to pain from flares, or flares that come from the friction and/or sweat from exercising. HS may be more common where skin touches other skin, which may be more common when overweight.

HS Is Rare

HS is not rare. HS is believed to affect 1 percent to 4 percent of the global population, and that represents just the reported cases (this does not include the misdiagnoses and those who do not seek medical care). We believe the five- to ten-year average time for a diagnosis plays a large role in the number of reported cases.

In the U.S., based on the research to date, women are three times more likely to be affected by HS. However, in other countries around the world, men are more commonly afflicted at a much higher percentage than women.

Is HS Contagious?

HS is not contagious. The very definition of "contagious" describes a spread from one person or organism to another by direct or indirect contact. If HS were an infectious disease or contagious, it would be an epidemic. HS has never caused an epidemic or an infectious disease.

Are You Sure That’s Not an STD?

HS is not a sexually transmitted disease. Unfortunately, some of us have been accused of this one too many times when visiting a doctor who doesn’t know anything about HS. This topic can be difficult to navigate when entering a new intimate relationship.

Read more about how to tell people about your HS, or watch an interview with sex therapist Erin Martinez on how to navigate relationships with HS.

HS Is an Autoimmune Condition

There is no evidence or long-standing robust research classifying HS as an autoimmune illness. The past several years of research suggest that HS is a possible autoinflammatory condition affecting the innate immune system (innate immune refers to nonspecific defense mechanisms that come into play immediately or within hours of an antigen's appearance in the body). HS has been identified as a complex inflammatory follicular occlusion illness, also referred to as an immune-mediated inflammatory illness.

The best way to explain the difference between autoimmune and autoinflammatory is that autoimmune attacks and auto inflammatory reacts.

HS Doesn’t Develop on the ...

• Back
• Neck
• Arm
• Leg
• Elbow
• Shoulder
• Face
• Ear

While there are favorite locations for HS, the condition can impact people anywhere there are hair follicles on the body. Again, this does not mean there must be hair growth in order for there to be a hair follicle. HS can develop anywhere on the body other than soles of the feet, palms of your hands, and on your lips. Although the other areas are not as common, HS can still present there.

Contribute to Awareness

While these stigmas can be painful personally for each of us with HS, they represent a larger issue with a lack of education, misdiagnosis, treatment options, and the fact that people who suffer from HS don’t always get the best care. There are people who see doctors daily, and are being told they don’t or can’t have HS for some of the reasons above. In order to ensure this stops happening, we need to eradicate the stigmas that come with HS, and this is done by those of us who have faced too many of these stigmas to date.

Eradicating the stigmas simply starts with talking about HS, educating yourself, and sharing that factual knowledge with the community around you. In the process of doing this, you’re naturally creating awareness about HS and breaking those stigmas for those who follow.

You Are Not Alone With Hidradenitis Suppurativa

By joining myHSteam, the social network and online community for those living with hidradenitis suppurativa, you gain a support group of more than 20,000 people who understand what it's like to have HS.

Which stigmas and myths have you heard about hidradenitis suppurativa? Share your experiences in a comment below, or start a conversation by posting on your myHSteam Activities page.

This article was written by HS Connect co-founders Denise Panter-Fixsen and Brindley Kons Brooks as part of the My Perspective Series.