Most of us have heard these before; the HS misconceptions. It doesn’t matter how confident we are in our disease, our triggers or our bodies, these misconceptions still sting. These misconceptions or stigmas are the result of repeating old outdated information time and time again, which is what gets engrained in people's brains as truth. It takes a long time to undo the damage that these stigmas can and have done to the HS population and unfortunately they are to blame for the misdiagnosis and amount of time it can take to get a proper HS diagnosis. They may be just words, but they’re dangerous.
Most of us have heard at least one of these:
It must be something we’re doing or not doing
It must be because we’re not cleanly
It must 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
How did you end up with a rare condition?
You’re not contagious, right?
Are you sure that’s not an STD?
You have an autoimmune condition
It must not be HS because you can’t have HS on <enter body part here>
Nope, nope, nope. These bullet points carry the power to bring us to our knees, to make us feel bad about ourselves, to make us question ourselves. We can change that amongst the HS community and give those who follow in our footsteps a better chance than we’ve had.
Unfortunately the misconceptions run deep, including being ingrained in the opinions of some in the medical field as well. Seeking help from those who perpetuate the stigmas is counterproductive and we’re working diligently to change that.
Here’s the quick breakdown on HS before we get into the misconceptions:
WHAT IS HS?
Hidradenitis Suppurativa (HS) 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 CAN I DEVELOP HS ON MY BODY?
You can develop hidradenitis anywhere on the body where there are hair follicles; which mean anywhere on the body 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. There is not always hair or hair growth everywhere hair follicles are found in order to develop HS in that area.
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 breasts and groin areas. *Atypical hidradenitis at this time is grossly understudied. The statistics for this may change in the near future.
For men it is reported that the most commonly affected areas include the armpits, back of neck, face and groin. *Atypical hidradenitis at this time is grossly understudied. The statistics for this may change in the near future.
WHAT DO I CALL THESE...THINGS?
Abscesses or lesions; they should not be referred to as boils. Learn more about how to refer to HS here.
HOW DO YOU DETERMINE THE SEVERITY OF YOUR 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.
Read more about the Hurley stages here.
Now, on to the misconceptions and stigmas:
YOUR HS MUST BE BECAUSE OF 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 or are doing. 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.
THIS IS NOT YOUR FAULT.
THIS IS NOT YOUR FAULT.
IT MUST BE BECAUSE YOU’RE NOT CLEANLY
Nope. Quite the opposite actually. In most cases those with HS are more cleanly and shower or bathe more often than those without 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 <insert reason here>
Male
A child
Past puberty
Have hit or are beyond menopause
As noted above, HS does not discriminate against age. HS can affect children before puberty and also can even start or continue after menopause. While it is most common that HS symptoms begin during puberty, it can begin at any age and does not stop based on puberty or menopause. In fact, when it comes to men, in North America HS is reported to be more common among women, data from other countries shows a higher prevalence of HS in men. Read more about HS in the male population here.
YOU HAVE HS BECAUSE YOU’RE OVERWEIGHT
Nope. There are many people who have HS who have never been overweight; HS doesn’t discriminate against 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. Read more about HS and weight here.
ONLY YOU WOULD END UP WITH A ‘RARE CONDITION’
HS is not rare. HS is believed to affect 1 to 4% of the global population and that represents just the reported cases (this does not include capture the misdiagnosis and those who do not seek medical care). We believe the 5-10 year average time for a diagnosis plays a large role in the number of reported cases.
In the US, based on the research to date, women are 3 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. Read the Statistics for HS article here and the We are NOT a Rare Breed article here.
HS ISN’T CONTAGIOUS, RIGHT?
No. The very definition of contagious is spread from one person or organism to another by direct or indirect contact. If HS was an infectious disease or contagious it would be an epidemic. HS has never been an epidemic or an infectious disease. if one of your abscesses has staph and/or MRSA ,that can be highly contagious if precautions are not taken, however, that is a secondary factor and does not mean HS is contagious.
ARE YOU SURE THAT’S NOT AN STD?
No, HS is not an STD. 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 can be difficult to navigate when entering a new intimate relationship.
Read more about how to tell people about your HS here. Watch an interview with Erin Martinez, sex therapist, here on how to navigate relationships with HS.
HS IS AN AUTOIMMUNE CONDITION
There is no evidence or research classifying HS as an autoimmune illness. The past several years of research suggest HS is auto inflammatory affecting our 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 is and autoinflammatory is that autoimmune attacks and auto inflammatory reacts.
Read this article to learn more here. Additional research on this topic can be found here.
IT CAN’T BE HS BECAUSE HS DOESN’T DEVELOP ON <insert body part here>
Back
Neck
Arm
Leg
Elbow
Shoulder
Face
Ear
...anywhere hair follicles are found
While there are “typical locations” for HS as shown on the chart above, HS can impact anywhere there are hair follicles on the body. Again, this does not mean that there must be hair there 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 lips. Just because the other areas are not as common, doesn’t mean it can’t happen there.
For any of you who read this and felt vulnerable, uncomfortable, taken back to a place you once were, or a feeling you once had, for those memories it may have brought up, please use that as courage to help break down these stigmas for others with HS to make those feelings a little less, their fight a little less difficult, their road a little less bumpy.
The only ones who have control of changing these stigmas and setting the record straight on HS are us, the warriors, the fighters, the sufferers, the strong, the tired, the resilient. It doesn’t take much to start a chain reaction, a change, it starts with spreading truth and science backed information; it starts with conversations, with open minds. Next time you hear one of these stigmas, please take a moment to correct, not from a place of anger, but a place of information, power, and knowledge and that is what will eradicate the HS stigmas one at a time.
Written by Denise Panter-Fixsen and Brindley Kons Brooks
Edited by Brindley Brooks