It’s a story people with hidradenitis suppurativa (HS) know well: you visit a new doctor hoping for answers, support and a treatment plan, and instead are faced with confusion surrounding what HS even is. Often misdiagnosed as ingrown hair, acne or poor hygiene, HS can take years to diagnose simply because many healthcare professionals are not familiar with the symptoms.
HS is a chronic inflammatory skin condition that may be caused by malfunctions in the body’s immune system. It can start with small, pimple-like bumps or boils that show up on or under your skin and can progress to painful abscesses that may eventually burst or rupture and cause scarring. Though there is no cure, there are a few treatments that can help you manage your symptoms. The key is to find a doctor (typically a dermatologist) who can walk you through the treatment process. Unfortunately, many people with HS find that it takes two, three, or more doctors to find one who truly “gets it.”
It would take far less time to get a diagnosis if more physicians knew the basic symptoms and cause of HS. The diagnostic process would also be far less stressful if some of the most common misconceptions about HS (which many doctors still believe) were corrected. With the help of our Mighty community, we created a list of 10 things medical professionals often get wrong about HS — and the truth.
1. Your weight doesn’t cause HS.
The exact cause of HS is still unknown, but it is believed to be the result of a faulty immune response. An imbalance in the immune system causes the body to produce too many inflammatory proteins, which leads to increased inflammation throughout the body. This inflammation can create pressure in the layers of the skin, specifically the hair follicle gland. This pressure beneath the skin can build, causing painful abscesses that appear on or under the skin, and may eventually leak or rupture. Being overweight doesn’t cause HS, though in some cases it can increase the severity. Still, losing weight won’t “cure” anything.
It still gets bad even at a ‘normal’ weight. Every solution shouldn’t be to lose weight. — Isabel H.
I was at a healthy weight when I had my first flare. It happened during a time of immense stress, which I now know is a trigger for me. — Shaye H.
2. Lesions can start out under the skin.
Some doctors may expect that HS only presents as large abscesses on the surface of your skin. However, nodules can form under the skin and grow bigger and more inflamed over time. Your symptoms shouldn’t be dismissed just because it doesn’t look like a stereotypical boil.
It’s a debilitating disease that doesn’t always present as large boils [in the groin], it can present as a commonly nicknamed ‘hide and go leak’ where the cysts are sub-dermal and only gone to the surface when they are ready to explode (sometimes literally) and drain. — Annastasia L.
3. Patients need individualized treatment plans.
There’s no “magic treatment” that works for every person with HS. Options include corticosteroids, biologics and surgery. Doctors should work with their patients to find the right combination of treatments. If they are unsure how to treat you, they should refer you to a knowledgable dermatologist.
Not all treatments will respond the same with everyone. Every person with HS is different and responds different to every form of treatment. We are an enigma and need patience and understanding. — Sarah M.
4. HS is not rare, but is so often misdiagnosed that it can take a long time for patients to get a diagnosis and treatment.
Because many physicians are not familiar with the signs of HS, they often don’t realize just how common it is. The condition is believed to affect one in 100 people, though people often go years without the correct diagnosis due to a lack of awareness.
I have actually heard out of some MDs’ mouths that this is a ‘rare’ condition. I can guarantee you that rare is something HS is not… It’s disappointing, experiencing the lack of knowledge that the medical field has regarding HS. Hoping that in 2020 we can get some better answers and relief so we’re better able to live our lives in peace. Hang in there, warriors! — Hadiyah T.
5. Flare-ups can cause debilitating fatigue.
With hallmark HS symptoms affecting the skin, people without HS may assume that’s where the discomfort ends. But those living with the condition can attest that fatigue may hit before or during flare-ups. One 2017 study found that 32% of people with HS surveyed said they experienced fatigue prior to the development of inflamed nodules or abscesses.
It drains you of all energy. Even the smallest flares can knock you out for days. — Lauren T.
6. HS can be extremely painful.
The lumps and bumps caused by HS are painful in and of themselves — and their tendency to form on sensitive areas of the body where skin meets skin like the armpit, groin and buttocks, makes them especially uncomfortable. These abscesses break open, drain pus and form scars, which is as painful as it sounds. Everyday activities like dressing, walking and sitting can also become uncomfortable. It’s important for medical professionals to be sensitive to how much pain their patients are in.
I don’t think anybody, other than someone with HS, understands the pain. — Jenny O.
The level of chronic and acute pain skin inflammation and lesions can cause. Your skin is your most sensitive organ and HS affects the most sensitive places. The need for proper pain management and how that affects a person’s quality of life. — Christopher W.
7. HS can make maintaining a social life difficult.
HS isn’t your fault — but that doesn’t necessarily make it easier to live with the symptoms. You may feel like you have to cover up your abscesses or you may struggle with intimacy. You may worry about an abscess opening and draining while you’re out with friends and how your friends will react, and find yourself avoiding situations where people might notice your HS. Living with a chronic health condition is tough enough; when the condition then causes you to avoid others or causes them to avoid you, you may feel an added loneliness on top of the already-painful symptoms.
I happen to have a wonderful partner who thinks I’m beautiful and doesn’t care. But dating can be horrific. I’ve seen people in HS groups say that their partners, even ones they’ve had for years, will sometimes abuse them physically or verbally because of HS. Telling them they are sure it’s some sort of contagious disease or STI and that it’s their fault. Or use it as a bargaining chip like ‘who is going to love you with your HS.’ It’s awful to see. — Mackenzie G.
8. HS is not caused by poor hygiene.
Say it again for the people in the back: HS is a disorder of the immune system, not a symptom of poor hygiene. Inflammation caused by a malfunctioning immune system isn’t triggered by how frequently you bathe. This misconception only stigmatizes people with HS and encourages doctors to recommend “more thorough washing” as a treatment option, which won’t do anything to treat or prevent HS flares.
The first doctor I saw told me it was caused by poor hygiene which is incredibly false, but I didn’t know it at the time. I felt like he was insinuating that I don’t bathe or something. I left feeling dirty and ashamed like what was happening was my fault. I think the majority with HS would agree that we are some of the MOST HYGIENIC because we have to be constantly. — Brittanni J.
9. HS can affect your mental health, too.
The stress of being misdiagnosed over and over again, the shame that often accompanies the symptoms, and having to go through everyday life in pain can all take a toll on your mental health. If you’re struggling, there’s nothing wrong with reaching out for help. Support groups and mental health professionals can help you feel less alone.
The effects on our mental health are particularly devastating. Aside from the chronic pain, it’s just so difficult to talk about, with even my closest friends. — Jodi S.
10. People with HS already deal with a tremendous amount of shame and stigma, so it’s important that doctors educate themselves and don’t give up on their patients.
People with HS go to their doctors already frustrated, in pain, with memories of times they have felt ashamed of their condition. So if a doctor is dismissive, makes comments implying the symptoms are the patient’s fault or reveals their own “disgust” and lack of understanding of HS, it can be crushing. The best thing any doctor can do is take your concerns seriously, be open to researching and trying different treatment options, and be honest if they aren’t knowledgable about HS and refer you to a qualified dermatologist. People with HS deserve to have a physician in their corner who won’t give up on them.
A lot of us have had to suffer with this in silence in very formative years of our lives. Puberty on top of the embarrassment and shame felt. — Anthony F.
It’s a dehumanizing disease and both normal people and medical professionals alike recoil instead of helping. — Cassidy D.
For more insight on HS, check out these stories from our Mighty community:
- A Letter to the Person Diagnosed With Hidradenitis Suppurativa
- A Day in My Life During a Hidradenitis Suppurativa Flare-Up
- 5 Questions I Wish I Had Asked When I Was Diagnosed With Hidradenitis Suppurativa