Okay, so you have a skin condition. Certainly, Hidradenitis Suppurativa is a lot of things— but it is not a death sentence. You can still live your life once you’re diagnosed with HS. You can enjoy food, dress to impress, have fun, and be comfortable in your own skin.
There are a lot of misconceptions about HS, but there’s no reason to let the many myths knock you down. Below are just a few of the most common misconceptions about this skin disease and the people who live with it.
Myth 1: You only have HS because you’re a dirty person.
Some people will assume you have HS because you’re unclean, which is just not true. Does cleanliness play a role in managing HS? Of course it does!
When you break out, it is in your best interest to stay as clean as possible because doing so accelerates the natural healing process. So shower frequently, use anti-bacterial soap, wear clean clothes, and if you take a dip in the community pool, always rinse off afterwards. But cleanliness or lack thereof isn’t the cause of HS.
Myth 2: You must have HS because you’re overweight.
Your weight has absolutely nothing to do with the fact that you are living with HS. Anyone who assumes that the number on the scale makes you more or less likely to develop HS is flat-out incorrect. People of all shapes and sizes have HS, just as people of all body types manage to avoid it altogether.
Myth 3: Your tight clothes are causing all your flare-ups.
My HS does not always take precedence over what I wear. I’m a girl who likes to look cute, and I sometimes wear tighter clothing. The thing is, while letting your skin breathe can certainly help, wearing things that are too “airy” can also lead to problems. Both clothing and the absence of clothing can cause bumps when you’re living with this condition.
Just as acne affects everyone differently, so does HS. There are people who avoid tight fitting clothes at all costs, but not everyone with HS faces the same issues with their outfit choices. There are some of us who can wear a snug top that’s clean and comfy without experiencing a flare-up.
Myth 4: You must have an STD.
Let’s make something crystal clear: HS is not an STD, and it is not contagious.
Sometimes, HS looks terrifying to those who are unfamiliar with the condition. And when certain people are confronted by something that makes them nervous, they immediately assume the worst. They might even recoil from your touch and try to avoid you.
Having HS can be extremely intimidating, especially when you’re trying to be intimate with another person. But the fact is that this condition is not something you can give someone else. And it’s definitely not something you can contract from sexual activity.
Myth 5: The greasy junk food you eat makes you flare up.
It’s important to be healthy when you have HS in terms of what you eat and the amount of exercise you get. That said, I could eat only salads every single day of my life and I would still experience outbreaks. On the other hand, I could eat only burritos for five straight days and experience no flare-ups whatsoever during that time period.
Your diet is important to your overall health whether or not you have HS. But don’t assume that any major dietary changes will significantly alter your condition for better or worse.
Myth 6: You flare up more often because you’re a smoker.
I am a former smoker. I started smoking at a young age, but I’ve been smoke-free for over a year now. I may be healthier today, but when it comes to my HS, nothing has changed since the day I quit cigarettes. The breakouts happen anyway, and I’ve learned to deal with that reality and the stress that accompanies it without lighting up every time I get upset.
Myth 7: What works for one person with HS works for everyone with HS.
As HS patients, we are all different. Sure, we all require the same basic things to survive, but as human beings living with a skin disease each of us functions slightly differently. Not every treatment works for everyone or is equally effective on everyone. Not every breakout or bump is caused by the same underlying triggers.
Those of us with HS have to listen to our bodies and develop our own approaches to managing the condition. As helpful as it is to consult others suffering from the same thing, you have to take everyone else’s advice for what it is (an outsider’s take) and pay close attention to your own body above all.