The Top 5 Reasons (That Don’t Explain) Why You Have Hidradenitis Suppurativa

You’ve heard the noise—the non-stop suggestions from well-meaning friends and relatives trying to help by telling you all the things they’ve recently read or researched. Sometimes even your doctor or dermatologist will make a few surprising, unsolicited comments. But they’re not the ones living with Hidradenitis Suppurativa (HS)—you are. Below are the top five misconceptions you’re bound to face if you suffer from this chronic skin condition.

1. You don’t have good hygiene.

I have suffered from HS throughout adulthood—from my early 20s as the member of a rock band to present day, when I lead a calmer, healthier, more mature existence. HS has remained a constant. One of the most common myths, even amongst doctors, is that you must not be very mindful of your personal hygiene if you suffer from HS. But while maintaining hygienic habits can certainly play a role in reducing the frequency and/or severity of outbreaks, cleanliness (or lack thereof) is not the root cause of this chronic condition. You didn’t get HS because you’re any less sanitary than the next person, and you can’t magically make it go away by washing more often.

2. You must be overweight.

Excuse the pun, but this is a big one. I have struggled with weight issues my entire life, so my weight has fluctuated quite a bit over the years. In my case, being slim has not helped keep HS at bay. At my absolute slimmest (180lbs), in fact, I had the worst outbreak of my life, which led to a blood infection for which I was hospitalized for two straight weeks. It’s true that the less excess fat and skin you carry, the less prone you are to skin-on-skin friction, which can cause outbreaks. But from my experience, weight fluctuations haven’t had a noticeable impact on HS. As with any healthy human, of course, a proper diet and regular exercise are essential to living a long and happy life. But you don’t have HS just because you’re heavy—promise.

3. You got HS from smoking.

I don’t smoke. And I have HS. It’s a popular misconception that people with Hidradenitis Suppurativa who smoke are responsible for their skin condition because outsiders want to assume that if you have HS you must deserve it for trashing your body or something. Smoking might be terrible for your health and make you smell totally foul, but it’s not the cause of your HS.

4. You must have a horrible diet.

As someone who’s been living with HS for two decades, I’ve gone from coping with this condition as a 20-something with the food habits to match their on-the-road, rock band lifestyle to a certified grownup who eats fresh, simple ingredients. I have endured outbreaks all along the way. In fact, I went totally gluten free for four months. The result? A massive increase in both the frequency and severity of my outbreaks. There are many online testimonies from people claiming to have sent HS into remission by removing a certain food, or group of foods, from their diet. But from my experience, good or bad nutrition isn’t a major component in the HS equation.

5. You must wear clothing that’s too tight.

I’ve read countless articles urging people with HS to wear loose fitting clothing. The underlying belief is that tight clothes can irritate your flesh and lead to outbreaks. But I’ve found that loose clothes can actually cause more problems because the extra material bunches up and rubs against my skin as I walk or run. Softer fabrics like spandex and stretch denim seem to work best for me. Just remember, the less friction the better.TC mark

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