I was 19 years old and working at a summer camp when I first noticed painful lumps on my thighs. I assumed it was from chaffing and stopped wearing short shorts for the rest of the summer.
But the lumps didn’t go away. They got bigger and more painful as the seasons changed. After hours of searching online for an answer, I finally read about hidradenitis suppurativa (HS).
HS is a chronic skin condition that takes many forms, including small, pimple-like bumps, deeper acne-like nodules, or even boils. The lesions are usually painful and appear in areas where skin rubs together, such as your armpits or groin. The areas it can affect vary from person to person.
I’ve been living with HS for five years. A lot of people are unaware of what HS is, or that it is a serious condition. So I’ve continued to educate my friends, family, and followers about the condition in hopes of getting rid of the stigma surrounding it.
Here are nine things I want you to know about HS.
1. It’s not an STD
HS breakouts can occur on your inner thighs near your genitals. This may cause some people to think HS is an STD or another contagious disease, but that’s not the case.
2. It’s often misdiagnosed
Since research about HS is fairly new, the condition is often misdiagnosed. It’s important to find a dermatologist or rheumatologist who is familiar with HS. I’ve heard that HS has been misdiagnosed as acne, ingrown hairs, recurrent boils, or just bad hygiene.
For many people, myself included, an early sign of HS is blackheads that turn to painful nodules. I had no idea it wasn’t normal to have blackheads between my thighs.
3. It’s not your fault
Your HS isn’t a result of poor hygiene or your weight. You can practice perfect hygiene and still develop HS, and some researchers believe there's even a genetic component. People at any weight can get HS. However, if you’re heavier, HS may be more painful since many parts of our bodies (underarms, buttocks, thighs) touch all the time.
4. The pain is unbearable
HS pain is sharp and searing, like being stuck with a fireplace hot poker from the inside. It’s the type of pain that makes you yelp with surprise. It can make walking, reaching, or even sitting impossible. Of course, this makes it challenging to complete everyday tasks, or even leave the house.
5. There’s no cure
One of the hardest things to accept when you have HS is that it can be a lifelong disease. However, HS treatment is continuing to evolve to meet our needs and help us manage the painful symptoms of the condition. If you’re diagnosed early on and start treatment, you’ll be able to enjoy a very good quality of life.
6. Its mental effects are just as harmful
HS affects more than just your body. Many people with HS face mental health issues like depression, anxiety, and low self-esteem. The stigma associated with HS can make people feel ashamed of their bodies. They may find it easier to isolate themselves than face the scrutiny of strangers.
7. People with HS can have a loving, supportive partner
You can have HS and still find love. The question I’m asked the most regarding HS is how to tell a potential partner about it. Addressing HS with your partner can be scary because you don’t know how they’ll react. But most people are willing to listen and learn. If your partner responds negatively, maybe they aren’t the person for you! You could also share this article with them during your conversation.
8. It’s not as rare as you think
When I started being vocal about my HS, two people from my small college messaged me to say they had it too. I thought I was alone in my HS, but I saw these people every single day! HS may affect up to 2 percent of the global population. For context, that’s about the same percentage of people who have naturally red hair!
9. The HS community is large and welcoming
The first HS community I found was on Tumblr, but Facebook is bursting with HS groups too! These online communities are so comforting when you’re going through a rough time. You can choose to post about yourself or scroll through and read posts from other members. Sometimes, just knowing you’re not alone is enough.
You can learn more about finding support by visiting the Hidradenitis Suppurativa Foundation and the International Association of Hidradenitis Suppurativa Network.
Living with HS can be scary at first. But with proper treatment and a strong support system, you can live a full and happy life. You’re not alone. And the stigma surrounding HS will become less prominent if we continue to educate others and raise awareness about the condition. Hopefully, one day it will be as understood as acne and eczema.
Maggie McGill is a creative introvert who produces fat and queer fashion and lifestyle content for their YouTube channel and blog. Maggie lives just outside of Washington, D.C. Maggie’s goal is to use their skills in video and storytelling to inspire, create change, and connect with their community. You can find Maggie on Twitter, Instagram, and Facebook.