Living Life Fully with HS

Have you ever said, I can’t do that, I can’t go there, I can’t wear that, I can’t [insert task here] because, I have hidradenitis suppurative? If so, I challenge you to eliminate “I can’t … because I have HS” from your vocabulary.

I have been on a mission to show we can live a full and normal life with HS.

Defying HS stigmas

Here are some of the ways I try to fight the limitations we impose on ourselves or allow society to impose on us:

• I previously wrote about someone who asked why I would have a child, knowing my child might develop HS, almost as if we don’t deserve children or shouldn’t be alive because of this condition. I wholeheartedly believe the world is better with all of us in it and that we should not limit ourselves because of our disease.
• I once received a message from a woman with HS who was preparing for college. She wanted to know if she should get roommates or go it alone, or if she should go to college closer to home. My advice was that her disease shouldn’t factor into her decision. I went to college and had roommates, and none of them even knew I had HS. (At that time I was still hiding my condition.)
• My best friend asked if I would consider applying for disability due to my disease or request to work permanently from home. I laughed and said that, even if I could, I wouldn’t want to. I don’t want to be treated differently because of my condition. Some days are hard, but they are not hard enough to keep me from showing up. Sometimes I’m in pain, but life goes on.
• I recently started creating videos showing me on vacation in Mexico, Georgia, Colombia, and the Bahamas. In these videos I wear sleeveless shirts, short shorts, and gauze with bandages. I joke about how what I am eating will probably trigger me, but add that I’m on vacation, so I’m going to eat well. I go swimming and hike, and I dance a lot. It pains me when I get messages from people who say they don’t go to the beach, or won’t wear certain clothing because others will see their scars. It’s sad to see the limitations people impose on themselves. I say grab a donut and get your flared-up, riddled butt on the plane. Some days it’s too hard to maintain a sunny disposition, but, each day, we can choose to be happy. In almost all my videos I scream, “Go where you want. Wear what you want. Do every activity.”

Ignore those who try to bring you down

Sometimes, I get comments from people who say HS disease is my fault, that I must have done something wrong to bring it on. One person messaged, asking how I handle all the trolls and why I continue to share my experiences. My answer? I try to create a safe space for people with HS disease and to educate people, but I’m too busy living to engage with the trolls. So, they don’t bother me 😊.

You can thrive with hidradenitis suppurative

An HS diagnosis cannot not stop the sun from shining. Someone not understanding your HS isn’t the end of the world. You can thrive in this world with HS.

I’m living proof.