I have had an autoimmune disease called Hidradenitis suppurativa since I was twelve. That’s thirteen years of chronic pain. Thirteen years of being uncomfortable in my skin. Thirteen years of doctors appointments and various medications, hoping one of them would be the secret cure, while knowing it’s incurable.

HS causes cysts in areas of the body that naturally chafe together- groin, buttocks, under arms, in between legs, under breasts. I believe some people get it on their face or their neck. Some get it on their lower leg.

There’s not a lot of research on HS and awareness is just now spreading. Shout out to @Mottsworld and @Socialcydd on Tik Tok as well as sites like the HS Foundation for spreading the word.

From my experience, HS can be uncomfortable to extremely painful when flaring and flaring can be all the time. For me it is all the time. I can count on my fingers the number of days in my life that I haven’t had at least one active HS wound that needed to be treated, even if it didn’t hurt.

Sometimes this disease prevents me from sitting or putting my arm down or doing either of those things comfortably. Sometimes it hurts to walk. It means my routine for getting dressed is different because I have to put bandages on my wounds so they don’t stick to or drain onto my clothing. It means parts of my body looks different from the scarring left behind. It means I’m hyper aware of how my body feels and moves, because I don’t always have full range of motion.

Though I’ve had it for so long, I haven’t spoken a lot about my HS, past telling people I was close to. I’ve met people who have it, but never as severe as mine. (And if it was they never spoke on it). It can be a little embarrassing to talk about HS because the flare ups lead to drainage. It can be tiring bringing it because I don’t want to have to explain it all the time, especially when google exists. And honestly, though it doesn’t define me, it is a big part of my life and has shaped my mindset in ways I’m just now discovering. It’s not just a physical disease and it’s caused other wounds I am now working on healing.

It wasn’t until the last couple years that I started being open about the fact that I have an autoimmune disease and experience chronic pain. This is the first post where I’ve specified what it is. In parts, that is thanks to the influencers previously mentioned who go out of their way to educate and provide advice on their experiences even among backlash. It’s made me feel less alone in my experience.

My biggest triggers for flares are stress and anxiety and changes in my hormones. I can usually tell when my period is coming by how bad and where I’m flaring. The main cause in my eyes for HS is inflammation which is why steroids have worked so well for me in taming the disease. There was once so much inflammation in my body, that I broke my heel, according to one of my past doctors. This actually happened about six years or so ago and that period of time made it possible for me to start this blog.

So fast forward, 11 years. I stopped taking Humira when I found out I was pregnant, unsure if it was safe for the baby. I experienced stress, anxiety, weight gain, and changes in hormones. The HS got pretty bad during my pregnancy, the worst it’s been in years. It hasn’t recovered from that now in 2023.

At this point, I’ve exhausted all of my options with my dermatologist in treatments. I was on birth control to help balance my hormones in middle school and was told that doesn’t really work now. I’ve been on different antibiotics. I went back on Humira. I’ve taken steroids, which is the option that works the best for me, but isn’t a long term solution. I’ve started taking tumeric gummies. I’ve tried bath soaks with healing salts, cbd oil, and tea tree oil. Nothing helps the way I need it to. The only option I hadn’t exhausted was surgery. So I did it. And now I’m recovering. I’ll tell you how that went soon.