My Life with Hidradenitis Supportiva

I used to love fashion and clothes, now I can’t wear half of them. I used to love going to the gym, now I can barely get out of bed. I’m trying to be ambitious and work hard for interviews and classes, but HS flares always come at the worst times (like the day of my interview/midterm), don’t they? 

I watched all my friends date and grow intimate with others and it’s not even a self esteem issue for me anymore. I physically can’t do anything with anyone because it will hurt like hell everywhere. It’s like my lady bits went through a shredder.

What’s the point of trying anymore? I feel like I’m on autopilot going to all my meetings and classes and work but I’m just suffering silently.

A month ago I had a few flares drained during surgery and I still remember the anesthesia induced hallucination I had. It was literally satan (I’m not even religious so ??) laughing at me and saying

“Are you an idiot? Why do you think this happens to you every single time? Why do you think it never ends? Why do you think nobody else can see it? Why do you think nobody you know has this? Why do you think you’re suffering like this? Stupid girl, you’re literally in Hell.”

Today, when my doctor told me seven years later, that there is a very high possibility my children would have HS too, I was surprised to be okay with it. I didn’t even like kids.

Because at twelve years old, I had seen the damage this disease had already done to my body. I knew it was genetic. Some part of me knew if I chose to have kids, then they’d suffer too. And I knew I’d rather not have kids if there was even a 1% chance they’d suffer like me.  

I think it has to do with the environment I was raised in. I was always a sick child, but even then, my parents demanded the best from me. They wanted straight As in 3rd grade, they wanted me to win all the awards, they wanted a perfect GPA. And when I got the praise and rewards from getting those things, I started to want them too. 

Then I went to a super competitive high-school where teachers purposefully made their classes much harder than the standard, a school where the kids would laugh at anyone who didn’t end up going to an Ivy League school. A school where getting a 33/36 on your ACT didn’t get you “Congratulations!” from your friends, it got you a “Don’t worry you’ll do better next time.” 

In highschool was also when my HS got really bad. But I was in denial. I was just like those other kids. I could compete with them. Even if I was studying for the AP chemistry test from a hospital room instead of the study group I was supposed to go to, I was still in the race. I thought I could still win. 

But I kept ignoring (or trying to forget) that I had something they didn’t. They could sit for hours on a couch without feeling discomfort. They didn’t have days where they couldn’t even cough without feeling jolts of pain shoot up their body. They didn’t have that constant panic in the ER–not because of the painful procedure you were about to undergo, but because they were missing a day of class.  

I’ve been out of this race for a long time. But my dumb “must achieve” self had to keep running, even if I had lost a leg, couldn’t breathe, and felt like the world was collapsing on me. 

Because otherwise I would fall behind. I’d be alone. 

Hey, 

I’m a 19 year old college student and I have HS. Stage 3 or 4, different doctors have told me different things. I’m struggling a lot. I feel like I used to be an actual person and this disease has taken over my life. So I decided to make this blog to contain all my HS/Life rants. 

I am accepting submissions because hey, everybody needs to rant about this. Or scream in frustration. I’m tired. I’m angry. I’m in pain. But hopefully by venting in this blog, I won’t let it get the best of me. 

I’m going to start listing a few things that have worked for me, maybe in the hopes that it’ll work for somebody else, We’re all in this together.