A Day in My Life During a Hidradenitis Suppurativa Flare-Up

I hate going to sleep at night, especially when I’ve had one of my “good” days. These are the days when I can make it to drinks with friends and even make it to the gym. The days when I can go to spin class and not leave in excruciating pain. You might even see me in a tank top at the gym. You also might find me in a t-shirt at work and not wrapped up in a cardigan despite it being 90 degrees out. But unfortunately, these days are few and far between. They’re the days I hold onto when I’m going through a terrible HS (hidradenitis suppurativa) flare-up.

You see, going to sleep means my “good” day ends and a “bad” one might begin. Overnight, my body works against me as my boils get bigger under my arms and the open wounds start to drain. I wake up to find my shirt soaked with a terrible odor. I groan and put the pillow over my face. After 20 minutes, I force myself out of bed and go to my closet. I stare at my clothes. I can’t wear any of my tank tops or dressy blouses. I stare at my laundry as I see all of the stained shirts from last week’s flare-up. I find a big sweater and throw it on despite it being 80 degrees in LA.

I hear my roommate come back from her run, and I immediately have a pang of jealousy. I want to be able to wake up early and go on a run. Yet I can barely walk thanks to a flare-up in my groin area.

I force myself to make it to the office. Sitting at my desk for nine hours causes the boils in my groin area to get angrier. I try walking around a little bit but that also causes excruciating pain. I look at the clock as I count down the hours until I can go home, put on big sweatpants and lie in bed. I’m exhausted as my body continues to fight through this pain. I also have brain fog and my mind is distracted by my HS. I take my new prescription medication (Metaformin). I’ve been taking it for two months now with no results. I want to give up, but my dermatologist encourages me to keep taking it. She says that other HS patients have had great results despite the medication originally being used to treat type 2 diabetes. I hate the way it makes me lightheaded and nauseous, but I obey her orders.

I cancel my networking drinks that night. Since it’s not a close friend, I make up an excuse. I say I have a migraine that I can’t get rid of. I’ve learned that people understand the debilitating pain of migraines (something else I struggle with), so they’re much more empathetic. I hate lying so often, but the truth is a much more complicated explanation, and one that I’m too embarrassed to share. I spend the drive home feeling guilty about having to cancel and annoyed that I couldn’t go. I curse this disease for the limitations it’s put on my 26-year-old self.

When I get home, I immediately go to my room and change. My shirt is now soaked and looks like I ran a marathon. I immediately put some stain remover on it and throw it into the dirty laundry pile. I go out and apologize to my roommate for not staying up and hanging out with her. I feel like such a bad friend and roommate. I tell her it’s nothing personal. I’m just exhausted. I curl up in my bed at 7:30 p.m. with Netflix. I hate myself for not making it to drinks or the gym. I hate myself for not cooking a good dinner. Instead, I eat another frozen meal.

I can’t get comfortable, so I grab some Zzzquil. I fall asleep hoping tomorrow brings a good day. It’s a relentless cycle and one I hope someday ends.

Thinkstock photo via Evgeny Gromov.