Brianna Jenkins, 23, was diagnosed with hidradenitis suppurativa (HS), a skin disease that causes painful boil-like abscesses, when she was eight. When she got her period at age 10, her symptoms started to get a lot worse. She was also diagnosed with intracranial hypertension, a type of brain condition that causes headaches, dizziness, and light and sound sensitivity, in her teens. Living with two chronic illnesses has been debilitating—it’s prevented her from graduating on time, dating, traveling, and doing all the other “normal” things she wanted to do in her 20s. Now, Jenkins talks about what it’s like to live with HS on TikTok. Here’s her story as told to health writer Julia Ries.
I was eight years old when I got my very first abscess under my arm. My mom thought it would go away with rubbing alcohol and a warm compress, but that didn’t work. I went to my primary care doctor who, after examining my skin, said I might have HS and referred me to a dermatologist. When I saw the dermatologist, the bump—which had been the size of a pea—had grown to the size of a golf ball. I was diagnosed with HS. It hurt when I moved my body in certain ways or played with my cousins, but I really didn’t know what was going on back then.
A couple years later, when I was 10, I got my period, and the HS quickly spread around my underarms. My doctor prescribed steroids, which helped keep my pain in check but didn’t reduce the size of the abscesses. After that, whenever I got my period, my HS flared up and I would get steroids to calm my symptoms.
When I was 14, the HS got worse and became so embarrassing. I couldn’t lift my arms. It spread to my groin area. Wherever I would get up from a chair, my abscesses would leave a trail of fluid because they leaked at all times. I always wore sweaters and dark clothes, waited until I was the last person out of the classroom so no one would see, and started wearing pads every day to absorb the liquid. I was always worried about how I smelled.
When I was 15, I started getting bad headaches and my vision would randomly get blurry. I was diagnosed with intracranial hypertension, a condition where fluid builds up in the brain because the body doesn’t absorb it properly. If my HS wasn’t messing things up, then my brain was giving me headaches. High school is a trying time regardless; but with two debilitating chronic conditions, I was going through a lot.
My doctor prescribed a drug that addresses the immune reaction responsible for the inflammation to see if that would help my HS symptoms, but it didn’t. At that point, my dermatologist thought it might be a good idea to get all of the abscesses under my arms surgically removed. It seemed to get rid of them, but a few spots came back a couple of months later. Turns out the procedure didn’t help much. Several months later, my dermatologist performed a laser surgery around my underarms, and that finally healed the HS in that part of my body.
When I went to college at 18, my dermatologist put me on a different drug that kills bacteria that may be involved in inflammation. [Editor’s note: Bacteria are not the cause of HS.] I had to get an IV in my arm that stayed there and then administer the medication once a day in my dorm room. I was ashamed of it and didn’t want anyone to see, so I wrapped an ace bandage around my arm to hide the port.
The medication cleared up my skin and I finally felt good. I still got flare-ups during my period but they were minor. I’d get migraines here and there due to the intracranial hypertension but I kind of just ignored those symptoms and pushed through. The medications mostly helped me manage it, so I thought I could go out and be a normal college student. I’d been a goody-two-shoes in high school, but now I had all this freedom. I wilded out and partied with this IV in my arm. I became so stressed out and fatigued. Even though I had medicine that helped, my body slowed me down. I still had HS. I still had intracranial hypertension.
At one point, I got so stressed that I got very dizzy and nauseous. I went to the ER and found out I had too much fluid in my brain again and had to get a spinal tap. Life eventually sat me down and was like, Wait, you can’t do this, you’re still chronically ill.
During my sophomore year of college in 2022, I stopped the medication because I was tired of administering it every single day. That’s when the flares started up again. My skin was so inflamed and the HS tunneling started all around my groin. The abscesses were larger, too, and they became unmanageable. I couldn’t go to class and I’d have to sleep with a pillow in between my legs to find some comfort. I pushed myself to keep going and told myself I could handle it. After a few weeks, I called my mom and was like, “I need help.” My dermatologist put me back on steroids for a few weeks to help my body calm down and I started taking a medication that affects the immune system and reduces inflammation. That calmed my skin down a lot. Things were much better after that.
I’m still on that one to this day. It has been amazing compared to everything else I’ve tried. Though I still get a few bumps, especially on my period, for the most part, my medication keeps them dormant.
HS has done a lot of damage to me. I’m currently taking a break from school because of my health. I’m unable to go back on campus and walk from class to class. Just trying to drag myself out of bed and do homework is exhausting. It’s my goal—I want my degree, but my body doesn’t. I should have graduated in 2024, but I’ve been basically stuck in the junior realm for a year and a half. I don’t know when I will graduate. I just know that I will graduate.
Sometimes it feels like my body is working against me. Some weeks are harder than others and there are days when I wish I didn’t have HS. That I could be doing normal 20-something things like traveling, having a job, and dating. But, after a lot of trial and error to find a medication that works for me, I feel like my HS is manageable and that finally, after all these years, I have it under control.
Related:
- 7 Things People With HS Wish They Knew Earlier
- Why It Can Take Years to Get an HS Diagnosis If You’re Black
- I’m a Woman Living With HS. Here’s How I Navigate Dating and Relationships
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