Brianna Jenkins was just eight years old when she experienced the first signs of hidradenitis suppurativa (HS)—a chronic skin disease that causes painful, boil-like abscesses. The initial bump appeared under her arm and, despite efforts like warm compresses and rubbing alcohol, it only grew larger. “When I went to the dermatologist, the bump—which had been the size of a pea—had grown to the size of a golf ball,” Jenkins recalls. That day marked the beginning of her journey with a condition that would significantly impact her life.
By age 10, when Jenkins started her period, her symptoms intensified. The HS began spreading around her underarms. Her doctor prescribed steroids to help manage the pain, but the abscesses persisted. “Whenever I got my period, my HS flared up, and I’d have to rely on steroids to calm the symptoms,” she says.
RELATED: Is It HS? 6 Common Misdiagnoses Black Folks Should Look Out For
“I Was Always Worried About How I Smelled”
As Jenkins entered her teenage years, her HS became even more debilitating and emotionally taxing. “It got worse and became so embarrassing. I couldn’t lift my arms. It spread to my groin area,” she explains. The abscesses constantly leaked, leaving a trail of fluid wherever she sat. To cope, Jenkins wore dark clothes, sweaters, and even started using pads daily to absorb the liquid. “I was always worried about how I smelled,” she tells SELF. “I’d wait until I was the last person out of the classroom so no one would see.”
At 15, Jenkins began experiencing a new wave of symptoms: severe headaches and blurred vision. After numerous tests, she was diagnosed with intracranial hypertension—a condition where excess fluid builds up in the brain, leading to dizziness, light and sound sensitivity, and extreme pain. “If my HS wasn’t messing things up, then my brain was giving me headaches,” Jenkins shares. Navigating high school was already challenging, but having two chronic illnesses made it an uphill battle.
RELATED: Stay Confident and Fresh: Top 5 Tips for HS Management
Surgical Interventions and Treatments
During her teenage years, Jenkins explored various treatments. Her dermatologist initially suggested removing all the abscesses under her arms surgically, which provided temporary relief. However, the abscesses eventually returned. “It didn’t help much,” she says. “Several months later, my dermatologist performed a laser surgery, and that finally healed the HS in that part of my body.”
When Jenkins started college at 18, she began a new treatment—an antibiotic delivered through a port in her arm, which she administered daily. “I was ashamed of it and didn’t want anyone to see,” she admits. “So I wrapped an ace bandage around my arm to hide the port.” Despite the emotional toll, the treatment worked. For the first time, her skin cleared up. “I finally felt good,” Jenkins says. While she still experienced flare-ups during her period and migraines from intracranial hypertension, the medications made her conditions more manageable.
In her newfound relief, Jenkins tried to live a “normal” college life. “I’d been a goody-two-shoes in high school, but now I had freedom,” she shares. However, pushing herself too hard led to setbacks. “At one point, I got so stressed I ended up in the ER and needed a spinal tap to relieve the fluid in my brain. Life eventually sat me down and was like, Wait, you can’t do this, you’re still chronically ill.”
RELATED: Living with HS: ‘You’re So Much More Than the Scars’
Learning to Manage Her Conditions
By her sophomore year, Jenkins grew tired of the daily treatments and stopped the medication. The consequences were swift and severe. “The flares started up again. My skin was so inflamed, and the HS tunneling began all around my groin,” she recalls. The abscesses became unmanageable, leaving Jenkins unable to attend class or even sleep comfortably. “I pushed myself and told myself I could handle it. But eventually, I had to call my mom and say, ‘I need help.’”
You May Also Like
Her dermatologist put her back on steroids and started her on a new medication that targeted her immune system to reduce inflammation. “That calmed my skin down a lot, and I’m still on that medication to this day,” she explains. “It’s been amazing compared to everything else I’ve tried. Though I still get a few bumps, especially during my period, for the most part, my medication keeps them dormant.”
“My Body Doesn’t Want What I Want”
Living with HS and intracranial hypertension has come at a cost for Jenkins. “I’m currently taking a break from school because of my health,” she says. The physical demands of walking to classes and managing schoolwork became too exhausting. “It’s my goal—I want my degree. But my body doesn’t. I should have graduated in 2024, but I’ve been 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.”
Reflecting on her 20s, Jenkins acknowledges the challenges of missing out on what many people consider “normal” experiences. “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,” she admits.
Despite the hardships, Jenkins has found a sense of control over her conditions after years of trial and error. She now shares her experiences on TikTok, using her story to help others with HS feel less alone. “After all these years, I feel like my HS is manageable,” she says. “Some weeks are harder than others, but I finally feel like I have it under control.”
For Jenkins, her story isn’t over—she’s still working toward her goals, and she’s determined to achieve them on her own timeline. “Sometimes it feels like my body is working against me,” she says. “But I know I’ll get there.”
