“The Silent Adversary: My Journey with Hidradenitis Suppurativa“ by Anonymous Teen

I remember the first time it happened vividly. I was fourteen, sitting in a cramped middle school bathroom stall, holding my breath to keep from crying out. A searing, pulsing pain had erupted under my arm, and I could barely lower it without agony. At first, I thought it was just a pimple or maybe an ingrown hair. But over the next few weeks, the flare didn’t go away. It got worse. The swelling turned into what felt like a knot of fire beneath my skin, angry, hot, and relentless.

I didn’t have the words for what I was experiencing back then. I didn’t know the name of my enemy. All I knew was that something was wrong with me.

As a young African American girl growing into myself, those years were already a complicated blend of self-discovery, insecurity, and identity. But having this unspoken, mysterious, and painful condition, something I didn’t yet understand piled shame on top of everything else. While other girls talked about hair, makeup, and dates, I was learning to layer my clothes to hide stains and swelling. I was mastering the art of faking stomach aches to stay home from gym class because even lifting my arms was torture.

It wasn’t until my junior year of high school that I was officially diagnosed with Hidradenitis Suppurativa (HS), a chronic skin condition that causes painful lumps, abscesses, and sinus tracts in areas of the body where skin rubs together, like under the arms, breasts, inner thighs, and groin. When the dermatologist gently uttered the name, it sounded foreign. I had never heard of it before. In fact, almost no one I knew had. “It’s not life-threatening,” he said, “but it can be very painful and affect quality of life.”

I nodded politely, but inside, I was screaming. Not life-threatening? Maybe not to the body, but to the spirit. It was devastating.

HS stole moments from my teenage years that I’ll never get back. While my peers went to pool parties and sleepovers, I spent nights changing bandages, cleaning wounds, and crying silently into my pillow. I became skilled at pretending. I learned how to laugh in public and weep in private. I would sneak into the bathroom during school hours, locking myself in a stall to check on a flare-up. Sometimes I’d spend an entire class period sitting on the toilet, afraid to move, praying no one would notice my absence. The fear of a flare rupturing during class haunted me like a shadow.

Worse than the physical pain was the shame. HS is not a “glamorous” illness. It’s not something people rally around with colorful ribbons or high-profile celebrities. It’s hidden in folds of skin, in private areas, in the unspoken spaces of conversation. It’s misunderstood, misdiagnosed, and dismissed. Doctors sometimes wave it off as poor hygiene or bad luck or just a weight struggle.

In the Black community, where medical mistrust and stigma often intersect, it can feel even more isolating.

As a young Black girl, there were already pressures I carried, unspoken but heavy. The need to appear strong, put-together, unshakable. But HS made me feel broken. Dirty. Unlovable. It whispered lies into my ears at night: No one will ever want you. You’re disgusting. You’ll always be alone.

Dating was a nightmare. I avoided it entirely in high school. How could I explain my condition to someone? What would I say, “Hey, just a heads-up, I get painful boils in intimate areas that sometimes burst and bleed”? The fear of rejection was too much to bear, so I kept people at arm’s length. I watched my friends fall in love, share kisses by lockers, get asked to prom, while I stayed behind, alone and aching. Not just physically, but emotionally.

My self-esteem was in tatters. I didn’t just dislike my body, I hated it. I saw it as a traitor. Every flare-up felt like a betrayal, a reminder that I was different, damaged. I became hyper-aware of every movement, every scent, every stain that might give me away. I would shower multiple times a day, use deodorants that burned, wear only black to hide any leakage. I smiled for selfies, but behind the camera, I was exhausted.

But here’s the thing about silent adversaries, they teach you how to fight in silence, too. Over time, I found strength not in erasing my pain, but in confronting it.

After my diagnosis, I began to research HS obsessively. I joined online forums, read medical journals, followed dermatologists and HS warriors on social media. For the first time, I didn’t feel so alone. There were others like me, hurting, fighting, surviving. Their stories gave me courage.

Eventually, I found the voice I thought HS had stolen from me. I started opening up to close friends about my condition. Some were compassionate. Some didn’t understand. But in telling my truth, I felt lighter. And then I realized, I wasn’t just carrying this for me. I was carrying it for every young Black girl sitting alone in a bathroom stall, wondering what’s wrong with her. I was carrying it for the people who suffer in silence, shamed into invisibility by a disease no one wants to talk about.

So I started talking.I wrote about what HS feels like, how it affects not just the skin, but the heart, the mind, and the sense of self. The response was overwhelming. People messaged me to say, “I thought I was the only one.” Parents reached out, grateful for the insight into what their daughters were going through. Even some of my classmates said, “I never knew. I’m so sorry. You’re so brave.”

That word, brave, used to make me uncomfortable. I didn’t feel brave. I felt scared. But maybe that’s what bravery really is: choosing to be seen, even when the world tells you to hide.

Today, I am still living with HS. There is no cure. Some days are better than others. I’ve tried medications, changed my diet, seen multiple specialists. I’ve cried over clothes I can’t wear, missed out on outings because of pain, and still feel the sting of insecurity when someone gets too close. But I am not ashamed anymore.

HS may not be a “big disease” in the eyes of the world, but its impact is enormous. It is a silent adversary, hiding in the shadows, stealing joy and confidence from those it affects. It goes undiagnosed for years, especially in people of color. It is misunderstood, minimized, and brushed off. But I refuse to be silent any longer.

Through my advocacy, I’ve been able to connect with dermatologists to promote early detection. I’ve spoken at school health fairs and created informational flyers for clinics in underrepresented communities. I’ve even started writing a blog, offering a space for others with HS to share their stories. Because this condition may be hidden, but we don’t have to be.

If there’s one thing HS has taught me, it’s that beauty and strength are not defined by smooth skin or social validation. They are born in resilience. In choosing to show up, flare after flare, pain after pain. In finding community, and in being that community for others.

I no longer see my body as broken. It’s a battlefield, but one that holds the scars of survival, of growth, of healing. My journey with HS is far from over. But every time I speak up, every time I offer support to someone newly diagnosed, I feel a little more whole.

To any young girl, hiding in a bathroom stall the way I once did, I want to tell them: You are not alone. You are not dirty. You are not weak. Your story matters. Your pain is real. And even in the quietest, most painful moments, you are enough.

We are enough.