How I Learned to Love My Bumps and Scars From Hidradenitis Suppurativa

I was 12 years old when I started getting painful blackhead-like boils and scars on my inner thighs. I had no idea what it was and refused to tell my mom because I thought I was personally doing something wrong, like not showering correctly. Eventually, the boils became so debilitating that I couldn't walk and begged to stay home from school, eventually forced to show my mom. She didn't have a clue what it was.

The two of us spent the next few years trying to manage my symptoms at home and bouncing from doctor to doctor for answers. Some MDs thought it was chronic boils, while others were just honest, admitting they'd never seen anything like it before. It was discouraging to me as a little girl because it reinforced the idea that something's got to be wrong with me if the doctors don't know what they're dealing with or what I'm dealing with.

The condition took a big hit on my mental health. The preteen and teen mind is vulnerable enough — your body is already going through so many changes and on top of that, I had to deal with the scarring and not being able to show up the way my peers could. At one point, I thought my symptoms were being triggered by an STD, which only added to the stigma.

I hid my symptoms from my friends and classmates, feeling isolated and betrayed by my body. I still remember the anxiety I felt playing volleyball in school, having to wear spandex and always tugging at mine worried that people would see and the boils would spread. With no answers, my mom and I often turned to self management (we tried to lance the boils at home) or trips to the ER to find relief. I was in the emergency room at least three or four times a year before I finally received a diagnosis at age 17.

It wasn't until I was doing an internship at a dermatology office that I scheduled an appointment with one of the specialists and I heard the words hidradenitis suppurativa for the first time. They told me they didn't know why it was happening, but there wasn't a cure and that they could prescribe an antiseptic for relief. I felt hopeless.

Maybe I was too young to comprehend the bluntness of it all, but that lack of compassion left me more defeated than I was happy to have an actual name of my diagnosis. I wound up abandoning my health after that, ignoring my HS altogether, leaning on drugs to numb the lack of self worth that I felt, and found myself engaging sexually with people who didn't deserve to be with me. It all stemmed from feeling so terrible about myself and betrayed by my body.

I didn't go back to the dermatologist until last year, nearly 10 years after being initially diagnosed.

It was in sharing my life on TikTok that I found the motivation to finally go back to the derm. I'd started to feel like I was living this double life online, encouraging others to embrace their HS and get checked out, but not having taken care of my own symptoms or negative self-talk. Each time that I would take a moment to just share a peek of what living with HS was like and read similar comments and experiences, I was healing myself.

Now, I speak to over 250,000 followers regularly about my HS journey in the hopes that theirs won't feel as isolated as mine. I've been able to use my advocacy work to be a part of multiple studies with biopharmaceutical company UCB, participating in their 'Make HStory campaign to raise awareness about the disease. And I've learned to love myself no matter what my body looks like on the outside.

Some days, it still feels like a work in progress and that's OK too. I often have to remind myself of what God says about me, particularly while looking in the mirror — and it's not the superficial things that we feel our body needs to look like or be or what size or the perfect smooth skin. I don't love how I look every day, but every day I do feel a little less disgusted with myself. My body is beginning to look normal to me.

Alexis Jones is the senior health and fitness editor at PS. Her passions and areas of expertise include women's health and fitness, mental health, racial and ethnic disparities in healthcare, and chronic conditions. Prior to joining PS, she was the senior editor at Health magazine. Her other bylines can be found at Women's Health, Prevention, Marie Claire, and more.