I’m A Body Positive Model Who Has Hidradenitis Suppurativa, And This Is My Story

When I was 8-years-old, I began to notice weird, purplish bumps between my legs and under my arms. They would often open, pus, and bleed.

As a child, I thought I was hitting puberty. I assumed my period would come at any second. Unfortunately, that wasn’t the case. After a particularly bad flareup, I showed my mom what was happening on my body. Like so many people, she assumed it was just a pimple at first. But as it all continued to expand and worsen, we realized something wasn’t right.

At this point, I found myself unable to move my arm, and it would hurt when I would walk. I didn’t quite understand what was going on, only that I was in pain, and just wanted to take some medicine and make it all go away. Diagnosis was hard to come by, and in the meantime, I had a hard time at school. In middle school, I’d be made fun of during PE when we had to change into our gym clothes. One day, a girl looked over and said, “ew, what is that?” gazing at the ball of lesion beneath my arm. I felt so embarrassed and shut down. But I also couldn’t blame her. I often had those same questions myself.

It took seven more years of doctor’s visits before I finally got an answer, and throughout that time, the condition was continually pinned to my weight. Unsurprisingly, even losing it didn’t help the condition, and even today remains one of its most pervasive myths.

After countless tests and hospital visits, I finally found a doctor who knew what was going on. 

You have an autoimmune disease called Hidradenitis Suppurativa. It is a chronic skin condition featuring lumps in places such as the armpits or groin, as you have been experiencing. So the skin lesions develop as a result of inflammation and infection of sweat glands. This condition features pea to marble sized lumps under the skin that can be painful and tend to enlarge and drain pus. They usually occur where skin rubs together, such as in the armpits, groin, and buttocks.”

At first, I couldn’t even pronounce my condition.

A lot has changed since that day. 

HS has affected all aspects of my life: family, friendships and even romantic relationships. Mostly, the struggle is feeling very misunderstood and trying to explain to people what it is and how it affects me. Some understand and some don’t. Sexually, it has been really difficult for me to give myself 100 percent of myself. I have had some trust with my partners but there was always something off about how they treated my body. That has affected how I see relationships or even think I would never find the one who will truly understand and support me through it or even go to a doctor’s appointment with me and know what to say or try. Some people just cant be with someone with a chronic skin condition and that’s fine, but it took myself awhile to realize that there will be someone that will love me fully no matter how my skin looks.

Mostly importantly, HS has affected my self image and body confidence, which is ironic, because after acting since I was 13-years-old, I am now a curve model. However, I’ve come to understand that having HS actually did help me discover my worth.

With my body confidence pretty shot, I struggled to be kind to my body. As I got older I came across this quote that I still go by today: “Time will turn your pain into your strength, your scars into art.” Through modeling, I learned to love my body. It has been a key part of helping my confidence grow and help me accept my body and love it the way it is no matter what. These are my warrior wounds and I am proud to have them.

My scars are an art piece, I am a walking canvas, and those are my stories. 

Along with loving myself and sharing body positivity, I am currently in the process of making a documentary about navigating life with HS, which will be out this summer.

For any young woman newly diagnosed, please know: you are still beautiful. Your scars are your battle wounds, symbols of how far you have come and much you have faced. No matter the bumps or scars on your body, no matter the obstacles you may face, and on the days where it might seem dark that there is a light at every tunnel — you will get through this. You can do anything you put your mind to.

About the author
Kaitlyn was born and raised in New York City. She worked as an actor with the MCC Youth Company off-Broadway show ... Follow Kaitlyn on Instagram or read more articles from Kaitlyn on Thought Catalog.

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