This Is What I’m Learning About Living With Hidradenitis Suppurativa

I caught a glimpse of her shoulder, and for a moment, I imagined how soft it might feel against my cheek – no blemishes, no oozing craters disturbing the silk that was her skin. I think her name was Mercedes, and we hadn’t exchanged more than a total of 10 words throughout our quarter-long class. That day she wore a white halter top with a red flannel around her petite waist.

Hidradenitis Suppurativa is a chronic autoinflammatory skin condition where painful lumps form in the armpits, groin area, under the breast area, and behind the neck. For women, such as myself, it’s more common in the armpits, groin, and under the breast area. 

When I was 18, I was diagnosed with Hidradenitis Suppurativa (HS). I had experienced painful cyst-like bumps under my arms since I was 16, but they came and went. So, I didn’t think much of it. It wasn’t until I started college that I decided to go see a dermatologist because the frequency of these bumps seemed to increase. I began treatment with countless antibiotics and ointments. The frequency seemed to decrease, but nothing ever really stopped these cysts. 

It was moments like my encounter with Mercedes where I found myself growing envious of something most people do not take the time to think of. It began with magazines where models held their arms above their heads, exposing their armpits. I’d stare at the empty and evenly toned skin that lay within the crease of their upper limbs and filled with jealousy.

How does it feel to have normal armpits?

To move freely without pain disrupting the natural flow of your body?

Whoever she was – a quiet classmate, a model in a magazine – I always wanted her skin. I wanted someone to look at me and see cashmere goodness – not skin that resembled swiss cheese.

I wouldn’t say HS has prohibited me from wearing certain things, but it has eroded my confidence with every passing scar these flares leave to wear what I want. I don’t feel comfortable wearing anything that could expose my upper arms, moving my arms can sometimes be difficult, and bikini season is a newfound fear.

For a while, I grew angry at my body.

How could it do this to me? 

How could it choose to develop this rare but real disease when it knew the dreams I had – the girl I wanted to be? 

The girl I wanted to embody was her – the bikini Instagram pictures, the Pilates classes, the cute white sweaters in the fall. The truth is, bikinis are harder to pick out, sweat triggers flare-ups, and white doesn’t last me long due to the oozing flares.

It took me a while to realize that my body is on my side. My body is trying its best, and as much as I don’t like this, she doesn’t either. My job is to guide my body into doing what is most comfortable for her, and every day I’m finding out what that means exactly.

Although I’ll never be her, having HS has given me sacred moments of intimacy where I appreciate the skin that remains unaffected. I cherish that part of me and realize that despite my flares, I have gained an immense amount of gratitude that carries me throughout the darkest days.

In the meantime, I’ll continue to pass by people with skin that resembles Mercedes’ and instead of growing envious, I will try to be her who can see the beauty in others while recognizing the beauty within herself. HS has given me that opportunity to revisit my beauty standards and add myself to the definition of what beauty truly is. Beauty is her – whoever that may be and whatever she may be going through.