Tattoos, Pain, And Incurable Illness

When you live with chronic pain, choosing when and where to experience pain can be a gift, and an act of control.

I got my first tattoo at 18, much to my parents’ chagrin. I don’t remember when exactly it was that I fell in love with the idea. Growing up in the punk scene, I couldn’t think of a specific person whose inked skin made me suddenly decide my skin needed to look similarly, mostly because everybody’s skin was tattooed. It was exactly what I planned to do the minute I was old enough, because I wanted to. Because I could.

So I drove in my green mini-van to the tattoo studio all my friends went to and spent the morning of my 18th birthday getting tattooed (with a tattoo of such poor quality and miniscule size that I would eventually cover it up entirely). Back then, almost 15 years ago, my tattoos were a declaration of selfhood, a way to decorate my body with things I loved. Back then, the niggling pain in my back was just a minor irritation, probably nothing big, just a discomfort from standing on my feet as I worked as a restaurant hostess. There was no connection between that pain and getting work done at a tattoo studio.

Except the back pain didn’t go away. It got worse. Some days, the pain was so bad that I would have to call in to the restaurant where I worked, gasping as I explained I wouldn’t be coming in that day. I graduated high school and moved away from my hometown to attend the University of Central Florida in Orlando. Days when I couldn’t work were inevitably also days when I couldn’t attend class.

I’d spend hours in bed, splayed out, trying desperately and carefully to not move at all. If I stayed still, I couldn’t feel the lightning bolts of pain shooting from my back into my ribcage, down my legs and into the soles of my feet.

The body that I had relied upon for so many years, through karate lessons and long-distance running and college all-nighters, suddenly stopped behaving in a way I could anticipate. I could no longer trust that I would wake up and be able to complete all the tasks I needed to through the course of the day.

Hell, I could no longer trust that I would even be able to crawl out of bed. A creeping dysphoria set in: this is my body, but it is not myself. My body was separate from my existing, and both had to be managed in order to get through the day. As my dysphoria became more apparent, the act of being tattooed started to be less a declaration of selfhood and more about feeling a sense of control over a meatcage spun wildly out of control.

After I was finally diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS), a genetic, degenerative collagen disorder that causes my joints to easily dislocate, I began to reconcile the reality that my symptoms weren’t going to disappear. There is no cure for hEDS. As my understanding of my body evolved, the nature of my tattoos did, too. They started getting bigger, stretching across my entire shoulder and down my arm, or over my hip and across my thigh.

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