Written by Emma Chamberlin for “Feminist Disability Studies”
It’s been almost ten years since the diagnosis.
The welcoming party of a recent companion.
A decade of immense pain, physical and emotional discomfort, and a slew of doctor’s visits.
—
I was on the school bus one afternoon, traveling to my favorite place in the world—my mom’s insurance agency.
Listen. In the seventh grade, I didn’t have much to compare it to. All I knew was that the small, 600 square-foot office space brought safety and security and a dozen stray cats in the back parking lot (one of which we rescued when I was a child).
Sitting on the bus—a mere ten-minute ride—I grew uncomfortable in my seat. Shifting my weight from side to side, I could not sit comfortably. I thought to myself, “huh, that’s weird.” It was a numbness and aching in my tailbone—a discomfort I had never felt before. But I continued on with my day.
It came back the next day. And the next day. And the next. Until finally, I brought it up to my mother.
—
A visit with my primary care doctor turned into an ultrasound. The ultrasound turned into an MRI which turned into a three-word medical term that sounded like pure gibberish.
Degenerative Disc Disease.
My new friend and lifelong companion.
I was described as having the scans of an eighty-year-old woman. At the ripe age of twelve.
And he brought a friend with him. Shortly after my DDD diagnosis, I was told I also had hypermobility syndrome. At first, I thought it was just a fancy way to say I was flexible. A party trick, even.
Hypermobility syndrome is common among children who often grow out of their symptoms. At twenty-one, however, I am still able to extend my thumb toward my forearm; my palms flat to the floor while standing upright. I have a fear of rolling my ankle wherever I go, simply because the ligaments connecting my joints are too loose.
I knew I was in pain—had been in pain for a while—but I didn’t quite have the vocabulary to express it.
I still don’t, if I’m being perfectly honest.
—
As I grew older, the internet searches began. What was my life expectancy and what surgeries were imminent for my future? Did I have options? People get diagnosed with this when they’re old and they’re able to deal, but what am I supposed to do for the rest of my life?
(I had debilitating anxiety as a kid, too. How could you tell?)
Every ache and pain turned a feared Google search on what this could mean for my future.
Scared of doctor’s visits, where I was always told, “let’s see how it is next year.”
Cries for help met with refusals for answers.
My body, for so long, rejecting itself. And me rejecting my own body.
—
It was in my feminist disability studies course—the fall semester of my senior year of college—where I first considered: Am I disabled?
I mean, I’m only twenty-one. I can get around just fine. Well, most days.
Some days.
I have this base-level of pain each day, but everyone has that. Right?
They don’t?
Drowning myself in Ibuprofen. I’ve heard taking it regularly can be dangerous, but I have no choice.
Denying my own pain each day. I’m just being dramatic. Obviously.
I’m not disabled enough to take up that label.
—
But I am. And I will. Because invalidating my own pain is an attempt to invalidate myself.
I am my diagnosis, but I am also so many other things. A learner. A cat lover. An advocate. A musician. A person who loves and cares so deeply, even if it means nothing in return.
I am valid. My pain is valid.
And yes. It is enough.
Disability & Access Collective 