I’ve never liked to be the center of attention. I was the kid who’d hide behind my mom’s leg at a birthday party. Often at my own party. I grew out of that, and gained confidence about sharing what I was good at. But when I suddenly and unexpectedly lost my ability to walk at age 18, I felt like that little kid again.
Don’t look at me.
I was a senior in high school at the time, a captain of my school’s dance team, and all of a sudden I was stuck in bed and needed help to get to the bathroom without falling over. Even when I had regained some of my balance, walking unassisted was jerky and precarious. My back ached from constantly trying to compensate for my uncoordinated movements. I remember my principal offering to let me use a wheelchair while I was at school, to make things easier. I said no way—I didn’t want that much attention drawn to myself. Instead, my sister helped me get from class to class, and I remember each of those brief walks (in very crowded hallways) being difficult and painful. But I already had so many people asking questions. I didn’t want that from people I didn’t even know, too. I didn’t want my impairment to be even more visible than it already was.
“I didn’t want my impairment to be even more visible than it already was.”
I think about that now and think I was being so silly. Wheelchairs can make life easier, and being five years removed from high school helps, too. But it was so ingrained in me, as I think it is in most of us, that appearing disabled is bad. Whether or not you actually are—don’t let it show. Toughen up. Push through it. And I recognize that I am lucky enough to have the privilege to be able to hide my disability. Many people don’t have that option. But at 18 I knew, even if only subconsciously, that if I used that wheelchair I would be treated differently.
I have fibromyalgia, a chronic pain and fatigue disorder. The exact time when that started is unclear, but we think this episode of ataxia (a of lack of voluntary coordination of muscle movements that includes gait abnormality) was related to the onset. I had several more ataxic episodes before my fibromyalgia was diagnosed, and since we started treating the fibro, those episodes have become few and far between. The last one was in February of 2016, which I remember distinctly because I spent Valentine’s Day in the emergency room.
The February episode was the first time I became ataxic after moving out of my parents’ house. Because the doctors were concerned that I didn’t have enough help at home to complete daily activities safely, I was admitted to the hospital. Once I was released, I used a cane for stability when I left the house. This meant that I started navigating campus at the University of Washington as a visibly disabled person for the first time. And boy was that an experience! Our campus is painfully difficult to navigate for people with mobility impairments, as I already knew due to my invisible illness. But what I hadn’t yet experienced was the way that I would be treated.
“It was as though everyone suddenly felt entitled to know the state of my body, privacy be damned.”
Don’t get me wrong—people were usually very kind, helping me with doors and such. But it’s fairly unusual to see a 21-year-old with a cane, and that became clear quite quickly. I got looks of pity from people I didn’t even know, and questioning stares from acquaintances who didn’t know me well enough to ask what had happened. While I was waiting for an elevator in the art building, a faculty member I’d never met struck up a conversation with me about how she’d recently been using a cane after a surgery and it would be so nice for me once I was fully healthy again—just assuming that this was a temporary thing without even asking. A barista at the café in the business building asked me what happened. I was feeling particularly annoyed and bold that day, and shot back a quick “nothing, I’m just disabled,” which left him stuttering and taken aback. It was as though everyone suddenly felt entitled to know the state of my body, privacy be damned. And while I didn’t mind explaining to my friends what was going on, I sure as hell didn’t want to discuss it with everyone who saw me.
Don’t ask me questions.
Many disabled people are used to being unusually open with people they may not know very well. We have seen countless doctors and medical professionals, to whom we have to explain minute details of our daily lives and bodily functions. Over and over and over again. Some of us need help with things like bathing and using the bathroom, which make us vulnerable to a whole other group of people. Our bodies are already being examined, prodded, and exposed to levels that abled folks just haven’t experienced. Unless you and I are close, please don’t be another scrutinizing eye and well of questions.
Don’t tell me I’m too young for this.
Fibromyalgia is a disease that is usually associated with women at least 30 years older than myself. Other things that I deal with, such as chronic kidney stones, don’t usually happen to someone my age either. I am aware. I’ve spent plenty of my own time agonizing over what might have been if I was healthier, how much easier things could be. Sometimes, more than anything, I just want to eat what I want and stay out late like my peers do without suffering the consequences for a week or two. But feeling sorry for myself over how my body works doesn’t help me live my life or learn how to cope. So please don’t bring it up.
“Feeling sorry for myself over how my body works doesn’t help me live my life or learn how to cope.”
Being chronically ill in college is, I think, a special kind of hell. I could go on for days about the inaccessibility of academia and in general how unhealthy it is for young adults to be in an environment that normalizes and even glorifies pushing one’s body and mind past reasonable limits. My peers barely get enough sleep, go to school, work part time or even full time jobs, stress out about money and homework, try to have fun, and are told that it’s okay because we’re young and we can handle it, and that’s just what we have to do. And I’m trying to do those things too. College doesn’t have much down time, which is something that’s essential to keep my body running at the lower end of my pain scale. The longer I am awake and active, the more pain I am in, and if I don’t get enough rest, that meter never resets, until I am in so much pain that I cannot do anything else anymore.
I often feel like I am separate from my body, and the two of us are trying to learn how to get along. The social model of disability claims that we are not disabled by our bodies, but by the barriers in the environment and society that surrounds us. And I certainly find that to be true in many cases. But also, damn does it feel like my body is its own barrier sometimes. Meeting other disabled people and finding the vibrancy of the disability community online has helped me come to terms with the life I have and my own embodied experience. But I think that I am still fairly early on my journey to being comfortable with my body and proud of being disabled. I don’t feel healthy, but as someone whose impairment is invisible (most of the time, at least) I often feel like an imposter in the disability community. Like I’m not disabled enough to talk about it.
I’m trying to talk about it anyway.