Why It Can Feel Embarrassing to Stand Up From My Wheelchair

People tend to judge things by their primary purpose. A phone is for making phone calls. Wheelchairs are for people that can’t walk. But now we all accept that phones are also for checking Facebook, taking pictures and playing games. So why can a wheelchair only be for people physically unable to walk at any time?

Fibromyalgia is a neuromuscular disorder that results in chronic pain, and is a cause of a lot of mobility problems. Starting in my teens, I developed increasing amounts of pain centered mostly around my hips. A decade later, in my late 20s, I struggle to walk for almost any length of time. There is ostensibly no such thing as pain-free walking. I can’t go out until it hurts, because then I will never leave the house, but I have to go out until I struggle to walk, head swimming because of pain-related over stimulation. Fun, right? So I looked for ways to improve things.

In order to help out when going on half-day trips (a whole day is too long), we bring a wheelchair and/or crutches. The wheelchair makes a huge difference, and is the only reason I agree to try a half-day trip. Having the wheelchair means I don’t have to spend a second longer on my feet than necessary or desired. This won’t eliminate my pain problems, but will slow down how fast my pain builds, leading to longer and more enjoyable activities. With the stiffness and discomfort that also arises from sitting too long, it’s ideal for me to frequently get out the wheelchair, just for a few minutes to prevent sitting-associated pains for as long as possible. That’s where the problems begin.

A lot of people try to be incredibly expansive and polite towards people using wheelchairs. In my experience, very little or none of this empathy remains if the person in the wheelchair stands up. Kind, motherly-looking ladies that smiled so sweetly when I push myself past are suddenly giving me dirty looks when they think I’m not looking. Polite gentlemen first offering to help you with a ledge suddenly wonder, rather condescendingly, “Did you sprain your ankle?”

It’s not that I have no understanding of where they’re coming from. More than once in my life have I seen some teenagers make their way down the street, one in a wheelchair. While laughing and messing around and being altogether far too loud, the one pushing the wheelchair declares “My turn!” and her suddenly spritely friend jumps out to switch places with no apparent physical problems. Sure that happens.

But what also happens is that one of our very infrequent outings is cut even shorter because I’m not comfortable to move in and out of the wheelchair as often as my body would demand. What’s even more ridiculous and just makes me feel like a fool: part of me sometimes feels the need to stand up with some dour expression, to signify — what? I barely know. That it’s a big deal and I don’t want them to think I don’t need the wheelchair? I find the judgement and the stares a frustrating addition to my day, so I worry about making life harder for myself and other part-time wheelchair users by bouncing out and appearing to have a jolly time. I feel responsible for not propagating the notion that everyone who can rise from a wheelchair is someone who got their hands on one just for fun.

I worked very hard to walk as much as possible. For nine months, twice a week, I spent about six hours at the hospital for physical therapy, cognitive behavioral therapy, and all kind of other tools to deal with my chronic pain. I shouldn’t let looks and opinions of others affect how I manage my pain and fight for the most liveable life possible. And I won’t — I’m going to be better about it.

But maybe, if you ever see someone stand up from their wheelchair, please don’t think they don’t need that wheelchair — just that they don’t need the wheelchair in that moment, which is great! For some, it’s a great victory, and they shouldn’t be judged for it. Share a smile, perhaps. It can make a difference in someone’s day.