Finally accepting I could use some help gave me more freedom than I imagined.
Health and wellness touch each of us differently. This is one person’s story.
“You’re too stubborn to end up in a wheelchair.”
That’s what an expert physiotherapist in my condition, Ehlers-Danlos syndrome (EDS), told me when I was in my early 20s.
EDS is a connective tissue disorder that affects pretty much every part of my body. The most challenging aspect of having it is that my body is constantly getting injured. My joints can sublux and my muscles can pull, spasm, or tear hundreds of times a week. I’ve lived with EDS since I was 9 years old.
There was a time when I spent a lot of time pondering the question, What is disability? I considered my friends with visible, more traditionally understood disabilities to be “Real Disabled People.”
I couldn’t bring myself to identify as a disabled person, when — from the outside — my body could otherwise pass as healthy. I viewed my health as constantly changing, and I’d only ever thought of disabilities as something that was fixed and unchangeable. I was ill, not disabled, and using a wheelchair was only something that “Real Disabled People” could do, I told myself.
From the years pretending there was nothing wrong with me to the time I’ve spent pushing through the pain, most of my life with EDS has been a story of denial.
During my teenage years and early 20s, I couldn’t accept the realities of my ill health. The consequences of my lack of self-compassion were months on end spent in bed — unable to function as a result of pushing my body too hard to try and keep up with my “normal” healthy peers.
The first time I ever used a wheelchair was at an airport. I’d never even considered using a wheelchair before, but I’d dislocated my knee before going on holiday and needed assistance to get through the terminal.
It was an amazing energy- and pain-saving experience. I didn’t think about it as something more significant than getting me through the airport, but it was an important first step in teaching me how a chair could change my life.
If I’m being honest, I always felt like I could outsmart my body — even after living with multiple chronic conditions for nearly 20 years.
I thought that if I just tried as hard as I could and pushed through, I’d be fine — or even get better.
Assistive devices, mostly crutches, were for acute injuries, and every medical professional I saw told me that if I worked hard enough, then I’d be “fine” — eventually.
I wasn’t.
I’d crash for days, weeks, or even months from pushing myself too far. And too far for me is often what healthy people would consider lazy. Over the years, my health declined further, and it felt impossible to get out of bed. Walking more than a few steps caused me such severe pain and fatigue that I might cry within a minute of leaving my flat. But I didn’t know what to do about it.
During the worst times — when I felt like I didn’t have the energy to exist — my mom would show up with my grandma’s old wheelchair, just to make me get out of bed.
I’d plonk down and she’d take me to look at shops or just get some fresh air. I started using it more and more on social occasions when I had someone to push me, and it gave me the opportunity to leave my bed and have some semblance of a life.
Then last year, I got my dream job. That meant I had to figure out how to go from doing next to nothing to leaving the house to work for a few hours from an office. My social life also picked up, and I craved independence. But, yet again, my body was struggling to keep up.
Through education and exposure to other people online, I learned that my view of wheelchairs and disability as a whole was wildly misinformed, thanks to the limited portrayals of disability I saw in the news and popular culture growing up.
I started to identify as disabled (yes, invisible disabilities are a thing!) and realized that “trying hard enough” to keep going wasn’t exactly a fair fight against my body. With all the will in the world, I couldn’t fix my connective tissue.
It was time to get a power chair.
Finding the right one for me was important. After shopping around, I found a whizzy chair that’s incredibly comfortable and makes me feel fabulous. It only took a few hours of usage for my power chair to feel like a part of me. Six months later, I still get tears in my eyes when I think about how much I love it.
I went to a supermarket for the first time in five years. I can go outside without it being the only activity I do that week. I can be around people without being terrified of ending up in a hospital room. My power chair has given me a freedom I can’t remember ever having.
For people with disabilities, a lot of conversations around wheelchairs are about how they bring freedom — and they really do. My chair has changed my life.
But it’s also important to recognize that in the beginning, a wheelchair can feel like a burden. For me, coming to terms with using a wheelchair was a process that took a number of years. The transition from being able to walk around (albeit with pain) to being regularly isolated at home was one of grief and relearning.
When I was younger, the idea of being “stuck” in a wheelchair was terrifying, because I connected it to losing more of my ability to walk. Once that ability was gone and my chair gave me freedom instead, I viewed it completely differently.
My thoughts on the liberty of using a wheelchair is counter to the pity wheelchair users often get from people. Young people who “look fine” but use a chair experience this pity a lot.
But here’s the thing: We don’t need your pity.
I spent so long being made to believe by medical professionals that if I used a chair, I’d have failed or given up in some way. But the opposite is true.
My power chair is a recognition that I don’t need to force myself through an extreme level of pain for the smallest things. I deserve the chance to truly live. And I’m happy to be doing so in my wheelchair.