Learning to Listen to My Body

"You're too young to be in a wheelchair." 

The words echo louder than I'd like to admit. I've seen elderly people still walking—so why can't you be stronger? Why don't you even try?

As someone who's always been fiercely independent—adventurous, determined, relentless—nothing has been harder than facing the reality that sometimes, my legs simply don't work the way I want them to. It's not the stares or awkward glances that get to me. Not even the whispers or passing comments. It's this one assumption—the idea that youth equals ability, that disability is somehow a choice, that maybe, if I just tried harder, I could push harder, I could push through it.

I doubt myself. I ask myself the same harsh questions people ask me: Shouldn't I be stronger? Shouldn't I just get on with it?

But then I remember. I remember all the times I did try. I do try.

Like when I first got sick, I would leave the hospital on crutches, chuck them to the side of the basketball court, and push through the pain—because giving up sports hurt more than the sickness could. I remember the relentless cycle: leaving hospital, going to play, ending up back in hospital. When my casts came off my legs, I went straight back to playing and two weeks later—back in casts.

My illness was slowly taking over my body, and soon, I was struggling to run. My coach started to notice, and he made me sit out, even though I kept brushing it off. But when he saw me outside training using crutches, the truth finally caught up with me. He found out about my condition and banned me from playing. I came back to watch a few weeks later, just to feel some semblance of playing. Someone brushed past me ever so slightly—I fell. And I could barely get back up.

It wasn’t only basketball I was losing.

It was running.

It was cycling.

It was badminton.

It was… my life?

I threw myself into work, and it becomes a new cycle—working full time through the pain, ending up in hospital, quitting work, recovering, then starting again at a new job. I keep going, because crying about it won't change my reality—so I push through, until my body can’t anymore.

Last year, whilst playing wheelchair badminton, I felt a crack in my shoulder. Unbeknownst to me at the time, I had partially dislocated it. I winced in pain, but since pain is my reality, I carried on playing. This in turn caused me to tear the tendons in my shoulder. I should have listened to my body which was screaming at me in pain and not my mind that was questioning- why can't you just push through the pain?

This stems from the way I was treated at Great Ormond Street Children's Hospital years before my diagnosis. I was constantly told to stop crying, that my pain wasn't real, that I was making it up—that the pain was all in my head. As I read in my medical notes, my doctors referred to it as 'fear avoidance'—that I would refuse to walk because of the fear of pain, rather than trying.

Nothing about me screams fear. I never used my illness as an excuse to do nothing. Regardless of how many times I was forced to quit, and press pause on my life, I carried on. I'm someone who thrives on being busy. Staying active feels like staying alive. I've pushed through pain, and I've dealt with the consequences.

Before my illness, I had gone mountain climbing, rock climbing, free-falling, and had plans to continue my thrill-seeking adventures. My body slowed down, but my mind didn't. No one chooses to be disabled. It is something that can happen to anyone, anytime. When the choice is between being bedridden or getting out and about in a wheelchair, guess which one I'll choose.

Saalihah - 21 Years Young