"My decline was out of my control. I was losing everything I was told would help me improve as quickly as I was able to grasp it..." Sophie's experience living with disability under scrutiny.

The life of a disabled person is one of constant scrutiny. It’s being told you’re too pretty to be sick or that your disability makes you unattractive. It’s being told you don’t look sick enough to use mobility aids but being told you’re lazy when you can’t get out of bed without them. Everyone has endless criticisms and advice to offer. Everyone wants to give their input on your sick body, how you should feel about it, and how they think you should fix it. 

“This one trick cured my POTS! For just $799 you can sign up for my one-on-one coaching. Link in my bio!” 

Our realities are constantly perverted for profit. Misinformation floods my ForYou page, trivialising and memeifying the illnesses that robbed me of a full life. Derisive laughter rings in my ears with hundreds of comments mocking and picking apart the illnesses that destroyed my life before it could even begin. 

I’ve been sick for as long as I can remember. So long, I didn’t realise it wasn’t normal. I’d grown accustomed to my mum banging on my door, yelling that I’m late for school as I picked myself up off the floor, having passed out yet again. 

“I’ve been yelling for thirty minutes!” 

I just thought she was exaggerating. I wasn’t on the floor for thirty minutes. 

I couldn’t grieve something I didn’t realise I was missing. An ambulance trip here; a hospital venture there. No one seemed to think anything was wrong. 

“You’re menstruating now, right? Yeah, that’s probably it. It’s because you’re a girl.” 

“Periods are supposed to hurt.” 

“You’re too young.” 

“That diagnosis is too damning.” 

“You’re just anxious. Take this pill.” 

“Exercise more,” is something they told me when my body started failing me more than ever. I was running between five to eight kilometres multiple times a week and walking every second in between. I’d been strength training and had visible abs that I would flex in front of my bedroom mirror. 

But still, I couldn’t keep up. My decline was out of my control. I was losing everything I was told would help me improve as quickly as I was able to grasp it. I lost my ability to run long distances seemingly overnight. 

As I’ve gotten sicker, my grief has grown like a thick fog that permeates my every day. It fills my lungs and weighs my every breath. 

In late 2023, I started posting about my illnesses on TikTok, and like a ray of light cutting through the fog, I found a small community. For the first time ever, I felt like I wasn’t completely alone. 

When you’re disabled, people will sell you the idea that you can’t possibly be happy–that joy and suffering cannot coexist. I bought into this narrative for so long, consumed by my own misery. But disabled joy is real and a powerful retort to the ableist rhetoric that permeates public opinion and influences policy and treatment of disabled people. 

For me, disabled joy is connecting with other people like me and knowing I’m not alone. It’s the rush of catching myself before I fall back in my chair practicing my wheelies, and for a split second, I feel an adrenaline surge, and it’s like I’m running again. It’s going outside for just a moment while I spend the rest of my days in bed, listening to the birds from behind my closed blinds. It’s my partner bringing me a steaming bowl of home cooked food, even if I can’t finish it all. 

For me, the joy and grief exist hand-in-hand as I navigate a world designed to suffocate and isolate disabled people. And I know I’m not alone in this, too–that this simultaneous sense of grief and joy unites so many chronically ill people who share in similar suffering. 

While we may be underrepresented in the media; while our rights and freedoms are debated for political gain; while we are dismissed and diminished online, we continue to grow stronger in community together. Our voices will never be silenced. 

I am proud of who I am. 

For more, check out @sophiespoonless on TikTok & IG

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Clinical definitions will never capture the full weight of living with these conditions.

But we can.

Chronically Me.