I’m disabled.
But for a long time, I didn’t realise it.
You see, despite the fact that I’ve lived with mental illness for as long as I can remember, and chronic pain and fatigue for the past four years, I didn’t realise they were disabilities.
But even without realising, they still impacted my life significantly. With chronic pain, I am always in pain. While my pain levels do vary, I often experience everything from bone pain, nerve pain, severe body aches where my body literally feels like I’ve been beaten, as well as severe abdominal pain that feels like barbed wire and acid lacing my insides.
On top of this, I also experience chronic fatigue — and it’s so much more than just being a little bit tired. It’s that kind of tired where you can barely function — when even thinking, or keeping your eyelids open feels like an Olympic effort, and no amount of sleep or vitamins can help.
Then there’s a whole host of other disabling symptoms like near-constant brain fog, nausea, light sensitivity, and pins and needles in my limbs that become so bad that I can’t feel my leg — which obviously makes it very hard to walk. And that’s not even all the symptoms I experience.
And because of my various conditions, everything in my life has changed — my career, my relationships, my social life, and what I can physically do. It’s a pretty hard pill to swallow that life has changed, possibly forever — especially when your 20s are supposed to be one of the best decades of your life.
I think it took me a long time to realise I am disabled because society as a whole doesn’t really talk about disability. Well, disabled people do — but despite the fact that one in five Australians has a disability, we aren’t represented (at least, not well). Not in media. Not in journalism. Not in decision-making. And not in daily life. I didn’t even know chronic pain existed before I began experiencing it — and I certainly didn’t realise it could impact young people.
That’s because disability is often something that’s swept under the carpet. And even with so many incredible advocates challenging the narrative, it’s still seen as a negative thing — for reasons I don’t understand.
Because to me, disability is beautiful. It’s diverse — there are so many different kinds of disabilities, including physical, mental, sensory, neurological and more.
But it did still take me a while to wrap my head around the fact that I could be disabled.
Even when I was applying for programs specifically for disabled people, and even after being accepted, my brain still felt like an imposter. Like I’d somehow duped my way into a space that wasn’t meant for me. I’d use phrases to mentally distance myself — not because I was ashamed, but because I didn’t feel like I was allowed to identify as disabled. I’d diminish my symptoms and how they impact me, saying things like “Well, I have a mental illness, so technically I am disabled” as if my chronic pain didn’t count.
As if I didn’t count.
A lot of it was because I was worried about what others would think. Even with a diagnosis, I still am. I feared fellow disabled people would become angry, and tell me I was moving into a space I didn’t belong, or that I wasn’t “disabled enough” to feel how I was feeling. I feared non-disabled people wouldn’t understand — and for the most part, they don’t.
“Oh, don’t talk about yourself like that,” one specialist told me as if disability was a bad thing.
“Do you really want to go down that path?” another asked as if I had a choice in how my body is impacted by my conditions.
Whether I want to accept it or not, I am disabled. And that’s not a bad thing. And to be perfectly honest… it’s been a really good thing for me. Because before, it’s like I was running a race — but everyone around me could do it so much faster and easier. Identifying as disabled recognises that my goal posts have changed — and after years of struggling alone, it’s a massive comfort.
Even on my good days, seemingly small tasks like cleaning the kitchen, washing and brushing my hair, feeding the cat, or even getting groceries can completely wipe me out. Yesterday, I was puffed out and utterly exhausted just from walking from one room to another.
And because my disabilities are dynamic (meaning my symptoms fluctuate), people don’t realise how bad it can get: because I still look like I’m doing and achieving things. And I am — but that doesn’t mean that it isn’t hard; that it isn’t a constant struggle.
It was only when I started to connect with other disabled people online that I realised… I think I do belong. We may all have different conditions and different experiences, but we all experience a lot of the same systematic barriers, derogatory attitudes, and exclusion — not to mention internalised ableism.
We have all been impacted by the medical model of disability, which views us as “abnormal”. It views disability as something tragic, or to be pitied. So, when I call myself “disabled”, that’s what non-disabled people see.
But it’s not true.
I don’t see my conditions as tragic. Sure, I have a complex relationship with them, and I often have a lot of grief about what I’ve lost — and what I didn’t even realise I was battling all this time.
But it’s also been a gift — because now, my eyes are open.
Now, I can speak out and advocate for change, like so many other incredible disabled advocates.
Best of all, I can help others going through the same thing to know they aren’t alone.
It’s taken me decades of struggle, four surgeries, countless tests, scans and specialists, and years of begging doctors to listen. It’s taken years of unlearning ableism and learning about myself.
But I finally got here.
Because I am disabled.
And it feels like home.
Zoe Simmons is an award-winning journalist, copywriter and editor who writes to make a difference in the world. She’s a mental health and chronic pain advocate, and is currently looking to publish her first book on her town’s survival in the Black Summer Bushfires. Follow her on Instagram, Twitter, Facebook or LinkedIn for more.
Read more stories from The Latch and subscribe to our email newsletter.