We’re in this together on International Day of People With Disability

For International Day of People With Disability, Niamh Sullivan writes about navigating the confusing waters of having a disability.

When I left hospital for the first time after my initial cancer diagnosis, my psychologist asked me how I was planning on adjusting to my ‘new normal’.

Confusion plagued me as I tried to make sense of what she was asking.

Unable to sleep that night, I sat in my bathroom and looked at myself in the mirror. I was still normal me – just a little paler, much skinnier and with less hair than I was used to. Sure, I looked a little different, but now that I was home, wouldn’t it all go back to normal?

Three months later, I sat in that same bathroom looking at myself and I cried. I cried and cried and cried. Because my psychologist was right. She was so right.

I came home from hospital with manila folder that outlined the next two years of my life. A neatly typed file that listed my medications, surgeries, expected side effects and emergency contacts. It was organised, neat and detailed – just like everything else in my life.  

And like every other to-do list that I’d written up until that point, all I needed to do was tick everything off the list and then I’d be free to move onto the next thing. This wasn’t a life-altering, unravelling and completely unpredictable experience, it was just a slight hiccup on my road to starting high school, right?

But here’s the thing I have learnt – a new diagnosis is so much more than that. No serious illness, chronic disease or disability can be put in a box and tied up with a bow. These conditions are rarely black and white. Instead, they’re grey, red, pink, yellow – any colour you deem it to be.

One folder is not enough

My disability was blue. A primary colour that formed the base of almost everything else in my life from here on in.

It was watching my closest friends hit the key milestones we were meant to celebrate together – starting high school, new jobs and first loves.  It was the emotional and financial stress placed on my family by my mounting health bills, overwhelming sense of uncertainty and late-night dashes to the emergency department. It was the loneliness that come from not having anyone to open up to, because my friends simply didn’t get it.

Unlike some, I wasn’t born with my disability. It wasn’t something that I learnt about myself at the same age I learnt how to spell my own name. Instead, I spent the first half of my childhood building an identity that was taken from me overnight.

I was no longer the in-control, ‘I’ve got this’ girl that my family and friends knew me as. I was a helpless, anxious, terrified and disconnected version of myself that I didn’t even recognise. And that manila folder that I clung to for hope on my first day out of hospital? We’ll I’ve learnt that one folder is most definitely not enough.

Disabilities do not have boundaries

More than a decade later, I’m also learning that many diagnoses don’t come in isolation. The first is often the drop that triggers a waterfall of other complications, long-term effects and secondary concerns. That’s because disabilities do not have boundaries, nor do they compromise or discriminate.

And that sense of uncertainty? It’s overwhelming. It’s stressful. It can be incredibly isolating.

But it’s moments like International Day of People with Disability that make me realise that it’s okay. I’m not the only one navigating through the confusing waters of having a disability. It’s right there in the name – International. There are people from every corner of the globe that feel, look or act differently to the people around them. And that’s okay

Whether you’ve had a lifetime to adjust to it or your world has come undone overnight, you’re not alone in your ‘new normal’. We’re in this together.

 

Ready to read more? Try these Inform links:

Robbie Streeting’s Show The World focused on ability

How to incorporate consumables into your NDIS plan

How I Roll lighting a fire for wheelchair sports