Ausnew Home Care | I used to hide my symptoms and disability from

I used to hide my symptoms and disability from others. Now I want to be 100 per cent 'seen'

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Today, to put it bluntly, I lost the plot. Chucked a huge wobbly. I screamed, swore, cursed just about everyone in the world, was mean to my husband (the one part I'm genuinely ashamed of). I threw things. 

Why? Because I was in pain, frustrated, and could feel myself fading like Marty McFly in Back to the Future.

Welcome to one of the bad days of living with disability or chronic illness. Despite what some might think, you don't automatically pick up traits like bravery and being an inspiration with your disability shopping docket. Being in pain is hard. Being dependent on others is, for me, 100 times harder. 

If I didn't occasionally drop my bundle, I sometimes feel like I'd disappear — that I'd become the Invisible Woman. As my disabilities and illnesses mount, I often feel like the more I see of them, the less I see of me. 

And so behaving totally dreadfully from time to time is a way of not losing who I am to the conditions I have. It's a way of staying visible.

A woman with blonde hair and sunglasses poses for a photo in a boat harbour with a man in a cap
At the top of the list of things that help me most as a disabled adult is my husband.(Supplied: Kate Stone Matheson)

Getting the diagnosis

Twenty years ago, I went from being someone without disabilities to someone with several. Back then, every week I worked long hours, played several games of netball and nursed a hangover or two. 

But it slowly became clear that something was wrong. I started having trouble with my handwriting, experienced terrifying cramping in my face, back and feet. I began slurring words. Colleagues told me I appeared uninterested in work meetings, that I was tuned out — was I even listening?

About five years after my symptoms arrived, at age 34, I was diagnosed with Young Onset Parkinson's Disease. Of the 100,000 Australians living with Parkinson's — a progressive neurological condition that causes tremor, slowness of movement and rigidity, amongst other symptoms — one in five are aged under 50

At first, I was relieved to get a definitive answer to what was causing the chaos in my body and brain. And I coped for longer than I thought I might. My incurable disease was a so-called invisible illness; nobody who saw me on a "good day" even realised I had it. Telling people only made them uncomfortable anyway, so I often didn't.

Making a painful choice

But after a while — after cancelling plans on a growing number of "not so good" days — I realised I needed to start telling others what was happening to me. 

Invariably the response I'd get when revealing my condition was: "But you look so normal!" 

A woman in a wheelchair wearing a beanie and tracksuit poses for a photo by the sea
I'm now in a wheelchair and use a walker to move around the house.(Supplied: Kate Stone Matheson)

For me, this is at the top of the list of things not to say to someone with chronic illness or disability. It feels insulting, and reveals a striking lack of awareness of what normal is. It says, "You look like someone without physical or mental health issues, therefore nothing is wrong, what are you complaining about?" 

I had to make a choice: in order for me to be seen, my disabilities had to disappear. For years I kept my full self hidden under the pretence I was shielding others from discomfort. But I've since realised being me is not negotiable — that I want and deserve to be 100 per cent seen. 

So, I began educating myself and others about what it means to live with disabilities, chronic pain and incurable illness.

Along the way I've had to deal with multiple health issues and constraints, including Rheumatoid Arthritis and very recently, Neuromyelitis Optica. I'm now in a wheelchair. I use a walker inside the house. Earlier this year I fell and fractured my eye socket; I've had to learn what it's like to have someone else dress me. 

But being open about those challenges — as well as the things that help me most as a disabled adult — has been important for me and those around me.

Keeping my jet full of fuel and kindness

As for the things that help? Foremost, it's my husband, every day. My two cats. Our close, will-drop-everything-for-us friends. Our families. People who have similar conditions to mine, and who are willing to laugh at themselves — and at me. 

Kindness. From strangers opening doors for me, to a restaurant where I've made a booking admitting they're not wheelchair accessible, but working hard to get me a drink and make me comfortable anyway. 

Everyone who speaks to me — not to my wheelchair, and not my husband because he's the one pushing it. Anyone who is willing to educate themselves about what it means to live with disabilities and chronic illness, who doesn't ask within five minutes of meeting me, "So what's wrong with you?" 

For three decades I had the incredible privilege of having a body and brain that did exactly what I told them. For the last 20 years, I've had the even bigger privilege of help and support from others who've never even been able to run down a beach faster, faster, faster. Kind and compassionate people who have helped educate me and open my eyes to who I am. 

They've stopped me fading. 

So, to those with disabilities, please keep leaning out, being you, no matter how frustrating it is - or how often those without disabilities don't bother to lean in. Refuse to be reduced to a shadow. Keep your invisible jet full of fuel, your megaphone charged, and be ready for take-off as soon as you encounter someone without a disability refusing to see someone who has one.

Invisible jet? Hell yes, with a heavy side of irony. Invisible person? Hell no. 

See me. Because I'm willing to see you. 

Kate Stone Matheson is a writer and mental health advocate. She is an ambassador for Shake It Up and you can find her at She lives in Melbourne with her husband and two rescue cats. The ABC is partnering with International Day of People with Disability to celebrate the 4.4 million Australians with disability.


Source: ABC

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