The invisibility of an invisible illness

Living with an invisible disability can be incredibly difficult. For Inform, Niamh Sullivan explores her experience and offers some tips that have helped her navigate her the world.

Around this time two years ago I sat in the driver’s seat of my car on a perfect Gold Coast day unable to actually see out the windscreen through the floods of tears that streamed down my cheeks.

It was a morning so familiar that I could have lived through it 100 times before, yet it was as unfamiliar as being flung into a parallel universe. I was in my own car, I was wearing my favourite beach dress, with my new bikini underneath and there was an unread message on my phone from my Mum which read ‘Drive safely, Sweetie xx’.

But unlike the hundreds of cars flying past my window, I didn’t know where I was driving, when I was meant to be there, when I’d left, or who I was even meeting. As I tried to slow the tears and scroll back through my phone for clues, I couldn’t help but notice just how invisible I felt sitting on the side of a very busy motorway.

I have a brain injury which affects my short-term memory. I try to describe it as being like that moment when you first wake up from a really vivid dream. At first you can remember all the details but the more you try to think about it, or when you try to tell someone else about it, you can slowly feel it slipping away.
Eventually, you can’t remember if you dreamt at all. I guess it’s like living
on the set of the movie 50 First Dates.

 

Invisible collateral

My Dory-like mentality is invisible collateral from my all too visible chemotherapy treatment. Unlike my cancer diagnosis, which boldly announced itself the moment my frail gait and shiny scalp was wheeled into a room, my memory condition is far less obvious.

Since regaining consciousness from an induced coma just before my 12th birthday, I’ve hidden my memory condition far better than my sister hides the chocolate wrappers under her bed. I am an ocean-loving and solar-powered TV reporter. I start every morning with a gym class, a beach swim and an almond milk flat white. I do my make-up, wear high heels and ask politicians hairy questions on TV during the week. I play team sports after work, go surfing on the weekends and spend every second of my free time planning my next backpacking adventure.

Hidden behind my shiny front, there is the streams of tears when I misplaced my passport on the first day of a one-month road-trip through Europe. The confusion when my friend didn’t arrive at his year 12 final exam because I forgot I was his only lift to school. Or the number of excuses I have pre-prepared to avoid social drinking with my boyfriend’s mates because my memory gives out completely after one red wine.

I recognise that the invisible nature of my chronic condition shields me from a world of discrimination, but it also conceals me from potential support. Being ill while still ‘looking fine’ is something that is laced with nuance. It can be difficult to explain, confusing and embarrassing. My ‘forgetfulness’ is often put down to arrogance or laziness, making me feel more invisible than my illness ever will be.

 

Building a toolbox

After smiling my way through thousands of conversations when I’ve completely forgotten the topic of discussion, I’ve built a toolbox to make me feel a little less invisible. There are only three steps because three is easier to remember than ten.

Honesty isn’t just for 5-year-olds

Mental fog and fatigue are an obstacle for everyone, not just someone with short-term memory loss. Being honest and open about my condition gives me the confidence to ask for support with I need it, it helps me prioritise my health and it means I have a team of people on standby to remind me where I left my car keys.

People who mind, don’t matter

After years of trying to hide my memory condition behind a wall of blonde jokes, I’ve learnt:

1. These jokes don’t cut it because I’m a brunette
2. The only people uncomfortable with my honesty aren’t worth losing sleep over.

A day without laughter is a day wasted

It’s how my Dad comforted me when I was 11-years-old in hospital, and it’s become my family motto. If I don’t laugh about the time my boyfriend wasn’t let on a plane because I forgot to book his return ticket, I’ll probably cry, and as he likes to remind me, I don’t have a pretty crying face.