By ALISON TRIFFET
Did you happen to see “In Your Face” on Australian Story recently?
It was the story of Robert Hodge, a man who was born with a tumor where his nose should be and with severely deformed legs.
Throughout the story (which you can read more about here) Robert talks about living a life that’s defined by his looks.
“It’s hard to know how much different I am from normal people,” Robert explained.
“There have been physical challenges simply getting through life. And you know, there have been reactions to my face and that sort of thing. It’s been very defining,” he said.
It got me thinking about the many faces of disability. And how in some ways, I actually envy those with visible disabilities. Their challenges can’t be ignored – they’re “in your face” – and this can sometimes make a difficult journey a little easier.
There are many with no visible manifestation of their disabilities. In fact, they look so well on the outside they even feel nervous about using their Disabled Parking Permit in case someone (else) abuses them (again). They face different challenges and prejudices, which, on some levels, can make their journey harder.
If you have a visible disability – even a broken leg or an arm in a sling – people get it. They understand. You don’t have to explain. Others may offer to help lift your bags without you having to ask. And they certainly don’t question your right to use your Parking Permit.
With the more high-profile conditions or diseases – Cancer, MS, for example – people get it. They get you. They understand. Some will cook meals for you; other will even raise funds to help find a cure!
But what if you have a more obscure illness that the world can’t see…
One that takes its toll every single night and day but essentially remains invisible?
What if the condition resembled a permanent case of (a cross between) gastroenteritis and morning sickness; MS & chronic fatigue syndrome, all rolled into one, and with no cure?
What if a large portion of your gastrointestinal tract was removed and what remained was essentially paralysed and dysfunctional? And because you struggle to keep weight on, many assume that lack of weight just has to be an eating disorder?
What if you woke up most days around 4am in severe pain followed by innumerable trips to the loo; and at 4pm you were still racing? Or throwing up the food that was eaten eight hours prior yet still looks/tastes like it did when it was first ingested?
What if your hands and feet feel like ice and hurt like hell, yet are essentially also partially numb. And when they do warm up, they burn?
And what if your BP gets so low that you black out. And some days your vision was so blurry you couldn’t see more than a few 100 feet ahead?