As kids, we were often asked what our superpower would be if we
could choose. Some said the ability to fly. Others yearned to go
really, really fast. And there was always that annoying smart kid
who’d worked out how to cheat being physically active by saying
“teleportation”.Invisibility was usually the goal of the slightly sinister. You’d get out
of doing stuff like chores because you could vanish until they were
done; you could sneak up behind people and scare the crap out of
them, or listen in on their conversations (only to use your newfound
knowledge against them).
I’m kind of invisible. It’s sort of a big deal, but not in the cool way
I thought it would be as a kid. And it’s not really a superpower – really,
it’s just a bit shit. You see, I’m not entirely invisible, but my disability is.
My pelvis is so cooked from severe endometriosis and all the
damage it’s done to my nerve endings that I have chronic pelvic
pain. It’s unrelenting, and it’s hidden from the world. I can’t work
full-time; I get tired easily. While I’m lucky to be well enough to live
by myself, from time to time I need help doing things like cooking
and cleaning. In truth, it’s less an invisibility cloak, and more
endless internal screaming.
When your ailment isn’t immediately apparent, it’s hard to make
sure people don’t bump into you on a busy street, or knock you over
in crowds. Explaining why you have to sit down at gigs is tedious and
tricky – and makes you seem uncomfortably nanna-like – so, oftenyou just don’t go. You’ll probably spend a lot of time being anxious
about whether you’ll get a seat on public transport, too. You’re not
a car, so you can’t hang a parking pass around your neck (well,
I guess you could, but as an accessory it’s hard to pull off). You could
wrap yourself up in ‘FRAGILE’ packing tape, I suppose, but who ever
takes notice of that stuff, anyway?Recently, I’ve started using a walking stick on flare-up days as
a signifier that I need a seat. It’s either that or pretending to be
pregnant, and that scam tends to fail when you catch the tram at
the same time every day and people recognise you and your belly,
which suspiciously stays the same size. (In an extra boost to my
self-esteem, I’m borrowing the walking stick from my mum. I’m
basically a 30-something retiree, complete with Keith Richards
levels of prescription drugs.)Yep, it’s difficult to explain how serious your ailment is when
other folks can’t see it with their very own eyes. If I’ve learnt one
thing, it’s this: humans are extremely literal creatures. Employers
question why you need to take so much time off when “You don’t
look sick” (presumably they require actual stomach bile as
evidence); potential love interests see you as flaky when you need
to keep cancelling plans (“But the last time I saw you you seemed
fine”); and friends start to think you have nothing to talk about
these days aside from your poor health.The childhood fantasy of becoming invisible was a lot cheaper than
this kind of obscured life, too. It was more about being able to steal
lollies from the corner store without consequence; less having the
receptionist at the closest GP clinic know you on a first-name basis,
in the same way other people have a barista who knows their coffee
order by heart.
Sometimes it’s hard not to wish I could take off the invisibility
cloak and have people see the old lady hidden not-so-deep inside,
but these are the cards I’ve been dealt. Disabilities come in all
shapes and sizes, and just because mine is invisible, doesn’t mean
it’s any less real.out of sight, out of mind
FOR KYLIE MASLEN, INVISIBILITY ISN’T
ALL IT’S CRACKED UP TO BE.
rant