What does a person with an invisible disability look like?

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?

Or if you wake up with another random raw patch on your leg that feels like all the skin has been removed, and even your pants rubbing lightly across it is excruciating.

What if when you got a simple virus, your nerves became affected instead, causing burning, electric-shock-like pain. Actually, what if the risk of any attack on your immune system – any stress/injury – resulted in any or all of these nerve issues resurfacing?

And what if the only treatment (no cure) means fortnightly you’re admitted to hospital to be hooked up to a drip for your dose of “good-blood”. And this treatment will likely continue for the rest of your life?  

What if the name of this illness was so obscure that many of your doctors have to ask what you have again? And even then they have to Google it?

Clearly, given the choice between visible or invisible disability, we’d all say “No thanks” to both. But one version does at least remove the dazed/confused looks received when you do get a chance to explain/vent/offload share your story.

To cope, you might go to great lengths to at least try to look well when you feel everything but. ‘Cos if you didn’t you’d feel a whole lot worse. You don’t want a daily reminder – an image staring back at you that convinces you how crook you really are – do you?

As Robert Hoge said, despite his own physicality, he still feels quite vain at times and cares about how he looks.  It’s all about controlling the things you can…

And what you do still have some control over is how you look on the outside.

And you’ve exercised that control for most of your young/adult life because it somehow makes you feel a little stronger.  It allows you to feel normal – like you still somehow fit in when the reality is really very different. You really don’t like your “reality”. You don’t want to hear ”Oh gosh, you look tired/dreadful”. Or “Just go and have a good feed – you’re way too thin”.

The hardest part is… 

Guilt. Because clearly you know only too well how lucky you are!  I mean, goodness me…you’re not terminal!  You don’t have months to live. You have all your limbs. You haven’t lost a child. No one has been abused or murdered, so stop complaining woman! No one likes a wet blanket.  My God, there are so many others worse off than you. They still manage to hold down 9-5 jobs, drive etc. I mean, just shut UP!  You LOOK FINE!

And the burden on your friends and family… 

Most of the time, others say nothing; in fact sometimes you actually wonder if they have a clue about what you’re going through each day? There have been times when you’ve bolted from the room then appeared 10 minutes later looking ashen-faced and they haven’t seemed to register what’s just occurred. Friends are probably just being polite (perhaps even a tad uncomfortable) to let on. You get that.  So you smile and continue on “situation normal”.

Then there are times when you’re brave enough (or just too sick) to not “act fine” and you go right ahead and tell them the truth about how you are feeling. You watch eyes glaze over as they try to glance at the TV or barely even look up from their smart phone.

Sure, they will admit that sometimes they do get a bit complacent. They figure “you must be so used to it by now”. And there’s also an element of helplessness and perhaps denial; “Maybe if we just ignore it, it may go away?” Or at least feel less real?

Or what about when your husband (who’s taken such good care of you for so long) goes to a mate’s to watch a game. You’re running a temp which you know means you’re really in for it. You encourage him to go – gosh, he deserves some time away from all this. Reluctantly, he goes, but (bless him) announces he has to leave early because “the wife is crook”. One mate rolls his eyes “Oh just put her on bloody drip, will you?”

The over-sensitive/irrational you thinks “Clearly all our friends are over me too”. The next morning when you are back in hospital (on said drip) that mate has no idea that you know what was said the night before. But something inside you will always wonder just how much you should reveal/keep hidden – and to whom you can really offload.

And it’s the very fear of that reaction… 

…that makes you put on your best brave face and NOT tell anyone how crook you really feel 90% of the time. It’s also why invisible chronic illnesses can make you feel so damn lonely.

Much like mental illness – which is also generally “unseen” and therefore just as isolating – living with an invisible chronic illness takes its toll. Thankfully, much is being done to improve awareness and support for those with mental illness. But the burden you feel you are on your loved ones can still really eat you up. Especially when you’d really rather just be eating!

When others can see at a glance that you have challenges, they immediately admire your strength and often support, encourage or even applaud you for your courage and determination. They may see you as inspirational for simply getting up each day and continuing to work or study, care for your family, or to attend social engagements instead of hiding away for fear of being labelled different.

As Robert Hoge writes: ”There’s a power in the corridors of the ugly club. It arises from knowing the defining characteristic that grants you entry to the club, recognising the truth of it and realising hope can spring from that knowing. If this story is about anything, it is about that.”

But the defining characteristics that give you entry into the “rare chronic illness with no known cure club” are not quite so visible. The pain usually gets covered up and buried deeper and you rarely get to meet the other members of your club.

Similar stories, but very different. Cest la vie…

Alison Triffett is a personal stylist, a style workshop facilitator and a keynote speaker. She’s also the founder and director of Alison Triffett – Style Counsel. A version of this post was originally published on Alison’s website and has been republished with full permissions.