Did you happen to see “In Your Face” on Australian Story recently?
It was the story of Robert Hoge, 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.
If you have a more high-profile condition or disease like say, Cancer, MS, Arthritis etc, people get it. They get you. They understand. They don’t question it if you can’t keep an appointment because you’re feeling crook. Some will cook meals knowing how much effort it can be to just complete regular daily tasks during treatment or a relapse. Hell, some will even fund-raise in an effort to 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 remains essentially invisible?
What if you had a condition resembling a permanent case of (a cross between) gastroenteritis and morning sickness; MS & chronic fatigue syndrome? All rolled into one, and all with no cure?
So what if a large portion of your gastrointestinal tract was removed and what now remained was essentially paralysed and dysfunctional?
What if you woke up at 4am with severe pain and innumerable trips to the loo; and even at 4pm you’re still racing? Or throwing up food that was eaten 8 hours earlier and it 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 they are essentially also partially numb. And when they do warm up, they actually burn. And what if your BP gets so low that you sometimes black out – but at the very least just feel like you might? And or if there were days when your vision was so blurry you couldn’t see more than a few 100 feet ahead, yet hours later without warning, you can see clearly again?
Or if you wake up to find that there’s a 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 came down with a simple virus, the nerves in your leg or arms or back became affected instead. Or your face? Giving you burning or lancing, electric-shock-like pain on the side of your head for hours or days? Actually, what if the risk of any attack on your immune system – any stress/assault/injury – resulted in any or all of these nerve issues resurfacing?
What if the name of what all this is, was so long and obscure that even your doctor/specialists have to ask you what you have again? And when you tell them, even they have to Google it?
And what if the only treatment on offer (which isn’t a cure, but may – just may – slow down the progression of the disease, or lessen the damage of each new attack) means you’re admitted to hospital once a fortnight and probably for the rest of your life. Hooked up to a drip for your dose of “good-blood” (the side effects which don’t make you feel too flash for days).
Is any of the above easier than having an obvious, physical disfigurement? Let’s face it. Given the choice, we’d all say no to either one – ‘cos neither are very pleasant are they? But one version does at least remove the dazed/confused looks received when you do get a chance to
offload, debrief, download, share your story. 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.
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 in the mirror that just convinces you how crook your body really is – do you? You know you have no real control over what your body is doing (or not doing); how it lets you down when all you want to do is just drive your car or push a shopping trolley, lift a bag, or move your feet without pain.
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 can still somehow fit in when the reality is really very different. You really don’t like your “reality” – therefore you also don’t want to hear “Oh gosh, you look tired/dreadful”. And rest assured, on a really bad day without a bit of extra effort with your hair and makeup, you would surely frighten small children!
The hardest part is…
Isolation and 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 with far worse disabilities and challenges than yours. Wake up to yourself woman! They still manage to hold down 9-5 jobs, and drive, or walk, or eat, etc etc. I mean, just shut UP!
You know you’ve got it better than so many others. So how then can you expect anyone to possibly understand the loneliness you feel being trapped in your pathetic little body? You LOOK FINE! You’ve also perfected the art of ACTING FINE (most of the time anyway) so what on earth are you going on about?
Most of the time, they 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 run (actually, make that bolted!) to the loo, then appeared 10 minutes later looking ashen-faced and weak (but still smiling if you can) and they haven’t even seemed to register what’s just happened. Friends are probably just too polite (perhaps even a tad uncomfortable) to ask if you’re OK. You get that. So you smile and continue on “situation normal”.
The burden on your friends and family…
There are times when you’re brave enough (or just too sick) to not “act fine” and you go right on ahead and tell them the truth about your crap day. You watch eyes glaze over as they try to glance at the TV or barely even look up from their smart phone.
Sure, they all admit that sometimes they do get a bit complacent. They just 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 temperature which you know means you’re really in for it. You’re pretty sick, but you encourage him to go because you feel like he deserves some time away from the wet-blanket that you are. Reluctantly, he goes, but (bless him) announces he has to leave early because “the wife is crook”. One of the mates rolls his eyes saying “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 actually are back in hospital on said drip, that mate has no idea that you are aware of what was said the night before. But something inside you will always wonder just how much you should reveal/keep hidden from now on – and to whom you can really talk to.
And it’s the very fear of that reaction…
…that makes you put on your best brave face and try to 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 really does take 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 yourself 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 other members of your club. Similar stories, but very different.
Cest la vie…