But You Don’t Look Sick!

But You Don’t Look Sick!

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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.

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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…

2013-10-02_14-46-46Isolation 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…

2013-10-03_11-06-10There are times when you’re crying in bed, doubled over in pain in the wee hours of the night; wondering if you got up and collapsed on the bathroom floor right now, when would anyone would find you?

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…

 

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13 Responses to But You Don’t Look Sick!

  1. That was brilliantly written.
    I could totally feel your emotions when you were writing that!
    You are an amazing woman and inspire me.

    Big hugs

    Sam xxx

  2. Oh Al, the tears are running and my heart is breaking for you. Everyone, including me, gets so caught up in our own lives and fuss about our so called problems and dramas, we have no idea what it must be like for you day in and day out. You’re right – you always do look so beautiful, and I have envied you in the past as I battle my weight, my frizzy hair and other stupid, superficial problems. Sometimes I do see the pain and your tiredness of it all in your beautiful eyes, and I also see a brave soul and someone who genuinely is loving and caring to all, but also needs that unconditional love to be reciprocated. What can we do… we would all want to help because you are so lovely. What would be the most valuable thing to you… is it just being there to communicate and not judge, assisting you to achieve what to us is mundane but to you are challenges, to sit with you while you do whatever you’ve gotta do whether its pleasant or not? What is it that we can give to you…. you have given to us the reiteration of what it is to be understanding, accepting, willing and considerate. Give me the tip, and I will be there. xxx

    • Hi Karen,

      I feel awful saying this, but I’m not sure which Karen this is (I know many!). Thanks so much for your very kind words though… Just knowing that there are people who get it/me is a huge help in itself and makes anyone going through anything feel less alone. xxx

  3. Al, I am so sorry that this is your reality. You’re right in what you write – because you make such an effort to look good, sometimes we (i!) don’t understand / appreciate how you’re really feeling. I wish there was something we could go to make it better for you.

    • Now this is odd. I’m replying to an anonymous writer but the person is coming up as stylecounsel? How’d that happen? I didn’t write it to myself, obviously? To whomever this is who wrote these lovely words, I thank you from the bottom of my heart. If you can let me know who you are, even better! Then I can reply properly xxx

  4. Hello
    I saw your link via Bec Sparrow. I have a visible chronic illness – a rare severe skin condition called Ichthyosis. It might look like it only affects me cosmetically, but it is much more complicated than a bit of eczema on the hands. The skin affects our whole body – temperature, hydration, metabolism, infection control, digestive system. While I look the same most days – red face, not so red body – my skin is often very sore. I work full time, am a freelance writer and speaker, and really live life to the full. But the reality is, and what people don’t see even though my condition is visible, is the way it can make me feel. Your skin renews once every 28 days – mine renews once a day. I get tired, find it hard to move and am very susceptible to infections. My tummy can get sore, my eyes are sensitive to light and I itch like crazy. I constantly get stared at and asked why I look the way I do. I don’t think, as you said, people understand every visible disability or chronic illness. Having said that, the people I’ve met and the opportunities I’ve had because of my Ichthyosis have been amazing.

    Thank you for writing this – I hope you’re doing ok.

    I have a guest post by Robert Hoge on my blog tomorrow – I guess I’m part of the ugly club too.

    • Hi Carly

      You don’t know this, but I actually follow your blogs myself and have had much inspiration from your journey. Your strength and courage is unbelievable.

      I hear you too, about the invisibility of the pain that accompanies your condition – something that many wouldn’t think about. And that it’s hard for others to really understand the journeys of those with either visible or invisible disabilities.

      I get what you (and Robert) mean when you refer to the ugly club, but I think you are in the beautiful people’s club. Those with no empathy – those who don’t care about or even try to understand anyone else’s struggles – they’re the members of the ugly club. Not you guys!

      I’ll keep my eye out for Robert’s post tomorrow…thanks so much for taking the time to reply to me here. xxxx

  5. Hi again

    This line got me: “Sure, they all admit that sometimes they do get a bit complacent. They just figure “you must be so used to it by now””

    I think that a lot of people assume because an illness is a life long or long term thing, you must be used to it, that your coping mechanisms are developed and you’ll just get on with it.

    I see this a little in the support given to those who suddenly fall ill compared to those who have long term chronic conditions. I’ve known people in hospital not even receive a call or card from their workplace when they’re in hospital for a routine exacerbation of their illness, or even mental illness, but someone gets cancer or has an accident, and there’s flowers and visitors galore.

    • Oh how true Carly! You’ve hit the nail on the head. After in excess of 30 hospital admissions over recent years, there’s rarely a flower. Visitors are few too, but the ones who do make you feel like you’ve won the lottery. Amazing how seemingly small things can mean so much when this becomes your “normality” huh?!

      Thanks for sharing your thoughts…love your work! xxx

  6. I’m another of the “rare chronic illness with no known cure club”. I found myself nodding along with each line as it is essentially the path I’ve been treading for the last 7 yrs. I do think ‘Invisible’ is the key word. Not only is the it the lack of the ‘sick’ look (whatever that is), but over time when you become chronic you become invisible to those around you “oh she’s in hospital again”, “she’s having another bad day”. It’s the invisibility in the medical system when you have something rare, which has few specialists, few research dollars, little in the way of PR. A system that is set up for acute illness not chronic. Invisibility in that we hide it ourselves so as to not always be ‘the sick girl’. I could go on but I know you understand it all too well. So I’ll just say thank you for writing.

    I write a lot about invisibility on my blog and it seems to be such a hurdle for so many to getting diagnosis and treatment, and just general understanding. I used to work in health, neurology to be exact, and despite knowing the system, still had to fight for recognition and diagnosis, because I was a young woman who looked well. As a result, raising awareness for those of us in the Invisible camp has become a bit of a personal quest.

    And I totally get the lack of visitors and flowers in hospital. After all this time the only people who visit tend to be my husband and kids and some of the other patients I’ve become friends with over the past few years.

    • I feel quite ashamed. I am replying to such an honest, heartfelt and personal message some 3 years too late! Will you ever think of me the same? Probably not. I have just been sent a reminder of my post by Facebook. I have just read my post, and it saddens me to think that I still feel exactly the same (was in hospital again today after my regular fortnight infusion). But more so, I feel very sad that I missed your reply to my original post. I pride myself on always replying to people who take the time to contact me; to share their story; to just even say “hi”. I know how much that contact makes my day. I cannot believe I didn’t see your reply until now. And all I can say is one big “sorry”! I really hope your situation has improved somewhat since you first took the time to reply to my post? And if it hasn’t, again, I’m sorry. I promise if you write to me again I WILL see it and I will reply… 🙁 PS Just noticed that there may be an issue with my sign-in and that may explain why this slipped past my radar. Either way, if I’ve already replied (which reading this again makes me think I might have?) sorry for boring you here again. If I haven’t, I’m also more than sorry 🙁 xx

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