Thursday, 19 March 2015

The Disaster Crohn

Yet another strange aside of having a chronic illness, (I’d mention them all but my fingers would turn to stumps from excessive typing), is the expectation from outsiders that we should 'perform' in a certain way. That we should act more like the ‘sick’ people we are.
Seeing is believing after all, and some people just can’t seem to get their heads around an invisible illness.
They can comprehend Heaven and Hell, and that God (James Spader) exists, but they can’t quite seem to grasp that we have a disease that mainly exists under the cover of our skin.

OK so these people know we can’t possibly walk around in hospital gowns 24/7 for their benefit, because that would be both inappropriate in high powered business meetings, and THEFT; but they’d still prefer if we could make life a little easier for them. Perhaps a sandwich-board with “YES, I’M STILL SICK!” emblazoned on it? Or a tattoo we could get across or foreheads with a detailed artwork conveying our burning loins?

In terms of our outward persona, we never seem to get it quite right for them. 
Too happy? You can't be being honest about your symptoms!
Too sad? Cheer up for christsakes!
Too quiet? Talk more!
Too loud? Attention seeker!
We seem to morph into this strange re-enactment of Goldilocks when we are around these doubters, whereby we can never find the right porridge. Then everything turns red. Well the toilet bowl anyway. Too graphic? Not sure where I'm going with this analogy but stick with me.

So because our illness is invisible we are yet again, in mainstream society, expected to behave as patients. Or people's preconceptions about what a 'patient' or a ‘person with a disability’ is anyway. If I had a broken leg and was hobbling about on crutches and wearing a massive cast I would still acceptably be permitted to laugh and joke like a normal human being as you scrawled 'FRED WOZ ERE 2015' onto my leg in permanent marker. Wrong leg Fred, the one with the cast you idiot. But because you can’t see my disability it can’t possibly exist can it? And if it REALLY does, why are you laughing? You’re ILL aren’t you?

As you can't see the ulcers on our intestines, colon, mouths etc, the internal scarring, the swelling, the bleeding, amongst countless other grisly sights, it’s somehow allowable to assume all should be well. Even if we remind you verbally, it still seems beyond comprehension for some of you.
I've often fallen into a strange place whereby I feel almost guilty for displaying happiness. If I show improvement in my health, outwardly, I then have to start from scratch again when things turn the other way. Produce the 'I'm still sick' card, which is entirely depressing, and can feel like attention seeking when really we’re just over the moon that we don’t feel like The World’s Strongest Man is using our intestines to pull a 4x4.

I suppose what I’m getting at is that we could all try to practice a little more tolerance. Those without chronic illnesses could try to listen more instead of judge and assume. Those with, could learn to use these encounters as opportunities to educate rather than take offence. And patients could learn that we are all in this together and all aiming for the same outcome: a cure, and in the meantime the best possible treatment. We could take care of one another physically and mentally and pick up those who are struggling rather than getting competitive about who ‘has it worse’.  Competitive suffering is one of my biggest peeves and should be eliminated from all of time and space immediately.
Now if you’ll excuse me I’ve got permanent marker I need to try and remove from my leg and a Bible based around the life and teaching of James Spader I need to pen.  Bye for now.

P.S. Just a quick note for those who missed it: The WEGO Health Awards were announced yesterday and although I made finalist in two categories (Best in Show: Blog and Best in Show: Twitter) I didn’t take the crowns! BUT I’m honoured to have gotten so far, and want to congratulate some amazing WINNERS from the IBD community!

-Sara Ringer (Inflamed and Untamed)
-Eric (Vegan Ostomy)
-Meg (FrontButtYoutuber)!


Ok byeeee! xox

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