In living with chronic illness, I often fall into a strange habit whereby I feel guilty for being happy.
If I show visible improvement in my health, however minor, 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 feels like attention seeking.
This behaviour often stems from the ‘invisibility’ of our illness. Seeing is believing, after all — and some people just can’t seem to get their heads around an invisible illness. They can comprehend that God [Jon Hamm] 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 wholly inappropriate in high-powered business meetings; 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 across our foreheads with detailed artwork conveying our burning innards?
So as our illness is invisible, we are yet again expected to behave as patients — to conform to outsider’s preconceptions of what a ‘patient’ or a ‘person with a disability’ is, anyway. If I had a broken leg and was wearing a massive cast I’d 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?
Crohn’s or no Crohn’s, people can still be mean and rude and presumptuous. It took me an almost embarrassingly long time to realise that those people are not people I want to know at all: so why should I make space for that just because we perhaps share an illness in common? It’s nonsensical. I suppose what I’m getting at is that we could all try to practice a little more tolerance.
Those without chronic illnesses could listen instead of pre-judging. Those with, could learn to use these uncomfortable encounters in which we feel judged, as opportunities to educate rather than take offence. 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 a fake cast I need to try and remove from my leg and a Bible based around the life and teachings of Jon Hamm I need to pen.
Photos by the author