We’ve been looking at the idea of blame in chronic illness. When I look at how this story tends to play out, as I said at the end of Part Two, we haven’t even got to the worst part yet. The worst part is this:
You, a person with ME/CFS, do all that work, and you finally come to realise that it’s not your fault, and although bad things can happen, it doesn’t mean the world is an entirely bad place. You’ve adjusted your worldview and got over your depression. But the rest of the world has not. This, here, is the worst part. The rest of the world still believes that if they (or you) are good, then good things will happen to them (or you).
To illustrate the problem, here comes Amanda Knox (didn’t see that coming, did you?). At the start of the recent excellent Netflix doc, Amanda looks to camera and says, very deliberately:
“There are those who believe in my innocence, and there are those who believe in my guilt. There is no in-between. And if I’m guilty, it means that I am the ultimate figure to fear. Because I’m not the obvious one. But on the other hand, if I’m innocent, it means that everyone’s vulnerable. And that’s everyone’s nightmare. Either I’m a psychopath, in sheep’s clothing; or I am you.”
Amanda recognised that it was actually less scary for many people to believe she was a murderer, that she deserved to have been locked up for years and subjected to intense pressure under interrogation and equally fierce scrutiny from the press; her diaries, her sex life, all fair game. Because if not – if she was just a normal girl who had lost a friend and then been treated in that way – well, it would be monstrous, wouldn’t it. Something like that happening to someone like you? I didn’t know it until Amanda spelled it out for me, but that would have been too frightening to believe.
It’s much easier, much more comfortable, to believe that people in those types of scenarios have genuinely done something wrong – even if that something isn’t their original crime. (Amanda, if nothing else, seduced that poor Italian boy; she also carried condoms and I’ve even heard that once, she did a cartwheel.)
If we are good, then good things will happen to us. And if bad things happen to someone, why then, they must have deserved it.
This belief permeates the language of illness – chronic or otherwise. Keep fighting, we tell people with cancer and ME/CFS alike. I know you’ll beat this. You’re strong! You’re brave! You’ll figure it out!
When our friends and family speak to us like this, they are (usually) trying to be supportive. Unfortunately, it’s a conditional support with a dangerous undertone, whether or not they realise it. If I don’t beat it, if I don’t figure it out, have I not fought hard enough? Have I not stayed positive enough?
Or maybe I’ve done all of those things, but I was a bad girl in the first place. Maybe all that travel, all that busy-ness, in both my work and my personal life, was too greedy. Maybe I didn’t give my family enough time. Maybe I cared too much about the way my body looked and I trained too much. Maybe I was too ambitious. Maybe I was bossy and controlling. Maybe I partied too hard. Maybe I slept around. Who knows what sins lie beneath that good girl exterior? There must be something, surely; it couldn’t just be…blind luck.
This thinking is borne of a desperation to keep ourselves safe – insulated both from the moral sickness and the sickness itself. And this thinking is also at the heart of our treatment of people on benefits (scroungers), immigrants (job-stealers and scammers), and refugees (liars, fortune seekers, terrorists; or worse, not-even-human swarms of roaches).
It’s not just about illness. This judgement is everywhere. It falls on the homeless person begging by the cash machine, it falls on the greedy banker who loses his job, it falls alike on the female politician daring to show ambition and the pop star who tries to express an opinion. And if we don’t all try to cultivate a better attitude, one day, it could be you. You’ll be the one facing judgement, and you’ll realise, too late, that you have already been found wanting.