If it was called chronic memory syndrome, people with dementia probably wouldn't be taken so seriously. "Oh," we might think, "my memory is bad too. Dementia mustn't be that serious, then." Forgetfulness and bad memory run on a spectrum though. We get older, we forget where we put our keys, we have the social embarrassment of forgetting someone's name. We suck in so much bite-sized pieces of info all day long that maybe that has an effect on our short-term memory, too.
But none of us, no matter how scarily bad our short term memories are, no matter how often we rattle through the names of all our kids till we alight on the right one, would ever mistake ourselves for the poor souls we see rattling around nursing homes who've progressively lost, bit by bit, their memory of their own lives and the people who filled it.
The name of a thing is so important. Which disease sounds more debilitating: myalgic encephalomyelitis or chronic fatigue syndrome? The first one sounds all serious and Latin. Myalgic = muscle pain. Encephalo = brain. Myel = spinal cord. Itis = inflammation. Inflammation of the brain and spinal cord with muscle pain thrown in. That sounds a bit more disastrous, doesn't it. But it still doesn't explain the system-wide nature of ME or of how absolutely debilitating it can get. Whereas chronic fatigue syndrome sounds like a label that a lazy person might stick to themselves in the hope that they can get out of adulting.
They are the same illness, in fact, and I wonder if me and the millions of people round the world with ME might have had an easier ride of it if the American scientific medical system had stuck with the first name instead of replacing it with the second in 1989?
Perhaps there would have been more interest paid if the illness wasn't renamed right in the middle of the austerity campaign begun by western governments around the world where, in order to save costs and increase the dollars for the rich, they routinely began insisting that people were lazy if they wouldn't happily hustle for less while meanwhile socialism for corporations was being instigated. Try convincing people who are tired or exhausted that an illness called chronic fatigue syndrome is serious enough that it leaves people bedbound, with every system in their body affected, is serious enough for people to quite regularly suicide. The name just doesn't fit the reality.
Some days I don't know why I'm still here, if I'm going to be honest with you. But I guess I'm better than i have been, even though I'm writing this in bed at 4.39pm, and if I wasn't feeling so fucking depressed maybe I would be full of more gratitude that I am able to write much more recently. If I can write, I don't feel completely disconnected from the world. And I guess I'm still here too because I've got a new treatment I'm in the process of trying, which has helped some people with ME to regain their lives, to be able to work, to be able to drag themselves away from the edge of the horrible terrifying chasm that is being disabled in an ignorant world that will so easily turn its back on you. And it seems to have helped me a little too, so far.
Luckily, finally, research is slowly starting to happen with ME around the world. It's very slow, though. Six times more research dollars were spent on male pattern baldness than on ME in 2016. This illness has the same kind of stigma that AIDS had back in the day. Except with AIDS it was a feeling of revulsion at those dirty gays who God had smited in hate. With chronic fatigue syndrome, it was a feeling of revulsion at a bunch of psychological malingerers who were trying to get out of work and just laze around all day.
That's what my country's federal treasurer told me back in 2012 when I was preparing to go for the disability support pension. Not directly; I wouldn't waste my precious energy on having a conversation with someone like him. But when the Australian government was trying to cut social security spending, Joe Hockey launched into a direct attack on the sickest and oldest and poorest of the country. It's an assault that has only ramped up since then in the world's 13th richest country but back then he sliced us right down the middle into those who were lifters and those who were leaners. Guess which side I was on.
I didn't get the disability support pension because my partner was apparently earning too much. Now that my partner is in a lower-paying job, supporting us both, I would be eligible. But I'm scared. I'm scared of the piles of paperwork I will have to fill in. Even though it wouldn't take me weeks and weeks to fill in, like it did last time because I was so brainfogged then, it's still daunting. So many people horribly disabled by ME are being knocked back. The process of being interviewed by the Centrelink-appointed doctor is dehumanising, and I feel so fragile. It is easier for me to put it off and stay home though I am entitled. It's how they want it.
Still, despite all that, despite feeling so unsupported, that tiny little golden bubble inside that says I am worthy of proper dignity, has only grown. The suffering that I feel has only increased the empathy I feel for other people who are suffering. Some stupid ad promoting a cosmetic company might have appropriated the saying but the fact is, I am worth it, even if my hair is limply undyed and my face is foundation-free and I can't work. I am worthy of dignity, of the beautiful life, just as much as you are. We are all worth looking after each other. No matter what rich people living under the delusion of their separation think.
