And who wants to be like the Microsoft paperclip?
I have chronic fatigue syndrome (cfs). One day in March last year I came home from university placement feeling drowning-tired and crawled into bed expecting to sleep all weekend and be better by Monday. That was over a year ago, and I’m still waiting for that magical Monday.
There’s a lot about having cfs that sucks (shocker). It sucks that on bad days I’m so tired after showering that I need to lie down. It sucks that my once-serviceable memory appears to have sprung a leak and I now have to make checklists to remember basic daily things. It sucks that reading is tiring, that writing is even more tiring, that if I draw too many blog-pictures in a day I start to feel sick.
It sucks that my short-term goals had to be dramatically altered—from ‘start a career’ to ‘maintain a blog’, from ‘make money and save up for cool stuff’ to ‘maybe sweep the floor if you’re feeling up to it’.
But what I hate the most is when people, usually after hearing about my altered goals, tell me that I shouldn’t think like this, that I’m being ‘too negative’ and I should ‘be positive’.
I hate this for a whole bunch of reasons. One is that it’s actually normal to feel bad when bad things happen (and unhealthy to bottle that up). Another is simply because being told what to do and how to feel is a universally loathsome experience. But the main reason I hate it is because it twists the word ‘positive’ into something inverted and monstrous. And I think the reason I feel so strongly about it is that because before I got sick it was my view of ‘positive’ too.
In this sense of ‘positive’ my recovery is not only certain and imminent but it will be the glorious restoration of my life. To ‘be positive’ I must stay focused on that and ignore this ugly illness business, which is ‘negative’.
This version of ‘positive’ is saying that being sick is being broken. It says that I don’t have a life now and I shouldn’t think about and plan for this not-life.
Here’s the thing. What if I never get better?
You want to know something scary? Not everyone recovers from cfs. Most people—the vast majority of them, in fact—do improve, but some don’t, and there’s no way to tell where I fit into those statistics.
So, hypothetically, what if I never get better?
What if I never get better and the only things that matter to me are things I can’t do while I’m sick? What if I spend my entire life planning for when I get better rather than living now? To me, that doesn’t sound like a good mindset. That is not positive. I don’t want to die of old age 60 or 70 years from now bitter that my ‘proper’ life was stolen from me when I was 24.
Don’t tell me that I’ll get my life back when I am better.
Tell me that I have a life now and will have it until I die, whatever else happens.
It won’t be the same life I would have had if I’d never become sick, I know that. Like I said, there’s a lot about having cfs that sucks. Sometimes that makes me sad. But sucky things happen in all lives to all people. Cfs might give me a different life with different sucky things, but it will not give me lesser one.
And I’m not writing this to convince everyone else to rise up in chorus and say the things I want to hear. I’m writing it because maybe I can convince myself to.
Because I will have a life. Just watch me.
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