Things You Don't See
- You don't seem me lie awake, wired and worried, ruminating on the events of the day.
- You don't see me collapse on the sofa when I get home from a short trip out, lacking the energy even to take off my shoes.
- You don't see me asking my partner if I behaved 'normally' enough when we bumped into our neighbours.
- You don't see me when I'm too tired to make myself a meal, so it's beans on toast for the third day running.
- You don't see my natural expressions of joy, like jumping up and down and making noises and waving my hands, because I'm too embarrassed to let people see.
- You don't see me when my body is so tired and heavy that I only have one choice: to lie down and rest.
- You don't see me fidgeting and turning while I try to get to sleep because whichever way I lie, I feel pain.
- You don't see the rush of adrenaline that means I have to literally shake myself after a quick conversation with a stranger.
- You don't see my longing to have a 'normal' life with a 'normal' job, wishing that I could fit in.
- You don't see my internal battle against pushing through and burning out.
- You don't see the boredom and isolation of resting.
- You don't see the brain fog that clouds my mind and makes me unable to concentrate.
I'm struggling with chronic fatigue and pain at the moment, on top of my autism. And I'm grappling with a typical worry of chronically ill and neurodivergent people which is that others might think I'm 'making a fuss' or 'not trying hard enough' or even 'faking it'. So I thought I'd make a few bullet points on the things people don't see. Because when you do see me, it'll be on a day when I feel relatively okay, when I've rested beforehand, when I'll be pumped full of adrenaline because it's a social engagement (thanks autism), and will be putting on my 'normal' face, because that's the only way I know how.
While nobody has ever (yet) said that I'm not trying or am faking, it feels cathartic to consider my response anyway. Because these are also things I say to myself. We live in a society that values 'hard work' and competition and making lots of money. People talk about being unbearably busy and exhausted like badges of pride. So of course we are conditioned to think of ourselves in that context. But that doesn't make it the only way, or even a helpful way, to live. I try to remind myself that, for me, I need to rest, even when I'm bored out of my mind. I need to pace myself, even when I get excited and caught up in something, because if I don't I'll have one hell of a crash later. And as a close friend said yesterday, I need to remember that for now (and, let's face it, forever) my health is my priority.
So that's the reason for this slightly depressing post. It's my truth (urgh that phrase! It's hard for us Brits to say) and maybe if I can write it out and share it with you all then I can come to accept it.