A year or so ago I watched a TED talk on disability and something the speaker said really resonated with me.
I cannot walk in your shoes, and you cannot walk in mine.
It didn’t interpret this statement as a bitter, ‘you don’t understand’ kind of statement. I took this as completely true, true for all of us whether living with disABILITY or not.
Having said this, living with a chronic illness can often be frustrating; frustrating for the person living with the illness and for their friends and family because it is so hard to explain to another person what it feels like.
When looking for an explanation of what living with RA is like with a way to best describe it to my loved ones, I did what any millennial would do – turned to google.
There are various accounts on the internet of personal experiences each unique to that person but the article I stumbled across which most strongly resonated with me was ‘Spoon theory’.
Spoon theory is a disability metaphor coined by Christine Miserandino and is widely used amongst the online disability community. You may have heard the term ‘spoonie’.
The idea of spoon theory is that individuals living with chronic illnesses have limited energy (‘spoons’). Everyday activities which typically those without illnesses wouldn’t have to consider cost individuals living with chronic illness a ‘spoon’. You have a limited number of spoons each day and when they are gone, they are gone. You can sometimes borrow a spoon from the next day but that simply means you have less spoons to use then.
This metaphor rings true with me, as I am lucky in the sense that my RA hasn’t prevented me from doing anything (now it is controlled) but I have to choose my battles wisely as I can’t do everything.
Initially I found this incredibly hard, why couldn’t I have a late night followed by an early morning? Why couldn’t I go to events every night of the week? What I have actually learnt is that I spend my time more wisely, I do the things I really want to do.
It forced me to re-evaluate how I was spending my time, which is something we can all benefit from. I had to realise what was important to me. I have gone from a serial yes woman – agreeing to everything, like the opening of an envelope (I was there!) to putting my time and efforts into the things that mean the most to me and scheduling in ‘me time’; time when I can just relax without the feeling of missing out.
Food for thought;
Could you be spending your time more wisely?
If you had a limited number of spoons how would you spend them?