This is something that I have found very useful over the years after finding it when it comes to explaining how it feels to people who don’t have ME. The spoon theory can be found here, though it’s been posted about in a lot of other forums and a quick google search will throw up a lot of results. I think this is the original place it was posted and the website has a lot of other useful and interesting pages, though they’re written about Lupus I find that a lot of them relate well to ME and probably quite a few other invisible illnesses, especially when talking about pain or the way people react to you with an invisible illness.
I think it’s hard for people who don’t have a chronic illness to understand how it feels to be ill every day, to have to plan what you’re doing so you don’t run out of energy and I found this spoon theory method of describing it very useful as it’s something people can understand and imagine. I’ve never actually grabbed a handful of spoons but giving the page to someone to read, either the link or a print out, can help them understand how it feels at least a little bit. They can see when you’re in pain or when you’re brain fog is acting up and you can’t think of simple words but can’t see how it feels to be so restricted and reliant on others and how much we have to plan even the simplest things.
Over the years I’ve heard other versions of this, some use petrol in a car or time on a clock but I’ve found this the easiest as it’s the thought of physically holding this group of spoons. The others are good and it probably depends on who you’re telling it to as some people will identify more with running a car than holding a handful of spoons but it’s still a nice image and something a bit different, people who have read it can ask if you have enough spoons and it’s a bit of a light hearted way of asking if you have enough energy and it makes it seem less of a problem and easier to say no to than saying you don’t have the energy for something, at least to me.
This spoon theory has led to the term ‘spoonies’ which for years I didn’t really use, or particularly like, though I’m not sure why as I like the original spoon theory. I think I mainly didn’t want to use ME as a thing that could be used to describe me, I had ME but I didn’t like to be called an ME sufferer or spoonie (or should that be spoony? What is the singular for sponies?). It’s probably going to sound weird but I filled in my form for college as ‘no disabilities’ even though I had ME, I guess I was kind of in denial about how much it actually affected my everyday life for a while. Also I originally only really took part in groups and forums for people with ME when discussing chronic illnesses rather than the range that I’ve talked to a lot more recently, it felt weird calling myself a spoonie when it was originally written for Lupus and it was a general group name for people with invisible illnesses.
I guess I wrote this post so anyone with a chronic illness who hasn’t heard of the spoon theory can read it if they find this, I was always surprised on the AYME forum when someone posted about it how many people hadn’t heard of it so in case you haven’t then here it is 🙂 Also if you don’t have a chronic illness yourself but know someone who does it’s worth a read to see what it’s like, it’s hard to describe yourself sometimes but this does it pretty well for a range of illnesses. I’m not saying it covers all of them but any that have physical or cognitive fatigue as a problem I think this explains that part pretty well.
I hope this was helpful for someone, it’s the second post in my ME Awareness Week posts and I think it’s quite a useful tool for people with ME as well as hopefully helping increase understanding of it.
I hope everyone’s having a good week, hopefully it’s less windy wherever you are so it’s safe to sit outside without everything getting blown away, I tried earlier and my drink bottle rolled off the table along the patio. I hope you’re all as well as possible 🙂 and any suggestions or questions about ME or my blog in general feel free to comment or email me at firstname.lastname@example.org (I really need to set up a contact and social media page, I’m not sure where it would show up on this theme though).