Saturday, 13 August 2011

The Spoon Theory, CFS and Aspergers

I found this website through a link on a Facebook group, and it’s well worth a look, especially if you have a long-term, ‘invisible’ illness or disability – or if you haven’t, as it will give you some idea of what it’s like to live with one.

I contracted Chronic Fatigue Syndrome in my late 20s, though it took another ten years, and a severe relapse, before it was diagnosed. Back then, it was a ‘new’ disease, and just as is starting to happen with Aspergers now, many of us who had it were derided as ‘riding on the bandwagon’ of something ‘fashionable’. We were sometimes told “it must be nice to just lie around and rest!” But believe me, there was nothing ‘fashionable’ about it (it was actually being diagnosed as far back as the 1920s, under different names). Nor was there anything ‘restful’ about being so weak I could barely walk, or lying awake well into the night sobbing because of the pain in my muscles, or being unable even to read or watch TV or have more than the briefest of conversations, because the mental effort was just too taxing.

I have long measured my illness in elephants. Years ago, I read somewhere (sorry, I can’t remember where, so can’t credit it), that having CFS is like having an elephant sit on you. I can personally testify that yes, you do feel that ‘crushed’ and broken. When my illness was at its worst, ‘elephant days’ were pretty much constant, thankfully they are now few. Many days are ‘elephant-free’, though I still don’t dare overtax myself. And on yet other days, the elephant sort of …hovers. Those days, I must be especially careful when I ‘measure my spoons’, when choosing what and how much to do.

There are of course many parallels between CFS and Autism, and the spoon theory will resonate with many on the spectrum. We on the spectrum must also calculate what’s within our capabilities. If we go out shopping in the afternoon, we may not have the mental, physical or emotional capacity to do anything ‘social’ in the evening. If several hours of our work day are taken up by a meeting, we may be too ‘empty’ to interact with a partner later. And so on. Even the simplest things take so much more of our time and energy, we have a social ‘thimble’ rather than a social ‘cup’, and we must be careful not to stress ourselves to the point of meltdown or shutdown.

And like so many with invisible illnesses or disabilities, we get little sympathy, because no-one can SEE our pain, our suffering, our exhaustion. Or not until we totally freak out or collapse or go into meltdown. And even then, we can be judged, told we are ‘making a fuss about nothing’, or ‘being a drama queen’, or to ‘pull yourself together!’ Etc, etc, etc. If you’re on the spectrum, and/or have a major ‘invisible’ disability, you’ll know the sort of thing I mean. It’s things like this, that see so many on the spectrum identify with other disabled, and some even join the disability rights movement. Personally, I don’t have the energy. (Calculating those spoons, those elephants, again.) But I do understand why.

So give it a read. Let me know what you think. And if you don’t have a disability, and/or aren’t on the spectrum, then maybe, next time someone who is, or who has one of those ‘invisible’ disabilities, tells you they can’t do something, believe that they really, really, can’t do it.


  1. Hello :) I have cfs/me and found spoon theory useful too, to help me learn to pace.

    Wanted to let you know I found your blog a couple weeks back and read it all, seeing as I'm also mid-age, chronic illness bearing, politically aware and a born woman resident of nz/aotearoa.

    Thanks for writing!

  2. Thank you for commenting! I'm glad you found my writings interesting, and it's always nice to find another Kiwi with CFS, politically aware, etc!