I've had it up to here with... The Spoon Theory
This is the second post in a series of articles looking at the apparent ’Sacred Cows’ of life with MS. As before, this is in no way out to cause offence or to appear as if I have all the answers (I really don’t).
Like I said previously, this is a provocation by way of a reminder that we all need to be the best People with MS we can be.
And some of the things which we say just don’t make us look good!
2 – The Spoon Theory
Now I know this is very popular with a lot of people. And I used it myself when I first came across it – fatigue is perhaps the most common symptom of MS and one of the hardest things to explain and here was a way to make it real.
Except it doesn’t.
Instead, it takes something which is itself fairly abstract (fatigue) and describes it in a way which is even more convoluted (“ok. So these spoons represent my energy… and now I’ve used them all up… why don’t I just buy more? I can’t? Oh right.... Man, it’s OK, I GET TIRED TOO…”)
Whenever I’ve seen it used in the UK on websites and other public forums, those pesky NORMALS pop on and say that Spoonies (ugh) are just moaning (and anyway, they get tired too).
And I can see their point – we need a better, more meaningful analogy to describe fatigue, one which doesn’t rely on abstract stories and mythical worldwide cutlery shortages. And – more importantly – a description which doesn’t make us appear to be weak or reveling in victim-hood.
There was a terrifying stat from the UK MS Society a while back which said that, of all the people with MS who are of working age, it is estimated that only between 23 and 32 per cent are in employment – so that’s at best a quarter of people with MS who feel able and equipped to do any kind of work.
I’m not saying that the Spoon Theory is responsible for this but it’s at least part of a culture which encourages people to think about what they can’t do instead of the things they can.
In the UK at present people who receive benefits and social assistance (including disabled people) are increasingly viewed with suspicion, thanks in part to portrayals in the media and a series of cuts from our current government.
I have a genuine worry that if we keep banging on about fictional spoons (or the lack thereof) - and all the things which we can’t do - it makes it easier to ignore us.
The one positive aspect of the Spoon Theory is that it can encourage us to think properly about managing our fatigue and putting us back in control. But as a way to communicate this symptom to others? Like I said, it's often viewed with suspicion (and derision) and can make us look like we're playing the victim card.
Aside from people writing articles like this one, what are the things which you’ve seen in the MS community which get your back up?
How many specialists did you see before finding "The One"?