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?

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Comments

View Comments (6)
  • AJoy
    4 years ago

    I thought that “Spoon Theory” did a somewhat fair job of explaining my Fatigue. But it really doesn’t give the full range. Somedays I wake up with “10 Spoons”, but there are definitely days when I only get “8 Spoons” to start out with, and how do explain that, esp when I don’t have any idea why, myself. How do you explain that sometimes I can “borrow Spoons” from tomorrow, and other times I just can’t, and if I do borrow, I pay for it for days, even weeks sometimes. That going to sleep at night doesn’t necessarily renew my stash, lol.

    Fatigue has always been my #1 symptom, even from the first “event”, 11 years before official diagnosis. Now, sitting at the computer can take all of my energy. It is still difficult to understand, much less explain, that, NO, I am not “lazy”, but don’t even have the energy to get motivated much of the time, and do not look forward to exhausting what little I have, just to be in pain, from doing simple chores.

    I totally agree with the publicity of MSers who are running marathons, and such, being a problem with presenting a skewed image. Its great when a newly dx person can keep up with the level of physical activity they had prior to dx. But they should NOT be the foremost in the media, in such a way that the general public loses sight of the difficulties that many of us face when the disease becomes progressive. And, many of us were never that physically active prior to dx, and once you are suffering with the symptoms, it becomes even more difficult to try to become active.

  • Jess
    4 years ago

    Ever since I showed my boyfriend the spoon theory he is constantly reminding me to not use up my spoons on unnecessary things like taking a shower. I’m sorry I showed him! I feel like a human when I shower, MS has taken so much from me if I use up my so called spoons so be it. Someday I may not be able to shower myself so while I still can, I will! My family couldn’t get the theory either, it became all about them. No, I’m done with the spoon theory!

  • Louisa
    4 years ago

    I find it irritating and I’m sure the general public finds it confusing when so many of our publications have people on the covers running marathons, climbing mountains, riding in bike races, etc. and yet we go on and on and on about our debilitating disease. While we all know that MS has a very broad spectrum, many people do not understand that. For the first seven years I had MS I only had a little numbness and tingling every once in a while. Then I had a few bouts of optic neuritis. Then later when I was going through a very stressful time in my life I developed foot drop and weakness in my right leg and most recently I’ve had a relapse where my entire left leg feels like it’s asleep and it’s very painful. All of this has taken place over the course of 25 years. So at one point some people with MS can look and act perfectly normal. Then there’s others who are having trouble with mobility, pain, eyesight, speech, etc. we live this disease and don’t understand it all the time. How can we expect people who have never had the experience to understand how we feel and take our word for what we say? For the most part it’s all invisible. It’s a sad reality that we constantly feel like we have to justify what is happening with our bodies.

  • north-star
    4 years ago

    Spoon theory is like any other analogy, it attempts to explain the unexplainable. Like the reality of parenthood, you don’t “get it” until it happens to you.

    I absolutely agree with the side-thread here, the celebration of exceptional, athletic people as role models for I’m not sure who. Most people progress from relapsing remitting to secondary progressive MS eventually. When preternaturally able people are featured in MS publications, I’m left feeling like visible MS is a failure on my part, when most of them will likely be where I am in a few years, no matter what they do.

    I avoid articles about people at the beginning stages of relapsing remitting MS. I was there, once upon a time, and now I use a walker, lots of abilities are gone permanently. I’d love to see something about a 10, 20, 30 year veteran who’s still active despite limitations. I’m not at all inspired by the accomplishments of someone with RRMS.

    Unbelievably, MS fundraising events are races I could participate in if there was a category for most hilarious or best obstacle.

    I think you hit a nerve, Steve. (Pretty amazing when you think about what shape mine are in.)

  • Kim Dolce moderator
    4 years ago

    Steve,

    I don’t think we should allow the haters–those that accuse us of moaning–to muzzle our attempts to describe what it’s like to have MS. They are bullies, and with bullies, you can’t win. Ever.

    I see Spoon Theory as an effective way to make concrete the abstract notion of fatigue. Perhaps we shouldn’t have the expectation that this kind of attempt to describe our disease is going to persuade the able-bodied to refrain from such remarks as: “yeah, I get tired, too.” People seem to want to relate to us, either out of a real desire to understand or as a way to dismiss us. Really, it’s out of our hands.

    However, your final points about the proper ways to present ourselves to the mainstream certainly do dovetail with my concerns about how disease mags favor images of the athletes that are still early in their disease course and likely have RRMS and in remission. There has been a slant towards sugar-coating the real-life effects of this disease, and I’m not sure that helps us in the long run. We need to find a some kind of balance in presenting the best and worst case scenarios so that people see how good and how bad it can be.

    Thanks for bringing this up, it got me thinking, as I’m sure it has others.

    Kim

  • Johan
    4 years ago

    I kinda like the spoon theory.

    JE

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