Speaking of Spoons

three dessert spoons and six teaspoons lying jumbled on a pink and black fabric

In which I talk of many things, of shoes and ships and sealing wax and cabbages and kings. No, wait, spoons. Just spoons.

A spoon is a simple thing: a small bowl on the end of a handle. But in the last few years the word has come to mean much more than that.

It all started in 2003 when a woman with Lupus found a new way of explaining what her life was like to a friend. Christine Miserandino’s story of this moment can be found here and is well worth reading. Honestly, I sometimes tear up a little bit when I read it. For those who don’t want to click the link, here are the basics.

Every morning, you wake up with a certain number of spoons. Each spoon can be used to pay for a certain activity, or spoons can be combined for bigger activities. Imagine you start the day with ten spoons. Brushing your teeth takes a spoon. If you want to wash your hair, you must spend three spoons. Getting dressed costs four spoons. Getting your breakfast takes another one… take care though! Suddenly you only have one spoon left and it must last you the rest of the day.

The spoons here each represent a quantity of energy. The point, of course, is that people with chronic illnesses have so little energy that every single little action has to be calculated and considered. For example, the only reason that getting my own breakfast only takes one spoon is because I collect milk, bowl and spoon on the way back from the bathroom in the morning – everything else can be done sitting down. It’s possible to borrow spoons from the next day, but they’re only a loan.

There are problems with the spoon theory (though I strongly doubt that Miserandino herself intended it to be taken literally). One issue a huge number of people have is that many of us simply don’t know how many spoons we’re going to have on any given day. Bad days tend to come after busy ones but otherwise it’s almost impossible to predict.

Not only that, but a lot of us don’t even know how many spoons we’ve got when we wake up in the morning. It normally takes me two or three hours to tell what kind of day it’s going to be, which is one of the reasons I have a very low-energy morning routine which incorporates an hour’s rest after breakfast.

As well as not knowing how many spoons we’ve got at the start of the day, energy levels can change abruptly – or we can be deceived. I might be feeling quite chipper at lunchtime but by the time I’ve heated up some soup in the microwave and buttered a roll I’m feeling utterly drained. Occasionally I’ll feel absolutely dreadful in the morning but by mid-afternoon find that I’m unexpectedly able to do a bit of tidying up.

It’s also important to mention that while spoons can be borrowed from the next day, it’s not quite so simple as just doing less tomorrow to balance it out. If I use more spoons than I have in a day it leaves me exhausted and in pain for much longer than is proportional. This is where the spoon theory wins out over simply talking about energy because if I say ‘I’ve used more energy than I have’ it doesn’t make a lot of sense. Spoon theory talks about energy not as what I can potentially do right now, but takes into account the impact of each activity and the energy that I have over days or weeks, or even months.

With that in mind, the borrowing of spoons makes more sense. It’s not simply using energy today that I would have used tomorrow. When I borrow spoons, I have to pay them back with interest. Post-exertional malaise is absolutely debilitating. For people whose energy works in the ‘normal’ way, doing too much might be like using a credit card: they use it for the sake of convenience, perhaps to help with cash flow, but as long as they pay it back before interest gets added it doesn’t have an impact on their financial situation. For spoonies, borrowing energy is more like a payday loan. There’s a massive amount of interest and there are fees and paying it back is really hard and if you aren’t careful it could start a cycle that leaves you destitute.

All of the above boils down to the fact that some people feel that the spoon theory makes abled people think they have more control over their lfe than they really do, as this article  describes. Aside from that, others dislike having their identity reduced down to a single characteristic: that of having to be careful of how they use their energy. ‘Spoonie’ is a strong identity and it can be easy for people to forget that you are many other things too. And as with any other identity, we should never force a label on someone which they aren’t comfortable with.

For me, however, the benefits of the ‘spoonie’ identity outweigh the disadvantages. I don’t, personally, have a problem with using the word when that part of my identity is relevant. I have many other identities too: disabled, bisexual, woman, cisgender, mentally ill, bibliophile, writer, feminist… and that’s just for starters.

But ‘spoonie’ has become more than a way of describing life with chronic illness to abled people. It’s a group identity, a way of coming together. When I see someone describing themselves as a spoonie, I know that some of the difficulties they experience are similar to some of the difficulties that I experience. I know that there is a baseline of reality I won’t have to explain to them because they know what it’s like. The spoon theory describes a way of living that people who have never experienced it can never entirely comprehend, and having a community who do understand is a huge boon.

Following on from this, it’s important to remember that the spoon theory is also widely applicable. People who aren’t chronically ill may not describe themselves as spoonies but the language of spoon theory can still be a very effective way of communicating certain difficulties. Mental illness, for example, often causes physical and emotional fatigue, and ‘spoons’ can be a useful way of explaining its effect, as described in this article. Again, some autistic people have found it valuable for helping them to live within their own limits, as you can see here.

Miserandino’s spoon theory isn’t a perfect descriptor for the way my (or, probably, most people’s) energy levels work, but I don’t think that’s the point of it. I think it’s there to give a big-picture view of how it feels to deal with chronic illness. You can know all the symptoms someone has and be able to describe how they affect the person’s life, but that doesn’t necessarily mean you understand how it feels to live this way. But if someone gives you a handful of spoons, asks you to describe your day, and keeps taking away your spoons until by the time you reach nine in the morning you’ve only got half of them left, you start to get an inkling of what chronic illness really means. And once that has happened, when your chronically ill friend tells you ‘I don’t have the spoons for this’, you get it.

And that is why I call myself a spoonie.

 

2 thoughts on “Speaking of Spoons

  1. Hi, this may seem weird, but I just saw your tweet about being tired of having carers/PAs. I know where you’re coming from. I completely accept that I need help durning the day, but it’s nice to have alone time as well. I like when they’re here, and I like when they go home. So, yeah, just saying I agree. Lorna

    Liked by 1 person

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