Running Out
Spoon Theory, chronic illness, and what it costs to get through the day
I was running errands in town, keeping an eye on how to fit them all in with the least amount of walking, when I stopped at a market stall and bought a walking stick. After nine years of kidding myself I was just leaning on a golfing umbrella because I felt like it, honest, even in a heatwave, it helped. Admitting I needed it was a huge boundary to cross.
There are people who assume that those with chronic illnesses are faking it. In reality, we are faking being well. To ourselves as much as to anyone else.
Christine Miserandino found a way to help people with chronic illnesses describe their limitations to those who care about them. Imagine that every small task in your day costs one unit of energy: getting out of bed, eating breakfast, putting your shoes on. Those units could be anything, we call them spoons. Larger tasks, like cooking a meal from a recipe or travelling somewhere unfamiliar, use up more. A healthy person might have a hundred spoons per day. I have between five and thirty, depending on the day. That means calculating the cost of every task. If I don’t, I can run out of spoons by lunchtime.
In chronic illness communities, this model took off. It gave us not only a way to communicate with each other and our loved ones, but a way to understand ourselves. I now have the language to say: I can’t do that, I don’t have enough spoons. Before Spoon Theory, the concept of having less energy had been so wrapped up in decades of social judgement, the assumption that we were simply lazy, that many of us had turned that judgement on ourselves.
I can’t try harder than physically pulling myself out of bed by clutching the headboard, then grabbing the bedside table, just to turn onto my side so I can lift my legs one at a time over the edge.
Budgeting energy looks like: I can have a shower today because I have leftovers for later. Or: I have the doctor’s today and I need food shopping, but I can’t do both.
In my case I have endometriosis, adenomyosis, and CPTSD. I experience fatigue, pain, and brain fog. I once spent five months bed-bound; I’ve since worked nine-hour shifts as a care assistant. It can change day by day, or stay the same for months. A friend once heard me list my conditions in a supermarket aisle and told me I should stop being so greedy, people would be jealous. She had a point, and a sense of humour.
Soon after I first encountered Spoon Theory I wrote a poem to capture what it means from the inside.
Spoons
Spoons to you are usually metal
Sometimes wood, sometimes plastic
I even had one once made of horn.
But they’re never so incredibly fantastic
That you hold them in great bundles
Of excitement and joy
And count them off one by one,
Your smile slowly fading
Until you are left stranded with only one.
As they start to vanish you start to grimace
Wondering will you get home
And then you find yourself in some crisis
And suddenly you’re left stranded with only one.
A good spoon day is one where you can ‘do’
You have so many spoons you grin from ear to ear
Like children in sweet shops do
And the cheshire cat
So you think of all the ‘tasks’ you would do
With all those lovely pretty spoons
Washing up… laundry… change the bed
The excitement wells up and you grin with glee
As the possibilities rattle through your head
Cooking! Wow, I could eat dinner tonight!
I could even have a shower before I go to bed!
We’re told to ‘pace’ to save our spoons
And not push too much
But the tasks need doing and can’t normally be done
And the wonder of being able to is just oh too much!
The bad spoon days often follow the good
But they also come whenever they feel like too
In fact they come quite a lot
It’s when your spoons are very few.
There’s not a lot you can do about it
Getting to the loo is a task in itself
If you can make a drink and clean your teeth
At some point, then you’re doing well
Of course the good days can turn at any time
Into bad
Without warning
And you lose all that wonderful joy that had
Some crisis occurs (BAM)
“Damn, I fell”
Vision blurs
For a moment
And then
Someone helps you up
But where are your spoons?
Where have they gone?
You look round frantically
In all the gaps in the pavement
Where did all the pretty little spoons go?
But no there are no spoons,
Just the one left in your hand.
So again, you are left stranded with only one.
The excitement in the good spoon day stanza is real. I have absolutely felt that, and simultaneously felt ridiculous at the absurdity of being so delighted I could change my sheets. The concept of pacing is sensible: don’t push on good days or you’ll knock yourself out. But that’s like being told to stick to a sensible diet with no occasional glass of wine or slice of cake. I’d rather live part-time than have a half-life all the time. I’m going to have the bad days anyway, but at least if I’ve enjoyed something beforehand, there’s some joy to hold onto while lying in a curtained room unable to move.
The final stanza is about how energy can change suddenly, triggered by something outside, too much noise on the bus, a difficult hospital appointment. I learned to keep £5 in the back of my wallet for an emergency taxi, after the time I slid down a wall to the floor having spent too long in an interesting conversation without finding somewhere to sit. An off-duty A&E doctor appeared and insisted on calling an ambulance. At the hospital I was told off for bothering them. All I had wanted was to go home; it was five minutes’ walk away. I had simply run out of spoons entirely.
What chronically ill people need in moments like that is to be heard. These days I carry cue cards and a sunflower lanyard, I can let people know I need somewhere to sit, a glass of water, and maybe a phone call. Not she’s being difficult. Just someone to listen to my needs for a moment.
Part of the problem is that people understand illness when it’s temporary and visible. They know what to do with a broken leg because recovery is expected. Chronic illness is different: unpredictable, invisible, ongoing. The discomfort others feel often comes from helplessness rather than cruelty, but it can leave the chronically ill person feeling pressure to appear cheerful and capable. At least you don’t have xyz is a phrase many of us hear far too often.
With my endometriosis, strong emotions can make the pain worse, so in a flare, I can end up managing not only my own symptoms but the distress of the people around me. It’s another task on the list, at exactly the moment I have the least capacity to carry it.
“You look well,” a friend says, seeing me in the supermarket on my one day out in two weeks. I don’t. I’m leaning on a trolley with both forearms, and I feel half dead. But nobody else is going to buy my food, and this is the day I have more strength than others. She says I look well because that’s what she feels expected to say.
Spoon Theory gives us a language for experiences that are hard to explain outside our community. Behind the cancelled plans and unfinished tasks is a person calculating what they have left, and what they need to conserve just to get through. The illness is invisible. The battle is not.
Author's note: This article, and the poem within it, refer to a time when I was struggling significantly with fatigue. For many people, improvement isn't possible, or looks very different — I have been fortunate in that I have recovered to some extent. Relapse is always a possibility, and I still have to be conscious of my energy levels, even if I can now work a long shift on my feet.