Have you ever heard someone call themselves a ‘spoonie’?
I use the term almost daily. Here’s why: it can be really, really tough to explain to someone who lives an average, pain-free life how my chronic illness – called fibromyalgia – affects me.
My chronic illness isn’t visible, and I don’t look particularly different on a bad pain day to a manageable one, so I don’t blame anyone for being confused by it. I certainly was when I first got sick!
So it can be really difficult to explain the amount of pain I’m in, and what my specific pain feels like. Many of the people I’ve described my chronic fatigue to over the years have failed to really get what I’m trying to describe, and some have misinterpreted what I’m saying completely. (“Oh, so you’re just like, really tired?”, for example.)
Many of us in the disabled and chronic illness communities feel this way; we struggle to be understood by those who are able-bodied. It isn’t for lack of trying on our part, and it (usually) isn’t for lack of empathy on theirs; it’s just really hard to explain a sensation or an experience to someone who hasn’t been through it. So from this quest to be understood, the spoon theory was born.
Nearly 20 years ago, a woman called Christine Miserandino created the Spoon Theory completely by chance.
Nearly 20 years ago, a woman called Christine Miserandino created the Spoon Theory completely by chance. She was sitting in a diner with a friend, who was asking her questions about her chronic illness, lupus. To help explain the daily limits of the pain and fatigue that are symptoms of her auto-immune condition, she picked up the closest bunch of things on the table: spoons.
Miserandino told her friend that every task, from the small or seemingly insignificant like showering or waiting for the bus, to the large like a busy day of work or cooking dinner, all use up a certain number of your daily allowance of spoons. She handed her friend twelve spoons and explained to her that healthy people have unlimited spoons to do daily tasks, but chronically ill people have to carefully choose the tasks and plan out every day, because they have limited spoons. Her friend quickly realised that waking up, showering, commuting to work: these all use up multiple spoons, so by the time she ‘arrived at work’, she had already lost nearly half of her day’s spoons. After work, she only had one spoon left – Miserandino told her she could cook dinner, but that meant she had no spoons left to do the dishes or shower. She was shocked by this revelation.
Miserandino’s experiment is a pretty accurate representation of my pain and fatigue levels: a normal work day uses most of my spoons, and I will often have to choose between things that many able-bodied people would take for granted, because I only have one spoon left.
You can’t really bargain with the spoons, either. You have to make sure you don’t run out, otherwise you could end up lowering your amount of spoons for the next day, or making yourself very sick. You can’t borrow spoons from the next day, otherwise you won’t have enough to be able to do tomorrow’s tasks. Your spoons are not plentiful, and you have to know your body well to be able to properly visualise how many spoons you’re going to have for each and every day. You have to just learn how to do this by trial and error. If you keep overestimating your spoons, you’re in trouble – I’ve been hospitalised before, because I was too regularly overestimating my spoons.
Her essay summarises the difference between able-bodied people, and people with chronic or invisible illnesses like this:
‘Most people start the day with an unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions.
‘I explained [to my friend] that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.’
Personally I’ve found the Spoon Theory to be really helpful in explaining some of my symptoms, particularly my daily pain and low energy levels. It also drastically helped me understand my own illness when I became sick, and my new limitations when I was first coming to terms with being chronically ill and having less energy than I used to. It’s now become everyday vernacular in my household: I’ll say I’m ‘having a low spoons day’ rather than explain my fatigue, and my partner will often ask ‘how are your spoons today?’ before making plans.
The Spoon Theory has been helpful to many in the disabled, chronically ill, and even mental illness communities, that the spoon has become a powerful symbol for us. It symbolises our shared yet diverse lived experiences, our quotidian struggles and sundry triumphs, and most of all, our undeniable resilience and determination to be understood.
Tattoos, artworks and clothing featuring spoons are commonplace in our communities. You’ll likely hear us call each other ‘spoonies’ too, which is now a common term of empowerment and endearment for each other.
The hashtags #spoonie and #spooniewarrior on Instagram have millions of posts from people all over the world living with disability, chronic illness or mental illness. It’s become a term that binds us and brings us together, even if we live thousands of miles away. I have spoonie friends from all around the world, and I treasure their friendship.
I’m very proud to be a spoonie, and I’m so, so happy that one day in 2003, a woman picked up some cutlery in a fraught bid to explain lupus in a simple way to one of her friends at a diner. Talk about a greasy spoon!
You can read ‘The Spoon Theory’ by Christine Miserandino at ButYouDontLookSick.com.
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