For those living with chronic illness, disability or fatigue, every day can feel like a delicate balancing act. This is where the knife, fork, and spoon theory comes in; a simple yet profound metaphor that captures the essence of living with limited energy, and useful analogies for life!
Let’s start with Spoon Theory:
Christine Miserando, like me, has POTS (Postural Orthostatic Tachycardia Syndrome, see more here.) She went to dinner with her best friend and, like the best, best friends out there, her friend started enquiring about her illness. Not the usual facts, figures, medications etc. but what it felt like, on a human level, to be sick like that.
It was at that moment, “The Spoon Theory” was born. Christine quickly grabbed every spoon on their table and other tables. She handed them to her friend and said “Here you go, you have Lupus”.
She explained that the difference between 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.
Most people start the day with 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. Spoons were used to convey this point as a tangible representation of energy. She wanted something for her friend to actually hold, to then be taken away. It represented something outside of us having control over our every day and showed that feeling of loss that most people with chronic illness grieve.
The explanation goes as follows: When you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. Christine said “no”. She looked disappointed, and they hadn’t even started yet.
Christine reminded her friend to always be conscious of how many spoons she had, and not to drop them because she can never forget she has Lupus.
She was asked to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; Christine explained how each one would cost her a spoon.
When she jumped right into getting ready for work as her first task of the morning, Christine cut her off and took away a spoon explaining, “You didn’t sleep well the night before; you have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.”
A spoon had gone and she hasn’t even got dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. (Reaching high and low that early in the morning could actually cost more than one spoon.) Getting dressed was worth another spoon.
She was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. Then Christine explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”.
A person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them.
As they went through the rest of the day, she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night, but how would she find the spoon to create that dinner?
Finally Christine handed her friend a spoon she had been holding in reserve. She said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
“Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to.”
Spoon theory hopefully demonstrates the frustration and challenges. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is the difference between being sick and healthy.
“It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.”
Their conversation ended with Christine reassuring her emotional friend “I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
I love my work, and I had to make it this way, otherwise I would begrudge the spoons used to facilitate it.
Most people with chronic illness are giving away a piece of themselves, in every sense of the word, every time they do anything, yet many don’t look sick, so feel very isolated in their day-to-day challenges. Nothing they chose to do is taken lightly, yet it can be treated so flippantly by those who have the privilege not to have to consider this.
Every chronic illness and disability is different, so I’m not talking for absolutely everyone, but I can’t tell you how seen I felt the first time that my husband mentioned how many spoons I had (we’d been together nearly 12 years before he got there!).
I can confidently say that most people with Lupus, Lyme disease, Myalgic Encephomyalitis (M.E), Chronic Fatigue Syndrome, Hyper mobile EDS and POTS would really appreciate you talking to them about Spoon Theory.
Fork Theory:
So the Spoon Theory is a fundamental metaphor used often in the Chronic Illness Communities to explain to the non-spoonies why life can be hard for them and they may appear “flaky” or difficult to pin down. It is really useful and most of us use it all the time, but it has a corollary, says Jen Rose in a now-famous Tumblr post…
You know the phrase “Stick a fork in me I’m done”, right? Well fork Theory is a (entirely made up!) theory that one has a fork limit. That is, you might be ok with one fork stuck in you, maybe two or three but at some point you will lose your shit if one more forking happens. A fork prick could range from being hungry or having to pee, to getting a new bill or a new diagnosis of illness. There are lots of different sizes of forks, and volume versus quantity means that the fork limit is not absolute. I might be able to deal with 20 tiny little escargot fork annoyances: the hang nail or slightly scratchy sweater and barely notice. However, barely one “you poked my trigger on purpose, because you think it’s fun to see me get agitated.
This is very relevant for some neurodivergent folk, who might be able to deal with their feet being cold or an itchy tag in their clothes, but not both.
One internet user gives the example that “it may seem weird that I just have to get up and leave the conversation to go to the toilet, you just dumped a new burden on me and I already had to pee. Going to the bathroom is the fork I can get rid of the fastest full stop.”
It’s a useful tool in life to realize that you may be able to cope with bigger forks by finding little ones you can remove quickly. A combination of time, focus, and reduction of small stresses that can allow you to focus on the larger stresses in a constructive way.
If you want to push this one further, I guess there has to be a…
Knife Theory
It makes sense that the knives are traumas that require help to fix. Take a fork out and the stress is reduced, take a knife out and you’d better be prepared to stop bleeding…
As JenRose points out, the difference, in many cases, between an able-bodied person and a disabled person, between a person without mental illness and someone with, is very small, and can be encompassed by one word:
YET.
You live long enough, life is going to throw trauma your way. You live long enough, you will experience disability.
In that respect I feel myself fortunate to have fallen sick in my 30s, with enough life behind me to have enjoyed myself and to be eternally grateful for, plus giving me the time to be financially secure. Whilst also being young enough to not be completely stuck in my ways and being so used to being indestructible, that I cannot acknowledge my reality and adapt my mindset. Having cared for a couple of elderly people now, I have seen how heartbreaking and destructive that denial can be.
Read more about Spoon theory by it’s creator, Christine Miserandino at www.butyoudontlooksick.com
See JenRose’s post on fork theory at https://jenrose.com/fork-theory/
