CN: General discussion of the experience of having a chronic illness, reference to ableism and mental illness
Have you ever dealt with a chronic illness and struggled to explain to your healthy friends why you just can’t go out with them anymore? Have you ever heard someone say, “I don’t have the spoons for that,” and wondered what they were talking about?
Simply put, spoons are a unit of measurement for resources. When someone references how many spoons they have, they are referring to their level of energy. The concept of using spoons to talk about resources is used primarily by people who suffer from chronic illnesses to discuss the amount of energy it takes for them to do basic tasks. Depending on what kind of chronic illness you have, you may put a focus on different kinds of resources, ie physical, emotional, mental, or social. This collection of concepts is called Spoon Theory.
In this article, I’ll provide a basic overview of spoon theory, how it was created, how it’s used, and further expansions on spoon theory that I’ve found helpful.
Why Chronic Illness?
To understand why the concept of spoons is necessary, you’ll need a basic idea of what’s involved in managing a chronic illness.
Note: For simplicity sake, I’ll be using the term “healthy person” to mean someone who does not have a chronic illness, chronic pain, a disability that negatively affects their health, mental illness, cognitive disability, or a processing disorder. Health isn’t binary so it’s actually a much more complicated distinction.
Have you ever had a cold that just wouldn’t go away? Two weeks in and you’re still feeling crummy; some days you think you’ve kicked it but then it’s back again. In an ideal world where everyone receives unlimited paid sick leave, you can take it easy and rest for the full duration of your cold. But the longer your cold lasts, the harder it is to continue resting. Responsibilities, chores, errands start to pile up. Sometimes you have to suck it up and take care of life stuff before you’re all the way better.
But when you try to return to your normal life activities while your sickness lingers, everything takes more energy and your body has less to begin with. Finishing a full meal is a big deal. Going to the grocery store is cause for celebration! The closer to running out of energy you get, the worse your symptoms get. When you do run out of energy, you crash-- HARD. Overdoing it might mean that tomorrow you’re too sick to get out of bed.
People with chronic illnesses are in this last stage of sickness all the time. Our illness doesn’t go away (hence the word chronic) so we can’t wait until we’re feeling better to get back to life. Instead, we have to find ways to manage our everyday responsibilities while feeling sick. The soul-deep tiredness, the achiness, the gross annoying symptoms, they don’t go away, but life must go on.
Spoon Theory explains that people who suffer from chronic illnesses are given a set number of resources-- spoons-- each day, and once they’ve used up those resources, they can no longer function in even basic ways.
Where a healthy person might start out their day with 100 spoons, someone with a chronic illness may only have 40. When you’re limited to 40 spoons for the entire day and society expects you to have 100, you have to be much more careful about how you choose to use them. Just making breakfast and going to work could take up a quarter of your spoons, and you’re nowhere near the end of your day!
Just like trying to power through a cold, if you run out of spoons, you can choose to push through and borrow from tomorrow’s spoons, but this means you’ll pay the price of having even fewer spoons to make it through tomorrow. People who think of their resources in terms of spoons often call themselves spoonies.
Creation of Spoon Theory
Spoon theory was originally created by Christine Miserandino in order to explain to her close friend what the experience of living with Lupus was like. Having dinner at a restaurant, Christine was hit with a rush of inspiration and grabbed the nearest thing-- a handful of spoons. She walked her friend through a day with Lupus- you spend one spoon on a shower, one spoon on making breakfast, one spoon on getting dressed-- you have fewer than 10 spoons to last you through the whole day.
The physical and concrete representation of spoons became a clear and concise way to discuss resources the way chronically ill people experience them. They were a particularly good metaphor for people with invisible illnesses to use because it allowed for a process that was purely internal to be manifested in an external and visible way. This tool has been especially useful for chronically ill people to communicate with their loved ones about how our experience of everyday life is different from theirs. Spoon management is a process healthy people rarely have to consider, which leads to a lot of doubt and dismissal when a chronically ill person says, “I’m too tired to do this.” Spoons helped legitimize that experience.
Though spoons started out as a metaphor specific to the chronically ill community, its use has since expanded to physically and cognitively disabled people as well as people with mental illnesses or processing disorders. All of these conditions require constant evaluation of available resources and higher consequences if resources run out.
Using Spoon Theory to Understand Yourself
Learning of the existence of spoon theory can be incredibly validating within the context of a society where having unlimited resources is the default expectation and where the ability to suffer through hard work is considered a virtue. If you’re a spoonie, it can be difficult for you and for the people that care about you to understand why you can’t manage resources like everyone else does. Spoon Theory gives you a vocabulary with which to describe yourself to others. Some useful phrases to have on hand:
I’m low on spoons.
I don’t have enough spoons for that.
I might be able to do that, it depends on how many spoons I have that day.
I’m scared of doing X because it’s going to cost so many spoons.
If you have the spoons, could you…?
You Know You’re a Spoonie When...
There are as many ways of being a spoonie as there are people who use the term, but many spoonies have a set of experiences in common. This is not in any way an exhaustive list of qualifications for being a spoonie (you can see some basic criteria for being a spoonie here), but many of these are applicable to a wide variety of physical and mental illnesses:
You know you’re a spoonie when you bring your entire medicine cabinet with you when you travel, even if it’s just for a day.
You know you’re a spoonie when you need to rest after taking a shower.
You know you’re a spoonie when you feel like strangling the next person who hears of your ailment and immediately suggests yoga to you. Or turmeric. Or an anti-inflammatory diet. Or…
You know you’re a spoonie when you spend more time with medical professionals than with your friends.
You know you’re a spoonie when you have an app on your phone to remind you to use the other app on your phone that tracks which medications you have to take when but you still can’t remember whether you took your meds or not.
You know you’re a spoonie when cooking and going to the grocery store on the same day are too many things.
You know you’re a spoonie when you can definitively say which emergency rooms are the “good ones.”
You know you’re a spoonie when you have to explain the details of your condition to your doctor instead of the other way around. You’re definitely a spoonie if you go in expecting that they’ll dismiss your extensive knowledge of your own body.
A number of years after Spoon Theory was coined and established, an expansion was created, aptly named Fork Theory. Similar to Spoon Theory, forks are also units of resources, however, forks can be used to complete a task that will help replenish our resources, rather than inevitably draining them. Wyn, from the youtube channel The Entropy System, explains Fork Theory in this very informative video like so: I might feel much better after taking a shower. Perhaps taking a shower costs me two forks, but I will gain 10 forks by doing it. Rather than slowly losing all your resources over the course of the day, forks allow you to gain some of those resources back.
Fork Theory helps explain why there are certain activities that energize us, whether it’s something healthy for our bodies like a yummy meal or a safe amount of exercise, or doing an activity we love like drawing or listening to music. As Wyn points out, Fork theory helps explain why sometimes, even though we know we will feel better after doing a specific task, we still just won’t do it. Just like with spoon theory, if you don’t have the forks to complete a task, you can’t do it, without risking a serious energy crash or a much worse state of being tomorrow.
Spoon Theory Needs Expanding
Spoon theory was created so that people with chronic illnesses could have a simple straight-forward way to explain to healthy people a basic function of their life that is pretty unlike anything healthy people have to encounter. It’s intended to be oversimplistic so that it can be easy to grasp. But we know that resource management is far more complicated than starting out with a concrete number of resources that you slowly lose through the course of the day. Christine Miserandino touches on this complexity in her original story on inventing spoon theory:
“I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.”
There are far more variables to consider than just how many spoons you have left, which is probably why fork theory was created. The simplistic definition of spoons left holes in the explanation of what it feels like to manage resources, but even with the addition of fork theory, holes still remain.
Why Forks and Spoons Are the Same Thing
The supposed difference between forks and spoons hinges on whether or not we have the ability to replenish our resources. But according to spoon theory, every morning when we wake up, our spoons are refilled. Sleep is, therefore, a task that we can complete in order to replenish our resources, the replenishment just happens much more slowly than the tasks referenced in Fork Theory. If spoons can also be replenished, is there a difference in that process that separates out spoons from forks? If we take certain measures to ensure a good nights sleep, are we investing in resource replenishment or are we slowing down an inevitable loss of resources? Is there actually a distinct difference between these two functions?
Examining more closely, it’s difficult to tell forks and spoons apart. Which is why I believe that forks and spoons, when it comes to resource management, are actually the same thing.
New Addition to Spoon Theory
Fork theory attempted to fill in the aspects of resource management that spoon theory missed. But given the confusion between what qualifies as a spoon or a fork, I’d like to propose a different expansion on spoon theory to help describe the depth of complexity we consider in our daily decision making regarding our resources.
The Five Variables of Resource Management
The amount of resources you lose
The amount of resources you replenish
The rate at which you lose resources
The rate at which you replenish resources
The amount of resources it costs you to initiate replenishment
These variables are involved in every action you take and in every environment change that happens to you.
Which means you can take actions that:
Affect the amount of resources you have, such as
Affect the rate at which resources are lost, such as
Pausing a constant loss of resources
Slowing the rate of loss of resources
Increasing the rate of loss of resources
Affect the rate at which you replenish resources, such as
Increasing your rate of replenishment
Reducing your rate of replenishment
Reducing your resources in such a way that you’re no longer able to access replenishment
So for example, by doing my physical therapy strengthening exercises every morning, I am:
Investing in a very slow replenishment of energy that takes years to build up
Slowing the rate at which I will lose resources by waking up my muscles and reminding them to do the heavy lifting my joints cannot do
Reducing my resources a small amount due to the energy it takes to invest up front to achieve the first two benefits.
Is your head spinning? It should be! This is a lot to think about! But people who are chronically ill have to think about all of these variables all the time or risk running up against a hard wall.
Cost vs. Benefit
Healthy people replenish resources quickly, lose them slowly, replenishment more, and lose smaller amounts of them. This particular line up of variables means that you’re likely to be able to afford the cost of initiating replenishment (the fifth variable), even if the cost is relatively high, without ever weighing the pros and cons of that decision.
But if you have the opposite line up-- slow replenishment, fast resource loss, not very much replenishment, large losses of resources-- then the question, “Is this source of replenishment worth it?” becomes crucial to consider.
Using their knowledge of the variables listed above, spoonies have to do a cost vs. benefit analysis of just about every action they take.
The five categories of cost to benefit ratios:
Coming Out Even- Your loss and replenishment of resources are occurring at the same rate simultaneously, making the effect on you negligible to none.
High Efficiency- Your upfront cost of resources is low which allows a large positive effect on your rate or amount of replenishment, or on your ability to prevent resource loss.
Low Efficiency- Your gains in replenishment and/or loss prevention are only marginally higher than the original cost, even if that cost is low.
Overall Loss- A net loss of resources.
Shot in the Dark- You don’t know the ratio of cost to benefit for this particular task, making it a risky endeavor for someone low on resources.
I find this break-down is really helpful in explaining why I accept some treatment suggestions and reject others. If a stranger recommends a treatment option to me and I have no other information to suggest it will be effective, that’s a shot in the dark, which is a risky resource expenditure that I can’t afford.
If the treatment sounds promising and all I have to do is buy a $5 bottle of pills and take one a day, the cost of upfront resources is so low, it’s likely to be high efficiency! But if I have to overhaul my diet, look up new recipes, throw out food I can’t eat, spend extra time cooking and washing up, it’s likely to be low efficiency and potentially not worth the energy, even if the treatment helps.
The concept of “coming out even” is important in describing the energy usage of healthy people. By default, they are coming out even with the majority of their basic everyday tasks. If a chronically ill person tells a healthy person that they have four hours of energy a day, the healthy person believes the chronically ill person can work for four hours a day! They don’t realize that when the majority of tasks you take on result in an overall loss of resources, then that four hours includes getting up in the morning, eating breakfast, getting ready, traveling to work, returning home, eating dinner, not to mention anything else you might want to do. Those tasks require negligible energy for a healthy person, so they often don’t even register as requiring energy at all!
The Modern Spoonie
Using my new definition, you know you’re a spoonie if…
By default, you lose resources faster than you replenish them.
The amount of energy you have to use over the course of your day is inconsistent but usually lower than the average person.
You have to be careful with how you ration your resources, because being in a state of little to no resources is not something you can power through.
You have to make specific, calculated choices that often center the ability to replenish resources quickly or efficiently.
Simple lifestyle changes can sometimes improve your rate of resource replenishment or your daily allotment of resources, but generally, you’re in this struggle for the long haul.
Appropriation of Spoons
Some people wonder whether it’s appropriate for healthy people to use the concept of spoons to discuss their own resources. There’s an argument to be made that the use of Spoon Theory to talk about everyday levels of fatigue dilutes the impact the concept has and undermines the severity of consequences spoonies face when they run out of resources.
Given that risk, I do think that healthy people should use care when using spoon terminology. “I’m low on spoons” is not synonymous for “I’m tired” and should not be used that way. And if you have a chronically ill friend who is uncomfortable with you using spoon theory to describe your state of being, I recommend respecting their preference.
However, I’m wary of policing other people’s use of Spoon Theory as Naomi Chainey does in her article, “Stop appropriating the language that explains my condition.” Unless you know a person extremely well, it’s difficult to say as an outsider, how someone has to manage their resources. You don’t have to be bed-ridden to be a spoonie and the majority of illnesses and disorders that use spoon theory as a tool to describe themselves are invisible, making it pretty hard to tell whether someone has one or not or the degree to which that issue affects them.
Our society encourages us to doubt the ability of others to determine their own resources and to assume that if someone says they are tired or in pain, they’re probably exaggerating. Disabled and chronically ill people are constantly facing suspicion about whether they are “really disabled,” or “sick enough,” to be receiving the accommodation they seek. But just how sick do you have to be in order to be allowed to use Spoon theory?
If we turn this same scrutiny on people whose circumstances we don’t know, we’re very likely to dismiss the needs of some of the people who are like us, because we have no way of knowing except by what they tell us about themselves. That scrutiny is also likely to be affected by other unconscious biases we have, making us more likely to dismiss people of color and LGBT folks who "appear" healthy. Even in Chainey’s example about not having the spoons to cope with a mansplainer, there’s research to suggest that a lifetime of suffering microaggressions related to sexism, racism, and other forms of oppression, is linked to PTSD, making the action of coping with a bigot a very spoon draining task indeed.
If a truly healthy person uses the phrase, “I’m low on spoons,” they may be undermining the degree of fatigue actually involved in being low in spoons, but they may also be attempting to legitimize their own exhaustion. Even healthy people encounter doubt that they really are as tired as they say they are (even if that fatigue level is dramatically less severe than for a spoonie in that position). Taking a healthy person’s assessment of their own body seriously seems like supporting the same cause as trusting chronically ill people to accurately report their resource level, even if the scale is different. Assuming that someone using spoon theory is exaggerating their state of health based on limited information encourages the same social pattern chronically ill people are trying to eliminate.
I would like to encourage a world in which we are all taken at our word when discussing our health and our available resources, regardless of what our baseline of health is.