What is ‘Spoon Theory?’
This term was coined by the brilliant Christine Miserandino, which she wrote about in her 2003 essay entitled,“The Spoon Theory.” Miserandino has had her own personal struggle with lupus and fibromyalgia, enabling her to write such a compelling explanation of her truth. Since its inception, Spoon Theory has taken off in incredible popularity, creating movements within communities of people who’ve been struggling to live with their illness that can relate to Miserandino’s analogous pairing of a daily limit of spoons to energy expenditure. These people who identify with the concept sometimes refer to themselves as “Spoonies” as a way to mark their lifestyle to prompt awareness from strangers or fellow spoonies alike.
You see, the trouble with many disabilities and chronic illnesses is that they are essentially invisible. That is, people from the outside looking in might tell them that they don’t look sick or that they appear perfectly healthy. Further, they may expect that because of this perception of such presentation that person would be able to do something a ‘typically healthy’ person would be able to do, causing tension, distress and worsening of symptoms from unhealthy relationships plagued with misunderstanding.
So, how does one proceed to tell friends and family about conditions of their own? How can we help someone we love that is struggling and be supportive of their condition?
What does Spoon Theory say?
Each person has a variance in energy level supplies stored at the beginning of each day.
How they distribute their energy matters, although healthy people or young people may seemingly have an “endless” supply of spoons. At least, it is not something they have to spend much time or effort to think about on a daily basis. On the other hand, those with chronic health conditions are very aware of this limitation and often find themselves planning accordingly. Once you run out of spoons, you’ve reach your maximum output for the day.
Scheduling and planning out the day can help those with chronic illness better allocate their energy and enable them to live better. Even those who do not have chronic illness in the form of a formal disability may benefit from the organization and personal awareness presented by Spoon Theory, especially when it comes to mental health conditions.
Effort is spent on “counting spoons” and determining how many “spoons” each activity will cost.
Different people have different numbers of spoons, and some might tend to have more spoons than others. For example, on a good day a person with chronic illness might have 18 spoons, but on a bad day they may only have 7. It may take them 1 spoon to wake up, 1 spoon to get dressed, 1 spoon to take medication, 2 spoons to shower, 2 spoons to drive to work. By the time they are ready to begin work, they may only be left with 11 spoons on a good day, but on a bad day their spoons would have already been depleted. This can become especially difficult when decisions have to be made between deciding which activities to pursue or not, and it can make a person feel torn when faced with such a choice.
Some days a person might have a different number of spoons, especially if something unexpected happens, such as coming down with an episode of infection or getting a cold. Christine says she always try to keep an extra spoon reserved for this type of situation, just in case.
Spoonies are not lazy.
Those with invisible illness may look okay on the outside. In fact, they may even seem incredibly capable and like they are living extraordinarily well at most times. Why is this?
One reason is because these people have to work extra hard to succeed at tasks than a typical person without their condition might.
Something that seems simple to those without the condition might require a serious dedication of time, effort, energy and resources to complete. While it may not look like it at all times, those suffering from invisible illness are extremely busy. They are often in states of extreme fatigue an exhaustion when they’ve misappropriated their energy supply in order to complete a task or have been placed in an environment or situation that demands them to produce beyond their current capabilities.
The world is under the impression that being busy indicates diligence.
If you aren’t on autopilot running 100 mph at any given second, chances are you’ve likely been called lazy at some point. This belief is rooted in fallacy, as being busy does not mean being productive, and is definitely not an indicator of efficiency. We live in such a fast paced world driven by competition and achievement, that many folks spend hours and hours of busy work, all while in actuality accomplishing very little. Most of the stress that a typical person takes upon them comes from accumulation of small decisions and detailed tasks of little relevance that drain energy and brain power like a vampire. Eventually, this stress will impact overall health and show in physical manifestations that will worsen over time if they are not addressed.
Pointing a finger in today’s world is beyond easy to do, and it is hard for people to change perception and presence of an accepted behavior.
Even other disabled people are guilty of crossing this line. In is in our nature to be judgmental, but it does not mean that it is morally acceptable, correct or incapable of being prevented. The majority of people can control their behavior with will, knowledge, effort, and practice. This is evident in the habits, both good and bad, that we see people form and break each day. The ritualistic nature of a particular behavior is linked to addiction, so it is not without great intervention that people can change their ways. Like all great feats of self-improvement, this requires time and patience to improve. It also requires the understanding that nothing can reach perfection, nor should this be expected, but that improvement is worth undertaking to enhance life experiences and outcomes. Just because something cannot be completely and utterly remedied does not mean we should cease all efforts.
Debates within the disabled community and addressing ableism.
There are usually denial mechanisms, issues with social perception, and influence of stigma at play when it comes to distinguishing disability.
Oxford defines ableism as “discrimination in favor of able-bodied people.” In essence, this is usually a more indirect form of discrimination against disabled individuals and groups on the premise of social stereotypes of what disabled people “can do” and “cannot do.” This prejudice is present across the world, and impacts perception on what abilities, talents, characteristics, or skills a person should have in relation to their status as “disabled” or “not disabled.”
Having a need does not necessarily indicate disability, and the reverse is also true.
“Oh, you can’t do that — you’re disabled.” Have you heard that one before? Recognizing the limitations of someone else's’ ability as a communicated need is not the same as using their illness as an excuse to discriminate. This goes for sub-groups within the disabled community, too. Having a disability is the same as any other person in regard to one important thing: respect and boundaries. Someone’s disabilities will present their own limitations, and are as unique as any other form of personal limitation.
For example, “My bed time is 10 p.m. I will go to bed at this time because it allow me to get 8 hours of sleep that I need to perform my best work tomorrow.” is a basic example of setting a goal, which can become a boundary or limitation should interference arise within a relationship. Limitations and boundaries can be hard or soft, being they can be flexible or rigid — all depending on the needs of the person who has set, defined, and implemented them. For example, if something will give someone a seizure when they are exposed to that certain thing or task, then that will likely become a rigid boundary as a need for health. It doesn’t make a person dramatic, weak, or lacking any sustenance of character because they have a rigid boundary, especially in regard to health; It is no different from saying ‘I am a human, so I need water to survive.’
To those who aren’t living with a disability, please: tread lightly.
One important thing that needs to be said is this: People are more than their spoons. They are not just spoons. If people who are not disabled truly aim to empathize and gain understanding of those who are, please do not flaunt your knowledge that you know all about what they’re like, how they live, or what they feel on a daily basis just because you have a basic understanding of the concept behind Spoon Theory.
“Spoon Theory should be used with the intention to foster relationships and conversations, not create even more distance or divides. A person is more than the sum of their spoons.”
— Samantha Clarke
Put down your pride, and pick up your spoons.
Sometimes, it’s harder to slow down our pace than it is to speed it up. Many people who suffer from chronic disability and illness do not want to lose their sense of independence, and they do not want to appear or feel weak in front of friends, family, or strangers. For those who have not suffered their condition their entire lives, they may also feel they are grieving a part of their identity that they feel they have lost due to their illness. However, pride and denial can often be downfalls for many, and most people do not realize that by denying the condition of their existence they are bringing more pain to themselves and those around them.
To those of you who have been struggling to face your disability, please recognize this: you might want to change how you are, but you can’t. Living in denial will only work to a certain point, then it will become imperative that changes are made to prevent further illness, injury, or death. The best thing you can do in this situation is understand how many spoons you have and adjust accordingly. It is only when we accept that we live by spoons that we can move forward out of sadness and disappointment that is afflicting us.
If you really want to know how someone else is living and take a walk in their shoes, talk to them about spoons. Find out how many spoons it is taking another person to do activities that don’t even cost you a spoon. Talking about Spoon Theory with someone else is a great way to establish connection, taking heart in the nature that we’re all just humans trying to make it work in this chaos we call life.