How the 'Spoon Theory' Can Help Us Make Sense of Chronic Illness

Among the chronically ill community, the Spoon Theory is a well-known concept. Originally developed by Christine Miserandino of ButYouDontLookSick.com, Spoon Theory is an analogy to describe what it is like to live with a chronic illness, having to manage pain, fatigue, and other barriers that the able-bodied community often does not have to think about.

While other disabled communities reference Spoon Theory, it was initially developed to describe the experience of living with chronic illness. Disabled individuals, their loved ones, and their caretakers can benefit from understanding Spoon Theory as a way to conceptualize these challenges.

Learn more about what defines the Spoon Theory and the experiences of “Spoonies,” or those who use Spoon Theory to conceptualize, cope with, and understand the challenges that come with their disability.

What Is Spoon Theory?

In her original article defining Spoon Theory, Christine Miseradino states: “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. So for my explanation, I used spoons to convey this point. I wanted something [for her] to actually hold, for me to then take away, since most people who get sick feel a ‘loss’ of a life they once knew.”

Essentially, a healthy person has an unlimited (or seemingly unlimited) supply of spoons that they can tap into throughout the day. A disabled person, on the other hand, has a limited amount of spoons or energy. Running out of spoons could mean that there is no energy left for any other tasks, so it is important to ration spoons and ensure that there are enough remaining for essential tasks. For example, I may have enough spoons to cook a meal and feed myself, but not have enough left over to clean up.

Andrea has a chronic illness and shares that “[Spoon Theory] makes it easier to tell people what my limits are. I can’t always describe what’s happening and what I’m feeling, especially during a pain flare, but my partner knows what ‘I’m out of spoons’ means.”

Emma lives with chronic illness as well and learned about Spoon Theory before receiving some of their diagnoses. “[Spoon Theory] is a very helpful way for me to explain myself and to others my inconsistent and changeable energy levels,” Emma shares.

The Impact of Spoon Theory

Many Spoonies report that Spoon Theory helps them to articulate their disability-related needs in easy-to-understand terms. The abled community may not understand how chronic illness can limit one’s energy or how those limitations can vary from day to day. The Spoon Theory analogy is simple and easy to grasp and raises awareness about disabled communities.

Andrea says that Spoon Theory helps her be more self-compassionate: “It’s not that I’m not trying hard enough. I’m out of spoons, and it’s not my fault.”

Allen, who also has a chronic illness, shares that Spoon Theory helps him explain his needs to abled people. He noted that he sometimes explains his spoons as “spell slots” with members of his Dungeons and Dragons group. He says, “I’ll tell my friends I’m all out of spell slots and need a long rest. They understand this best of all.”

Additionally, the Spoonie community can unite under the common experience of functioning with limited spoons. Because disability can be highly isolating, fostering connection and community is important. Awareness, recognition, and community can be essential to Spoonies’ quality of life, and this connection can be highly emotional and validating.

Life as a Spoonie

Living with chronic illness comes with challenges. Not only do Spoonies experience difficulties related to their illness, but many experience mistreatment, invalidation, and other harmful experiences at the hands of the medical system. This can further drain already limited energy.

Spoonies have to be aware of their energy levels and needs. Emma states that they have to attend to their fluctuating levels and identify patterns to predict their needs. They note, “If I know I have something coming up that’s going to take a lot of spoons, I make sure that I have very little scheduled for the next two or three days to ensure I can rest as much as I need. If I have a sudden drop in energy, I will cancel other commitments and shorten ones that I can’t cancel.”

Additionally, Emma notes a history of burning out every few years due to going beyond their limits. They state that this interfered with their ability to keep employment because, during burnout, “I simply couldn’t do anything.”

Allen shares that he tries to focus on what is “most urgent” and “lean[s] into ADHD” to self-motivate. He states, “I rest when I no longer have a choice and have started accruing points of exhaustion. It’s challenging being so limited in a society which expects so much from individuals.”

Resources for Spoonies

Community and connection are essential for any group. Unfortunately, many community events and public spaces are not accessible to disabled people. Additionally, many in the Spoonie community are at high risk for illnesses including COVID-19, and decreased precautions and a rise in mask bans make in-person interaction impossible. Those with decision-making power in the community can push for accessible, safe public spaces for Spoonies.

Meanwhile, many online communities have emerged for Spoonies. These include:

• #SpoonieChat on Twitter/X. Spoonie Chat is a Twitter community to unite Spoonies and create space to discuss topics important to the community.
• Disabled Voices Feed on Mastodon. @disabledvoices.newsmast.community is a Mastodon feed that elevates Fediverse posts about disabilities by boosting these posts. Individuals can follow the feed to connect with others talking about their experiences.
• #NEISVoid and #ChronicIllness on BlueSky. NEIS stands for No End In Sight. NEIS Void and Chronic Illness are two curated feeds on BlueSky created for the chronic illness community.
• Spoonie Community Groups on Facebook. Facebook has dozens of groups by and for the Spoonie community. There are general groups open to all Spoonies, as well as specific groups for Spoonies that share an interest, job, or other aspect of their identity.
• r/Spoonie on Reddit. Reddit has countless communities, including one specifically for Spoonies who want to connect with their community.

Some Spoonies use visual aids like Spoonie Pins to represent their current capacity and energy levels. This can make it immediately clear to their loved ones how much capacity they have in the present moment.

Supporting a Spoonie

If you are not a Spoonie, but your loved one is, listen to them and the Spoonie community. Many living with chronic illness have stories of being invalidated, told they are exaggerating or faking, or otherwise not believed. When someone communicates that they are approaching their limit, believe them. When someone expresses their support needs, take them at their word and do what you can to help them get those needs met.

Different people feel supported in different ways. Ask your loved one what they need from you. Some might want help self-advocating with the health system, and some might not. Ask, listen, and respect the response, and do your best to be a good ally.