In 2003, college student Christine Miserandino uploaded a post to the blog, “But You Don’t Look Sick” titled The Spoon Theory. In the article, Miserandino makes an analogy of her life as a chronically ill individual with Lupus to help a friend understand her daily life. Today, the internet-born term is well known among the chronically ill community and medical professionals.
In recent years, chronically ill and disabled individuals have utilized the internet to find community and spread awareness. Often unseen and personal experiences that were once in the confines of individual lives are rising to the surface through user-generated content.
To explain the theory to those who are not familiar, when a friend asked Miserandino what it is like to live with Lupus during a college dining hall conversation, Miserandino collected a handful of spoons to explain how she rations energy. Each spoon represents a unit of energy and for the demonstration, she wakes up with twelve spoons. She has to carefully decide what to spend her spoons on, with getting dressed using one and eating breakfast costing another. At the end of their theoretical day, Miserandino was left with no spoons to spare for typical ADLs (activities of daily life).
The spoon theory highlights the difficulty of completing ADLs many don’t have to think twice about, in addition to schoolwork or hobbies. Since 2003, Miserandino’s small student blog has snowballed into an online community of individuals who use the spoon theory and call themselves “Spoonies”.
“I explained 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,” wrote Miserandino.
On top of managing symptoms and delegating “spoons”, many spoonies have to find creative ways to endure the constant explanation of their condition. The spoon theory may have started as an aid to explain our lives to those who don’t understand, but it has also developed into an inward-turning community.
There has been recent controversy with the spoonie community in lieu of a Daily Mail article. In the article, journalist Emma James criticizes a demographic of teenage girls for creating online content about their invisible illnesses, saying that the spoonie community “often end up competing with each other for who is sickest” among other statements with little to no research backing up the claims. The article received critique for its ableist narrative on invisible illnesses.
Here is my response:
In 1968 in her book, The White Album, Joan Didion wrote an account of her experience with her chronic migraines. In her essay, “In Bed,” Didion tackles topics similar to the content young spoonies are creating for each other today, long before the word “spoonie” was coined. In the essay, she reviews her reluctance to admit the frequency and seriousness of her condition, the gaslighting and dismissal brought on by peers and medical professionals, and her long awaited acceptance of her condition.
Perhaps nothing so tends to prolong an attack [of a migraine] as the accusing eye of someone who has never had a headache. ‘Why not take a couple of aspirin,’ the unafflicted will say from the doorway”
Joan Didion
My point of bringing in this reference is that we have always been here. Instagram Reels on chronic illness may not be written in the suave gonzo-prose of Didion, but it is the same struggle being expressed. That struggle being the added stressor of an “explanation” that any condition comes with.