The blogger Christine Miserandino, who has lupus, coined the term spoonie in a 2003 post called “The Spoon Theory”. A spoon, Miserandino explained, equates to a certain amount of energy. The Healthy have unlimited spoons. The Sick — the spoonies — only have a few. They might use one spoon to shower, two to get groceries, and four to go to work. They have to be strategic about how they spend their spoons.
Since then, the theory has ballooned into an illness kingdom filled with micro-celebrities offering discounts on supplements and tinctures; podcasts on dating as a spoonie; spoonie clubs on college campuses; a weekly magazine; and online stores with spoonie merch. In the past few years, spoonie-ism has dovetailed with the #MeToo movement and the ascendance of identity politics. The result is a worldview that is highly skeptical of so-called male-dominated power structures, and that insists on trusting the lived experience of individuals — especially those from groups that have historically been disbelieved. So what do spoonies need from you? “To believe; Be understanding; Be patient; To educate yourself; Show compassion; Don’t question”.
Spoonie illnesses include, but are not limited to, serious diseases like multiple sclerosis and Crohn’s disease, but also harder-to-diagnose ones that manifest differently in different people: polycystic ovary syndrome (PCOS), Rheumatoid arthritis (RA), endometriosis, postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndrome, dysautonomia, Guillain-Barré Syndrome, gastroparesis, and fibromyalgia. Another spoonie illness is myalgic encephalomyelitis — or chronic fatigue syndrome — which has now been linked to long Covid.
These illnesses are often “invisible”: To most people, spoonies may appear healthy and able-bodied, especially when they’re young. Many of the conditions affect women more frequently, and most are chronic illnesses that can be managed, but not cured. A diagnosis often lasts for a lifetime, while symptoms come, go, morph, and multiply.
Spoonies find community in having complicated conditions that are often hard to identify and difficult to treat. That’s why a lot of spoonies include a zebra emoji in their social media bios, borrowed from the old doctor’s adage: “When you hear hoof beats, look for horses, not zebras.” In other words: assume your patient has a more common illness, rather than a rare one.
The spoonie mantra might be: I am the zebra.
Although the term is relatively new, the spoonies fit into a long history of women having amorphous, hard-to-diagnose conditions. Since ancient times, women who were diagnosed under the general category of “hysteria” were prescribed treatments such as sex, hanging upside down, and the placement of leeches on the abdomen. Then, in the 19th century, the new field of psychoanalysis concluded that women with hysteria were not suffering from physical disorders, but mental ones. Whether the women’s inexplicable pain was a function of their brains or of their bodies — or of each other (see mass hysteria), or of the devil (see Salem, 1692) — has always been a fraught subject.
And then the internet arrived and created a 21st century version of Freud’s Vienna, in which everyone was always on the couch, perpetually the patient.
Suzy Weiss, “Hurts So Good”, Common Sense, 2022-09-06.
December 21, 2022
QotD: The Spoon Theory
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