Have you heard someone with a chronic illness mention the word “spoonie”? This actually refers to an incredibly important metaphor that allows chronic patients to describe their illness and the challenges they face to another person. It can refer to any individual who suffer from a chronic illness. The term “spoonie” originated from The Spoon Theory, a blog post written by Christine Miserandino. Essentially, the Spoon Theory illustrates the challenges that someone living with a chronic illness faces every day. Each day, spoonies have a limited amount of energy and ability. This energy is represented by a handful of spoons. Activities of daily living take away “spoons.” This makes it harder for chronic patients to keep up with daily tasks and responsibilities.
What is the Spoon Theory?
In 2010, Christine Miserandino was a college student living with lupus. She and her best friend were sitting in a diner, chatting about life in general. When Christine pulled out medicine to take with her food, her friend asked what it was like to have lupus. Christine was shocked. She recalled her reaction:
“I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?”
As anyone living with a chronic illness can attest, taking medicine, crying in pain, or struggling through the simple tasks of life are hard enough. If the illness happens to be “invisible,” even good friends and family can have a hard time truly understanding what it feels like. Invisible illnesses are those that are not readily apparent and include things like fibromyalgia, lupus, chronic pain, depression or other mood disorders, and chronic fatigue (among others).
What does spoonie mean?
Christine realized that her best friend needed a concrete way to understand what her daily struggle was like. The Spoon Theory was born.
If you assume that the day starts with ten spoons, then a morning for someone working and living with a chronic illness might go like this.
Wake up and get out of bed. This may be challenging because chronic pain makes an early start difficult due to poor sleep and the fact that many pain conditions are worse in the morning.
Brush teeth and get ready for work. This should actually be more than one spoon, as there are numerous actions that make this incredibly challenging, including all of the bending and stretching involved (drying feet, holding one arm up for two minutes to brush teeth). Getting dressed is another challenge, especially if clothes have multiple buttons or difficult closures. Many people with chronic illness have to resort to easy-to-pull on clothes with zippers and no buttons.
Make breakfast. Many medications for chronic illness must be taken with food, so breakfast is essential. Trouble is, with so much activity already, a spoonie may be feeling tired to the point of nausea already. If there are children in the house to feed before school or lunches to pack, this part of the day can consume many more than one spoon.
Drive to work or doctor’s appointments. Those who don’t have a chronic illness take for granted the act of driving, but a spoonie has to consider all steps involved, from actually getting into the car (Is the seat too high? Then lifting their bodyweight into the car. Too low? Easing into the driver’s seat engages muscles that may already be exhausted) to sitting up straight and focusing on the road. While medications may ease symptoms, they can also cause drowsiness, making attention difficult.
Walk into appointment or work. Those with invisible illnesses are often eligible for handicapped car tags but may choose to forgo those. Because there are no crutches, canes, walkers, or wheelchairs, a spoonie may be subjected to nasty looks from those who see them park. Rather than d