by Anjali Balakrishna
photography courtesy of Minh Anh Nguyen
Wake up and manage to get out of bed. There goes one spoon. Shower. There goes another spoon. Get ready and make breakfast. Go out into the world, socialize and do some homework. The rest of the spoons vanish.
A day for someone with chronic illness is spent prioritizing daily tasks. Even the most minimal and menial of work can be strenuous; something as simple as doing dishes can wreak havoc on a sensitive body. People that do not suffer from or know someone with chronic illness or disability may not consider the daily struggles others endure.
In 2003, Christine Miserandino wrote a piece on her website recounting how she explained to her friend what living with Lupus, an excruciating autoimmune condition, was like. Through this conversation, the spoon theory was born.
The spoon theory explains in simple enough terms how a person with chronic illness goes about making decisions for their day. You start off with around 12 spoons, and each activity or action costs you one, maybe more, depending on the day you are having. You have to use them wisely.
There are plenty of people who apply this analogy to their lives; they are called spoonies. Sometimes at first, though, you may not realize just how much of an impact a health condition can have on your body. Once you understand, though, something like the spoon theory can put it into perspective.
“I didn’t think I fit into the spoon theory because I have more energy than most people with chronic illness, but I learned that I do in fact fit into it because of how little I can actually do compared to everyone else I know,” Gloria* said.
It truly does make a world of difference to have some scale of reference to share with others. Tyler Dunn, from Missouri, first heard about the spoon theory when he was young and his health began to deteriorate.
“My mom did a lot of research to try to find answers and help online,” Dunn said. “She found communities and forums dedicated to chronic illness and the like and picked it up from there. She told me about it as a way to describe the struggles of my condition to my friends and family.”
Dunn reported only discovering the extent of his illness about a year ago, when he began his own research.
Having a diagnosis alone does not always help clarify the extent to which it affects the body. Explaining to others in medical terms can often come across like a foreign language, or they simply won’t be as supportive as necessary. For Dunn, spoon theory acts as a useful tool.
“My extended family always had issues understanding my condition, especially before we had a diagnosis,” Dunn said. “So, it definitely helped get them to understand I wasn’t just a lazy kid; I was a lazy kid with several conditions.”
Dunn suffers from different illnesses, one of which is a form of POTS (postural orthostatic tachycardia syndrome) that increases adrenaline. After these surges, he crashes. The spoon theory has helped him learn to pace himself.
“It helps because ADHD and chronic illnesses are two conflicting personalities,” Dunn said. “When I do something, I want to throw everything I’ve got into it and just hyper focus. But, with chronic illness, I’ll just burn myself out doing that, so I have to find a balance.”
Balance is often a key component to any spoonie’s life. Not everyone is built equally; therefore, we should not try to overcompensate for what we cannot or should not be doing. It is a way to acknowledge limitations while being kind to the body. This is something Jess Mayhew, from London, has come to learn.
“I think I’ve started applying them to myself more so now [that] I have a diagnosis because I allow myself to be as sick as I am, so I think of it like I’m taking time to recharge,” Mayhew said.
Similarly, Gloria* has found out the hard way how important it is to keep a check on how many spoons are left for a day.
“I never really realized that I am so limited in my spoons,” Gloria said. “For example, I did a color run — which was a three-mile walk — then I went shopping with my friends and went out at night. I had used up all my spoons for that weekend and could barely move.”
Besides the spoon theory, there are other exemplars people like to apply to their life, such as a car running on empty. Mayhew has her own.
“I prefer the low battery one,” Mayhew said. “Where ‘regular’ people have 100 percent when they wake up in the morning, disabled [and] chronically ill people might have more like 20 percent.
Getting others with inexperience to truly understand can be a nightmare for those with disabilities and chronic illnesses. Thankfully, something like spoon theory can abet those situations.
“It’s really useful to use things like that to explain to people why I don’t have the energy some days to do certain things,” Mayhew said. “I think it just makes the information you’re trying to give people easier to grasp; it gives it a measure rather than just [saying] it’s a bad day.”
The spoon theory, as informally as it began, has revolutionized the discussion of chronic health and disability. It makes understanding more accessible to all parties in the discussion, and it has created a community. Spoonies rejoice!
*Some names have been changed for privacy reasons