How the Spoon Theory Helped Us Discuss AS
While my husband, Keegan, and I knew that he had something going on before being diagnosed, we struggled to articulate to others just how much it affected him. Each day could be different. He'd go from being fairly painless in a day to on the verge of a flare-up the next. Those around us didn't like the unpredictability. "When is he going to get out of a flare-up?" I have no idea. Neither does he.
Finding a framework to communicate what he was capable of in a day helped set up expectations with friends and family. Through some Googling, Keegan found the Spoon Theory. This theory has not only helped him communicate with others, but also helped him respect the boundaries of his body. He's only capable of so much and that's okay.
What's the Spoon Theory?
The Spoon Theory is a framework for those with chronic illnesses to describe how everyday tasks take up a certain amount of energy and effort. It goes like this: every day those with chronic illness wake up with a finite number of "spoons." These spoons are like energy bars in a video game. When they do activities throughout the day, each activity takes a certain number of spoons. The energy bars go down.
Let's say someone has 12 spoons a day. Even before they wake up, that 12 number can be affected by medication, poor sleep, or pain throughout the night. So already they may be at a loss for that day, say 10 spoons. As the day progresses they need to eat, take a shower, etc. and depending on the state of their disease, each activity may take more or less spoons. Resting and sleep replenish spoons. But not getting enough rest or sleep will impact how many spoons that person starts with the next day.
This may seem like a reasonable example for any human, regardless of chronic disease, but what's important is the internal negotiation Keegan goes through when deciding between activities. Does he go out with friends or get a shower? Each may take the same number of spoons. Can he take care of Kaya for the day or do I need to take the day off of work? These aren't typical decisions those of us without a chronic illness have to make, but it is for him. One day taking a shower make take 2 spoons. Other days it takes 5.
Using the Spoon Theory while communicating with Keegan
How has the Spoon Theory helped me and Keegan? I can ask Keegan how many spoons he's at and what's affecting his "spoon status." In addition, he can clarify contributing factors that bring down his total spoons faster. Maybe he's having a lot of brain fog that day. Or perhaps he's suffering from fatigue from a tough night of sleep. Being aware of his energy levels and functional ability sets me up with better expectations for what he can and can't do that day. It doesn't keep me guessing what kind of day he's having.
We're lucky nowadays. You wouldn't know Keegan had a chronic illness just by looking at him. The Spoon Theory brings into the open what's often invisible: his mental and physical state. Because AS often presents itself in ways we can outwardly see, we need tools to consciously discuss what is hidden.
When Keegan and I discuss his spoon status it brings us back to what's really important: keeping Keegan healthy and comfortable. It can be difficult for him to admit some days that he needs help or rest. Having this tool as a way to check in with Keegan helps me anticipate any needs he may have. It means we work together as a team through the best and the worst of AS.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?