Let’s Talk About Spoon Theory

Spoon theory, if you haven’t heard of it before, it a metaphor for the resource limitations faced by people with chronic illnesses. The term was coined by¬†Christine Miserandino, who has lupus, in 2003. While sitting in a restaurant trying to explain the impact of her illness to a friend, she grabbed a bunch of spoons from other tables. Each spoon, she explained, was a unit of energy. Every time she performs a task, it takes away a spoon. When you’re out of spoons, you’re basically done until you rest and your spoon count resets. It’s possible to borrow spoons from the next day, but that basically means that tomorrow you get less done, and spend more time recovering.

As an entrepreneur, project manager, and minimalist, the metaphor appeals to me. It explains the concept of opportunity cost — if I choose to do this, it means that I won’t be able to do that. It’s the same principle that says if you spend money on dining out, you won’t have money for the electric bill. If you decide to go hang out with your friends, you’re not working on your novel. There are choices to be made. In spoon theory, the cost is how you spend your limited energy and functionality.

Chronic Pain

For years I have refused to identify as a person with a chronic illness. There are, after all, people who are worse off than me. I have no visible symptoms, other than a mild limp and an occasional anguished expression on my face. It is easier to suck it up than to deal with people who just don’t believe me, who think I’m making excuses, because I don’t look sick. To make it worse, doctors have never been able to conclusively diagnose the source of my pain. We know that it originates with an accident I was in as a teenager. Yet no one can point to a spot on my body and say “there it is, that’s where the pain is coming from”. I even had a doctor once cite a dubious statistic, that 97% of pain goes undiagnosed. Thanks, doc. That wasn’t helpful on any level.

Yet I have been in pain, every single day, for almost 40 years. There’s an 11-point scale that’s helped me to explain it. 0 is no pain. I am rarely at 0, unless I’m in the hospital and they’ve hit me with some really heavy painkillers. 1 to 3 is mild pain, where you can function with it. 4 to 6 means it’s slowing you down and causing you some impairment. 7 to 9 means your functionality is limited. If you’re at 10, you’re probably in the hospital or bedridden. On an average day, I waver between 3 and 4. The pain is there, it causes me to do some things a little differently, but I can work through it.

I Am a Spoonie

The pain scale doesn’t take the cost into consideration. At level 3 I look “normal”. You can’t tell that there’s anything wrong. But I’m still in pain, no matter how mild, and that saps my energy. When I’m at level 4 to 6, I might be limping or making a face, but it really just looks like I’m tired. Because I am. Ordinary tasks are draining, because the pain makes everything more difficult. No one sees me when I’m at 7 or higher, because that’s when I just stay home. In the corporate world I’d mask it as much as I could, and then go home and collapse. Everything went into the job, and I had nothing left for a life outside of work. That’s one reason why people with chronic illness are invisible.

People with chronic illnesses who have found spoon theory useful refer to themselves as spoonies. It’s a term that united people regardless of what their actual diagnosis is. There are people with autoimmune disorders, pain issues, depression anxiety, you name it. The term is inclusive of people like me, who have never had any official diagnosis but suffer nonetheless. The common threat is that we can only do so much in a day, and we have to make choices. We can be productive, we can appear normal, but everything has a cost. I have decides that I’m okay with self-identifying as a spoonie.

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