What on earth is a spoonie? Well I’m glad you asked!
“Spoonie” is a term derived from Christine Miserandino’s Spoon Theory. It describes a person who suffers from some form of chronic illness. Like me! The basic idea is that a healthy person begins each day with an infinite number of spoons (used to represent energy), whereas a chronically ill person has a limited number. Each activity, even the small ones, take up spoons. A spoonie must live each day mindful of how many spoons they have, because once they run out, they don’t get more! It is a wonderful illustration to show how spoonies must carefully consider each activity, and can help explain to our well-meaning but frustrated, healthy friends why we may not be able to go out to dinner, on trips, or why we might cancel plans unexpectedly.
Though it is an oversimplification of life with chronic illness, the Spoon Theory does a pretty good job of explaining to those who are healthy what daily life is like for those of us who are not.
I’ve seen more complicated versions of the Spoon Theory, such as the Battery Theory, which implicates a phone battery that never fully charges instead of spoons. This theory, however, allows for differentiation between different chronic illnesses. Faulty wiring, glitchy software, or a cracked phone screen all represent the unique challenges faced by individuals suffering from various illnesses.
While it may be more thorough, I myself prefer the original Spoon Theory. Maybe it’s because I don’t know what’s wrong with me and wouldn’t know which phone battery-themed issues to use in my example. Maybe I like the way the original Spoon Theory is general enough to be applied broadly, and therefore unites the entire chronic illness community. Whatever the reason, I’ll use “spoon-terms” in many of my posts and wanted everyone to understand what I mean.
Funny story: For a long time, even after I was aware of the Spoon Theory, I didn’t consider myself a spoonie. I guess maybe I was in denial? I kept thinking that it was stress. If I could just figure out how to meditate, I would get better. Then I thought it was a reactivation of Mono. If I just rested enough, I would get better. Then I thought it was Adrenal Fatigue caused by Leaky Gut. If I could just drink enough bone broth, I would get better.
And then, roughly a year and three months after I first began to have symptoms, I realized that I wasn’t getting better. My rest and meditation attempts and bone broth fasts and everything else I had tried had done nothing for me. And in fact, I was feeling worse. It was a hard pill to swallow. It is still a hard pill to swallow.
Without a diagnosis, without my own disease hashtag to brand myself with on social media, I felt that I didn’t belong in the spoonie community. And that frustrated me. Never in my life have I wanted so badly to be part of a group whose common bond was suffering. It doesn’t make sense. But I was (and am) suffering, and suffering in community is better than suffering in isolation.
That was some of my motivation to start The Chronic Caterpillar. Perhaps this is my way of filling the void I found in the spoonie community where the undiagnosed could come to share, commiserate, and lift each other up, just like those who already have diagnoses. Just because we are nameless doesn’t mean we aren’t counting spoons.
I should point out that the spoonie community is welcoming and inclusive. Undiagnosed spoonies aren’t left out of conversations intentionally. I think that many of us are just unsure and intimidated. We don’t join support groups, because we don’t know what we need support for. We don’t post in forums, because we aren’t sure what thread to post on. We are new to the world of counting spoons and just don’t know where we belong.
If you are a fellow undiagnosed spoonie, let me assure you…You belong here.
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