People have seen that I identify as a spoonie, but don’t know what that means. I reference it in posts about self-care. My tweets sometimes have related hashtags. I want to clarify what that term is, how it applies to me, and why I think having it as part of the public conversation on chronic illness is important.
Spoon Theory was first described by Christine Miserandino in 2003. For a full explanation you should go read her original post, but I’ll sum things up here. When you’re living with a chronic illness, you have finite resources to get through the day. It could be energy, or a threshold of tolerance for pain, or the emotional fortitude to be around people. That resource is represented by spoons, because Miserandino was in a restaurant when she was explaining this to a friend. You only get so many spoons at a time. Nearly everything you do costs spoons. Based on your exact illness, some things cost more spoons than others. When you’re out of spoons, you’re done. You can’t do any more.
The people who live with this reality call themselves spoonies.
Why I Identify as a Spoonie
This metaphor has become important, because it’s a way to explain “invisible illness” to people who don’t understand. We hear “but you don’t look sick”, or get called out for having a job and a social life. Because we appear to be as functional as anyone else there’s an assumption that we’re faking, or seeking attention, or looking for pity. You’re seeing us when we’re spending our spoons. We’ve budgeted to use our resources on those activities. What you don’t see is that we then go home and collapse. We spend the weekend recovering so we’re able to go to work on Monday. Even getting out of bed in the morning can have a cost.
I’ve suffered from chronic pain since high school, when I was involved in an accident. It never goes away, although the intensity waxes and wanes. Over the years I’ve learned to ignore it and work around it. Most of the time it’s background noise. As I’ve aged that’s become harder to do. Along the way I’ve also picked up arthritis and a battery of anxiety disorders. More recently, I’ve added executive function disorder to the mix. Yay.
Throughout my life I have had success in a variety of jobs. I’m a productive person, an entrepreneur, and manage to get the bills paid, keep the house in order, and stay on top of things. I’m not bedridden or housebound. But things have a cost. I know how many spoons certain things take, so I need to plan. It’s another reason why I’m a bullet journal enthusiast, as well as a pragmatic minimalist.
How the Term “Spoonie” Helped Me
Having a simple metaphor I can use to explain my issues to other people is handy. People seem to get it, where other attempts to describe it have failed. They understand that it’s a zero-sum game, that it requires choices. Yes, I can do this, but if I do then I can’t do that. The more people understand, the easier life become for spoonies everywhere.
The term has helped me to better understand my own limitations. Since embracing the term I’ve become more productive because I plan my activities more realistically. I have a better awareness of how much I can reasonably get done in a day, and how far I can push myself. It’s helped me to gain awareness of how long it takes me to recover when I overdo it. That means that I have fewer ups and downs, and more continuity. There’s less guilt over things left undone because I ran out of spoons. I feel better and have more energy, because I’m not trying to be superhuman.
Probably the most impactful result of having a term to use is finding community. Knowing that other people are going through the same thing, that there are people who can relate, helps in ways I can’t begin to describe. It doesn’t matter that their illness isn’t my illness. They understand being exhausted and overwhelmed. They’ve heard the same hurtful remarks. We can share tips and tricks, coping mechanisms, and just generally offer one another moral support. I identify as a spoonie because the term makes me feel like I’m not going through this alone. I share this for the benefit of other spoonies, so you know that you’re not alone, either.