Are you a spoonie?
No, I didn’t mean Moonie. The word spoonie is a catchall term for people with chronic illnesses or disabilities. I first learned it from Rachel’s fantastic blog Do I Look Sick?, and then I started seeing it all over: in other blogs, Tumblrs, Twitter bios and hashtags, even tattoos.
It’s a catchy name, in my opinion, because it’s a bit silly (and therefore a more pleasant self-descriptor than, say, patient or sufferer—ugh) and because it brings together people who share similar concerns but risk never realizing it because of the differences between their particular conditions.
The term comes from “The Spoon Theory” by Christine Miserandino, Christine’s story of explaining to a friend how it feels to live with lupus. Since they were at a diner, Christine used spoons as a visual aid. She collected a pile of them and said that these were her spoons for the day. Everything she needed to do for the day, simple or complex, would require one or more spoons. She then talked her friend through her daily routine to demonstrate the choices and sacrifices involved in living with a limited amount of spoons. There’s a sweet end to the story—click the link to read it in full. (You can also play a demo to get the idea.)
The spoons, of course, are simply a metaphor for energy. Not necessarily a perfect one: After all, sometimes energy just seems to disappear for no reason, which spoons do not, unless they’re being collected in someone’s bedroom awaiting a dishwashing session, or being snuck out from under your nose in a game of Spoons.
Still, the story spoke to me in a way that stories in this genre generally don’t. It perfectly captured how I feel when my friends want me to, e.g., stay out later than I planned: If I do it, I’m choosing to throw away my entire next day because I’ll be too tired to do anything. And if I’m too tired on a Sunday to do my errands and laundry and cook for the week, those things most likely won’t happen at all that week because I’ll be too tired after work to do them. Not to mention that my body does at least a little better with routine, and I hesitate to lose that edge by messing too much with my sleep cycle. To say all that is so much more whiny and defensive than simply, “I’m out of spoons.”
Of course, everyone has their own energy level, and many healthy people—particularly mature people—do think about how best to parse out their energy to avoid burnout. But I, with my lack of nutrient absorption and all that, have fewer spoons than a lot of my healthy 20-something friends do, and more to lose by using them unwisely.
Lately, despite careful GFD adherence, I seem to have even fewer spoons. Avoiding cross-contamination in a shared kitchen adds extra little steps to my routine, all of which take spoons. Gluten fear probably snags a few more spoons. Plus, giving up caffeine has been like dumping an entire cutlery drawer into the trash. (Upside: I’m sleeping more. Downside: All that sleep is really cutting into my writing time.)
Since learning that I have an actual disease with a real name, I’ve cut myself more slack when I don’t feel up to doing something, and my friends have, for the most part, borne it patiently—though it has been suggested that I use being sick as a crutch for laziness or antisociability. Probably in at least a few cases that’s true (and a tendency I need to work against), but overall it’s more that I see this as a time to be extra careful with my health. To use my energy well in hopes it gets me through this healing stage more quickly. To keep up with the things I most want and need to do now, and save some things for, say, six months from now. To be the best spoonie I can be.
Although I identify with the spoonie community (that’s a fun phrase to say out loud), I recognize I’m extra fortunate in that, with just diet changes and no medication, my energy should increase, eventually. Eventually, I should have more spoons. I’m also well aware that I have a whole lot more spoons than a whole lot of people, and that I’m very fortunate and privileged to have the ones I’ve got.
This is the last day of Celiac Awareness Month, and I started the month intending to be more aware, generally, not just celiac aware. Although I’ve had fewer blogging spoons available this month than I hoped (spent a few of them on giveaway-entering), I’m ending it on the same note, aware not just of celiac disease and gluten sensitivity but also the full spectrum of spooniedom. We’re not the same, but we’re similar. If you’re a spoonie, you’re welcome here. Use your spoons as you choose, and no, I won’t steal them from you while you’re focused on the other cards you’ve been dealt.
How do you feel about the word spoonie?
I think this sums it up perfectly: “I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.” Regardless of what illness, disorder or condition one has, we/they are all the same. We all have to make conscious decisions about things most people take for granted.
Yes! She’s really onto something. I thought it was brilliant. Good excerpt choice.
I really like the “Spoon Theory.” It’s a somewhat visual way for healthy people to understand the challenges those of us with chronic illness face. I get told all the time that I don’t look sick (once by a stranger in the grocery store when I was buying GF cereal, very weird), and it’s nice to have a way to explain why sometimes, no matter how much I might *want* to be able to do something, it’s just not happening.
That is very weird! Was it another shopper, or a cashier? (I have hilarious interactions with cashiers where they pick up whatever odd item I’m trying to buy and say, “What is this?” or “I didn’t even know we sold this” and I have to explain, “Um…it’s a butternut squash” or “Yeah, black bean noodles are in Aisle 6.” Not sure that’s totally relevant but it cracks me up every time.)
You just described exactly how I feel, I’m definitely a spoonie. Not really sick anymore (with an actual illness), but far from being healthy, even 6 yrs post cancer treatment. I feel like I constantly have to justify, to myself too, that my spoons are limited and yes sacrifices will have to be made or things cancelled if I decide to stay out late. I think this post just normalized my existance, thank you!
That’s high praise! I’m glad it helped. All credit really goes to Christine Miserandino for the smart metaphor. I recently learned the term FOMO (fear of missing out), and I think that’s one of the hardest parts of managing “spoon” expenditure.
I have used Christine’s spoon theory to explain things myself.
Reblogged this on allergictolifemybattle and commented:
I am a spoonie. I think the Spoon Theory by Christine is right on when explaining our energies.
D’awwwww thanks for the shout out! 🙂
🙂 You’re welcome!
[…] with their illness enough to name themselves after it: diabetics, celiacs, Crohnies, Lymies, and spoonies. The use of these names is vehemently opposed by others who consider them dehumanizing. “You […]