Chronic Illness, Reflections

I Hate the Spoon Theory

There. I said it. I hate the spoon theory.

What is this “spoon theory”, you ask? It’s a metaphor developed by a woman named Christine Miserandino, who has Lupus. This was her attempt to describe what it means to be chronically ill. In the chronic illness community, it’s become shorthand for describing our conditions, our energy levels, and so on.

The story goes, Miserandino was dining with a friend who was trying to understand what her life was like living with Lupus. She handed this friend a fistful of spoons, and used them to represent the fixed store of energy that she had during any given day. Each task took a certain allotment of spoons, and the message was clear: run out of spoons and you’re done for the day, only to recuperate these “spoons” by resting.

Miserandino concludes:

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
(from But You Don’t Look Sick)

Search Google or hashtags on social networks like Instagram or Twitter, and you’ll find just how incorporated into the chronic illness community this metaphor has become. You may hear people refer to themselves as “spoonies”, or say that they are running “low on spoons”, or some variant of this. In a nutshell, need shorthand to describe your condition? Just say spoon!

There are many reasons that the spoon theory is not for me. One of them has been captured so perfectly by Jennie Smales over on The Mighty in her article, “The Spoon Theory Gave People the Wrong Idea About My Illness“. She makes four (very accurate) observations about life with chronic illness, and where the spoon theory falls short:

  1. You never know how many “spoons” you’ll wake up with. Some days you may have fistfuls and fistfuls. Other days, you may have one. And it’s not predictable!
  2. You may wake up with a fistful of “spoons”, and then poof, they all disappear for one reason or another, or sometimes for no discernible reason at all.
  3. The number of “spoons” any given activity will take up may change from day to day. Some days a particular thing may be easy. On another day, it may take more energy that you can possibly muster. So, budgeting spoons is not really possible.
  4. Pain. The spoon theory only accounts for energy. But what about pain?

The bottom line is this: the spoon theory suggests a level of predictability that is just not part of the experience of chronic illness, at least not for me.

My main complaint, though, is not about the accuracy of the spoon theory, and whether it fits my condition. It doesn’t, but that’s fine.

I hate the spoon theory because it essentializes chronic illness. 

OK. I buried the lede. I know. But, I thought it was important to show some factual areas where the spoon theory falls short before getting to this point. Sorry!

Now, I should say, I’m not sure Miserandino ever expected that her spoon theory would catch on to a point that people would begin referring to themselves as “spoonies”, so this isn’t on her. If we take what she wrote as the metaphor that it is, we’re left with counting spoons, running out of spoons, and the like—a metaphor that still doesn’t quite work for me, but ultimately that I would just shrug off, and certainly not dedicate a blog post to.

But no. The spoon theory has become something that I can’t handle. It makes me into my illness. And I’m not OK with that.

A quick definition: Essentialism is talking in a unified way about heterogeneous experiences. We essentialize all the time when we make statements assigning attributes to a person based on something about who they are. I do it all the time, even about myself. Sometimes, it’s tongue in cheek (like when I make jokes about my anxiety and say, well of course I’m anxious! I’m Jewish!). Other times, it refers to a whole bunch of things that I know whoever I’m speaking with will understand (the subtext speaks loudly).

Of course, we can problematize all aspects of essentialism, but let’s get real—humans like to think in categories. But I draw the line when it comes to essentializing my health.

I am not a spoonie. 

Yes, I need to budget my energy because oftentimes there is a limited store of it. But that’s what I do, and not who I am. Yes, I have chronic illness, but that’s not what defines me—or at least, I hope it’s not!

So, fellow “spoonies”, please excuse me, but I’m opting out.

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