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My Improved Version of the Spoon Theory for Those of Us With Chronic Pain and Depression

About a week ago, I tried to get out of bed. I cried out as I tried to sit up and unbelievable pain reverberated up and down my spine. My lower back paralyzed my movements, and tears welled in my eyes. By the time I was sitting up and I had managed to swing my legs out of bed — not that I “swing” anything these days — I was out of breath, crying quietly, and yearning to just lie back down. It took me 10 minutes to stand up, and I did that with the help of my husband. I was sweating and ready to go back to bed. However, the day was just starting.

A few years ago, someone introduced me to the Spoon Theory as I was trying to apologize and explain why I could not attend yet another event, an outing which had been planned for some time. When I read “The Spoon Theory” by Christine Miserandino, I was struck by two things: how much I could relate to the things she was saying and at the same time, how inadequate the metaphor of spoons was to my life. It has been years, and I still struggle with my complicated relationship to the Spoon Theory. I kept coming back to the fact that I wish I had “spoons” from which I could deduct. However, my energy and ability levels are more like a sieve, in that I’m constantly being drained. I’ve been wracking my brain for years on a suitable metaphor, and this is what I’ve come up with: my energy and ability are like a gas tank without a gauge. Frequently and understandably, I find myself on “E.”

The Spoon Theory posits that people who are sick have to make choices or conscious decisions about what to do with their day in ways that others do not. Each choice costs something, takes a toll, impacts future decisions — costs a “spoon.” And once you’re out of “spoons,” that’s it. It’s about feeling a little in control when something else (chronic illness) is controlling you. The problem with the Spoon Theory is that it’s too tangible and, in my opinion, it’s inaccurate for someone who lives with chronic pain or depression or, in my case, both. My family and friends think that I can sleep to replenish “spoons” or that if I don’t do one activity, I’ll have a “spoon” to do another. Other people have written about this, too, but I haven’t seen anything that presents a viable alternative to the Spoon Theory.

My metaphor of the gas tank is different because unlike paying a toll to do a certain activity, I’m being drained of my energy and ability unceasingly. I make the metaphor of a gas tank for a number of reasons. For one thing, when I think about my car and where I need to go, I don’t always pay attention to the gas tank with every trip I take. For another, it’s almost impossible to plan the gas mileage/usage for my daily trips (I live in Atlanta, where traffic is as common as air). Additionally, every time I turn on the car, I lose some gas. When I idle with the car on to blast the AC, I use gas. Every trip takes gas. I’m constantly burning up fuel. The same goes for me and my energy and ability.

The Spoon Theory doesn’t work for me because I get exhausted for just being. I don’t have “spoons” that can count out what I can and cannot do that day. Everything takes a toll. Just being up and out of bed costs energy. Talking to my husband, playing with my dog, convincing myself not to go back to bed all costs me something. And those aren’t even the “hard” things, like showering, cooking, cleaning the house, teaching. Staying awake costs me energy — it “burns gasoline.” Sitting instead of lying down, lying down instead of taking a bath, taking a bath instead of sleeping — all of these things cost me, often in unforeseen and unpredictable ways…

Because I suffer from chronic illness, chronic pain, and depression, which can be intertwined, I leak energy throughout the day whether I nap or not, whether I get a full night’s sleep or not, whether I “take it easy” or not. My leaks are not quantifiable; they are cumulative. It doesn’t take a “spoon” or two or three to do my daily activities. I am operating in the dark, with no guarantee that the energy I exert is going to be worth it for the next step or the next part of the day.

Here is an example. I was out with my husband and a couple of friends yesterday. I had slept the whole day, with the exception of about two or three hours. When I awoke, I didn’t know how much energy I had in me, but I knew I wasn’t driving the car on “full.” We met at 5:15 p.m. More people, friends of my friends but strangers to me, arrived by 6 p.m. Suddenly and unexpectedly, I had to interact with people differently than the way I had planned. I had to smile more and be more personable. By 6:30 p.m, I was feeling drained and just wanted food. By 7:30 p.m., extreme fatigue hit me and I couldn’t even finish my burger. I had to excuse myself by 8 p.m., and my husband had to drive home because I was too fatigued to do it. When I got home, I felt very tired but was hungry because I hadn’t finished my food. I contemplated heating up leftovers, but I decided instead to fall into bed. I slept for a solid four hours and woke up wide awake and, as usual, in a lot of pain. My new day was just starting.

Now, as you imagine the gas tank, imagine that you don’t have a gas gauge. Pretend you don’t see your gas gauge. So you’re driving around not able to see it and you’re filling up your tank not able to see it. You know that starting up the car takes gasoline, as does driving from point A to point B… so does idling in the car at stop signs, at red lights, in traffic…

I’ll give you another example. Today, I was writing and my blood sugar suddenly dropped. I recognized the signs and was able to get sugar in me, but the effort it took to do this was intense. My body was convulsing, my hands were shaking, I felt a great weakness in my limbs and a heaviness in my body as I was on the verge of passing out. No warning, no exerting activity. Just sitting on the sofa writing one minute and then the feeling of spinning into darkness the next. This was not a “spoon” that I gave away. This was the constant drain of the gas tank, only I hadn’t realized that my fuel was almost at “E.”

I think the Spoon Theory has its merits, but I also think it doesn’t address what chronic illness is like with chronic pain — where you’re in a constant state of distress because of the pain — and depression — which can be influenced by the chronic pain and vice versa. I suffer from a multitude of chronic conditions, and using the Spoon Theory gives people the impression that I simply need to rest to replenish my spoons or that if I give up one activity, I’ll have a spoon enough to do another activity. In reality, I am constantly draining energy. The Spoon Theory gives the illusion of predictability, even as it disavows it. My alternative shows that there is no predictability. I listen to my body and she tells me what I can and cannot do from hour to hour, minute to minute. I cannot rest and reset.

Getty photo by David-Prado