The Spoon Theory
What the heck is “The Spoon Theory” and why are we calling ourselves “spoonies?” Well, a few years ago, a woman named Christine Miserandino was eating lunch with a friend when she was asked what it felt like to be sick. She asked what it felt like, not physically, but what it felt like to be us... to be sick.
As she tried to gain her composure, Christine glanced around the table for help or guidance, or at least stall for time to think. How do we answer a question we never were able to answer for ourselves?
At that moment, the spoon theory was born. Christine quickly grabbed every spoon on the table; hell she grabbed spoons off of the other tables. She looked at her friend in the eyes and said “Here you go, you have Fibro (or Lupus or any other chronic pain condition)”. Christine 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.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for her explanation, she used spoons to convey this point. Christine wanted something for her friend to actually hold, and for her to then take away, since most people who get sick feel a “loss” of a life they once knew. If Christine was in control of taking away the spoons, then her friend would know what it feels like to have someone or something else, in this case a chronic illness, being in control.
Christine then asked her to count her spoons and explained that when you are healthy, you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. Christine said no and knew right away that this little game would work, when she looked disappointed, and they hadn’t even started yet. You guys know, we’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? Christine also told her to always be conscious of how many she had, and not to drop them because she can never forget she has a chronic illness.
Christine asked her friend to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; Christine explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, Christine cut her off and took away a spoon. You don’t just get up. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make yourself something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” Christine quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Getting dressed was worth another spoon. Christine broke down every task to show her friend how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. We have to see what clothes we can physically put on, if our hands hurt that day, buttons are out of the question...
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. Christine explained that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how tomorrow will be with less “spoons”.
They went through the rest of their hypothetical day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. Christine explained that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. So she decided to make soup, it was easy. Christine then told her that since it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
Her friend began to get emotional and Christine knew that she was getting through to her. She didn’t want her friend to be upset, but at the same time Christine was happy to think finally maybe someone understood her a little bit. You guys get that, right? She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” Christine told her that some days were worse than others; some days she has more spoons than most. But you guys know, we can never make it go away and we can’t forget about it, we always have to think about it. Christine handed her a spoon she had been holding in reserve and said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing we ever had to learn to do is to slow down, and not do everything. We fight this to this day. We hate feeling left out, having to choose to stay home, or to not get things done that we want to. Christine wanted her to feel that frustration. She wanted her to understand, that everything everyone else does comes so easy, but for us, it is one hundred little jobs in one. We need to think about the weather, the temperature that day, and the whole day’s plans before we can attack any one given thing. When other people can simply do things, we have to attack it and make a plan like we’re 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. We miss that freedom. We miss never having to count “spoons”.
Ever since I heard about The Spoon Theory, I’ve used this with my family and friends to explain my life. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand us better. Try sharing this with your family and friends and see how it helps change their perspective. Let me know how this works for you and your family.