Lyme Disease and the Spoon Theory

Lyme Disease and the Spoon Theory

If you haven’t heard of the spoon theory, you could be missing an excellent tool for communicating to your loved ones how difficult it is to function even though you may look perfectly fine. This will resonate

with you.

A woman, Christine Miserandino, is asked by a friend as they are chatting at a diner what it feels like to be sick. Christine suffers with Lupus and as anybody with chronic illness knows, you can look fine outwardly and feel absolutely horrible.

So the spoon theory is born. Christine grabs a bunch of spoons from the tables around her and says (I paraphrase) that when people wake up they have a certain amount of energy and don’t have to think about energy allocation. A healthy person just takes their energy for granted and launches into their day according to their desires (or whims).

But for someone struggling with chronic illness, the handful of spoons represent the energy allotment for the day (less spoons depending on how sick a person is). Then for each activity you must remove a spoon. You can see how quickly a sick person must go back to bed – sometimes just getting dressed in the morning will take all the spoons!

You get the idea.

Christine says,

“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.”

“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 my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.”

“…It’s 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”.

For the full story, go to butyoudontlooksick.com

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2 Responses to Lyme Disease and the Spoon Theory

  1. Sapling says:

    I like the spoon theory. It describes the situation very well. I don’t know what’s wrong with me, but I have not been well for years. I’ve been told it’s not Lyme disease, but I also know tests aren’t always accurate. All I know is I don’t have many “spoons” to start with in the morning and I completely know what it is like to have to chose between getting the floor swept, or being able to cook dinner that evening, or doing neither that day. I hate having to explain why I can’t do something by myself or why I can’t do it at all to those who have a normal life. I hate hearing other people talk about their normal lives. I think, “that used to be me years ago.” I feel so lazy and pathetic, but what am I to do about it? I quit insisting that there’s something wrong with me to the doctor. It never helped. It only made me look like a mental case. Sometimes I even doubt myself. Maybe it really isn’t that bad and I really am lazy. It’s the really bad days that remove all doubt from my mind. (For a while anyway.) The spoon theory explains the it so well and even it even helps solidify that what I’m going through is not normal. Normal isn’t having to count spoons. Perfect metaphor.

    • Jenna Seaver says:

      Sorry you don’t have a diagnosis…I did get one but had to start all over again with doubting doctors when I moved to Florida – so I understand the frustration very well! Hang in there, and know that you aren’t alone. God bless – Jenna

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