If you’ve lived with fibromyalgia for a while, you’ve probably heard about every little, obscure term related to the disease. You’ve probably discussed everything fibro with people in support groups or message boards, from fibro flares to fibro fog to fibro warriors. But here’s one you might not be familiar with. Have you ever heard of the fibromyalgia spoon theory?
See, basically, the idea behind the fibromyalgia spoon theory is that it’s a good way to explain what living with constant pain is like to someone who doesn’t have a chronic pain condition. But most interestingly, it does it really well.
And that’s what makes it so intriguing. After all, what person with fibromyalgia hasn’t struggled to explain what dealing with such a horrible illness is like to a family or friends that just can’t seem to understand it because they have nothing to compare it to. But the fibromyalgia spoon theory makes it a little bit easier for them to grasp. So take a look at how it works.
The fibromyalgia spoon theory was developed by Christine Miserandino at butyoudontlooksick.com, who was in her kitchen one day with her friend when her friend asked what living with lupus (a disease very similar to fibromyalgia that causes chronic pain) was like.
Here’s what happened according to Christine:
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand.
If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try. At that moment, the spoon theory was born. I quickly grabbed every spoon on the table. I looked at her in the eyes and said: “Here you go, you have Lupus”.
Christine knew that to fully explain what is like to be sick to someone who has never experienced it, she had to make it clear how much a disease like fibromyalgia or lupus can take over your life. She had to make it clear that someone with fibromyalgia just doesn’t have the option to live a normal life the way a healthy person does. Here is how she explained it to her friend:
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.
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a neverending 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. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
For the next part of her experiment, she began removing spoons from her friend, explaining that each lost spoon was a lost opportunity; a little bit of energy and freedom that someone with chronic pain has to sacrifice and ration every day. Here is how Christine explained it:
I asked her to list off the tasks of her day, including the most simple. As she rattled off daily chores or just fun things to do; I 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, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. 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.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet.
I quickly took away a spoon and she realized she hasn’t even gotten dressed yet.
The rest of the hypothetical day went on in Christine’s thought experiment. Her friend went to work and was forced to give up spoons for typing too long, or for getting something to eat. By the end, her friend realized she would not have enough spoons left to cook dinner. And by this point, she began to truly grasp what Christine lived with on a daily basis:
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time, I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this every day?” I explained that some days were worse than others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
And if you’ve ever lived with fibromyalgia, you probably recognize that last line a little too well, right? The idea that you always have to hold back from life. You can never truly commit to living because you have to save some energy for the worst case scenario when you really need it.
It’s something everyone with fibromyalgia knows very well, but that few can really find the words to express. That’s what makes the fibromyalgia spoon theory such a useful thing. It gives you a visual and practical way to explain your disease to people who want to understand but just can’t.
It’s such an ingenious way to describe the disease that it has led to people all over the fibromyalgia community using “spoons” as a shorthand to describe coping with their disease, or to refer to each other as “spoonies.” And if you have a family that wants to understand your disease better, or some people in your life that you need support from which you just can’t seem to get, using the fibromyalgia spoon theory is a great way to begin helping them understand.
You can check out the full text of Christine’s theory here if you want to learn more. But what do you think of the fibromyalgia spoon theory? Is it a good way to describe your condition? Have you ever used the fibromyalgia spoon theory to explain the disease to friends or family?
If you have, please, let us know in the comments. And may today be a day with plenty of spoons to spare for everyone around the world living with fibromyalgia.