The Spoon Theory written by Christine Miserandino

 

Please take the time to read Christine Miserandino’s personal story and analogy of what it is like to live with sickness or disability.

Click HERE to download “The Spoon Theory” in PDF format.

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

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; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

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.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I 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. 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.

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 your self 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. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her 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 hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the 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. I summarized 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. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said 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.

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 everyday?” I explained that some days were worse then 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.”

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”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. 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 me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

*We have English, Spanish, French and Hebrew translations of “The Spoon Theory” available.

You may NOT publish or re-print this article without the written permission of Christine Miserandino and ButYouDontLookSick.com. Thank you.

Now you can purchase small and large poster prints of “The Spoon Theory” from our Online Store! These posters will make a perfect “get well gift, or friendship/ I understand gift.” We also think it would make a perfect addition to any doctor’s office, or support group meeting room.

The Spoon Theory Large Poster – $22.99

The Spoon Theory Small Poster – $18.99

Most importantly, get one for yourself!

©2019butyoudontlooksick.com
  • Lorraine Rock

    I have had diabetes for the last 20 years, my father and his brothers all passed away before 60, due to complications,from this chronic disease, and both his parents died from it – his mother at 32. I am sick and tired of the articles which label diabetes as a “Lifestyle Disease” when it is well known that heredity plays a major part. (As though we willingly inherited the metabolic syndrome which actually causes it!) I also suffer from the late affects of Polio, which causes weakness and chronic pain, and I am a real type A person, who does not know how to quit, so I frequently use up all my spoons in a day. I am going to share this link with my husband, who after 25 years together, still doesn’t get it! He sees me take 9 medications a day to stay healthy, but that doesn’t do it, maybe this will!

  • Suzie MacDonald

    Thank you so much for this analogy that represents so many of us on disability that people have said, “you look fine to me”. I would love to share this on my FB page as it’s very important for others to understand what our days are like. I suffer from failed back surgery syndrome, which I had never heard of until I had 2 back surgeries that failed. I have chronic pain that limits me and will use your spoon story to help others understand.

  • Cynthia M

    I’ve done my own research, and funny enough all the articles claiming vaccines cause chronic illnesses are on anti-vaccine sites with zero corroborating evidence. Isn’t that odd?

  • Cynthia M

    You can’t publish or reprint it, but you can link to it on your FB page. That way you’re still putting the info out there without breaking copyright or claiming ownership. 🙂

  • Barbara Farrer-Taylor

    I have just read Christine’s article on “The Spoon Theory”. At the end it states

    “You may NOT publish or re-print this article without the written permission of Christine Miserandino and ButYouDontLookSick.com. Thank you.”

    I would like permission to share this article on my Facebook page as I suffer from Fibromyalgia and I think (hope) it will help people I know to understand better what it is I go through and how I feel all of the time. Mostly, as Christine said. people just “don’t get it”.
    Thank you
    Had problems with the code on official site to send this. I know I typed it right but it continued to tell me it was incorrect…

  • Catherine

    Thanks Christine! What a good article. I’d heard of spoonies before but thought it was some trendy thing. But it explains perfectly how it is to be me and run out of energy/ health regularly. I haven’t got lupus but chronic fatigue instead.

  • Esmée La Fleur

    Good way to explain life with chronic illness. Thank you.

  • HerMeowjesty

    I would argue that healthy people have spoons too, only that they have something like 100 to a chronically ill person’s 12. Enough that they don’t have to think about the spoons they’re using, but obviously everyone is going to hit a wall at some point. You can only pull so many all-nighters before running out of spoons, after all.
    Not to detract from a chronically ill person’s experience, though. Having to plan for 12 spoons is wildly different than 100 you don’t even think about.

  • Jenn

    Rachel, you’re such a good nurse! The fact that you read this in your spare time and took it in and have empathy and are using it with your patients…. We all need more nurses like you!

  • Jenn

    Oh, that would be so frustrating! People always compliment me on my funky jewelry, and then I tell them I’m wearing 18 ring splints on my fingers to keep them from dislocating. Or they say, “Oh! I can tell you’re having a good day today!” and I’m like, “Nope, just wearing makeup. I feel terrible.” Looks can definitely be deceiving!

  • Jenn

    Right?! It is such a good way to teach friends what living with a chronic condition is like. And if your friends don’t ever understand (or try to understand) what you’re going through, it makes it really hard to keep being friends with them. I’ve cut a couple people out because after 30 times of explaining it to them, they STILL say “you’re so lucky you can just lay in bed all day!” Like I wouldn’t give ANYTHING to get up and about!

  • Kristen Collins

    The Spoon Theory just saved my friendship! Thank you for this! It’s the perfect explanation of Lupus!

  • Hello. The spoons is great. I use this analogy for my chronic pain and my daughter uses it for the mental stress her autism causes. Finaly we have a way to communicate to the world about our struggle.
    “Y’all got any of them…sniff sniff… spoons?”https://loseweightandmass.blogspot.com/

  • Paul

    Thankyou so much for this I was finally diagnosed with lupus this year incorrectly with ms the last 10 years..I have been sick since I can remember and am now 45yrs old..I wish i had the words to explain my gratitude for your theory I feel as though a door, a way to explain this to my doctor’s my family everyone really God bless you.✌????

  • Irma Williams

    Use google translate.
    Copy & paste ????

  • https://butyoudontlooksick.com
  • A friend sent me this link. I have fibromyalgia and no one has ever expressed my feelings as completely as this. Please, I would like to translate this text into Portuguese. How can I help?

  • Oh dear, this brought tears to my eyes. I have fibromyalgia and I know how it goes with people who are healthy.
    I recently went back for the first time in months (winter is over and that means less pain) to my yoga studio. I talked to the manager there, because we are friends. I told her how difficult it had been for me as of late to just make it out of bed. I apologized for not having been in touch.
    She chose to tell me that “powerful people don’t make excuses. They are the master of their own destiny.” It took me the entire class to think how I’d respond to her, before I attempted (again) to explain how chronic pain, chronic fatigue and fibro fog feel like. Guess how many times I’ve gone back to yoga since then? Yes, you guessed it, zero!

  • Juniper Bartlett

    I just found out last summer that I am autistic. Apparently, we have spoons too. Thanks for the explanation.

  • As I Am

    I am glad I came across this. I wasn’t looking for anything health related, but here I am. I don’t have Lupus, but I am not normal, either. Thank you, Christine. I sent this to my Mom. I think it’ll help her understand my life better.

  • AN

    I learned this theory from a patient a few years back and I’ve always used it with my auto immune/chronic pain patients to discussed energy conservation as I am an occupational therapist. However I know find myself on the other side of it being diagnosed with an auto immune disease of my own. I re read this and honestly I needed to remind myself to slow down because I so often push myself and pay for it later. I’m hoping this will also help my fiancé understand what I am going through.

  • Jenny Louise Johansson

    Hello. The spoons is great. I use this analogy for my chronic pain and my daughter uses it for the mental stress her autism causes. Finaly we have a way to communicate to the world about our struggle.
    “Y’all got any of them…sniff sniff… spoons?”
    Thank you. Jen

  • Brandy Lighthall

    Hi! I attempted to use the “contact us” setup, but my computer wouldn’t show the code, so I was unable to copy it.

    Here is my message:

    I am so very thankful for your spoon theory; this has reached an amazing amount of people.

    I am making a spoon budgeting planner for personal use. I am considering offering it–possibly for free–to others in an effort to help them plan their days (in a spoon-considerate way). All of this is founded on your Spoon Theory. I was wondering if

    #1 this was an okay thing to do and

    #2 if I could publish (and of course give you credit by name and website) your article in the planner itself.

    Thank you for considering, Brandy

    I can be reached at [email protected]

  • kristineskocpol I do not agree

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