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!

©2010 butyoudontlooksick.com
  • Alison Stevens

    I too have lost “friends” however It is their loss not mine, would I love to have my life back..absolutely. I do not sit at home “thinking poor me or why me” however some people really do not understand “chronic illness” and no I do not wish this on my ‘friends” I just wish that ignorance would not be part of peoples lives. Would I love to go out and have a good night absolutely, however I have realised that lime the man JOB in the bible his so called “friends” were not aware there speech was putring him down So build up each other. Instead of saying to someone block the pain oh get out and walk oh stop feeling sorry for yourself. I would love for around 6 months for all these people to have a chronic illness. Empathy, can only be shown if you literally put yourself in other persons shoes. Thankfully I have friends who know me and know this is not the life I chose. So daily reading and meditating on Gods word and the promises of soon No resident will say I am sick will happen. Paradise earth, sickness of all kinds will be gone. So I stay focused on that and helping people where possible. Ignorance of so many is so sad, but hey I have my faith in a creator, who did not create humans to be sick and die, so soon will be a perfect earth and we will be perfect. Love to live life, and to be a listening ear for others who (feel they are not understood). Keep looking good. Stay safe stay strong.

  • Angie

    Every now and then, I reread this article…… it is great for the person who has a chronic illness. It makes me not feel so bad, when I’m feeling bad….. I remember to not feel guilty and to slow down. Thank you to the author for this.

  • Calum Craig McQuillan

    Really like your analogy, but laughed myself silly, used too watch a cartoon called the tick, and his superhero call was “SPOON “from now on that will be my call,

  • jane holborn

    stephanie i have good days and bad because of lupus, Arthritis ,Crohns,heart problems but i count my blessings every day that i can face most days with a smile because i don’t have … you guessed it i don’t have depression so please do not think of yourself as ” not as bad ” we are all in the same boat so paddle on as you go through life and continue to be grateful for every day but never count yourself as less than someone else

  • Jackie

    Just yesterday someone told me, but you don’t look sick. I smiled politely and said thank you… I wish I had this in my arsenal at the time! Thank you so much!

  • Rosie Dennison Rogers

    Christine Volochuk

  • John Cazander

    This method got me thinking on my own life’s hidden disability and others that I love, thank you!

  • Julianne

    “Because I am usually so buoyant in attitude” That right there is a beautiful (and somewhat melancholy) statement. I have a very happy outlook on life, and laughing is one of my favorite things ever. Because of that joy and happiness I love with, people can just never seem to believe that I love everyday in a constant struggle. They don’t understand why I have to rest between doing seemingly simple things. I was diagnosed with Rheumatoid Arthritis at 12 years old, and a couple other things as an adult, including depression. They ask how someone who laughs some much can be depressed. I guess I just like the way you stated that feeling.

  • http://blackpastellekpopgirl.tumblr.com/ Elle C

    I’ve been suffering since I was about 12, received a diagnosis at 16 (Now 22). I was home-schooled during high-school and couldn’t finish college because things got worse. I was lost and had given up on everything. When I found this last year, I felt that everything I had gone through made sense. Since taking on the title of “Spoonie” I have learned a-lot about myself and met many amazing people who I feel connected to. I’ll never be able to thank you enough, but I am truly grateful.

  • Johanna Eldridge

    I have tears running down my face as I am overwhelmed with relief and grief and unsorted emotions.
    I have lived with several unpredictably debilitating conditions (including asthma, reactive hypoglycemia, food sensitivities and adrenal maladaptation) as the mother of 4 high needs children for over a decade. To have a simple paradigm to explain to my kids why I can’t do all the things I had hoped to is a precious gift.
    To be able to remind me that I really am doing the best I can with the resources at hand is perhaps even more important.
    Oh my word. This descriptor is so amazingly clear.

  • Italiangirl13

    I have used the spoon theory for a while now to people that just see me as looking like I’m not sick. This is the best way to show people what we go through on a daily basis. I have Crohn’s/UC disease, plus fibromyalgia. I’ve lost friends over this, because to them I look fine. Yes I have good days, but I can’t promise I’ll be ok the next day I’ll be ok. I may be in bed all day. I’m always fatigued, no matter how much I sleep. Thank you so much for sharing the spoon theory, to help spread awareness of invisible diseases. I would love to post it on Facebook, and other networking sites to get to more people, in hopes people will stop judging, and start understanding. Is it ok if I post your story, or parts of the spoon theory?
    Also for people dealing with Crohn’s and Colitis, there’s a great support group website called mycrohnsandcolitisteam.com
    You’re surrounded with people that understand what you are going thru, and you feel you’re not alone.

  • Marle Fenno

    This is great. I learned much the same premise long ago with a limited supply of marbles as my units of energy. But this is such a simple and graphic way to share. After all how often is a real bowl of marbles available. Let alone the concept of losing my marbles. ;)

  • Jill Stanford

    THANK YOU THANK YOU THANK YOU – now I can explain what Post-Polio Syndrome means to people who say, “But you look like you are doing so well!” No – it cost me a spoon or two . . .

  • amandameezer

    People like Bob don’t bother me. They don’t understand because they don’t want to understand. I have systemic and pulmonary Sarcoidosis and I totally get the “spoon theory.” It’s very descriptive. I might just start thinking in terms of spoons now when I run out of steam which is what my illness does to those who have it.

    I have had to cut people like Bob out of my life because they don’t understand. When I have to say I am sorry I am tired it’s time for me to go home and they take it personally believing I am really saying I don’t want to be with them any longer, when I have to tell them I can’t come out to play today because I don’t feel well, when I have to tell them it’s not you, honestly, it’s me and they just don’t get it, I have to let them go.

    Some of these have been old friends, sadly, some of them have been potential new friends. Fortunately, though, there have also been friends both old and new who have understood and have been okay with it. They are the ones who make it worth while to keep trying.

    Bob says he thinks telling people who are sick is wrong because they don’t want to be told they look sick. No they don’t, but they don’t want people to believe if they don’t look sick they are well because that places expectations on them they cannot live up to. He can never imagine how frustrating that is to hear.

    It’s like someone noticing a person has no right arm asking the person missing the hand to write with his right hand. But it’s clear there is no hand. That person without the hand is not going to be happy with that request.

    With a chronic illness, when a person doesn’t look sick you can’t tell from the outside, but from the inside that person knows he or she is ill and can’t do many things. Hearing “But you don’t look sick,” can be very frustrating and defeating. Maybe it would be better to appear sick so that people could tell something was wrong. Maybe that would satisfy people like Bob.

    Not everyone has to walk a mile in everyone else’s shoes but if they don’t want to understand, that’s okay. But it’s a bit foolish to post on a discussion board of like-minded people regarding a subject of which you have no absolutely no knowledge and base your comments on speculation only.

    Ms. Miserandino has every right to sell her posters or books or whatever. She has to pay for the making of them. People have the right to buy or not to buy them. She has posted her story on the Internet. There is nothing to stop people from repeating it if they want. I don’t see any scam in that as Bob suggests.

    I don’t understand why Bob wound up coming to this website in the first place. He hasn’t a chronic illness, he has neither empathy nor sympathy. He can’t relate.

    As the Good Witch of the North said to the Wicked Witch of the West, Bob, “Begone, You have no power here!”

  • https://wizzley.com/authors/melanie_a917/ Melanie Andromidas

    Reading this changed my life so much. I have shared it with so many people. I wrote an article recently about it, with a link to this post and your store. :) I thought you might like to see it. https://wizzley.com/dealing-with-chronic-pain-the-spoon-theory/

  • jackie

    And your website is proving what?

  • jackie

    I was diagnosed with fibro over 20 years ago…gave up a job I loved.Over the years it has waxed and waned.Last year,I had a very long surgery and the medications messed up my digestive system.I started severely restricting what I ate,kept getting sicker and sicker.Because I was a little overweight,not one doctor was concerned.Just to be brief,I saw a dietician and found I had not been eating enough for years….within days of upping my calories….to 2500 a day..I slept better and have much less pain.I have more energy….it might be worth looking at how much and what you are eating…give it a try for a couple of weeks…what do you have to lose?

  • Audra Snayko

    Then you clearly don’t get it Bob. There are days where I start my day with almost zero energy, barely able to get out of bed. Then it’s work, dinner, dishes, time with family. Every single day I have to make choices about which of those things I can accomplish because it’s VERY rare that on any given day I can do them ALL. you clearly don’t suffer from a chronic illness otherwise you would understand the concept. The more disturbing part is that you’re trolling someone else’s website bashing people for something they have no control over. If I followed your logic above “it’s called energy. You start the day with a certain amount of energy and it runs out then you sleep” I’d be asleep by 2:00 PM every day. Get a clue…..and a life.

  • Stephanie A. Brown

    I have depression and ADHD, in addition to some visual impairment. This is not “as bad” as many other ill or disabled people have it, and I’m grateful for that every day. That being said, this analogy still greatly resonated for me and I really hope I can use it to explain things to another person someday. Thank you.

  • The March Hare

    This is great. It applies to my life as well. I, at 75, just found out I am autistic and now understand all the problems I have struggled with my entire life. To top it all off, I smoked most of my life and now have to live with COPD, which severely limits what I can do. At times tying my shoes results in my having to quickly stand up and catch my breath after the first shoe, then tying the second and doing it again. I have curtailed so many activities I have previously done. I thought autism controlled so much of my life, now with COPD, it is even worse. This is a great analogy.