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
  • Goswellen Arellano

    Why do you want to convince people you are not healthy? I started a discussion about this today. https://www.facebook.com/fibromyass/posts/821335981279437

  • Goswellen Arellano

    Everybody does this, not just sick people.

  • Goswellen Arellano

    Yeah because people who are not sick have unlimited time and energy.

  • Goswellen Arellano

    This theory seems to insinuate that people without chronic illness have unlimited time and energy. Everybody has to count their spoons. It seems to insinuate that the time of someone with chronic illness is more precious. Everybody has limited time and energy. More about this here. https://www.facebook.com/fibromyass/posts/821335981279437

  • Jennifer

    I love how you use your precious spoons to inspire and help others understand disability. You’re not even being selfish with them…

  • Carole

    This is brilliant…I call it my increments…everyday I have to do things in increments and pick and choose what is most important for me to do that day. Life as I knew it is gone. Chronic pain due to 7 back surgeries where something went terribly wrong and ended up with nerve damage to both legs/feet, they also feel now there may be vascular issues with them and I will be going in for my eight back surgery and 2nd fusion. The surgeries I received 3 major in less than 7 months changed my life forever. I want my life back and it will never happen. I love this story as I feel I’ve lost my friends, they don’t understand why the fun party girl I used to be lays in her bed most days and only does housework, etc. in little increments. I have to get up at least three hours early if I have to be somewhere it takes me so long to get ready, then I’m sweating and wore out before I even get out the door. Then it’s a pick and choose what to do and how much pain am I going to suffer from doing it, that’s a big deal maker in what I choose to do. I know I’m going to suffer no matter what I do, is it worth it or not? It’s no way to live and in hopes these new findings and surgery may help me a little. If I could have less than half the pain I have now I would be so much happier. I know the nerve damage will never get better so knowing I have to live with at pain for the rest of my life is super depressing. I’m in hopes that some of this is vascular so I have answers. I feel for you all. I sometimes wonder what’s worse the emotional pain or the physical pain.

  • Cathy Chester

    I love how your spoon theory went viral! Bless you for that. As a writer and health advocate for people (like me) who live with MS and disabilities this is the simplest and most effective way to explain what our daily struggles look like. It’s a godsend. Here’s to better days…

  • KW

    I have MS as well and 99 percent of the people that know me, don’t understand how I can say I feel ” yucky” today but was “fine” yesterday…everything hurts no matter what day it is & now I’m dealing with seizures and not knowing why or when they happen. Just another doctor and more questions…just waiting for but lacking answers !!

  • Carol g

    I have psoriatic arthritis too

  • Beth

    Chronic pain!

  • moving slowly

    I have MS and I explain it the same way except I use energy points. There are not enough to make it through the day, most days.

  • Sabine Diekmann-Gott

    Graves disease…… I never have enough spoons 🙁

  • Sasha De Sousa

    This is actually a brilliant way to explain things! It’s a brilliant story and thanks so much for sharing <3
    Having a chronic disease myself, it's hard to make people understand. Fortunately, for now, my spoon supply is still vast, but the chance that I might get fewer very soon without warning, is always something that looms in the back of my mind. However, when I was diagnosed for sure, I told myself to live life for the fullest. Things I wouldn't have paid attention to or enjoyed so much before, now I did. I think for one thing it's a burden to be sick, but on the other hand you get the opportunity to see life from a new perspective and I think the thing one should try is to find a way to live without regrets. If you don't have enough spoons for that, make do with half a spoon – sometimes that is more than you'd think 😉

  • Trudie Lombard

    Thank you so much for this story this will help me a lot to explain why I might look healthy but really am not. I have ulcerative colitis. And when I have flare-ups my spoons seems to drop out in heaps. Yet normal spoonless people simply do not seem to understand this. I sometimes wish they can live a day in my shoes, or me simply having a day where I do not have to worry if there will be a loo nearby and if I will make it trough the day.

  • Kim

    I also have CRPS like Camille – thanks for your story Christine it absolutely perfectly sums up the reality of living with a chronic condition. I’ll share widely. Thanks Pat Rothfuss (the most awesome writer ever) for the original FB share that brought me to this page!

  • Karla

    Thank you so much for sharing this story. I am a nurse and it helps to better understand some of the patients that come through the operating room and “how many spoons they have used up to get to the OR and what it will require for them to recover in the days, weeks or months after

  • wendy

    thank you so much for this article. i always hate hearing you don’t look sick. now i have a way to explain things better then i’m tired. i have Fibromyalgia along with many other health issues. i finally feel like someone understands what i am going through. thank you thank you i can’t thank you enough

  • Richard R. Hutchison Jr.

    I have been in chronic pain for over 18 years. The spoon analogy is simply amazing. It is so hard to hear people say “you look just FINE to me” knowing that I feel like I am on my last leg most of the time. Arthritis has ruled my life for the last 18 years. Most people think that it is an act for attention when I say that I can’t do this or don’t feel up to that because they can see the pain that I am in. There are no scars (except for the one from the back surgery I recently had or the knee replacements that I have had) and without visible “proof’…well you know the rest of the story. God bless those of my friends and family who really care and ask every now and then with genuine interest “How are you feeling today?” The rest will take care of itself as we should take care of ourselves and those less fortunate around us in fragile and/or declining health.

  • Mochi

    I have endometriosis and fibroid tumors. I’m very, VERY lucky that don’t deal with this every day, but half the time, yeah, I start out with like, 2 spoons max. Sometimes I have all teh spoonz! Either way this is a brilliant analogy, and you’re amazing for sharing it with us. <3

  • Kelly Rush

    Among several other neurological conditions, I also have psoriatic arthritis, which almost nobody has even heard of much less has a clue about. The crack-a-joke-and-change-the-subject line felt like a dagger of familiarity through my heart. Never thought about it in the “spoon” sense like this, but it’s true. There’s just only so much Kel to go around.

  • Kathy

    Wow! Great way to explain many “private” illnesses!! I have MS and have for nearly 12 years. I didn’t even realize myself about how many Spoons I have per day. I just keep going and then cant move the next day. Thank you for this!!!!

  • Deni Loubert

    Thanks for this wonderful explanation. I have a good friend with chronic fatigue who sent me to this via his Facebook page (to explain why he refers to his energy levels as spoons). I now understand what my friends with this kind of disability are going through so much better. Thanks again for helping those of us lucky enough to have plenty of spoons to understand how hard it must be to allocate them out each day.

  • Valie63

    Wow – how amazing! Thanks Christine for your wonderful analogy of “spoons”, it describes living with an illness really succinctly. Ive had ME for nearly 30 yrs now and people say I don’t look ill but I have learnt to manage my “spoons” well and no one except my family knows what this really means. Luckily I have good genes so I think this helps with not looking ill but sometimes I wish people didn’t judge me just because of this and make unkind comments because I don’t work! I also find I get left out because I can’t always make it to friends or invite them back to me. Anyway, I wish you many “spoons” and very best wishes. I hope someday a cure can be found for these illnesses. Thank you

  • Laurenb

    I would like to share this to Val. I would like my friends and family to read this. My big brother asked me once if I got hit by a plane! He can’t believe everything that is wrong with me. But it is all invisible.

  • Laurenb

    This is brilliant. “The Spoon Theory” is something my sons need to read. I think my oldest got a bit upset with me the other day when I told him his dad and I couldn’t go out to lunch with him and his girlfriend. I hadn’t slept well the night before. I didn’t sleep well the next night and then it was Easter. My husband cooked everything. I think my youngest understands a little better. I would love for them to read this. I would love some friends to read it. Then maybe they would understand.

  • JReyn

    A great description of draining, fluctuating, invisible diseases. I have Myasthenia Gravis, and this spoke to me.

  • Val van Rooyen

    This is so amazing and is a perfect way to explain to people who do not understand why it takes so long to do some things one day and even longer the next and then another day it is easier, and so it goes on . I see there is a share button, may we? I am not sure after the You may NOT…. sentence. Thank you.

  • Corinne

    this is AWESOME!! best explanation I have ever come across! you rock Christine….I too suffer from a disability and don’t ‘look sick’ ….so it’s hard for family and friends to understand. Thank you so much for this!!

  • Amy Pfluecke

    My best friend has Spina Bifida. She has been in a wheelchair since she was two years old. She is so inspiring.

  • Kalie

    I love this spoon theory. It will make iteasier to explain my disability to my friends and family.

  • Kim Graves

    This just teared me up. I have fibro, palmer pustular psoriasis, costochondritis, ptsd, anxiety attacks, rheumatoid arthritis, endometriosis, ibs and so many other things that come with fibro its driving me insane. I drop my 5 yr old at school 30 miles away come home and sleep until 1 or 2pm then do some chores then make dinner thats my life. I took her to home depot to builfld a planter today but it takes me a day to recover if i take her out. Its very upsetting for me

  • Lisamarie f

    I just wrote a post about deciding when is the time to get a scooter and my decision is when it starts to take too many of my spoons to walk! http://job6-3.blogspot.com/2015/03/to-scoot-or-not-to-scoot.html

  • Monica Fredericks

    This is the most awesome way to describe an illness that can not be seen. I have Fibro, Arthritis, Spina Bifida Occulta and Migraine Headaches. I often get the comments but you are young, you don’t look sick or my favorite you are just a hypo. All those are very hurtful things to say to someone when you have no idea how it is to walk a day in their shoes. I also live day to day with a limited amount of spoons. Thank You so much for this article.

  • khowardqilts

    Great way to explain anything in life that causes you to have to use your time wisely.

  • nkdbeauty anticellulite

    Thank you for this blog. That’s all i can say..useful information shared… i am very happy to read this article.. thanks for giving us nice info. fantastic walk-through. i appreciate this post
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  • lily

    It sounds like her friend was a very good friend indeed, to ask and discuss this. She wasn’t assuming she knew everything – she was assuming she knew nothing.

  • Nickie Bird Hughes

    Thank you. I live everyday counting my spoons, and never knew how to explain the way I feel to my friends & family. Now I think I can. I have constant pain, and gastroperises, along with a few other delights. I just wanted to say, thank you.

  • 2lilkitty2

    Amazon.

  • Jane Ellen Straugh

    This is great. I live in constant pain from Rheumatoid Arthrits, Fibromyalgia and I have a rod in my spine after two failed back surgeries. I too would like a link to this page on my Facebook.

  • GQ

    thank you. I was born with a brain tumor and live with the effects of treatment everyday. You have totally explained my life, and helped me to feel less lonely.

  • Camille

    Christine, I want to say thank you for your beautiful story. It touch me for I was diagnosed with RSD/CRPS. People don’t understand how we must live our lives in pain everyday. Sending soft hugs and prayers <3

  • Lana

    Thank you. I’m in tx for HepC, and have had it for 46 yrs. My liver is at 4-stage Fibrosis. People say, but you look so good. They have no idea some days what it takes to get to that place…at least 2-3 spoons! In NM there is a business that sells charms, maybe they have spoons too. Southwest silver (?) or something like that.

  • Dawn

    Does anyone know where you can get a braclet with little spoons as charms?

  • Freckles4eva

    Please can I put a link to this page on my Facebook page? I suffer from Rheumatoid Arthritis and it explains my condition perfectly.

  • Kathryn

    This is an absolutely brilliant way to educate people about these conditions.God has blessed you with a gift to foster understanding.Thank you so much for sharing!

  • justme

    I first heard about the spoon analogy in the strangest of ways…a couple of years ago while watching a reality show about tattoo artists. One of their clients asked for a bouquet of spoons tattoo to represent her illness and its challenges. Only today did I see this come up on my Facebook feed; now I know the source of that analogy. It’s stuck with me all this time, as someone struggling daily with scoliosis and at-times unrelenting fatigue. I’ve shared your version on my feed: I’ve never wished for pity or well-meaning folks to want to do “let me off the hook”…but I’ve come to a place where I just feel a need for those without an invisible illness to actually “get” it. Yes, I can hike 2-3 kms and be good but, no, folding that load of laundry may not be possible. It’s so difficult to explain…even to folks who almost understand like my husband (we met and connected when chatting about childhood illness…outgrown by him…he gets the sore shoulders but gets hurt feelings from the angry/frustrated outbursts from 30+ years of same-old).

  • Traci

    I even use the statement of the save a spoonful for yourself to nurses who are so giving of themselves tirelessly. So as to remind them that I appreciate them taking care of us and away to share the story and theory with others.

  • Adriana Crick

    I Can relate to this story as I have a daughter who has struggles with Fibromyalgia for years, It is sad to see your own child in pain.

  • Kathy

    Thank you…three people I now know better. Certainly this may actually help others understand and even seek help xo

  • Susie C. Miller

    Love this message! So perfectly stated.