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
  • http://unconvention.everythingincolor.com Kristen

    Oh my, I’m sure you don’t want to read anymore comments on this post, but I have to write one. As someone who suffers with a still undiagnosed illness but goes through this same thing every day, trying to balance everything I need to do with the few spoons I have, I think this is a WONDERFUL post that I am going to share with others, and I think it’s wonderful that you have someone in your life who wanted to truly understand. Many of us do not, so you should most definitely cherish her! I’m glad I found this because it’s always nice to know that others out there know what you’re going through.

  • Lee

    Thank you, thank you, thank you!!

    I have a disorder known as Trigeminal Neuralgia and have suffered with it since my early 20s. I am now in my late 40s.

    Between the disorder, results of brain surgery and the heavy-duty medications I take, the Spoon Theory is my life. Always counting spoons.

    I just never knew that was what I was doing, or how to explain it to others.

    Now I do. Now when I say “I’m out of spoons”, I don’t get the guilt trips for not coming to dinner or out for activities I would normally participate in. Now I have a way to explain things to my family and friends in a way that they TRULY UNDERSTAND.

    Thank you!!!

  • Laura

    I have severe Fybro and am just starting to really understand the spoon theory and how it applies to even the smallest things (I call the spoons tickets). It is so hard when even the people you love don’t understand. I am going to share this with all my loved ones because it is the best description of what it is like that I have ever herd. Thank you so much!

  • linda yeulenski

    THANK YOU SO MUCH FOR THIS. I AM TIRED OF EXPLAINING TO PEOPLE THAT I AM IN PAIN AND I CANT DO WHAT THEY WANT. THEY SAY, BUT YOU LOOK FINE……IF THEY ONLY KNEW WHAT IT TAKES TO GET THROUGH THE DAY, THEYWOULD NOT SAY A WORD TO ME.

  • Jane

    Great explanation!
    And what most people don’t know is that Lupus is hypothyroidism… see books by Broda Barnes and Mark Starr and David Brownstein.

  • Cathy Buffum

    My best friend for me out of bed at 10:30 at night to read this to me. He always seems to know when I’ve had a bad day. Fourteen years ago I was diagmosed with Lupus and a genetic eye disease that is slowly taking my eye sight. Three years ago I was diagnosed with diabetes and narcolepsy. Think you for posting this. I hope all my friends and family read this posting that was sent to me. Thanks Blayne..love you Boo.

  • Jongwon Choi

    Hello, I am a 21 year-old male, whom was diagnosed with brain cancer and also panhypopituitarism in remission.
    I just read saw a link to your story on a Panhypopituitarism support group on facebook and just related to you so much. Christine, I thank you for making up the analogy about the spoon.
    I hope that someday, you may get well so that you may feel like you have an unlimited supply of spoons ;P
    Again, thank you.

  • Denise

    The spoon theory is a great way to visualize the situation to other people. I used to tell people that I have a certain amount of energy for a day and everything I do costs me more or less energy. But this is a very abstract way to make it clear how my day looks like. I love your spoon theory!
    I’m 28 and have rheumatoid arthritis for over 10 years now. I know how difficult it could be to talk to young people about it because most of them haven’t experienced any chronical illness yet.

  • Carla Harris

    Wow. I have and have had loved ones who to chose/choose how and what to do, depending on the “simple” every day life. What an example of what I have had and continue to have, the Blessing to be a part of. I cannot convey enough the respect, admiration, inspiration I gain, daily, for my family members. Whenever I think I feel bad, I quickly realize I have no clue. None at all.
    Thank you for sharing such a personal, and real part of your self.
    God bless you

  • Aretha Ball-Hairston

    I have Lupus and Sjogren’s Syndrome…This is beautifully expressed. I just don’t say anything and do what I can when I can.

    Thank you!!!

  • http://TheDailyGraff.com John Robinson

    Christine,

    I was referred to this post by Chris Donner (Cee Neuner’s site). I found this post so helpful in understanding what it’s like to live with chronic illness that I’ve just forwarded the link to this post to my next-door neighbor who is a professor in the Dept of Social and Public Health here at Ohio University.

    –John Robinson

  • Julie Hunter

    I have Dermatomyositis with a Lupus overlap and your story is so perfect. I just can’t explain what I felt when I read it. Thank you so much for writing it. x

  • Kimberly Gans

    This describes my uncontrolled Rheumatoid arthritis. You described my life!!!

  • Ginny

    Thank you on behalf of my husband and my sister-in-law who both battle incurable cancers. God bless you.

  • Gillian Wilkinson-Brown

    Wow! Fantastic! Now if only the government’s disability dept would read this and believe that I do not fake my FMS(fibromyalgia) that it is real. Then I would be a happy woman and probably gain back some of the ‘spoons’ I have lost in my 4 year battle with their bureacracy!

  • http://odinslastchild.blogspot.com Josie Abreu

    I am suffering from depression and anxiety since very young and a few years ago panic attacks were added. It is not as physically debilitating as Lupus, Cancer, Crohns, MS, Fibro Myalgia so many of my friends and acquaintances suffer from, but there too, are days I can’t get up or can’t sleep, run errands or leave the house.

    The Spoon-Theory most probably works for explaining depressions, too or at least provides a guideline I can use. Thank you so very much for sharing this with us and for providing understanding.

    Wishing you many days with extra spoons and blessings.

    JMA

  • http://butyoudontlooksick Gloria Johnson

    This article is wonderful. I have MS and yet to look at me one would never know. I am going on my 11th year and still walk without assistance, so therefore people say ‘you don’t look sick’ oh if they only knew how hard it is to get up, do chores, run errands, and catch a cold and know it is going into pneumonia soon, Thank you for such an inspiring way to tell people you are REALLY sick !

  • http://none Suzanne Greig

    This was a great way to explain how you cope with your life.
    i have had a lot of trouble explaining to people how things affect me, but never thought of using something like this to do it. I don’t have Lupus or MS, but I do have Degenerative Discs so can understand a lot about unseen illnesses as people always say to me you should be able to do the house work by doing it a bit at a time, the only thing is I cant even stand real well to get dressed as I have to sit part way through. I admire you for your positive attitude through all this.

  • Dom Spens

    I have PVFS after suffering from two major rare lung diseases 3years ago (Legionnaires Disease first followed by Accute Pulminary Histoplasmosis 6 months later).

    I was bed bound for a year and for the past two years have been able to do lots on good days, and this past year I’ve been having more good days than bad… but even on good days I still have a lot less spoons than most people and if I ever do have a busy day the next day is without fail a day with far fewer spoons.

    Most people dont get or understand my illness as I try not to let it slow me down, I push myself to try and keep up. When I can’t move, or have to sit down, or need to go home, or can hardly walk from pain, or cant go out anymore, they might ask why and I try explaining I’m tired and in pain, but that doesnt really explain it.

    I got so frustrated with the doctors who dont seem to understand, just telling me ‘theres no magic pill to cure you’ and passing the buck from specialist to specialist until I’ve given up on them. painkillers and antiinflamatories and anti-depresants just take the edge off the worst of the bad days, but most of the time I’m struggling, I have no quality of life, I’m weak and pathetic, I can’t work so I have no money, I cant do anything I used to like go out even if I had any money to go out with… I feel like I dont have any quality of life…

    And got my Atos medical on tuesday so probably wont get the little support I do have from my ESA anymore after that if they are cutting off people in wheelchairs I (who looks ‘normal’) don’t stand a chance.

    This theory is a good way to explain it to people, thank you.

  • Loren Taylor

    Thank you Christine for sharing your struggle. I have suffered with Fibromyalgia for many years and could never truely explain to others including my own children as to why I don’t go out, why I don’t work, why I can’t do certain things and why I can’t take them to places they’d really like me to take them. Now I can explain it to people especially those who are most important in my life. You are a blessing Christine, Thank you from the bottom of my heart for the help.

  • Debi Cavagnaro

    Oh, thank you. I am going to share Spoons with my family and friends. I am having a bad week and used up all my spoons.

  • wendy williams

    wow what a good way to explain our complicated lifes better. i have had ms for ten years and day by day you have to think and be prepared for what could happen today. well done…

  • Lois Buchanan

    I have Lupus, fibro, Reynauds, a ton of other symptoms and side effects from lupus and I have used this theory ever since I first heard it to explain what a day wth a chronic illness is like. So many people who have never faced any kind of illness do not understand what it costs to live each day. This is a simple way of making them ‘see’ what the cost is. Thank you for making it relatively simple to explain the COST of a disease.

  • Susan Houle

    Christine – Thank you so much for putting into words what many of us are feeling every day. I was officially diagnosed with MS in February 2009, but had symptoms for several years prior to that. Other than a limp, and now using a cane, people did not and do not see my symptoms, as I have cognitive issues from the MS. People close to me have now realized that my forgetfulness and “brain fog” are part of my MS but it was difficult for a long time and still is. I understand the idea of not having enough “spoons” for the whole day, but have never been able to make people, even my daughter, understand that I can’t do it all!

  • Cathy Schmieder

    WOW! I have Lupus also, and they say Fibromyalgia. I also have PERIPHEAL Neuropathies in bothe feet and ankles, legs. I have Diabetes as well.
    I felt reading this, as we were almost identical in our daily agenda. In fact, as I’m just standing writing this, I feel like falling to the floor in pain.
    Unless you have a life like this,it’s SO VERY hard for anyone to know what a day trapped inside a body that won’t cooperate with ANYTHING you would like for it to do!
    Many days you think, Lord, how long can I do this? Could you just take me? I can’t do ths!! But then, you wake up and face another!

  • Korry Dunhm

    I am fighting with RA and have had to change my life to fit the disease. I have had to give up some “spoons” forever. I no longer have a spoon called painting. My hands don’t work without pain. I used to just choose to do anything and now I have to ask for help. Thanks for giving others a way to understand me. Thank you.

  • Cynthia Verbanac Haller

    I thank you so much for this.. this is so helpful for me.. I now can with your spoon theory maybe explain my “spoons” to my people…
    I thank my friend Rusti who posted this.. May you always be blessed! all of “us”

  • Stacy

    My day, in a nutshell, in secret…because the first thing anyone ever says is, “Are you sure you’re not depressed?” It’s not about being depressed, it’s about surviving the day, no matter what you are faced with. Sure, I could be depressed, but I CHOOSE not to waste a “spoon” on that.

    Thank you, for expressing what I can’t, on a daily basis, to people who want to have me waste my spoons on explaining ever little “off” thing about me.

  • ??Facebook Christine Finlay

    I love this explanation…had M.E./CFS/ Fibromyalgia since 1976 and as I could no longer play squash with my friends lost many of them.
    May I post this link in my Facebook page?
    May I also broadcast it on local community radio (Melb. outskirts) where I present a radio show mainly for children weekly?
    I would really like to give them an opportunity through your explanation to think what it is like for those without healthy working bodies.
    Christine.

  • Annie Haugen

    Christine, my son sent me your ‘spoons’ article and another friend put me onto WEBMD and your videos. I was formally diagnosed with Systemic Lupus this past April after a year of physical and mental issues, one on top of another…my AZH rapidly moved into phase 2, more meds, infections, physical and cognitive changes, It all makes sense now after all these years of flair ups. I have mentally done something like your ‘spoon’ exercise using acceptable foods or snacks that I can eat…such as ‘honey cracker sticks”. I allowed myself 18 per day but now the 12 you use is more in line with my life. I intend to purchase a POSTER pack. Could I possibly use your ‘spoons’ example with my Alzheimers coordinator when we have an intervention conference with my family? My support circle of friends accepts my limitations more than my family….except for my son. I believe that is because if they do not acknowledge the illness, then they will be spared some of the grief and sadness and helplessness they feel for me. I had done some of that many years ago as a self-preservation mechanism. I have finally accepted ‘the new me and my life’
    as it is. Thank you for sharing your life struggles with me. Annie Haugen

  • http://playamart.wordpress.com Lisa B

    as if you need another comment… but wow, this is such a great post! i hope that you never run out of spoons.
    z

  • http://retiredruth.worpress.com Ruth

    I am totally speechless. This is very powerful.