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
  • Tanya Drigotas Fierro

    Went to another neuro today. He was actually fabulous. He’s not too into the fibromyalgia diagnosis in the 40’s but he actually made more sense than any of the 20 doctors I’ve seen. Your mind is THE most powerful organ in the body (aside from the tongue which can destroy people’s lives quicker than cancer) but… Yes your brain sends signals Throughout your body to your muscles and nerves of excruciating pain due to another killer..stress. I was (up until 2 months ago) THE most badass, strongest, mind focused, active, non stop, full time mom, medical professional, wife, and every other title possible. In the past couple months I’ve become debilitated with chronic pain all over my body with no answer ur Fibromyalgia. So it’s real whatever the hell it is, Fibromyalgia, chronic pain, whatever healthy people or people who don’t understand until it punches you in the face (or entire body) call it. BECAUSE I was a healthy happy functioning non spoon person and now guess what?? I’m physically and mentally agonizing over the fact of having whatever I have. (I’ll pacify the non believers of Fibromyalgia or any other illness they’re skeptical on, on here only cause I’m sure they’ll come in contact with a dear loved one with some sort of invisible illness and have to eat Their words.. Or more) but… I have Fibromyalgia, don’t care what the name is. And I have had every test done even ones that aren’t even approved yet cause I can, being a medical professional I have the means to, and I’m highly educated on many blood tests done for these symptoms, X-rays MRI’s ct scans therapies, homeopathic you name it (skeptics, if can) and I’ve had it. Unless you’ve been to a 12 year college have an M.D after your name, don’t discourage or bring people who are already in pain with whatever their fighting down even more. If there is a M.D after your name n you still bring people down then quit cause your a terrible person n should work in a cave digging for worms. Just giving my opinion keep fighting and feeling good my fighters!!!!

  • [email protected]

    Energy runs out faster for those of us with chronic conditions. If one only has the energy to make it to the bathroom and debates whether one has the energy to make it back to bed, then one is a member of this select group. Sometimes medication allows us almost a normal existence.

  • http://www.FibroMyAss.com Goswellen Arellano

    Why are you against people suggesting that you get help? Maybe they want you to feel better. I understand it won’t fix everything but it is a start.

  • Goswellen Arellano

    Doesn’t limited time and energy apply to EVERYONE?

  • Goswellen Arellano

    Fibromyalgia is diagnosed by a survey. If you answer, or the doctor answers for you, that you have 3 pain zones and severe unrestoritive sleep, fatigue and cognitive issues you get the label. That’s really all there is to it. There’s good reason that most people and even more doctors don’t believe in this. With your health on the line, I’d recommend you take a look at the other side of the discussion at fibromyass.com or facebook.com/fibromyass

  • Goswellen Arellano

    The friend in the story doesn’t seem to understand the idea of limited time and energy, as if this is not a problem for her. I have a chronic health condition myself, and I think this is just ridiculous. Why would this mean anything if the friend did not also have limited energy?

  • Tanya Drigotas Fierro

    This is THE BEST way to explain my invisible illness. I have been recentley diagnosed with fibromyalgia and everyone says, what is it and what does it do or feel like and this is exactly what I wil tell them to read. Thank you thank you so much. God bless you.

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  • Deb

    Thank You, I have sjrogrines syndrome and feel this is a great way to describe how I feel, we need to listen to our bodies

  • Michelle R Bauer

    Don’t judge others unless you use Gods eyes~ I can’t do it…

  • Tony Connelly

    I used 2 spoons just reading this….. maybe summarize the story a bit. It’s a good analogy, I deal with this after suffering a stroke 5 years ago.

  • Arionis

    I just read this after The Bloggess recommended it and I wanted to say thank you. My wife has had Rheumatoid Arthritis all her life. We’ve been together for 12 years and as much as I thought I understood you just taught me more. Thanks again.

  • Lisa Belanger

    Bob, I ….nah … never mind….never mind…

  • djq

    Very good read…I have a chronic disease and this applies so well to me. I just sent the link to my daughter….She cares so much but just doesn’t understand….

  • xtophera

    You’re charged one spoon for stealing a spoon.

  • http://www.brigadeiroportoalegre.com.br/ Bruno Piña Colada

    Really the article is excellent but i dont believe this theory hahahaha
    nice try because i believe on cupcake theory
    Thank you for share this.
    Cheers :)

  • Brenda Miller

    I didn’t take it as offensive at all. And I’m sure it wasn’t meant to be. It came from a place of loving concern and the hope that maybe she could offer some suggestions that had helped her. At least that was my take!

  • Danyea Austin

    Very touching and relatable ! Stay strong my fellow warriors. If your looking for daily inspiration I have built a chronic illness page for all spoonies to connect . Instagram: fiestylupuschick. Take care everyone !!

  • Debbi Leahy DeChellis

    BOB get a job! You have way to much time on your hands!

  • Simon Swain

    Never argue with idiots. They will drag you down to your level and beat you with experience (Mark Twain).

  • 30pounds

    It is a metaphor, Bob; you do understand that, right? She was asked a hard question and came up with a creative and intelligent way to illustrate her answer in a way that could be easily understood by others. I, too, have a chronic condition, a “debilitating, progressive, life-long neurological condition. It can be very hard for people to understand- the spoon theory is a good way to help the people close to me “get it.”
    I’m trying to understand why this angers you so much, why Christine helping her friend understand her condition and its impact on her life bothers you so much that you have to spew such negativity about it. She didn’t ask for her issues any more than you did, or I did. Where is your compassion, your empathy, your appreciation of her resourcefulness, or solidarity in reading about another person facing challenges every day? Or are you just putting the nastiness out there for the responses, looking for an argument with someone, anyone, so you can feel noticed? If so, what good are you trying to fill?

  • Candi Riley

    It is very sad, yes. I hope he finds compassion in his heart, for his own happiness and inner peace.

  • Val

    Disqusting!!!

  • Val

    How about changing your diet…. I’m sure chips and gravy is healthy hmmmm

    What a load of rubbish. You people like being sick. It makes you feel special pffft

  • Scarysarah

    I heard about this theory on a website dedicated to scleroderma patients sharing their experiences.
    I have NEVER read anything that describes my condition as succinctly at this! It brought me to tears.
    I must share it with my husband. I know the Spoon Theory will help him better understand my condition far more effectively than my explanations ever could.

  • Alison Richards

    I can’t believe how prejudiced and discriminatory ‘Bob’ comes across, in his exchange with you earlier! He has no idea of the frustrations and debilitating nature of long term chronic conditions, or perhaps is just afraid of facing and accepting that such things exist. It is so painful and disappointing to realise that in 2015 there is still so much discrimination in this world. I feel terribly sad for him, he must feel truly miserable to be so lacking in compassion and empathy for those less fortunate than himself.

  • binky-boo

    Gee, angry much? Sounds like you feel you’re not getting enough attention in life for all your boo-boos. So trolling a blog written by a chronically ill person for other chronically ill people makes you feel better? Do you kick seeing eye dogs too? You don’t just have issues, you have entire subscriptions. Several. This is not a cult. It’s called “relief”. At finally seeing someone nail it. I wouldn’t know this woman if I tripped over her. I do not light a candle, or pray to her. All Christine Miserandino did is eloquently explain something that is very hard for others (Imma take a wild guess here and include yourself in this grouping) to grasp. If you don’t suffer from the chronic fatigue that goes with Fibromyalgia, Lupus, Crohn’s disease or many diseases, you do not understand how doing one more thing, or going one more place just sucks the life out of you. Whether you personally get it or not, doesn’t change my reality one iota. It isn’t “It’s called energy. You start the day with a certain amount of energy and it runs out then you sleep.” While you may, I don’t. I do not wake up with any energy. I have none all day. I have none when I get home. After work. After running errands. (BTW, I work 40 hours a week). I can’t sleep in a bed. I sleep in a chair. And I also have insomnia. So when I should go to sleep, I can’t. Not everyone feels exactly like you do. No pity parade, this is just how my life goes, and I deal with it. Every minute of every day. If you do not suffer from a chronic illness, this blog, and the spoon theory really isn’t aimed at you, so what is your point in commenting? I mean other than trolling?

  • Bob

    Candi, I assure you this is not representative of my world view and I respect your words and get it more the way you explain it. Also if you don’t understand my comment then you don’t understand how the “spoon theory” can effect someone in a negative way socially and in relationships, family and son on. let’s just call it “spoonie” abuse :P agree to disagree I’ll leave this little cult *cough sorry I mean community alone

  • Selina Spence

    I would like to post this on my wall with accreditation please.