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!

©2016butyoudontlooksick.com
  • Kathleen Ruhl

    Someone shared this on FB and I read it because I was curious. It was so beautifully written, so heartfelt and compelling. It gave me a voice. I’m 59 and 2 yrs ago, while I was riding my bike home from work…I was hit by a Sebring in the crosswalk. Since then, I’ve fallen twice, had a DVT (bloodclot), fractured my knee, been in the hospital multiple times, been in physical rehab for 3 mos, been in outpatient therapy, and fractured my arm at the shoulder where I couldn’t wear a sling or have a cast put on. I lost my full time job and haven’t been able to work outside the home. I still used my cane because I’m afraid I could fall again. I had an EEG done and they found nerve damage from my toes to my ankle, up my calf to my knee. I live in pain every day and now it’s even in my lower back. Sleep…I don’t know what that’s like anymore. The diagnosis is called CRPS or complex regional pain syndrome. It could get worse, it could go away, it could last the rest of my life. But I’m a fighter and I get out and walk, carrying my groceries in a backpack as I don’t have a car. Good people ask me why I’m still using my cane. I too feel like people don’t understand. And I don’t expect them too but it would be helpful if they understood what you so eloquently conveyed. That everyday I make choices and decisions that I don’t really want to be making all the time. But it’s my life now and I miss out on a lot. I feel like people think that I should be over this by now and that maybe I’m milking it for attention. I would never do that and I wish I could get over this. I work hard every day to keep positive and to be active with my art. It is what gives me passion and the strength to keep on going. Thank you for the spoon story. It means a lot to me. It would make a great kids book.

  • yasmin H.

    This explanation made me realize it is okay to not do some things (even things I enjoy doing) on days I feel weak or too much in pain. Before that I felt ‘lazy’, ‘a procrastinator’ and very frustrated with myself because of that.

  • Autumn Hays

    This explains how I feel every day. This how I’m going to explain it to my husband. He doesn’t quite understand because we don’t have insurance or the money for me to go and get diagnosed properly, and believes heavily in mind over body. Thank you for putting this out there for people who struggle everyday to explain to loved ones what going on in their mind and body.

  • DeAnna Anderson

    Oh my goodness! This is the best explanation I have ever heard. Thank you so much. I have multiple sclerosis and this is everyday spooning for me. I have always thought about energy levels. I have energy to do this, but not that and if I do #1 I won’t be able to do #4, etc. The other thing is when people say “but you look so great!” Ugh! Just because you look good (or not in pain) on the outside doesn’t mean all is well on the inside. I have cane days and I have walker days and I have days when the grocery store does not have a riding cart charged and I can’t get groceries that day because there is no way I can walk the store on my own.

  • Elizabeth Bianchini

    This is an absolutely perfect and beautifully written description of the invisible illnesses. Thank you.

  • Kelly Quinn

    I have never seen an explanation that laid out so well what it is to be sick all the time. I have two autoimmune diseases, they don’t even know what the second one is but it causes chronic pain, and that’s my life. I’m only 30, I have two kids and a soldier for a husband so when he deploys or just goes away for a few weeks, I have to count my spoons in the morning, mid-morning, lunchtime, when I grab my kids from the bus, i’m usually running out of spoons by the time its time to make dinner though thankfully my children are old enough to help out with chores such as dishes, the trash, etc. But I’ve never seen this explained so well for those of us who are sick, various sicknesses but each with its own countdown on what you’re going to be able to do today. I’m so very grateful I found this and I plan to share it on Facebook because I have a friend on there that would be grateful for this explanation as well. We both have each other and we’re lucky in that, because we can complain about doctors, health insurance, chronic pain, feeling guilty when someone else(namely our spouses) are doing everything when they’re home because they know or have at least an understanding of how many spoons we have by the time they get home. I will eventually buy the poster, I’m happy you have it on sale because this is the best explanation I’ve ever seen. You’ll never know how grateful I am that you found a way to explain this. But I am exceedingly grateful. I’ve tried to explain all this before to my healthy friends who are sympathetic but don’t understand, and they try to, I know they do, and this says it in a way I never could have found the words to express without sounding self-pitying or angry and let’s be honest, we all have those days but they’re the worst days to try and explain your life. Thank you again for this.

  • SadiesMer

    Thank you for this wonderful story, it really helps me understand what my mom is going through. I understand now and also feel like I should enjoy what I have.

  • Sarah Fawcett Kangas

    I share this as much as possible to explain what it’s like to be in chronic pain. There are times that I’ve dropped all my spoons making coffee in the morning. :(

  • Myranda Miller

    My friend, you are not alone. Many of us suffer from similar problems with doctors being assholes and people being jerks and no one believing that one pivotal moment in your life fucked you up. I’m there. Don’t give up, bud. There’s good people out there and they may be hard to find but we’re there and we want you to fight. Don’t give in.

  • OK_Meat

    What you have there is a very, very cool and understanding friend. I almost don’t believe it as being “true”. Don’t get me wrong – this is a wonderful parable and should be required reading for everyone; the message is as good as or better than anything I’ve read in any religious text. I have met a few people that are that sympathetic/empathetic/compassionate so far, but they have all been professionals that deal with such disabling conditions for a living and have seen enough people that “don’t look sick”, but really are, that they truly could pay attention long enough AND understand the metaphor in such a situation. My experience has been that people by and large are cold, selfish, and – even if they were to sit through the whole spoon explanation and DO understand it – decide “Wow. That’s too much to deal with…sorry I asked….by the way…I’m thinking you should get well before we hang out anymore, you know, because I care and don’t want to add any stress to your situation….”. Hell. I’m unfortunately of this first stupid generation that is inclined to take one look at this beautiful story and say, “TLDR; get a job and stop faking loser LOL call me when ur fun again.” Seriously. I have become so jaded and bitter and inherently distrusting of human beings – friends and family included – since this crap mix of symptoms/disease/whatever the hell the powers that be decide it is, that I don’t even bother to try to make new friends. In other words, I effing hate most humans. I was fun. I WAS ambitious and had great prospects for my future…I was popular, played in a rock band, was right at the start of fulfilling my dreams without a cloud in sight and then BAM! And no one effing believes it. Docs accused me of seeking drugs, saying I was “too young to have those symptoms” or have sent me to specialists that essentially say the same thing and (now) tell me to lose weight and use ice for pain. Nevermind that not three years ago, I was still in decent shape as I’d been athletic and mostly healthy from birth until the pain got so bad that I just had to stop playing sports…then couldn’t run….then couldn’t lift weights or use a punching bag…. and after almost a decade of being sedentary, wow, holy crap! I’m a fat bastard! Must be that I’m just lazy. Because, you know, I totally want to spend what should be the peak of my life both career-wise and physically laid up, farting into the same couch cushions with ice packs on whatever parts hurt that day, waking up screaming in pain and drowning myself in booze to kill the pain because – well – frankly, I’ve given up on life and the prospect of any doc really giving me good healthcare until I am in a hospital dying by the age of 40. Seriously. I wish you all the best, and I am so happy you have this wonderful friend, and hope she still is around.

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  • Jess

    This was a life changing read for me. It really made explaining some of the difficulties of chronic illness so much easier in a way people truly seem to grasp. I even ended up mentioning this article in an intro to my own blog, as I’ve become so accustomed to explaining my illness in terms of “spoons.” Thank you SO much for sharing this!

    http://www.tobellyandbeyond.com/#!about-our-family/s8vsq

  • cheyenne sheppard

    You said that young people dont have to warry about limted problem but it is not true young pople have disablities too so please understand that young people get sick young people have brain problems such as wheelchaird bound young people or young kids or older kids can have tramatic brain ingeries and have too learn this the too not just older people with roumatoid arthritis young people get this too. so please be educated about young people with disablities.