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.
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
You may not publish or re-print this article without the written permission of Christine Miserandino and ButYouDontLookSick.com. Thank you.
The Spoon Theory Large Poster – $22.99
The Spoon Theory Small Poster – $18.99
Most importantly, get one for yourself!
Comments (270)
This is just plain awesome!..and the best way I’ve heard this type of disability explained. Thank you:)
I had an accident in 2006, where I hit my head and after that I don’t know for a few hours anything? Went on medicines, then went to the Mayo clinic in Minnesota to see if they could figure out why I had the terrible headpain every day and night , than Frybromialgia follow and I didn’t even know what it was, and I have an ana problem they thought it was MS but I took a spinal Tap and it was ruled out! But I can’t even get myself to take a shower I’m in so much pain even with methodone, so now they want to put a pump in my back! But nobody understands even my Husband that it doesn’t go away and I can’t push myself or I will be back in bed and he thinks I just need to excersie more and get up early even when I wake up every few hours and he sleeps through the night like a baby! If I’m in bed people think i”m sick not hurting, if I’m go somewhere people think I’m fine and there’s nothing wrong with me! It’s an endless circle for me and now I’m depressed after all these years and not getting better and they said it would probably never go away Post Concussion Syndrome and Frybromyalgia now I take Zoloft at 200 mg a day thats the max. I heard but they said you can mix it will another med. I’m so sick of pills,pills and pills!
I had an accident in 2006, where I hit my head and after that I don’t know for a few hours anything? Went on medicines, then went to the Mayo clinic in Minnesota to see if they could figure out why I had the terrible headpain every day and night , than Frybromialgia follow and I didn’t even know what it was, and I have an ana problem they thought it was MS but I took a spinal Tap and it was ruled out! But I can’t even get myself to take a shower I’m in so much pain even with methodone, so now they want to put a pump in my back! But nobody understands even my Husband that it doesn’t go away and I can’t push myself or I will be back in bed and he thinks I just need to excersie more and get up early even when I wake up every few hours and he sleeps through the night like a baby! If I’m in bed people think i”m sick not hurting, if I’m go somewhere people think I’m fine and there’s nothing wrong with me! It’s an endless circle for me and now I’m depressed after all these years and not getting better and they said it would probably never go away Post Concussion Syndrome and Frybromyalgia now I take Zoloft at 200 mg a day thats the max. I heard but they said you can mix it will another med. I’m so sick of pills,pills and pills! This is my first time on this site!
i found this really interesting people just dont understand they think ur just lazy and cant be bothered however this couldnt be further from the truth i try my hardest at everything and still never gt anywere you really do pay for it .spoons is a great way of explaining it .thanx x
[...] One of the things that is keeping me going is the Spoons Theory. [...]
Very inspiring! I admire your determination in life Christine. Lupus can be reversed in some cases in case you’re wondering. Diet plays a huge role in it. Dr. Joel Fuhrman out of New Jersey has reversed lupus in multiple patients by treating them with a plant based diet. Feel free to read his book “Eat for Health” to learn more. I hope this helps and leads to an endless supply of spoons for you again!
My mother-in-law died July 16th 2007, we miss her very much. This was a great way to explain what she went through, I will share this with family members. We just saw her as sick, but never until now, understood, what she felt like just to wake up. I could have been more help to her.
I’ve battled this since 2007 and this is the best way i’ve EVER heard on how to describe Polymyositis. I cant’ count the number of times people have said to me “but you don’t look sick”. When I park my car in the handicapped space, the looks and glares I get for not being “disabled”. When my co-workers, at the beginning of my illness, couldn’t understand why I couldn’t walk to the back of the office to go to the printer, let alone walk a flight of stairs to go to another department. After a lot of describing of what my illness meant, and how I felt, almost all now understand. When I underwent over 1 year of chemotherapy, lost all my hair and was nausus and sick perpetually, I think that was the part that finally suck in. I really WAS sick. I’m going to pass this on for all the other people of the world to “don’t really look sick”. God bless us all.
Sarah,
I understand that your own experience is painful and draining, and I’m truly sorry for that. Yes, I agree with you that all humans have a finite pool of spoons from which to draw, and it is my view that the size of the pile available varies from person to person for a whole range of reasons. It is however up to each of us to choose where we spend our spoons. That is FAR easier said than done, and particularly difficult if somebody in your life needs / demand more spoons, yet I see no alternative. Nobody else will regulate one’s spoons for one.
I do find it upsetting that you generalise that somebody with a chronic illness will demand spoons from you. It sounds that this is so in your case, but it’s very hurtful, not to mention illogical, to extrapolate from your particular situation to make a universal claim. I personally, as somebody who is chronically ill, expend spoons each week in reassuring family members and to a lesser extent friends that all is well and that things are improving. That’s my choice, because I don’t want them worrying over something they can’t control. Of course they expend their spoons on my behalf, but I also expend mine on theirs in worrying/offering advice about their employment situation / living conditions / emotional status etc etc. Some form of spoon exchange is part of having relationships.
The part of your comment that I reject completely is what you say about running out of spoons and then using a fork: it’s simply not an option for me. Once my spoons are gone, that’s it. Unlike when I was fully well, I can’t borrow spoons from tomorrow without incurring a huge cost – and even then, I can’t always do it. Once I’ve spent my spoons, the cutlery drawer is closed.
I don’t wish to be harsh, because it sounds as though you find yourself in a very difficult and demanding situation, but I do want to let you know how inaccurate – and hurtful – I find some of your comments. It seems to me that your personal situation is what needs addressing rather than using your energy in exhorting ill people in general to behave differently.
I was so touched by your spoon story. I had to stop reading a few times because my glasses would fog up from crying. I felt a piece of me in your story. The stares and disbelief from family, friends and just about everyone. Thank goodness you have your friend in the story. I don’t have many, they don’t understand. When you can’t give allot or what people think they deserve from you they don’t stick around. I’ve been accused of being mentally ill, a hypochondriac, lazy etc. and some of these people are my family. My immediate family does understand to a certain degree but it should be more after 12 years of me being ill. I still get asked why I cant sleep or go to the gym or run every day. It’s so hard. My father used to ask me”whats wrong with you now?” OUCH!!!! Who would want to be sick especially with Lupus, Rheumatoid arthritis, Fibromyalgia, sjoogrens and Hypo hypothyroidism, or be sick with anything. I could have said thanks for the DNA Dad! but that’s not me. Anyway I’m getting carried away. Thank you so very much for your story. It has and will make living with this disease a little easier for me and hopefully those in my life who think I’m worth while. I love your writing style, very well put BRAVO!!!
what a wonderful way to describe how everyday life is for you. i have cmt and I am often told how good I look,when I hurt all over,I smile and say ty. when I really like to tell them how I am feeling.
I have tried to explain what it’s like to have cmt,but usually end up listening to their ailments’
This is my first time on the site and reading spoons made me see myself and what it takes for me to get thru a day.
I am 70 and was diagnosed at 48 and had to give up many of the things I enjoyed,but have replaced them with other activities that are easier on me.
Life goes on and I will enjoy the journey till the end.
Thank you for this wonderful website!
I have lung emphysema
thankyou very much for the spoon theory which made me also realize that I too have to slow down and use my spoons wisely
The only way I can keep going is one day at a time and I do a little bit and rest and do a little more and rest.I just wish my family understood the pain I am in.
I first read this a few years ago, and found it incredibly powerful, and have been using the “spoons” metaphor a lot ever since, as have many of my friends.
When I was recovering from my stroke, I made a comment to my PT about having run out of spoons, and she had no idea what I was talking about, so I told her to Google “spoons lupus.” The next day she had printed out dozens of copies and showed them to all the therapists, who were delighted.
One of the women who worked there later mentioned to me that she had MS, and that the “spoons theory” was exactly what that was like.
So, on behalf of me and a rehab clinic full of therapists and all their subsequent clients: thanks for a very, very useful idea.
[...] The feeling of being “alone” was something I constantly struggled with daily! I couldn’t help but feel like there was NO ONE who knew how I felt. That feeling changed! After browsing through the internet on social networks like Facebook and Twitter; I found that there were so many other people all across the globe living with Lupus just like me! My greatest discovery was an article written by Christine Miserandino; a fellow lupus warrior who found the perfect analogy of how to describe what it’s like to live with a chronic illness like Lupus. It’s called: The Spoon Theory. [...]
Thank you, Christine, for making chronic illness “explainable.” That’s how I live every day, with a pinched nerve, that inhibits my actions. I hadn’t thought of “spoons,” but when I read what you wrote, there was an epiphany in my little-used brain! A “Eureka!” moment, truly. Can’t save up the spoons, so I’ve had to slow down. Thank you, again, for a really eloquent way of explaining what it’s like to live with pain.
Thank you for sharing this story! Wow, this makes so much sense! What a wonderful tool for explaining it!! I am relatively certain I have fibromyalgia, but my doctors never want to give me an actual diagnosis. I think there may also be RA developing as well and just a whole lot of other things like injuries that have resulted in multiple surgeries and metal implants in my joints and hyper-mobile joint syndrome since I was a kid. Not to mention my husband just died in April, so the grief and depression has really compounded my problems… Anyway, I’ve had to learn the hard way to pace myself, and I’m still not always very good at it… I get frustrated and angry for not being able to do what I want and I feel guilty for holding things up, or canceling on people, or just being really slow to get things done. But, that’s just what happens when you’re in pain all the time and you have a limited resource of energy. This just really explains it well. I wish other people could feel what we feel in a day or a week… I think they’d be surprised. I have taken pain killers at least twice a day EVERY day for more than TWENTY years, probably since my mid-teens. And some how I can’t get my doctors to understand that… Maybe I hold back too much and I just can’t get them to “see” how much pain I’m really in. It’s so frustrating…
While I don’t have lupus, the spoon theory can definitely apply to many diseases. I can truly relate with running out of spoons and borrowing the next day’s spoons. Two things that helped me to deal with the dis-ease was a good chiropractor who realized that if he didn’t treat it aggressively I wouldn’t be able to walk again and some great massage therapists. Belle, if you haven’t been to a chiropractor call one that is reputable in your area –it can make a huge difference. And then treat yourself to a medical massage. I made the most improvement when I started getting weekly massages and twice weekly chiropractic treatment. My MD said I would be in a wheelchair within 2 years. It has now been 12 years and I walk just fine. I still get an occasional massage and I still see my chiropractor once every two weeks or so.
June, I think you need to read this again, cuz apparently you read it ALL WRONG!
this is a great way of explaining an illness to someone who doesn’t understand how draining it is.. just goes to show you.. you can’t “judge a book by it’s cover” someone may look perfectly healthy on the outside, but until you’ve lived their life you haven’t a CLUE what they go through on a daily basis!!
take that into concideration next time you are pushing past someone who’s a little slower than you’d like in a mall, or maybe not getting off the bus as fast as you’d like.. just because YOU are late doesn’t make it THEIR fault!
Hi Raven,
I’m not sure if I’m the June you were responding to in your post of 30th July or not – I haven’t the spoons to go back more than three pages of comments to check, and what a wonderfully helpful shorthand “spoons” is to people who understand it. I can’t quite see how I am the person you’re talking to, but I can’t see any other Junes who’ve posted recently, so…
My post on 20th July was responding to Sarah about her post on 22nd June, in which it seemed to me she blamed the chronically sick in her life for taking all her spoons. I DO think there’s a point to what she says but as somebody with a chronic illness I don’t agree that the conclusion she draws has to be valid.
I know what’s about to come out will be defensive but FWIW, as somebody whose father faced the very same assumptions which you mention due to his terminal diagnosis of dementia, and my own chronic illness problems, I do NOT push past people in an unthinking way. I would of course like to believe I never did, but the chances are I probably tutted mentally at “slow” people, in the same way I used to at people who seemed unable to control their children’s tantrums before I was educated, at least a little, about autism.
Again, I don’t quite see how I can be the June you’re responding to, but I also understand how online communication can be misleading and if what I said in my earlier post led you to your conclusion, then I apologise and evidently need to rethink the way I phrase things.