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.

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  • spirals

    I have Adblocker but I think I’ll disable it for this site. If you have Chrome you can get it as an extension.

  • spirals

    ??

  • spirals

    I think the number is arbitrary, as the illustrative visual is the spoons being taken away.

  • spirals

    And it’s a perfectly valid illustration.

  • spirals

    That’s really weird. Like…they’re mad that you have a chronic condition? Normal people would be mad that they had a chronic condition. At any rate, I understand. hugs to you. 🙂

  • spirals

    Yes, I just have the link to this page bookmarked and give it to people. If they read it here, I think that’s fine. I have a hard time explaining it.

  • spirals

    You should be grateful that you don’t understand. Very grateful. But you won’t because you’ll never know as long as you’re still a T.A.B.-Temporarily Able-Bodied.

  • Kell Brigan

    Spoons are easier to hold on to, though. ; )

  • Elly L

    I have dealt with ADD all my life but did not know until less then 10 years ago and am past mid-50’s now. I also paused to wonder if she left with that one spoon.

  • Kelly

    “If you can’t be kind, be quiet.”

  • John

    That’s OK, you probably just need to get out more =) There are far, FAR, sillier analogies getting around.

  • Craig Waldron

    Probably the only way you’ll understand this is to experience a brain injury, stroke or a debilitating disease yourself. I hope you never do because I don’t think you have the ability to understand or deal with it.

  • james

    This is the stupidest analogy i have ever heard

  • Chaquita Granita

    Please share what you’ve learned. My friend is dealing with fibromyalgia as well, and he would give anything to live a normal, or at least approaching “normal” life.

  • I think I got downvoted out of spite. I have to chuckle at that.

  • Karen Quealy

    Thank you for opening our eyes. I’m sharing this.

  • Swan

    How did you figure out the chemical that was causing your fibromyalgia?

  • you can still link to it and share it with others, to help them understand what it’s like to live with a chronic condition

  • Heather Hutchinson Ordover

    I’m pretty sure that “sharing” the article is fine – awesome even – because a Facebook share will send the reader back here. I think the author means “don’t copy/paste/publish this on your own site as though you wrote it” which some people do. It’s her story; it should come with her name attached.
    Sadly, some people think if it’s on a webpage anyone can “take” it. The fact that you even had this thought shows what a lovely person you are. And I’m so sorry that you lost your Mother to Lupus.

  • I refer to this often when trying to explain how difficult and how much effort it takes just to endure a single day of my severe fibromyalgia. This is very easy for friends and family to have a better understanding of what I a person with chronic illness goes through in a day.

  • Tabi Jozwick

    Batteries can be drained. The ONLY reason why the author came up with the spoon theory is because they were at a restaurant.

  • Tabi Jozwick

    For me, I use the cell phone battery metaphor. To me, it is a lot easier to use because batteries use energy. Spoons do not use energy.

  • Candace Weiss

    That works just as well. Marbles, spoons, sticks, etc. As long as you have a tangible metaphor you can use to explain what your day is like with fibromyalgia.

  • tanya cummins

    This is sad that I cannot publish this without the author’s permission. I don’t understand because this article has the Facebook share key at its top. My mother died of lupus on my third birthday, so this hits close to my heart.

  • This essay is like a cooking blog with no recipe at the end.

  • Alina

    What did you find that helped your fibromyalgia? I have it too and have found very few answers from the many doctor’s I’ve tried going to.

  • Thank you for this. You described my fibromyalgia. I explained this theory to Dad so he’d understand why my husband and I referred to me being out of spoons. The first time I said it, he immediately glanced at our flatware supply. Dad understood the reality from taking care of Mom, but never this so visceral description. I lost a couple of spoons when I had a heart attack nine months ago. You made it easy to explain to my family how my energy level is, and why I can do things some days but not others.

    Thanks again.

  • memester

    one of, if not the most helpful practices for chronic illness ever.

  • memester

    LOL

  • Shanz

    Very true….I understand exactly what you mean. This is why I use the “jar of marbles” instead of “handful of spoons” theory. Check out my post above and see if you feel it answers your questions?

  • Shanz

    Before spoons there were marbles, which has always made more sense to me as a fibro patient.
    The premise is similar where you are given a jar of marbles for the day instead of a handful of spoons, however you never know if you’ll wake up with a full jar or just 10 marbles. So first you need to determine how many marbles are in the jar and then decide how to “spend” them since each activity will require a certain amount of energy (wake up = 2 marbles, shower = 10 marbles, grocery shopping = 20 marbles, etc). For example if you wake up with only 50 marbles you may need to forego the afternoon shopping trip to be able to go out for dinner.
    My doctor gave me this analogy when I was diagnosed in early 2000’s and I use it to help friends and family understand why some days I appear to be almost “normal” while other days I can barely get out of bed.
    It also explains why it’s difficult for me to be up for a spontaneous night of dinner and a movie when I haven’t budgeted enough marbles.
    Of course the best part is the ability to say “I’ve lost my marbles” when I’m done for the day LOL 🙂

  • Chartreuxe

    No, that’s just you.

    The value of this content is worth the ads.

  • Joyann Johnson

    Hi, Thank you for the spoon theory. It is so true . I am wondering if anyone out there has tightening/pressure around the stomach and into the back. I have read some where fibro is affecting more muscles for individuals. Thanks.

  • Deborah Barr

    Because you can’t take pieces of a battery away from people physically. Using something physical like a spoon at the time, which was after all merely a stroke of genius of the moment, made her able to quantify it for her friend.

    The whole purpose was to make it a very physical demonstration of why she can’t get to the end of the day the way normal people can with the same amount of tasks. Watching a battery reduced might be more accurate, but taking spoons away physically and making the person holding the spoons start to get desperate give us a much more gut level feeling of what’s going on.

  • Deborah Barr

    Choose the number of spoons that works for you. Your disability is different from someone else’s, and your situation and how many spoons you require or how streamlined you’ve made your life will be different from everyone else’s.

    You can count the number of things you have to deal with, which may include prying your eyes open in the morning or not, and when you run out, that’s how many spoons you had that day. If it’s important to you to be accurate, that’s one technique, but if you are just showing friends how difficult it is to live, just don’t give them enough spoons to do what they’d like to do during the day. After all, everyday is different.

  • Deborah Barr

    This is very timely for me as I’m currently recovering from fibromyalgia, having learned down at the molecular level what’s going on with me, and being able to turn it around by looking at copious amounts of medical research, especially involving cardiac and things like provider engagement reducing the suicide risk, which in fibromyalgia is over 10 times the average. which means that the providers aren’t giving enough engagement. (We could use specialized doctors with less expensive education, less expensive for the health insurance and therefore able to give more time to do this.)

    Once I got rid of the chemical causing my fibromyalgia, I’m starting a long haul replenishing nutrients. I can’t say I hoped that I would just be back to normal – okay, I can. Finding I have one long sustained effort to continue on, and that in fact at the start I have less spoons for doing other things now that my body sees clearly what’s going on with it, fighting dysautonomic, has been disheartening. Every time I recover more and have an extra spoon, my body wants to invest that spoon into even more recovery. And then it tries to steal spoons away, but the emotional antioxidants of feeling effective means that that actually slows down my recovery. So I need not to give myself all the nutrients possible or the dysautonomia comes back and the body overheals and doesn’t leave me energy for things like getting my rent check.

    I believe this applies to a lot of older adults as well having less spoons.

    Thank you so much for creating the spoon explanation of energy available. It was a genius idea that keeps on helping people with any disability or limitation.

  • Ariez4

    Why not use the simplest and widest known description of a battery? It’s even easier to explain. Everyone gets that concept and it doesn’t lessen what you’re going through.
    ???????? There’s emoji’s that are useful and not cutesy or insulting.
    https://rootedinrights.org/please-dont-define-me-as-a-hippie-spoonie-or-zebra/

  • Jennifer

    The author is the owner of the entire website. You can find copyright information on this page of the site:
    https://butyoudontlooksick.com/about/terms-of-use/

  • M

    Where or how do I get in touch with the author to get permission to read this in a video? Does anyone know?

  • corinneseguinart

    Hello,
    I find this theory lovely as it puts visibility to invisible. In the story the day starts with 12 spoons but should we use that number too or a number we choose? How do we determine that number of spoons to start with for the day?

  • Terrie Williams

    Its not that she doesn’t want people to use it. She just wants credit where credit is due, as i understand it. Quite rightly, I believe.

  • Zanne Freed

    I first heard about it around 2004 as a result of discussion on an autism newsgroup (alt.support.autism). I’m not on the spectrum, but I have Rheumatoid Arthritis and am hard of hearing, so I can definitely identify with the sentiments of the article. It has helped me to get my husband to understand why one day I can completely clean out the spare bedroom, make a lavish dinner, and go for a two-mile hike, and another I’m doing well to be able to get out of bed and get dressed.

  • Lucy Swan

    I would send it to mine, but he doesn’t read lol

  • Lucy Swan

    I have MS and my adult son is estranged because he doesn’t believe I even have MS (thanks to his family telling everyone I was faking). I can reach the rest of my adult children & husband with this “guide”, but my son won’t even go out of his way to talk to me.

  • Lucy Swan

    Do share your transitions lenses metaphor please! ????

  • Lucy Swan

    I find that I sometimes “steal” spoons from my husband. He’s wonderful, nut very limited patience with me. Maybe the spoons theory could help him.

  • Lucy Swan

    Also first heard the “spoons theory” in 2009(ish?), the same year I was diagnosed with MS. I never really thought about it again, not purposely anyway. I made the choice to not take the injections, and just live as naturally as possible, and I believe this was my subconscious mind choosing it’s spoons. I still had lingering scar tissue on the brain/spinal cord, causing lack of balance, minor fatigue and minor cold sensitivity (I have heat sensitivity also but cold is worse for me), but overall I was getting around pretty well. Then, in late 2014/early 2015, my immune system went haywire. I got the flu (rarely caught any “bugs” going around and NEVER had the flu), had a pre-cancerous Pap smear, my hair was falling out in chunks, I was an emotional wreck and I had 4 teens in a 2-bedroom house. Did I say I was an emotional wreck? I was prescribed anti-depressants, which I’ve always avoided because those cause their own set of side affects. I decided to go through with the MRI that my new neuro suggested and if the lesions hadn’t worsened, I would start taking them. However, the MRI showed 2 active lesions, one old and one brand new. I again denied injections and asked about something to help the debilitating fatigue (what I thought was post-viral fatigue) and was prescribed Vyvanse. This drug changed my life. I was able to do WAY more than I had before, but every morning that I take that pill, I have to think “how many spoons will I lose today?” Over time, I stopped questioning the spoons and just took the Vyvanse. Here we are in 2022, 7 years later and I just realized that while the vyvanse was wonderful, on it I had forgotten my limited spoons. I took on too much. I felt like I should be everything to everyone all of the time. Then, in 2020 my first & 2nd grandchildren were born. Then in 2021 my 3rd & 4th grand children came along. I’ve taken on so much and spent so many spoons that I have no energy for time with them. I don’t believe any of may family understand and I was thinking about maybe an autoimmune disease spoons board game to help them understand subconsciously, because none of them read. Idk how it build such a game or even if I could be permitted to use the spoons theory as a basis, but maybe it could help them understand. Hell, maybe it could help ME understand my illness & limitations better.

  • neta

    pls go to a functional med doc as Fibro is actually low hormones, especially thyroid and progesterone. i was diagnosed with fibro and chronic fatigue happened when periods stopped. actually cured, thanks to taking natural thyroid and HRT.

  • TrilliumLady

    You most certainly may use her spoon theory … just don’t steal her words! Use your own words.

  • Probably 2008?