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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  • Duncan Adams

    IP you are trying to be nice ..
    But I”ll be blunt here dude …. you don’t get it … you assume there is a recovery . some things just can’t be fixed …. sometime there are no more ” spoons ” on the table .

  • Duncan Adams

    All but .. A Perfect explanation …..

  • Vann Haal

    I want you to know that the spoon theory has BLOWN UP and become absolutely ENORMOUS in all circles of life from mental illness to physical disability. This “spoon theory” has completely revolutionized the way people talk about their struggles. I tell people “oh I don’t have enough spoons for that” or “today is a good spoon day” all the time! I also see it all over Tumblr, Facebook, and hear people talk about it in real life in passing.

    So you’ve made a HUGE difference to all these communities and I personally would like to thank you for that.

  • oliver

    It’s not that helpful for someone moving forwards by themselves, you’re correct. But that’s not the point. The author is not addressing the issue of getting spoons or not getting spoons, or getting better or not. The author’s target audience is not those of us living with invisible illnesses or our neurodivergence.
    Her audience is the support networks, the families and friends and coworkers that surround us who live with invisible illnesses and neurodivergence. Her audience is those people who can’t understand why we can’t just take that weekend trip; why we want to make sure we can make a quick exit and don’t feel comfortable depending on someone else for a ride; or why we are so rigid about our sleep schedules.
    Our challenges are invisible because they are deeply emotional–when your mind or body betray you? what crushing sense of bewilderment it is–and our society is deeply uncomfortable with emotions. The author wants to cause an emotional reaction in her friend, because the tenor of “but you don’t look sick” is inherently invalidating.
    Lastly, I think you have missed the point of the essay, in incorrectly assuming the audience is those of us who are sick. She is addressing those people who don’t understand that a chronic illness is an uphill battle but not a straight uphill shot. Think Sisyphus pushing a boulder up a mountain, except that the path is all quicksand and the boulder is covered with wet, slippery algae and he tore his ACL ten years ago and still doesn’t have the best stability in his right leg. And he knows that if he goes straight through the brush he could get there because there’s no quicksand that way, except that he would have to start again at the same place every morning and flatten the same brush all over again because it grew back overnight, until eventually the damage to the brush because permanent, over a looooooong time. So “surely” the way to recovery is not a straight line. I may do everything “perfectly” today and one might say, you’re getting better! And tomorrow I could inexplicably wake up convinced that I am alone and the only person in the world who sees the truth: that life is a miserable quagmire of animals born, mindlessly consuming and reproducing, and then dying; and that love, happiness, sunshine, puppies, stuffed teddy-bears, all these things do is dress up the despairing, meaningless, endless churning we do to stay alive.
    Progress will not be linear. We cannot trust that if we “do all the things” three days in a row, that on the fourth day we will be able to even get out of bed. We have to keep trying, obviously, because not to try is death, and we’re not supposed to want to die yet. So, yes, surely the way to recovery does involve increasing what you can do day by day so that the next day we have more spoons. But there is no “something” that guarantees more spoons tomorrow. There is no guarantee of more spoons. There is only a guarantee that you will not always have enough spoons.

  • [email protected]

    Exercise is GREAT for building and/or maintaining strength IF ONE DOES NOT HAVE A DEGENERATING DISEASE. Remember that injuries take time (and energy) to heal. With degenerating conditions, anything one does can cause injury to underlying tissue, which will require healing. Yes, one can push beyond one’s spoons and borrow from tomorrow, but there comes the point at which one must spend DAYS in bed to recover if one borrows too much. Hence the need for spoonies to remember to hold on to a reserve of spoons rather than keep pushing the envelope because OUR envelopes tear easily.

  • danzepepper

    Lupus is in short fatal. It hits every part of your body. I have a friend that has had each hip replaced 4 times. But lupus does have times where it will go into remission.

  • ip

    It’s great that you are able to come up with a way of explaining your feelings but just wondering how helpful this is for someone moving forwards? Surely the way to recovery involves increasing what you can do day by day. In a way doing something despite having no spoons left, so the next day you will have more spoons.

  • UK Canuck

    Wow! Just wow. This is how I’ve had to live my life but I’ve never heard such a useful metaphor for explaining it to people before. Thank you!

  • Kandi Sue Vincent

    This is so me, Diabetic, post 3 strokes with in 2/12 years, and while I can borrow a little, I find borrowing takes 2-3 times the amount of time to regain.. sometimes people just dont get how driving 5 miles away takes a plan… or if 1 little thing is added to a planned outting my day is off..

  • Jane

    Thank you for the Spoon Theory. My son suggested I may be out of spoons and I was new to the concept. I just looked it up and found this article. It’ll be very useful for me with chronic fatigue syndrome. I couldn’t read your article closely (not enough spoons right now) so apologize if I missed something. I would add that I can get another small allotment if I rest.

  • Melanie Pieterkosky

    I suffer from Bipolar and I do see myself as a spoonie, I didn’t think it entirely explained my illness.

    Spoon Theory explains existing with many mental illnesses, including a debilitating depression in myself, but I suffer from mania too. So sometimes instead of not being able to do something because I am out of spoons, I have to do something even though I am out
    of spoons.

    It feels like a knife to my back. It feels like I
    am running on a knife edge. I can’t stop doing something, as unhealthy
    as I know it is for me. It’s a compulsion. It’s not the ability to do
    something, it’s the inability to stop.

    So I added knives to the
    theory. Sometimes if I have spoons, I can knock the knives away. When I
    am out of spoons there is nothing I can do to stop.

    Please
    don’t make jokes about how I should come to your house, when you hear I
    spent 5 hours cleaning a cupboard, or did 6 loads of laundry, or
    reorganised the bookshelves in order of something that only made sense
    at the time. It is very insensitive. It hurts. My activity is a bad
    thing. Doing something uncontrollably is the only thing I can do not to
    cause myself permanent damage.

    I am surrounded by knives and I can’t fight them off, all I can do is what they tell me to do.

  • Tiffany Schettle

    Thank you! <3 One of my favorite articles ever. So helpful. This description provides validation and affirmation for those of us with chronic health issues. It's also a significant resource to share with everyone else in order to increase understanding and empathy. In the depths of illness, we rarely have the energy to explain the experience. For those of us with brain fog at times it can feel impossible. Sharing this is one way to save some spoons! <3

  • Meggan Barnhill

    Thank you, I have been looking for a way to explain the way I feel to people who just don’t get it and this is exactly how I feel most days and it gets worse when I get sick. Again thank you.

  • Anna Collins

    I have seronegative rheumatoid arthritis and explaining to people how debilitating the disease is a struggle! The spoon theory sums it up perfectly ….thank you!!

    Recently I’ve been taking JuicePlus Capsules, and they have given me that extra boost of energy….please take a look at my JuicePlus link below or contact me on Facebook if you would like more information.

    Anna-collins.juiceplus.com

  • Marie DeJarnett

    Thank you so much for this. Not only did the article hit home with me so strongly that I was in tears, but it was also the breakthrough I so needed for my husband to truly understand what daily life is like for me with Fibromyalgia. Again, Thank you!

  • Bluebell

    Wow! The tears are flowing because it feels like a way at last to explain what the days are like when you have illness and disability that is not always immediately visible. The constant frustration of not being able to do what you would like too because you have run out of spoons..borrowing from another day..only to find you have now run out of a weeks supply of spoons.. or more. You pay the price for those spoons just to try to be part of the real world..for only a few hrs sometimes.
    When I was first sick a consultant gave me a similar explanation..using Snow..a light dusting for good days and a snow storm for bad..that could take weeks to clear a path through..but this never worked for me..as i don’t like the cold weather(not good with heat either)..as brings more pain and only depressed me more. But your spoons theroy sounds great as can be shared over a cuppa light heartily getting the point across to family and friends so I don’t have to keep saying I am Ill..tired..etc. I can just say I am out of spoons..or on better days. Up for a cuppa as have some spoons spare today.
    Thank you I feel like I have had a bit of an eureka moment. May you have many days of spoons to play with. Take care..xx

  • Tracy Efird

    Fabulous description to pass along to family members, friends, coworkers, children, this will help them understand better. Thanks for sharing!

  • amazing thanks

  • marty

    I read this yesterday for the first time, I was recently diagnosed with Lupus. It put into words exactly how my life has been for so long. I was in tears, I could not have explained it better myself.

  • I have chronic fatigue and exhaustion syndrom and if I am not careful than I can be in bed for days after a simple outing just because I over do it and spend to many spoons. It’s frustrating and people ask me how it feels and I never know how to describe it or how to get the message across. So this means a lot. Thank you.

  • Thank you for this. Gosh I have never seen a more perfect explanation.

  • Joshua

    The spoon theory is awesome I cannot believe it’s been put into words. I’m bipolar and my depressive episodes mean I don’t do much because I start out with so little spoons and when I’m manic it’s like the spoons are red hot in my hands and need to be spent as soon as possible or else.

  • btamamura

    Last year, I was informed that I have an auto-immune condition. I first fell ill in November 2014, mind you. I have not had a full diagnosis yet, though current suspicions are Hashimoto’s or any other forms of Thyroiditis. I tend to rate my health with a feelings scale (horrible being the worst, it means I may require a trip to the hospital…good being the best, it means I can accomplish some tasks and not feel too undone afterwards).

    There was a day though that Dad came home from work and saw I had managed to do some minor housework. He jokingly asked “you sick or something?” (I was not offended, he used that when I was healthy and had done housework without being asked) and I replied “yes, but I had enough spoons to manage it today”. He’s been hearing me talk of the Spoons theory ever since I was introduced to it through posts shared on Facebook and is understanding that there are days my spoon count is low so I am not able to do much (also rated as an Ugh day), but there are also days my spoon count is a little higher than the day before so I can at least manage a couple of easy chores without risk of overdoing it (also rated as a Good day).

    It at least helps my father understand I am not being lazy, but simply just can’t push myself.

  • Kaylee Fayrl

    The spoon theory is very true for social anxiety as well. My mother has fibromyalgia and I have social anxiety we use spoons to communicate with one another all the time. For me instead of being physical spoons are emotional I only have a certain amount of emotional energy to spend a day and dealing with people is where I uses my spoons.

  • Brenda Spencer

    Thank you! For years it has been so hard for me to explain to people what it is like to have Lupus, I mean to really have Lupus, and this explains it so well. From now on when someone asks me what it’s like to have Lupus I’m going to have them read this so they can understand what my life is really like with Lupus.

  • Toby Reeves Hall

    I think that This can be adapted to fit High-Functioning Autism and Asperger’s Syndrome(<- I've got that one) and the difference in world-view from neurotypicals, you're not limited in spoons, but you have forks instead, same number of choices, sometimes better options, sometimes worse ones, not better or worse overall, and you're still doing broadly the same things, but by god you attack problems in a completely different way

  • Alexa

    Despite having Crohn’s for 10 years, I never thought to look up what spoons meant! This was a moving and relatable post. Thank you!