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

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.

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  • Veronica Hobbs

    This is a great article and explains the whole illness to a T (I have Lupus) but I must say that I believe this would be inspirational to all people suffereing from any chronic illness, it goes a long way to giving hope that at some point you do feel better even if only for a short while!

  • Matt Slater

    Love this, such a great way to describe what it’s like living with any kind of chronic illness to people that don’t understand

  • Jean Baldridge Yates

    Hello! I am very moved by your story. I understand it very well. You didn’t pull any punches when you discussed The Spoon Theory. It is all so true. Thank you for sharing your way of expressing what your life is like. It will help me when I can tell my own story. I am a friend of Lori McDaniel Anderson’s and now I hope that you will accept my friendship as well. Jean Baldridge Yates :)

  • Cheryl Youmans-Rusaw

    I’m sorry for your pain. The fatigue will pass, (unfortunately it will be back though) but for now you have the rest when you can. Pushing yourself only makes it worse :(

  • Cheryl Youmans-Rusaw

    I love your site! Very informative, especially the spoon theory. I’ve never heard of it before, but it makes a lot of sense. I also have lupus, and Fibromyalga so I understand what you’re going through.

  • Donna Thiessen

    You are an amazing husband and your wife is lucky to have you. God Bless you both,

  • FrugalEcoMama

    I also just shared this story with my 8- and 10-year-old kids. It really helped them understand why I have to say “I can’t, I’m too tired” to so many things and how I have to budget my energy carefully.

  • FrugalEcoMama

    I’m so glad to have been pointed to this article! I am blessed with hypothyoidism, and it’s hard to explain what it’s like to live like this. At least once a week, I have to re-iterate to my husband, who I live with, that I don’t choose to be like this, that it’s not because I’m lazy, and that the situation is just as frustrating for me, as it is for him! I was diagnosed 3 years ago, so it’s not really new, but he probably still sees me as the energetic, bubbly person he met 15 years ago. :-)

  • FrugalEcoMama

    This could be any number of issues. Lupus is one cause. I experience this easy fatigue that I pay for, for days afterwards, and have hypothyroid, which is far too often undiagnosed and then undertreated, once it is diagnosed. I wish you luck and a good doctor who finds out why you are so easily tired. And stay strong, if your doctor says, “you’re labwork is normal”. Know that this kind of fatigue is not normal, and fight (as best you can) to find a cause, so that you can find a solution.

  • Minnie__Mau

    Do you mind if i read this out to my class?

  • Kirsty

    Sensitivity to light, noise and touch, chronic pain, IBS sounds like Migraine (neurological disorder) symptoms, and PTSD does trigger/ exacerbate Migraine symptoms and attacks. I have both.Depression and insomnia are comorbid with both illnesses too. PTSD is what causes addiction as well (and indeed so can Migraine to a smaller extent, for pain alleviation). You might want to ask your Dr for a referral to a Neurologist to see if it is Silent Migraine (the symptoms without the head pain). If you can minimise triggers, like cutting back on certain foods, it will help you get more spoons :)

  • Kirsty

    Perhaps move to a state that has legalised the green pain killer?…

  • Kirsty

    I hear you about the relationships. Hard to find a person that has the integrity to learn about and try to understand our illnesses in order to *support* us rather than judge (and even abuse) us.

  • Kirsty

    We do get to a stage where we have to accept that we can only do part time work for a few days a week, otherwise we just make ourselves more ill. Could look for part time work whilst still working at current job (and telling them you can’t do more than 8 hours a day).

  • Kirsty

    Medical Certificate from a Doctor will help with the professors at least, I did that when I started getting Migraine at Uni (they wouldn’t give extension without the cert anyway).

  • Kirsty

    It is physical, a change in the Amygdala of the Brain. I know how you feel, I have PTSD too, as well as Chronic Migraine and Osteoarthritis. The spoon theory helps every day.

  • Kirsty

    Thank you so much for your excellent theory Christine! It has helped both me and my mum greatly. I am so glad you wrote this article, I can’t express my appreciation enough. :)

  • Kirsty

    Depression is a physical illness, chemical changes in the brain. It also sounds like you might have PTSD, again a physical change to the brain from trauma and/ or abuse. We need to also accept that it’s not our fault we have these illnesses, whether in the body or in the grey matter of the brain and spinal column. :)

  • Kirsty

    Could be Silent Migraine. Definitely time to see a Dr.

  • Hannah

    I already have.

  • [email protected]

    Time to see your doctor for a physical…

  • Hannah

    I’ve had days of feeling like this but I couldn’t explain it and just believed what others thought – that I was lazy. I get fatigued a lot and fairly easily. Lately I’ve been sleeping for 10-11 hours. I did feel that I had limited energy and needed to share it out and not burn myself out, which is why I’ll need a day to recover.. which happens almost every day. I got ready today and sprayed my car and then a wall of fatigue hit me and I just had to collapse on the sofa. It’s really strange.

  • Rowan

    I love this, and it has helped me be show myself more compassion when I struggle with things. I don’t have a physical illness, but I struggle with chronic major depression and anxiety, to the point that there are a handful of days where all I could do is curl up in a dark room and shiver uncontrollably. Allowing myself to accept that there are some days that are just going to be low-spoon days helps me so much.

  • Nina

    Dear Christine,
    thank you very much for this beautiful way to explain. My supply of spoons is being shortened down by a posttraumatic stress syndrome, absolutely not physical, yet your way to explain how it feels just nails it perfectly. In this case, there can be events which would supply me suddenly with spoons (very nice, very rare) but also events which suddenly use up all the spoons I have left (very nasty, by today it has become rare).
    All the best for your future. Thank you for this text.

  • [email protected]

    Although you might ask for accommodation under the Americans with Disabilities Act (assuming you HAVE been putting forth a good effort and they do appreciate your work).

  • pennypink

    I know ‘the look’. I even had my dad say to me about 4 years ago ‘We always knew there was something wrong with you’!!

  • Molly

    This is beautiful! A friend shared this with me tonight when I was explaining how alone I felt this weekend when I had to stay in and say no to some events that I had planned on going to. I had the perfect weekend planned, but after my meetings with professors, class and work on Friday, my CMT had taken over and it was all I could do to get some food in my body before I laid on my bed, motionless for the rest of the night.

    I am so tired of my professors, roommates, and friends looking at me and saying that they don’t think I need homework extensions, or don’t understand why I always back out of my times scheduled to meet with them. I am so glad you found such a practical way to explain this to your friend, and pray God blesses you with a few extra spoons this week!

  • Matt

    Ice berg shit! This made my month! Bahahaha

  • Matt

    Wow. Thank you so much for this. I have Fibro, chronic pain syndrome, lumbar stenosis and type 1 bipolar. I recently took a job that is well and truly costing me far more spoons than I have in the drawer (I have done 2 ,14 hour on my feet, days this week) , and people keep telling me to just “give it some more time”. This article helped me to see that I am not “giving up”. I am being forced to accept my limitations, and have been very depressed that I am not cutting it. I know you’re not trying to council people to quit their jobs, but in this instance, I really don’t see an alternative. Thank you for helping me get a bit of perspective that it’s not my own personal failure forcing my hand.