The Spoon Theory written by Christine Miserandino

 

Please take the time to read Christine Miserandino’s personal story and analogy of what it is like to live with sickness or disability.

Click HERE to download “The Spoon Theory” in PDF format.

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

*We have English, Spanish, French and Hebrew translations of “The Spoon Theory” available.

You may NOT publish or re-print this article without the written permission of Christine Miserandino and ButYouDontLookSick.com. Thank you.

Now you can purchase small and large poster prints of “The Spoon Theory” from our Online Store! These posters will make a perfect “get well gift, or friendship/ I understand gift.” We also think it would make a perfect addition to any doctor’s office, or support group meeting room.

The Spoon Theory Large Poster – $22.99

The Spoon Theory Small Poster – $18.99

Most importantly, get one for yourself!

©2016butyoudontlooksick.com
  • ANGELA JOHNSON2

    I just turned 20 this mouth I have always been healthy. All I have is allergy’s. But reading this I have not been getting three meals a day more like one meal a day. My doctor always said that i am the perfect size and everything but I do believe that i should try to start eat three meals a day.

  • Landin Olandese

    I’m an 18 year old male. I feel healthy, and I try to maintain a healthy lifestyle. I can honestly say I cannot relate. This essay helps me be thankful for what I have, it even inspires me to do more for others who struggle. Ive seen family members and friends struggle with things similar, this peace of writing truly helps me to understand to the best of my ability what they go through, I believe more people should read this.

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  • [email protected]

    Have you considered talking with a professional therapist? The last thing most of us want is one more appointment to keep, but sometimes it is necessary, especially when thoughts of self-harm arise.

  • Larnot

    That’s exactly why I did go through explaining it to her. Still, it does little to ease my insecurities. That is just something that I have to work through. At least in sharing (both with her, in prayer and here) I don’t have to rely solely on my own knowledge and moral compass.

  • Madame Mildew

    Seriously! I’m 49 and was born with severe asthma and allergies (as well as some other conditions that have had negative effects on my entire life but we’re not even diagnosed or SUSPECTED until last year.
    I am one of the happiest, most cheerful, and optimistic people I know. I am strong willed, stubborn, and persistent. People have told me throughout my life that I am the (emotionally) strongest person they’ve ever known. I had family (parents, grandparents, aunts, uncles) that were FANTASTIC role models for being strong, self sufficient, independent, and overcoming limitations/obstacles (people who lived through/grew up during the Depression are pretty tough that way). I’ve fought my conditions (both known and unknown) my ENTIRE life and have never wanted ANYTHING more than I’ve wanted to be healthy. I fought those who told me I “can’t” or “couldn’t” due to my illness (as well as those who told me I was putting on or faking when I was clearly struggling to breathe right in front of them.) I fought to have as normal a life I could and do as much as humanly possible. From my earliest days I imagined myself as strong, healthy, and capable of ANYTHING. If, as Ellie Smith claims, “you can get physical changes imagining being healthy” then by now I should be a veritable powerhouse of shining good health, and a rich, successful Olympic gold medalist to boot.
    But the reality is that despite all my positive thinking, I’m still sick with my chronic illnesses. Some are worse. New ones have emerged. Then there’s the pesky issue of not having a clue about my ADHD, dyspraxia, and sensory processing disorder (well, I knew I was an oddball from a very early age, and that it was “just how I was made”, but beyond that- nada) yet I still struggled with the symptoms and negative consequences all the time, as far back as I can remember. Symptoms I couldn’t “fixate on” or “give in to” because I didn’t KNOW they were symptoms, and wasn’t even aware of anything they could be symptoms OF (ADHD was under diagnosed in the 70s-80s, especially the innatentive type, especially in girls; I hadn’t even HEARD of dyspraxia or SPD til a 1.5 years ago. And my jaw dropped when I started researching these disorders and saw that lists of symptoms described my every idiosyncrasy PERFECTLY.) That didn’t stop me from being limited or disabled by those disorders, no matter how hard I pushed against them.

  • Madame Mildew

    Exactly- Poe’s Law! Sorry Reverend, I got the satire too, but it really is so close to the things we’ve all actually heard/read that it’s not really as obvious as you’d probably hoped.

  • [email protected]

    Unfortunately hiding from truths will not make them go away. Facing them at least allows the possibility of dealing with them. Even a long distance relationship can be life sustaining.

  • Larnot

    You are right of course, Barbara. Thank you for your well intended and positive thoughts. I appreciate them and know you’re right. Sometimes it’s hard to face those kind of truths, you know?

  • [email protected]

    Then again, having known each other 40+years, you are both likely facing the realities of aging and the fact that there are good days and bad days. Rejoice in the good days knowing that they may decrease in frequency.

  • Larnot

    So I used this analogy to explain my congestive heart failure and several other maladies which have put me in a very similar situation to my girlfriend. I’m in a new (long distance, for now) relationship with a long time (40 years+) friend and I want to be very up front when it comes to my health issues. However, it wasn’t my intention to make her feel bad or to pity me. We have been out of touch for some years and she didn’t know to what degree this has affected me. She was asking a lot of detailed questions about my health and I didn’t know how to explain beyond what I’ve already said to her. Then I remembered this story here, which I read a few years ago. So while we were on the phone I looked it up and read it to her.

    See, I lost my last wife because she really didn’t understand or believe in “the spoons”. She became very openly hostile and abusive in the end, before I eventually had to extricate myself from the situation and marriage. I don’t want this new relationship to start out with not only unreasonable, but totally impossible expectations (my own as much as her’s) that I cannot live up to.

    Well, after I read it out loud, I really felt like I had sabotaged myself. I felt that not only did I elicit the pity party and played the gimp card, but also like I maybe pushed her away. She said that this isn’t the case (and to her credit, she said it very convincingly; so convincingly that I really believe her). A lot of it is me and I know it. My self-imposed expectations and insecurities (especially after my failed marriage) are waxing hot. After several years (almost 10, actually) of dealing with a limited amount of spoons and to that add some “folks” (alleged family) who I never would have dreamed could be so downright evil, and I am gun shy. My faith in mankind (self worth, included) is shaken. Sometimes I wonder if it is wise to “cheat death” and live well past the time when our forefathers would have long already given up the ghost. Medicine miraculously extends our lives, but does little to prepare or equip us to deal with the broken pieces in our minds.

  • MeMaw

    My friend envisions and dreams of holding her child daily yet her arms still do not move. She will never cease to imagine that. I wouldn’t call her bound by fear but by disabilty.

  • MerryMary

    Youthful may have been better to say since they are typically healthy vibrant and full of energy and a people that are not customarily counting spoons.
    Not bad for her first go around with her friend.

  • Vince Kissinger

    After working in construction all my life, I was hit with GBS 5 years ago. I went into the hospital at a strapping 225lbs on a very healthy 5’10” frame at 48 years old. When I left two months later, I weighed an emaciated 151lbs and looked like I was a little boy walking around in his fathers clothes. It took me 7 months just to learn how to walk again. I know the spoon theory very well and live with it every single day that God allows me to wake up. Good story, I hope its read by those who need it and by those who need to learn it about others as well.

  • Thank you, Christine. I first heard about The Spoon Theory a couple of years ago. Since then, it’s always my go-to, when I feel that someone in my life (old or new) is having difficulty understanding just how much Endometriosis, General Anxiety Disorder and Polycystic Ovarian Syndrome truly affects my day to day life. This has helped me, and those who I’ve shown it to, to better understand what life for a person with any chronic illness is like. I no longer have to scramble for words to explain. I have this link saved. I simply copy it, send it to them, and ask them to please read your story. There is always an instant change in their attitude. Apologies for not knowing. It brings us closer. I have a fairly new boyfriend. He’s absolutely amazing, supportive and very understanding. He’s always by my side, no matter what. But I worry at times that he doesn’t fully understand what he is “getting himself into”. I just sent this to him. He’s at work and probably won’t get to read it until later, but I know that – just like any other time I’ve shown this to someone in my life – it will help him. It will help me. It will help our relationship. Again, thank you for creating The Spoon Theory, and for sharing it with the world. You’ve changed the lives and perspectives of so many people.

  • Jyoti Arora

    Thank you so much for creating the spoon theory. It helped me understand my own limitations. Like understanding that I only have so many spoons helps me feel a little less guilty about not attending a friends birthday tonight when I said I would. It helps me understand that it’s up to me to choose my spoons wisely which I may not have been doing up until now. Like I only get to do so many things in a week or in a day. If I do too many things or over exert myself it really does take days to recover. This spoon theory makes it so much easier for me to see how often I borrow spoons from tomorrow and the next day so I can do whatever I want for a few days. Thank you so much. Unde standing my choices is so much clearer now and I’ll get to share this with family and friends. ❤️❤️❤️

  • Wow, Christine, this was perfect. Finally I think I have something to show my friends and family so that they could maybe try to understand what I’m going through just a tiny bit. I too miss the freedom of not having to count spoons and just being able to do. Was 100000% completely healthy and life-loving and athletic and mountain climbing 3 years ago and now I can’t even put on a shirt or flush the toilet without thinking of the struggle to do so. This is great. Thank you.

  • DonnaHok

    Thank You Christine Miserandino for writing this. When I was still working I had a boss that use to think so many people faked there back strains etc. Him knowing I had slipped disks in my neck, came to me and explained how he turned the wrong way and bam his back was on fire. He changed his tune after that and in a way was trying to ask me how I dealt with working while in pain all the time. I wish I had this analogy at that time to explain to him how it worked. How just waking up wrong could make all the difference. Not working ergonomically correct could set off a chain reaction. A bad day or night with the family of husband could set off the migraine to accompany the neck pain. The silent depression that comes from it all. I could go on but you already said it so well. There are so many types of silent pain, being physical or mental that this apply’s to.

  • Thank you. This is wonderful.

  • Janelle

    If I am feeling well I try to use as many spoons as possible because I never know how many I will get tomorrow. I’m learning something about this though: I may be well enough to use all my spoons but doing so actually means I will have fewer the next day and the next and the next for who knows how long until I feel well again. I’ve decided to try to be ok without tackling all just because I can in the moment and see if I meter out my spoons and just be ok being ok without all the expectations on top to be useful and productive perhaps I can spread them out a little bit further.

  • devanjames

    Thank you so much for your reply. I really didn’t think anyone would answer, but you did. Your advice is truly helping me be realistic about my resources, and managing them. Facing up to normal aging issues is helping too. The spoons are helping me at at a deep level. Thank you very much for your answer.

  • Kathleen Ruhl

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