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!

©2010 butyoudontlooksick.com
  • Kristy Sokoloski

    I remember when I first read this about 17 years ago and thought, “wow”. It was one of my friends who was a teenager at the time that mentioned it to me and asked me if I had heard of it. I had not heard of it until the day I read that article. Now here I am in 2015 reading it again and glad to have done so. Thank you again for the reminder.

  • rdunne

    A discussion, doubt it. You just want to promote your hate page on fibromyalgia patients.

  • rdunne

    Your bogus

  • Anne

    I have always wondered what this was about. I do wish I could repost this so I could read it again. Thanks for putting this out here for people like me who had no idea what it meant.

  • Christine MacGregor

    Thanks for this analogy! I’ve shared a link to your page on my blog I’ve started
    http://christines-iih-journey.blogspot.ca/

  • Maggs

    For the first time I was able to explain to myself how I feel with lupus (and 7 diagnosis caused by SLE) can’t stop crying. Everyday I go beyond my limit of spoons and that is when frustration comes. I don’t let lupus bring me down at high cost mostly frustration. Should I let go? I worry it will consume me. Thank you for this article, it’s beautiful. Stay active if you can. and God bless.

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  • Jacqueline Sears

    What a beautiful analogy, thank you for sharing. I wish I had more spoons but my MS only allows stinging forks that stab my skin throughout my body 24 hours a day. I’m just glad I can still walk. I figure if I can still feel the pain than my nerves are still connecting to my brain and they haven’t been damaged beyond repair. I try not to think about it and dedicate my life to helping people in my community. Time is moving so fast and I want to enjoy my life. Besides I don’t want to bring people down who are trying to enjoy their own lives. I truly believe that complaining is not going to make me feel any better, only push my loved ones away and they deserve to be happy.

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  • Lisamarie f

    Christine did you have anything to do with these?

    teespring.com/spoon-theorie-explained

  • MARISA PRINCE

    I never knew how to describe the way I handled everyday life w/ my chronic illnesses. This is perfect. Best wishes w/ your health.

  • Psion

    Is it ok if I share this with my fibromyalgia UK group on Facebook? I’ll just post the web address. ☺️

  • Deborah Blockley

    Brilliant way to describe a chronic illness like lupus/M.E. My life totally.

  • Rottweiler

    Hi Peggy and thank you very much for the response and the links. This is actually my ‘third’ opinion and they (after multiple tests) have all drawn the same conclusions, but I do greatly appreciate the information.

  • Peggy Ender

    Randy: please before going thru all this expense. .get a 2nd opinion! I’ve been thru all r these expensive test and 18 yrs of misdiagnosis and enough narcotics to put down and moose. Please check out this christian pain clinic in Traverse city Michigan. http://Www.hopeclinic.us
    You will need a referral from your doctor or chiropractor. Then send do your medical records. James Berg is a great pain ‘detective ‘a detective one of the few in the natjon!
    You may also financially qualify for A round trip ticket to see him thru miracle flight a no. For profit organization. I use them every 6-8 wks to see Dr. BERG at the HOPE CLINIC
    http://Www.miracleflights.org

  • http://jayarava.blogspot.com Jayarava

    In a nutsell :-) I would only add that one never knows how many spoons one is going to wake up with.

  • Andrea

    You have found the perfect way to describe my life with this theory. You made me cry. But that just shows that you really touched not only me but the thousands that have read this. Thank you.

  • Susan Larson

    This makes so much sense, especially to me who has multiple disabilities such as major depression, anxiety/srress disorders, epilepsy, and ADD to name a few. I’m sharing it on my Facebook page so that my friends and family can understand me a little or alot better. I am so glad I found this description of the “Spoon Theory “.
    Thank you so much for writing and printing it for ppl with disabilities so we can try to make ppl understand what having a disability feels like emotionally every single day of our lives.

  • Lindsay October Quist

    This not only made me cry; but it is the best explanation I’ve seen. I was diagnosed with Lupus a little over a year ago. The people close to me try to understand; and thankfully even though they really can’t understand it; they are reasonably sympathetic. So far, I have few more good days than bad; but I’m still not used to not doing everything and I find that I over-do it a lot. The next day it is hard; if not close to impossible to function. Thinking of it as this “Spoon Theory” is perfect. Thank you.

  • Rottweiler

    Hi Tara, Thank you so much for your reply. It’s the most difficult thing I’ve ever dealt with in my life and if you read my posting above, you seen I’ve already dealt with some other pretty bad things (surgeries), fusions, etc.

    I go in the hospital tomorrow morning for a deep down nerve block. They say they have to put me to sleep to do this. Praying it gives me at least some relief.

    Again, thank you.
    Randy K

  • Tara L Gallup

    My Aunt has RSD. I’m sorry you are having to go through so much pain.

  • Rottweiler
  • Mary Ann

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  • Rottweiler

    Hello everyone, I was diagnosed with ‘Brachial Plexopathy’ nerve disease about four and a half months ago. Absolutely unbearable pain, paralysis in the left side of my neck, left shoulder, arm, hand and fingers. I’ve had two major neck surgeries in the past, a multi level fusion in my lower back, two steel plates put in my left wrist to hold the bones together since they wouldn’t heal and all of that combined does not measure up to the pain I have now.

    To make matters worse, the Brachial Plexopathy seemed to just keep getting worse so I went back to my neurologist and had more electrical nerve conduction (dozens and dozens of needles stuck all over in you and then they are electrified to check your nerve and muscle responses. I failed even worse than the first time so he also ordered a CT scan and then another round of the nerve conduction study (Painful as all get out to say the least). I was called back in for a consultation and told that I not only had the Brachial Plexopaty but that I also had RSD (Reflex Sympathetic Dystrophy) a even more debilitating nerve disease. The pain is just too much and keeps me awake almost all night every night so I sleep whenever I reach the point of exhaustion. I am already taking two very strong narcotic pain meds and next Wednesday 5-13-2015 I go in the hospital to be put to sleep so they can give me a ‘Stellate Ganglion nerve block’. They say they must put me asleep for it so it must be a fairly painful procedure I guess.

    My neurologist says that these two nerve diseases basically have to as he put it “burn themselves out” and he told me it could very well be another 3 years or even longer for this to occur if it does in fact let up and burn out at all. 3 more years of this will seem longer than the 53 years that I’ve been alive.

    I currently have a online fundraiser through GoFundMe because all of these additional trips to the big city doctors and hospitals plus parking fees, gas, etc. have wiped my wife and I out financially since I can’t generate any additional income for us. I hate having to ask for help since my wife and I have always ‘done for ourselves, but it’s come to this.

    If you happen to be so inclined to help out a couple of good decent people who have helped many others in the past and that are perfect strangers to you, I give you my word that i will ‘pay it forward’ when ever I can. Here is the link: http://www.gofundme.com/RandysMedicalFund and I thank you in advance for reading this and any and all prayers or help that you may send our way.

    Sincerely,
    Randy K

  • tomjohnson

    As someone who doesn’t know from day to day whether or not my hip or my shoulder won’t work and will send shots of pain every 2 minutes, I love your analogy. I used gasoline as an analogy once: only so many gallons in the tank, and you need to get home.

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  • Pippas Happiness Project

    I posted a link to this page on my website http://WWW.PippasHappinessProject.Com
    Thank you for all you do #spoonieleader

  • sherry

    Not allowing people to copy or re-print her article protects her copyright to her work. If you want to spread her message, you can share the link to her page.

  • roknnagd

    Very nice post

  • Cathy Simmons Buchanan

    Shawna, I too, have RSD/CRPS….19 years. Yes, this ‘spoon theory’ really touched home! Each word you shared…sounds like a conversation I had with my sister yesterday who suffers from Lupus. Such a pair we are…. I’ve always called it ‘monitoring my day.’ Something about spoons….is the perfect analogy. Blessings for your tomorrow’s….may we start to have extra spoons at the end of the day and not feel so left out from our families gatherings and living life to the fullest the best we can. :)

  • Javier Rivera

    not allowing people copy or re-print your article will make this article less noticeable , if you want to spread the message well it will be wise to let it be re-printed or copy … just saying .

  • Michelle

    Thank you a million billion billion times! I have Myasthenia Gravis and I have it on a severe side of the spectrum and I don’t know how to explain to my friends that Yes I look like I have lots of energy and I sure do get around but that’s at the expense of some of my energy and so I don’t do a lot for myself so that I can go and be around other people. It’s not a painful disease per se but my energy drains MUCH quicker than others. I feel such a connection here that I truly love you in a bond that no one understands except us chronies (lol!). Thank you!

  • Jessica Crowe

    This is a great analogy, it took me years to come to terms with having narcolepsy and this theory has helped me get my head around not being able to do all the things I want to do. I would make one refinement though: nobody tells you how many spoons you are going to get each day, you have to make a prediction based on previous days.

  • scotiadair

    Thank you for sharing this. It has been invaluable to me, and I try to use this as an explanation whenever I can. I have shared it on my blog as well (http://scotiadair.blogspot.co.uk), with the hopes that even more people will see it! :-)

  • Parky Janick

    Thank you for your kindness in replying to my comments. I am aware of positional vertigo (where the crystals in the inner ear are dislodged and need to be put back into place). I had that happen after my first bout of vertigo where my head hit a concrete floor very hard. Even after everything was put back into place, I continued with symptoms. I have most excellent doctors who do NOT jump on the Meniere’s bandwagon at the first symptom. I went through seven months of testing to rule out everything else it could possibly be before they were willing to declare it was in fact Meniere’s disease. Unfortunately, this is a disease that too often doctors are ready to say Meniere’s even though it is not just so they do not have to go through the time and expense of tests to come to a more accurate conclusion. There is only one test (the only one that will prove definitively a person has Meniere’s that my doctor would not, and still will not, send me for. I have begged often for this, but it is called an autopsy. I do wish mine were as easy and as simple as a misdiagnosis. I send you much positive energy in coping with your situation every day and hope that one day the governments of the world will see that we with Meniere’s disease, as well as other vestibular conditions, deserve to have a true treatment and cure.

  • JD

    Christine, thank you! The spoon theory will help me explain to a lot of friends or family (who are understanding) just how it feels to have severe chronic intractable pain.
    There are so many of us, who DO know how hard it is; but there are so many who don’t.
    I always tried to keep a spare spoon, but I never knew that was what I was doing. Now I do.

  • Kristen Mohr

    Because it’s on the internet, you can safely share it to pretty much whoever in your family you would like :-) Hoping this helps! (PS: you might not want to put your phone number up on the internet in the future.)

  • Peggy Oakley Lobertini

    Parky, I was diagnosed w/Menieres a few years back and put on Antivert. Not sure if this will help you, but it ‘s worth a try. This was a new doc for me because my fave was relocating. So, I went by my old docs office while she was packing and asked her opinion. She said she did not believe it was menieres. We discussed other options, one being particles loose in my inner ears.My niece is a Ear Doc so I called her to schedule. After may test I had an episode in her office that I had to sit on the floor to not fall, the room was spinning and I had learned to drop so I wouldn’t fall. She determined it was particles loose in my ears and after several apt with her I was fixed! NO Antivery and horrible dizziness for the rest of my life! Thank God!
    If I had not gone to her, I would have never known, belived the firt doc and lived wit menieres the reat of my life! It’s worth a shot! Hope this helps!

  • Peggy Hedges

    I would like to share this story with my daughter as she doesn’t see me as sick. It effects me seeing my grandchildren. She insist that I come to her house. There are days that I do not leave our house. I even have a doctor that is making a house call tomorrow. I am begging you to please let me share this story with my daughter. Please I beg of you. Due to the medical bills we owe our landlord thousands of dollars. His kindness is the only thing that has kept us from being homeless. In his words, he would not feel right about kicking out a husband and his sick wife on the streets.

    I sware the only person I would share this with is my husband and my daughter.

    I beg of you to consider letting me share with my daughter in hopes that I will get to see my grandchildren in our home. The drive to her house is extremely exhausting.

    If you decide against me sharing your story. I want you to know I will completely understand and will hold no hard feelings. I was just approved for disability, but have not gotten the first payment. The amount of my disability will be just enough to cover rent. So the fear of homelessness is not a prevalent as it once was.

    Your consideration is greatly appreciated.

    Sincerely,

    Peggy Jean Hedges

  • http://en.gravatar.com/mentaldimensions Andy Alt

    My DBT therapist gave a copy of Spoon Theory to me yesterday. I thought it was great.

  • ladyjohanna456

    this theory also works for those of us with mental health issues too. I have GAD and I have to plan things fairly carefully. After 20+ years I have my routines down fairly well so I look like I’m fine but I still count my spoons every morning :) thank you so for this

  • Debbie Collier

    Ty!!!! With hypo R.A an lupus my spoons go very quick!! So gonna share this with many whom I feel look at me as if im just lazy r dont care what gets done r doesnt get done not only is the health issues depressing enough on there own but feeling as if yoir being judge an looked down on b you cant do what you used to do..such as wrk 3jobs most days 12-18 hrs a day 7 days a week single mother an now its all you can do to keep a spoon in your hand long enough everyday to eat breakfast!

  • Willadale Meeks-Smid

    Christine, thank you for sharing your story and your explanation of dealing with chronic pain. I have moderate to severe osteoarthritis along with degenerative disc disease and it has really limited what I am able to do. I try not to complain about the pain, but the frustration that I feel in not being able to do everything I was accustomed to doing is often overwhelming. I have never been able to explain what I was feeling accurately, but the “spoon theory” is a wonderfully simple way to do it. I am going to remind myself of the limit of spoons I have each day and learn to use them more wisely.

  • Jamie

    This sounds like my invisible illness, Dysautonomia. A more severe form of this is referred to as POTS. Speak to a cardiologist possibly and find out if a tilt table test would be a good option for you. That is the first test that ever gave my doctors any useful information when searching for a diagnosis.

  • Sarah O’Neal

    Thank you! I cried while reading this because i knew someone understands. My eight year-old daughter was just diagnosed with an immune diffiecency! This is perfect for describing many of her days. I constantly get told”but she doesn’t look sick” I am sharing this with family and friends in hopes it will help them understand.

  • Karen Provence

    I have been struggling on how to explain my Fibromyalgia to my family. I am so moved by your story and so exited to try and give it justice when I attempt to share the depth of feeling you have portrayed. Bless you for sharing. Hope your days are full of spoons!!!!

  • http://mindful-shopper.com/ Amy Kelsch

    Hello Christine,

    Thank you so much for this wonderful story. I put a link to it in my recent guest post about Lessons Learned from Chronic Illness, on Mom’s Small Victories Blog.