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.

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  • Donna

    Thank-you for providing those of us with an autoimmune disease an answer to the question.. after 25 years I still found it hard to explain.. I will use your spoons from this moment on.

  • Kandi

    I have RA, Fibromyalgia and had a stroke in 2008. I have struggled to explain how I feel and I cried when I read this. I love that you are here and that we don’t have to feel alone. Thank you!

  • Toni Allen

    My husband has a disease called Gitelman’s Syndrome, and this spoon theory fits him to a tee. I haven’t cried this much in a while…thank you for explaining it so well.

  • THANK YOU SOOO MUCH FOR THE “SPOON THEORY”. I HAVE LUPUS ALSO AND MOST DAYS I LOOK PERFECTLY FINE, SO IF YOU LOOK WELL YOU MUST BE WELL. THE SPOON THEORY IS THE BEST EXPLANATION I HAVE EVER HEARD. THANK YOU FOR THIS.
    SINCERELY,
    HELEN

  • Twila Setter

    can we share as is this on Facebook?

  • Marieke

    Hi Christine,
    your spoon theory applies so well to my situation; I have chronic fatigue and I am also limited in the activities I can do each day. I have been frustrated for a long time, not knowing exactly why. But after reading the spoon theory I realized that a great part of my frustration lies in the fact that I constantly have to make choices what to spend my (limited amount of) energy on.
    Thank you so much for writing this theory, it really has helped me!
    Greetings from the Netherlands,
    Marieke

  • Benita Robinson

    Thank you for posting this I have Sarcoidosis it effects my lungs primarily but also my skin and bones. People have no idea how much effort it takes to get dressed in the morning a simple task, the shower makes me feel as if I am drowning or suffocating putting on my clothes is at least 4 inhalator puffs then charging the oxygen tank and walking to the car and having to stop to catch my breath when I’ve only gone 5ft…. I re posted on face hopefully it will give my friends a better understanding of how truly difficult life can be and just maybe they will learn to appreciate the gift of being healthy.

  • Nancy

    I also have MS. Every second of every minute of every day, I am in agonizing pain . Most of the time, I can hide it. Sometimes not. I fight my way through it and try my best to keep it hidden. The cost of hiding it is a piece of my soul lost with every breath I take. No one, not even my own family, understands the price I pay to keep it from them. I think that is the hardest part, not having my own husband or kids understand what I’m going through at all times. I can see it in their eyes or hear it when they think I’m not listening. “Suck it up, there are people out in the world that are much worse off than you. Be grateful you’re not one of them.” Well guess what? I AM one of them! I pay a very high price to keep it from them. The spoon theory explains it better than I ever could. Thank you for putting into words what I cannot.

  • Alan Johnson

    I love this explanation and story. I am the husband of a woman with lupus and 2 or 3 other auto-immune disorders and I know she relates to it very well. What often gets overlooked though is that the whole family only has so many spoons as well. We try to make my wife’s life a little easier by using some of our spoons to help her save up a few spoons to do something fun. For example, I take on extra household duties (cooking, cleaning, doing the laundry, etc) so that my wife has energy to maybe attend a card making workshop. Going to the card workshop takes a couple of hours of preparation and a two hour workshop is exhausting so when she comes home she may be exhausted and out of spoons for the day.

    My wife is fortunate that she has a family to help her with some of the daily tasks. Many folks suffering with chronic illness are not so lucky and actually wind up being very isolated as a result of their illness and inability to borrow spoons from loved ones. If no one is willing to give up their spoons, or the ill person is afraid to ask for help and support, they often wind up feeling all alone.

    And then there are the financial spoons. Want to go on a trip? Sorry, it’s time for a medication refill, or maybe a Remicaid injection, or a doctor’s visit, or every 2 – 3 years an ER visit followed by a hospital stay. Want to eat at the new restaurant in town? Well, no. Can’t do it today because the lupus, or maybe one of the medications used to treat it, is causing a major dental problem and it looks like a root canal is needed. That’s a 20 spoon activity as it will knock her out of commission a couple of days. It’s also a $1200 medical bill after insurance so there goes dinner out.

    Christine, I think what most people would find really amazing is that, if anything, you have understated the difficulties a person with chronic lupus faces. I admire my wife for her strength and overall good attitude towards dealing with the daily struggles. I know that every aspect of her life is affected and she often feels guilty because it has impacted my life and that of our children. Everyone gets tired, everyone is affected and there is simply no way around that.

    Fortunately, there are some ways to refuel, to add a few more spoons to the stash: eat well, mild to moderate exercise, laugh at every opportunity (which it seems you are doing), keep mentally engaged, find sedentary but fun activities, physically touch and be touched (e.g., neck rubs, leg rubs, etc), meditate and focus on deep breathing for relaxation and energy. Above all, stay in touch with your loved ones and let them help you as they feel able and never be afraid to say “I love you.”

  • Wanda Cakebread

    I have fibromyalgia and osteoarthritis and somedays I drag myself through the day. I feel frustrated and guilty that I can’t keep up or perform like I once did or what others seem to do effortlessly. This helped me understand my own situation better as well use it to help others understand. Thank you for sharing this important insight.

  • Abso-bloody-lutely fantastic.

    My wife has FMS, I am partially-sighted. It never ceases to amaze me just how difficult it can be to help people understand just what the challenges are, especially when you “don’t look sick”!

    Thank you very much.

  • Thank you Christine as I have Fibromyalgia and deal with similar things day to day and will now use this anology to get people to understand me better. Hopefully.
    Stay strong wise one. 🙂

  • Beatrice

    how about an italian translation? i’m an italian girl with endometriosis, and although different from lupus, i often use this theory to explain to people why i can’t always travel to their place, or have sex with them, or be there when they need me, and do the things i want whenever i want. most of my friends are italian and don’t speak english well, so i would like to translate this page into italian(for personal use only, and then maybe you can use it for your website). please let me know if you’re interested.
    thanks
    b

  • Deane Louise Greene

    Thank you for this explanation – it is easy to understand and really illustrates the issue. This is wonderful!

  • Rory Tennes

    Wow, that was an excellent explanation of living with an invisible illness. I have ankylosing spondylitis, an auto immune arthritis, and I am the same as Christine. Had to learn to slow down, keep track of my ” spoons” for the day. That was very hard for me to do, I had trained my body well and I was used to doing what I wanted, whenever I wanted, as many times as I wanted. Not so anymore. Thanks Christine.
    Blessings to all, may you always have some spoons in your day. 🙂 .:-)

  • Rory Tennes

    Wow, that was an excellent explanation of living with an invisible illness. I have ankylosing spondylitis, an auto immune arthritis, and I am the same as Christine. Had to learn to slow down, keep track of my ” spoons” for the day. That was very hard for me to do, I had trained my body well and I was used to doing what I wanted, whenever I wanted, as many times as I wanted. Not so anymore. Thanks Christine.
    Blessings to all, may you always have some spoons in your day.:-)

  • Linda

    I have ms and have had breast cancer..I also have two children with autism….
    I love the spoon story…
    It is a great way to tell your story…
    God bless.

  • I was diagnosed with MS last year and I’ve been looking for a way to explain the terrible fatigue I sometimes have. I’m actually in hospital right now and just today a nurse said that I didn’t look sick enough to be in her ward. When health professionals don’t even get it how is anyone else supposed to?! Thank you for sharing your story x

  • Lisa Richards-Kreisher

    I have had severe Fibromyalgia (yes, it has “levels/degrees”) for almost 12 years. To make a long, VERY upsetting, story short (Family-in-Law NOT believing you have ANY affliction, whatsoever), I want you to know, as I sit here, crying, having just read your article on “The Spoon Theory”.. May God BLESS YOU, Christine! You have put words to something I (too) have struggled to explain.. ALL these years! (And, I’m a writer) Your “Spoon Theory” is nothing short of BRILLIANT! You’ve not only given me a tool to use in helping those around me/in MY LIFE to understand me, and my affliction, better- you’ve given (as you so perfectly stated, “How do I answer a question I never was able to answer for myself?”) ME the tool to understand MYSELF! Amazing! Thank you! Thank you! Thank you! Grateful/”But You Don’t Look Sick” in Ocoee, FL *Fibromyalgia/R.A. (Fibro “opened the door”, RA came 1yr later)~

  • Thank you for putting into words what I have been trying to understand. In my life I have been lucky to have known some wonderful people who happen to have different chronic illnesses – your words help me to understand better.

  • I have mitochondrial disease and it is so hard to explain. I have the same issues. Think about it every day to not over do it and drop things b/c it will be to hard on me. or to be in bed for a day or two. Thank you for sharing.
    Missy

  • Pam

    My BFF just turned me onto the “Spoon Analogy” and wow I’m blown away and want eveyone I know to read it. I have been suffering with herniated discs and associated nerve damage and chronic pain, gone is the carefree life I once knew. I’ve struggled to continue to work and have had to quit 3 jobs because of it yet the docs don’t want to operate and I don’t want to be on disability. So I keep plugging away looking for the perfect job where I can sit and stand and lay down if I have to with a computer on my lap! My days and nights are filled with pain that I tuck away so my family, friends and the public don’t know that I ran outta spoons days ago and need to do nothing but regroup so I can have the handful of spoons I need and learn to use them wisely. Thank you Christine

  • Diane Whitbeck

    I have had fibromyalgia since 1990 and found your story of the Spoon Theory to be a very accurate depiction of what it is like to live with fibro, day in and day out. Because I don’t “look sick on the outside,” people – even those very close to me – often don’t understand what an effort it is for me just to exist and try to function each day. And I say “try” because some days I just can’t do much more than feed myself and make it to the bathroom, where I often have to vomit from the pain! Thanks to the Spoon Theory, now maybe I’ll be able to explain to those who challenge my legally sanctioned use of Handicapped Parking – maybe I’ll even start carrying around a set of 12 plastic spoons so I can illustrate, like you did! Of course, standing there talking to them would cost me another spoon! 🙂 Maybe I’ll hand out flyers?!

  • Jennifer Pierce

    The same goes for anyone with Fibromyalgia and/or Chronic Fatigue. Thank you for this timely explanation. 🙂 *gentle hugs*

  • I am permanently disabled with P.O.T.S (Postural Orthostatic Tachycardia Syndrome) fibromyalgia and an array of other things and mental problems…This..was perfect, thank you. It is so hard to explain to people whats really going on, the words are just never right. Thank you

  • Rachel

    Thank you for this. I have this in two ways. Physically, I have to balance my number of spoons because I have Fibromyalgia. Mentally, I have to as well, but with how much stress I can handle. Sometimes, I just have to go take a nap or escape. I have bipolar, and three anxiety disorders. Panic attacks and bouts of depression also grab at my physical spoons. It’s hard to balance it all. I hate it when people say I’m just being lazy, that I am too young to hurt like this. They don’t have my body- they don’t know.

  • heidi

    Thank you for such an extraordinary story of two great friends. I have a great friend as well, and she has been battling Breast Cancer,for a little while now and is on her way to a Walk for Breast Cancer event. I’m so proud of her. As well, I have lupus is alot a categories. I believe you know what I mean. Th point was she has been there for me in difficult times but still had a hard time dealing with it. Until she was given her diagnisis. I ran into her at the hospital and actually had not talked for quit some time. She called my name down the couridor, I turned to a voice i recognized but not a face. The closer I got and relized it was her she grabbed me with a hugg that had such meaning all was forgotten at that moment. She was crying and said now I understand what this world of disease is like for you and I’m so sorry. I told her none needed glad to see you and the friendship was recindled. My q’s is if I may print this for her. I’d like it for her to use as a tool for her family who are sometimes not so understandin? Thank you for your time…..
    Heidi

  • Terri Friesner

    Inspiring. Thank you for sharing….I hope every friend you have is a deserved spoon!

  • Jeanette Tron-Nunez

    Like many others have said, I don’t look sick. This is a great way to explain to my friends and family how I feel and what I have to go through on most days. I’m just more aware of the things that truly matter. Thank you for this, I will be sharing with all of my friends and family 🙂

  • I am up early today. not really wanting too, hubby has begun his early shifts for work…so I auto wake up.This story touched me and I cried, diagnosed lupie going 8 years…tough sickness..lots of meds too help with the pain every minute,everyday…i do wish too run outside and have fun and be painfree,without limitations, or the backlash of doing too much…I have learned it is too big of a price to pay…I now understand the spoons, Thank you so much…..

  • Joel karlsson

    I want to thank you from the bottom of my heart. My wife is living with degenerate disk disease and fibromyalgia. I have understood some of her priblem but reading this made me cry and it gave me a deeper understanding if it. I am trying my best to he there and help her in any way I can to make her have more “spoons” left but sometimes it is hard for me and I feel frustrated since I feel like I have to do everything, even if I intellectually know she’s doing her best. Reading your article will make me understand that emotionally as well as intellectualy and for that I am utterly grateful to you.

    I wish you a life with tons of love and happiness!
    Joel

  • Lisa McDaniel

    I was diagnosed with MS 4 1/2 years ago, at 46–6 months after my younger sister was diagnosed. I am blessed that I have fared much better than she has so far and that makes me grateful and sad. That being said, I’d love to give a copy of this to everyone in my family who just don’t get that I cannot do everything I used to, that when I try I often pay dearly, and that painful experience has taught me the limits I have to set for myself so that I function and feel as well as possible. It’s like because I’m still mobile there must be nothing much wrong with me. No matter how many times I tactfully try to explain why I can’t host a family parties on Sunday night when I have to get up for work at 4 the next morning, they keep pressing and I end up feeling like the bad guy.

  • Aaron

    Absolutely perfect example. I recently broke my left shoulder causing permanent unrepairable damage in a work accident (which I can never do again. Train Conductor no more). As a result of the fall I have also damaged several discs in my back pinching nerves. My wife (whom I’ve been with almost 13 years) hasn’t been able to understand what I’m going through and how hard it is to help with our 3 children (4, 3 and 7months). I have to decide how bad I want to hurt tomorrow by my actions today. Ex: Wifes in bed with the baby and the oldest has a nightmare. Do I let her climb in bed with me and have her up my backside (-1 spoon) or do I get up (-1) (which is one of the most painful things I do) and tuck her back in (-1). Maybe its one of those nights where she can’t stop crying and I sleep on their floor (-1 getting up, -1 tucking her in and leaning down for a hug and kiss and -1 for getting on the hard floor). The next morning from there is the most painful day I have, but I will be dead before I let my kid suffer if I can help it. It’s usually a -2 morning just waking up and getting off the floor.

    I could go on but you understand and don’t need all that. THANK YOU for putting it in a way that I can explain it to my wife, friends and family.

    Motto I live by after having a youth of trouble and pain: It’s not the mistakes in life that define us, but the way we recover from them that does.

    Thanks again, Aaron C. of Toledo, Ohio

  • Sydni Gauwitz

    Dear Christine,

    Thank you so much for sharing your spoons theory. I have Chronic Lyme and Mycroplama. I have been living with the Lyme Disease since the age of 6 and was finally diagnosed in early October 2010. I have been in treatment ever since with little to no improvement. I am also being tested for other diseases and infections. I can relate with you….every little thing is a spoon. I guess that explains why I am exhausted every morning…before I feel like I’ve done anything. Again, I can’t thank you enough for this post. It will make for a much greater and easier for opportunities for folks like us to explain our hidden illnesses.

    God bless you )
    Sydni Gauwitz

  • Suzy

    Not to be a nay sayer…because, obviously so many have decided that your spoon theory is gold. But as a “normal” “healthy” person I think you really don’t understand how the rest of us count our spoons every day too! Nobody has unlimited spoons. Nobody. We all make decisions about what we do everyday in order to have enough of ourselves to get to the end of the day. I’d say the only way your theory applies is to children who mostly don’t make decisions about how to end up with a positive spoon count at the end of the day.

    Now, it’s not that I’m dense and don’t understand what you were trying to illustrate. Truly I do. I am a grown up with 5 kids and developed RA in my early 40’s. I really understand managing energy vs. time. Truly I do. But, it wasn’t any different than managing energy vs. time after RA than it was before when it was just “normal” exhaustion from being a housewife, daycare operator, mother, and chief cook and bottle washer of my life! It’s just management. And just for the record NObody ever gets to have it all. Not even “normal” “healthy” people. We all get to have what we have…that is all. We just get to have what we have.

    I am super satisfied to have what I have! No whining, no spoon counting, no comparing spoon collections to others. I’d be horribly disappointed if I started comparing my spoon count to other’s spoon counts.

  • Elisabeth Foley-Teuben

    Hello Christine,

    What a wonderful analogy in this tale!
    To have a friendship like this is a blessing in itself.
    I have had Rheumatoid arthritis for many years and like you, i do not look sick. my parents and brothers and sister (all aged 45+) think (and have said to my face) that I am lazy.

    May I post a link to your page on my Facebook site?

    I hope the medical/pharmaceutical people will be able to find something that gets you more spoons!

    With kind regards
    Ella

  • cindi

    great article!!!!…..it explains so much!…..and you’re right….there are other illnesses this can be applied to as well!….thank you for sharing!!!!

  • val Lewis

    I have just read your spoon theory and it made me cry,having arthritis and fibro and chairi for several years now,the way you explain the pain,fatigue and emotional feeling is good and will help me try and explain to family and friends. thanks x

  • Norma

    A friend sent me the link to this and ***mind blown***. I live with Ankylosing Spondylitis, a lifelong disease that causes inflammation, pain, and stiffness mainly in the spinal joints. Today I am home sick and feeling guilty. Yesterday was fine and I knew that I would be taking my methotrexate injection last evening. I did all of the prep work so that I could make it to work today on time. However, it didn’t matter. I am severely nauseated and fatigued, running a low grade fever. But “I looked great yesterday”….how can I explain this to my co-workers? The Spoon Theory! You will never know how much gratitude I have for this article.

  • Hi Christine,

    Thanks for writing this.
    Send it to people if they truly want to understand my illness. I have fibromyalgia and artroses and recognize a lot in your story.
    I have translated your story in Dutch, for those who visit my blog and can’t read English as good.
    If you want I could send it to you too, so you will have it for others to use.

    Thanks again.
    Love, Bianca

  • Michelle OHara

    I would like to say that I think you hit the nail on the head with this one. I have been fighting with Sarcoidosis for many years and as I am in stage 4 and the symptoms progress it is hard for people to understand what I feel. My husband read this too and wants to tell you it is important to note that the spouse has these days too.

  • Donna Millspaugh

    I have had MS for years and I don’t look sick, so this is such a wonderful explanation of how I get through each day. I learned that I must use my spoons more wisely. I could never have explained it. God bless you.

  • simone

    i was given the news yesterday that i have lupus……what a great way to explain…..i am in terrible pain but i am not letting it hold me back….life will move on!!!!! GODS GRACE

  • Lorie Francisco

    I definitely know how you feel. I was diagnosed with Chiari Malformation 1 in 2009. I had cranial decompression surgery in 2010. What is hard for me is that healthy people do not understand that you cannot live like they live. I love your spoon theory. This is exactly what life is like for me and 3 of my family members. My daughter is 25 and was diagnosed with Chiari this year. My younger sister was diagnosed in 2005 and had surgery in 2007. Her daughter was 12 at the time she was diagnosed and she had surgery in 2009.

    Chiari Malformations are a set of neurological conditions which afflict approximately 1 in 1,000 people (300,000 people in the US), causing debilitating headaches, neck pain, weakness and numbness in the limbs, balance problems, visual disturbances, and a host of other symptoms. Chiari Malformations are located at the
    base of the skull. Part of the brain, the cerebellum, descends out of the skull into the spinal area. This results in compression of parts of the brain and spinal cord, and disrupts the normal flow of cerebrospinal fluid (a clear fluid which bathes the brain and spinal cord). If left untreated, Chiari can lead to the development of a fluid-filled cyst in the spine (syringomyelia) and cause permanent nerve damage and paralysis. Chiari is a complex disease which is poorly understood, and being diagnosed is an overwhelming experience. Patients are thrown into a whirlwind of medical jargon, tests, and surgery, all the while not knowing how things will turn out in the end.

    Chiari Facts:
    • Affects people of all races and ages; in fact, at least 30% of children born with spina bifida also are born with a Chiari
    malformation.
    • Causes a wide ranging, diverse set of symptoms. Research has shown that 95% of patients experience at least 5
    symptoms.
    • Diagnosed using combination of MRI, neurological exam, physician’s judgment, and other tests; patients often
    go 5 or more years before being properly diagnosed.
    • A study of over 300 patients found that 57% had at one time been told by a doctor they were suffering from a mental or emotional problem.
    • A world-wide survey of neurosurgeons found there is little agreement on how best to treat Chiari, leaving patients in
    the position of having to put total faith in their doctor.
    • Many physicians are not familiar with the latest findings, so treatment plans may be based on old, inaccurate data.
    • Many patients undergo traumatic surgery in an attempt to stop symptoms from progressing.
    • Upwards of 50% of patients continue to suffer from symptoms, such as chronic pain and nerve damage, even
    after surgery; many patients end up on disability, socially withdrawn, and depressed.
    • The physical, mental, emotional, and economic strain caused by Chiari often pushes families to the breaking point
    *Chiari Affects Everyone Differently*

    Thank you very much for writing this. My prayers are with you and everyone else who is suffering in some way.

    For more information about Chiari go to http://www.conguerchiari.com

  • Gaye

    Thank you, this explains things so well.

  • Anomalous

    Well worth the spoons it cost to read.

  • daisy

    THANK YOU for using a spoon to write this.
    It articulates so well what it is like living with a chronic illness. I shared this with my family and friends who said it helped them understand better what I go through. They now ask me about my spoons!! My boyfriend will ask what chores he can do to save me some spoons.
    It also makes it easier when there is a bad day. You can simply say, I started the day with less spoons and everyone immediately understands what this means for you.

    Thank you!!

  • babs mason

    thank you for this wonderful story. have you published it so i could purchase copies of it? i have systemic lupus and people don’t understand. they think i am okay or maybe a dramaqueen because i don’t look sick on the rare occasions i am able to go somewhere. besides that you really helped me to understand myself more since i am my own worst enemy. your story is wonderful and needs to published in a booklet form so it can be more widely distributed. i know it would be a hit and a money maker for you. thank you.

  • Brainlock Has Lupus R-Arthritis

    Thank you!
    and this didn’t really touch on the constant joint pain I’m in everyday, either!

  • annie

    thank you christine, for saying what everyone who lives with chronic pain trys to say,everyday, you have explained this in such a way that family and friends can understand more of what we go through each day, you have changed so many lives for the better, i just wanted you to know that.. thanks again..