The Spoon Theory written by Christine Miserandino

 

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

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

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© Christine Miserandino

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

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

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  • Debi Porteland

    Absolutely Amazing! I had a wonderful nurse practitioner who understood my chronic pain (5 car accidents, a disc replaced in my neck ) and depression. Like many of you who have posted, I never know what the day will bring-it can be a struggle just to get out of bed. I’ve been fighting to get disability and recently my nurse practitioner retired, so I now see the one who has replaced her-she doesn’t seem to understand my daily struggles and now, using your “spoons” article I feel I have a way to explain myself. She will ask me, how long can you walk, stand, sit? Well, I can give all my spoons away in one day and then spend two days in bed. Thank you for putting into words what I need to explain to my health care provider. I must conclude, that I feel very fortunate that I have a loving husband who understands that sometimes my spoons are depleted and he patiently helps me re-energize and gives me more spoons.

  • Dreama

    I have chronic daily migraine. People just don’t understand what it is like to feel like you have a jackhammer going off in your head constantly. Or the fact that my hair literally hurts. I am not as bad as some I know. But your story will hopefully help me to explain how it feels to have a chronic disease. Thank you.

  • Janice

    Thank you so,so much for this story.It is so true about Lupus,any illness,etc.I am buying posters for my Fibromyalgia group,3 doctors’offices and for myself and some family members.I am so sick of this “But you don’t look sick,you look fine”,comment that I could scream.I have Fibromyalgia,Parkinsons and a few other ailments or illnesses,but I know there are people suffering more than I am but that doesn’t stop my pain or not being able to do as I would like,I still am sick too.My Mom had Lupus and so far I do not have it or it has not shown up.You all have my blessings and prayers.You are strong,smart minded people with positive attitutes,not saying you don’t suffer,I know different.Your words help others to maybe cope or teach people a little of what we are going through.Thank you from my heart.

  • Janice

    Thank you so,so much for this story.It is so true about Lupus,any illness,etc.I am buying posters for my Fibromyalgia group,3 doctors’offices and for myself and some family members.I am so sick of this “But you don’t look sick,you look fine”,that I could scream.I have Fibromyalgia,Parkinsons and a few other ailments or illnesses,but I know there are people suffering more than I am but that doesn’t stop my pain or not being able to do as I would like,I still am sick too.My Mom had Lupus and so far I do not have it or it has not shown up.You all have my blessings and prayers.You are strong,smart minded people with positive attitutes,not saying you don’t suffer,I know different.Your words help others to maybe cope or teach people a little of what we are going through.Thank you from my heart.

  • Hi Christine!

    I read this and thought how prompt and thorough you were to answer the question of understanding how it feels to be ill with Lupus. I am disabled as of 2008, but became very ill in 2006. I was a single mom with a 3 year old, and I could not drive, walk a straight line, or talk without slurring and forgetting. I was diagnosed at age 27 with MS but now 18 years later I have been told I have Polyneuroapthy, Trigeminal Neuralgia, Risk of Cerebral Folate Deficiency and the list does go on. I thank you so much for the spoon theory so I now have a better way to depict the picture to others. My daughter now 8 knows something I have drilled in her when we go to the store. Mommy’s gas tank is not full like everyone else. I remind her that she and all other healthy have full tanks of gas. I’m running on half if not less. When we are in the store it is go directly, with no distractions to the items on the needed list. As we wander around distraction always comes in for both her and I….but soon I am reminded that now my gas tank is almost on empty. So I tell her, Mommy’s tank is running out….we have to hurry.

    God bless you and your family. Your story is one of true understanding….as you understand they don’t understand, but you did it with kindness, and not upset. You gave a great theory!

  • Anne

    THANK YOU so much for this article and amazing way of explaining these types of diseases.

    I have been suffering for 9 years with some type of autoimmune disease? – diagnosed with lupus-?, but not confirmed about 7 years ago. I have been married, divorced and through hell and back because of this disease and was so excited to read your story- glad I am not alone:)

    Thank you again for your amazing story- it is ppl like you that help the rest of us tell our story!!

  • Sue

    Yes, it’s so true. I live my life this way all the time and on my own. Things that “normal” people do in their lives are at least twice as hard to accomplish for people like us with disabilities and illness, and we are so limited in how much we can do. I find it hard to deal with people such as salespeople etc. The effort involved and stress of it just adds to the mountain I cannot climb.

  • Aryanna

    Hi, Christine!

    My name is Aryanna and I’m sixteen years old. I have Ehlers-Danlos Syndrome (EDS), hypermobility type. When I read about the Spoon Theory, I instantly related to it. Being in a wheelchair and not being able to attend high school, I craved some way to explain my lack of energy to other people.

    For example, my Dad came in from out of town and he really wanted me to go take family portraits with my siblings. Automatically, I protested and tried to explain that it was not physically possible for me to go. I received a lot of “It’s just for a little while” and “Just come with us” from them. I started to panic because I am not good at saying “no”. Then, I interrupted them all and calmly explained the Spoon Theory. From the start, I had captured their attention. When I finished explaining, I sat back (I probably used a spoon getting myself all worked up!) and for the first time, I realized I stood up for myself.

    The Spoon Theory gave me confidence in that I am not the only one out there faced with these problems. And I am certainly not the only one that has a great sense of appreciation toward you for creating and sharing this.

    I hope you are doing well!
    Aryanna

  • Steve b

    Wow. Finally someone comes up with an easy to understand example of what people like us go thru. I have fibromyalgia, and get little support from people. Can’t wait to use this!! If they don’t understand or care…I may throw spoons (or knives) at them! Lol

  • Thank you so much. It is so hard for anyone to understand the way I feel. You are so right… I’m to tired to write anything else this took a spoon from me……God Bless

  • Thank you for sharing this, Christine. As a pain specialist, I see patients every day facing these kinds of limitations. I hope I can make a difference and “buy some more spoons” for my patients. Getting their life back is the whole point! Thanks again. ~Kate

  • sorry- no republishing- just linking! but please link!!! <3

  • Andi

    Thank you for this. Several of my friends are sickly in one fashion or another and I try to understand but sometimes I forget and take for granted their presence. I think this helped me look at them and not ignore that they don’t get to be as carefree as others and I shall try to keep it in mind. Unsettling as though it can be. I shall be especially good to remember it when they’re spending a spoon on me 🙂

  • Amanda

    I heard about the spoons theory for the very first time this afternoon, from a girl I barely knew. Until today, I never knew how to explain my autoimmune disease to anyone; not even myself. This story has taught me more than any doctor ever could about understanding my disease. This story is a truly remarkable lesson. Thank you so much for sharing your story!

  • I would very much like to re-publish your story on my blog. It is awesome, and perfectly represents how it is for me trying to get others to understand I look okay, but that dementia is stealing who I am. Please advise if you will give permission for me to do this.
    Many thanks,
    Kate

  • I would very much like to re-publish your story on my blog. It is awesome, and perfectly represents how it is for me trying to get others to understand I look okay, but that dementia is stealing who I am.

  • maryann

    after all these yrs trying to beg people to understand about my special needs because of my health issues,,,my husband read “the spoons” art. and now he simply asks me though out the day how many spoons do we have , ? do u have enough to go out to eat?or to make love? or sometimes just do i have any spoons to get out of bed that day….this is an awsome story…thanks so much..maryann

  • Finally a way to attempt to make others understand my daily life with Chiari. If its ok I want to give s copy to every doctor I see. And to my family and my co workers and everyone else who does not understand me or why I can no longer do the things i love. My daughter also has Chiari but except for headaches she remains asymptomatic Thank God. But she loves to live in denial where I am concerned . She thinks I.exaggerate my exhaustion and my pain. She thinks Mom is invincible and just doesn’t want to do things i used to do. So wrong. I wish and pray I could go and do what I want but i have to dole out spoons carefully. Thank.u.again for explaining it in a way that all should be able to understand!

  • Marja

    Thank you so much.
    In twenty years I had no way to explain to others how i feel. Now i can simply give them your text.
    Would you mind if i translate it to Dutch ? Nor all of my friends and relatives understand English.

  • deborah anne

    i have a rough 27 months fighting for the right to live in accessible sanitary housing,..at the time i am trying ti just find my equalibruim and strength. this is just a rest time to me…i WON”T BACK DOWN…BLESSED BE

  • Sharon

    My daughter is waiting to be diagnosed but we are pretty sure she has Lupus. Your explanation is perfect for me as a mother who is desperate to know what is going on with my child. I have seen her get increasingly worse and we have tried many things but never with success. This disease effects the family. We are hopeful that the medication will give her some relief. Thank you for this description it is very helpful to see it through your eyes. – Sharon

  • Wayne R Russell

    Thanks for exspressing your dealings that way, the spoon theory is a good way for us understand/have a little more insight to others that deal with lupus illness. Your spoon theory was brought to my attention, in a video clip. I have a new love/partner, in my life. She to deals with the lupus illness. I am here for her-waiting for her to open up and explain how she feels/deals with it all. I dont pressure her to explain how she feel-she will tell me when she is ready. But right now, she wanted me to read your spoon theory. Your shareings help me understand more than what you think, because i have had several days with this beautiful little woman-where i dirtied all her spoons, or i could say she used all her spoons on me. I feel rotten inside knowing that it takes her spoons to deal with me. But your spoon theory is/will help me think and understand how i can be a better person to/for her. She means alot to me and i dont want to lose her-she loves me dearly. She reasures me(that everything will be alright) in a way thats makes sense now. She tells me-that i have her for the next 20yrs, so i guess in a of thinking-that even though i mite take a few spoons away one day, that maybe i provide more spoons for her on a different day. Your story/theory is helping me with her, it also may help me share with people how i feel and how i keeping going everyday with the repercustions from breaking my neck over 20yrs ago. I can only say for my bad days, i open my eyes to see no spoons and it feels like someone smashed the back of my head with a big hammer, after a few painful hours, i start finding a few spoons. Thank you very much for your story-God bless you from Lori Smith and Wayne R Russell.

  • Tonya Gutridge Dochstader

    I just wanted to say thank you for finally giving me a way to explain how life is to me. I have RA, SYSTEMIC LUPUS, FIBROMIALGIA, NEUROPATHY, AND INTERSTICIAL LUNG DISEASES, which causes tumors in my lungs and several more sub diseases which ad god awful, and each one causes horrendous pain. On a scale of one to ten, the lowest I ever reach is a ten, and only if I take my 80 mg Oxycontin and 6 30 mg oxycodone immeadiate release Exactly on time EVERYTIME they are due. If I get behind the eightball, it takes at least 48 hours to get from 11 (Ha ha ) to a 5. I am going to send all my family and friends to read this. A suggestion would be to add what the financial burden it is when you lose your insurance and the one thing that I still had that I lived for, my career. Thanks again.

  • Lori Smith

    Thank you Christine for the spoon theory…it helps me every day..I have had lupus for years and no one understands how it is to deal with everyday life…everyday little tasks,makes me feel a little better that someone out there does understand.

  • GAIL PRICE

    First time i have read it, I have MS, and my family and friends ask me what is it like, how do i feel, etc, and i cant explain it. The Spoon Theory is perfect. Thank You.

    Gail. xx

  • Ky

    Hello!!!

    Thank you for writing this!!! I have Complex Regional Pain Syndrome and my doctors are now hinting that I have Fibromyalgia too…more people need to read this and understand what it is like…there are days I start off with no spoons, it feels like…it costs way too much to even try to begin a day!!! I’m going to share this with my Facebook friends in hopes that more people will understand!!!

    Thank you!!!

  • Kathy Williams

    Thank you for a wonderful explanation. God bless you and may you always find a reserve spoon when you need it most. xxx

  • Katrina huff

    I absolutely love this. I have eds ( ehlers danlos syndrome) and was wondering if we could us this to explain to people. Thanks

  • Vicki

    Thanks for the comparison! I was diagnosed 2 years ago with spinal fibrosis, arachnoditis, and now severe nueropathy in both legs. And failed back surgery! I use a cane just to walk somewhat, I am supposed to wear braces on both legs, and driving is not encouraged. Every day I get up and wonder what today is going to bring – how much morphine, how much percocet, how many muscle relaxers am I going to need to just function today! I try not to give in to the depression, anger, and hopelessness of things but I do miss my “old” life – teaching children, camping, on the go constantly, being happy, dinners with friends, etc. I too have “lost” friends over this – “You take too many drugs, this is all mind over matter, you can control the pain if you really want to, etc! They just don’t understand, if I had any other options besides being completely bedridden, I would choose those options instead.

    Thank you God for giving me 5 beautiful, wonderful grandchildren, 2 fabulous sons and their equally wonderful wives, and the best husband ever but yes. Everything has to be checked through Mom to tsee if she can handle this or if she is up to it! Do I have any spoons left to play with today!

    Count your blessings (that does not cost you any spoons!) and get on with life as it is right now.

  • Caitlin

    I have been trying to find away to tell people how I feel and you just made my day and my life so much easier thank you for taking the words from my mouth!!!

  • allen

    thanks for the spoon theory,i am bipolar manic depressive.my spoons consist of Having to walk out of my front door or answering a phone because of panic attacks fear that of normal everyday things people do with out thinking about.having crying spells that were i have to hide or stay alone because people would not understand,thinking that death would be alot simpler,taking meds that are very addictive,one pill to get up in the morning a pill to keep you from crying all the time.one to stablelies your mood,eleven pills a day just to stay alive,not to mention the side affects.plan your day as Christine explained so well. so you don’t lose it,seeing a consular as much as four time a week,then you decide to quit taking your meds because the side affects,its a roller coaster of life,sometimes hell on earth is what it fills like.and after 52 years of this i read Christines theory.thanks because i now am not ashamed of who i am,SICK,god bless you for helping all of us help those who don’t understand.this reminds me of a song by van morrison,HAVE I TOLD YOU LATELY.i thank all of you from the bottom of my heart.

  • Linda Blue

    I just read The Spoon Theory, and I want to thank you. I have ESRD and Fibromyalgia (and all the little bells and whistles that go along with each disease), and would love to show your article to everybody in my life! Most of the time friends and family try to ignore that anything is wrong and act as if I just push myself I can do anything I set my mind to. As you know, that simply isn’t the case at all. Thank you for writing such a wonderful story. I love The Spoon Theory and will probably adopt it within my own life, if only to myself. None of my family and friends are ready to hear it. So for now, I’ve given you one of my “spoons.” Thank you.

  • I love this! My way of explaining it is…” I pick my pain” in others words I decide what I will do because I know that almost everything has a cost to me in my pain level.
    I am going to share this article. Thank you so much for sharing.

  • Renee

    Hello,
    Thank you for such a remarkable story. As a nursing student and a person who has family members who suffer very similarly, this really touched me. I will remember it. Thank you.

  • angela

    Hello Christine,

    I have a cousin that is sick. She mentioned “the spoon theory” to read it. I am taken back. I didnt realize the pain she goes threw every day. The decisions she has to make daily due to being sick. I want to say thank you for posting this. I wish you comfort and love. Thank you.

  • Eileen Nielsen

    tHIS ARTICLE IS excellent. I identified 100%. I have had Type 1 Juv.Diabetes for 51 yrs.SLE for 25 yrs. Fibro for 18 yrs. arthritis,osteoporosis,Hashimoto’s thyroid,Thoracic Outlet Syn. Depression,chronic 24/7 pain. Every time I have had to move I have to expain all over again to my new friends why I can’t”just push myself”. That in itself is exhausting and many times futile. The spoon theory sounds like a try. If I have the energy. Ha Ha!! I THANK GOD FOR sustaining me, His mercy, love and unconditional acceptance of me. He does not send these illnesses to whimps, remember that. It is harder to live this way, especially if you have no help; than to die. Be proud of yourself that you carry on. Doesn’t matter the speed, although frustrating. To people who TRULY love and accept you, it doesn’t matter. I was very glad to receive this from one of my daughters.

  • Charmaine

    Thank you Christine for your story. My illness is different, but the same. I have anxiety. Some days I wake up with 20 spoons. Some days I wake up with 5. I struggle to even go to my kitchen. My whole body hurts. I haven’t had medical for 3 years, so I am at the mercy of our county clinic. I’m happy to say I have medical now due to my boyfriend being able to claim me as a Domestic Partner, but I don’t have an appointment till Thursday. I have one pill left, and am already starting to feel the withdraw pains. The next few days I wont have many spoons. I’m excited to share your theory with my friends and family, so they have a better understanding of how we feel. Thank you!!

  • Thank you, Thank you, Thank you!

  • This is a WONDERFUL & insightful link!!! I suffer from SLE, and it is the most complex d/o to explain. And the suffering is emence… Another thing that noone understands except people who suffer with this horrific ailment. Thank-you for writing such an easy lay term to explain to people that have ZERO clue…. The spoon method is a way to explain synonomosly without getting into medical jargon most don’t get. IE, I am a nurse so I can rattle it off quite quickly & of course it is NOT my only autoimmune illness.
    THANK -YOU…..<3……

  • Amy

    Christine,

    First off, thank you for this. This was shared with me by a good friend who knows first-hand my struggles with chronic pain and people not understanding because I “don’t look sick”. I have been in 2 serious car accidents in the last 3 and a half years and needless to say, they’ve taken their toll on my body. I’m a college student and I try really hard not to dwell on my injuries and the pain that comes with them, like you, I also joke around and make fun of myself, lest I completely fall apart. Unfortunately, this leads many to question the legitimacy of my limitations because on those rare occasions I have extra “spoons”, I try to do something I enjoy. It is often difficult for people who don’t see me often or seem to only see me when I’m feeling well to understand how bad I can get. The Spoon Theory is a tangible way to explain to those luck enough to be healthy what it’s like to not know how you’re going to feel each day and the toll having a chronic illness or pain takes on us, both physically and mentally. I wish you all the best and hope you have more “extra spoon” days that “short spoon” days.

    Take care and thanks again,

    Amy :o)

  • elizabeth

    Hello Lovely Christine

    I got out of bed yesterday and everything went horribly wrong. When I got home, my sweet friend had sent me this. I notice that it’s from 2010 so I can only assume that you’ve been too sore or tired to write for a while. I love the spoons, I’m going to either send it to or do it for everyone I know, and I just wanted you to know that you made me feel understood on a very bad day. I hope you are feeling strong in some way today and that you can find someone to help you and something to laugh about.

  • I would like to say a big thank you for this post! I hope you don’t mind but I am going get as many people as possible to read it. I have chronic fatigue syndrome and this describes my life! No one I know understands but I hope they read it and understand!

  • Floozie Dietz de Broise

    This is a perfect way to explain to people why you don’t look sick, because you spent one of your ‘spoons’ on putting on blusher and lipstick but sometimes I simply let people see me grey faced in pain just so they have an idea. I also frequently say I am fine when I am not because people simply don’t want to know unless they are in the same position.
    Finally I thank my very very dear friend Shellie for directing me to this site. It is 2.40am and I cannot sleep because of the pain, I have indigestion because of the painkillers I took at bedtime but this is so good to read it was worth getting out of bed for. Thank you

  • Valerie

    Thank you for this. It says exactly what I couldn’t say. Yes, we have to decide what is “spoon worthy”. Some days we have more, some we have less. But there is absolutly no way to predict how many we will have tomorrow.

    (a take on Elaine on Seinfield and her “sponge worthy” dates…you might be too young for this, but if you get a chance to see it, you’ll understand my connection).

  • Colleen

    I just want to say thank you Christine. I was recently diagnosed with Fibromyalgia but i’ve had chronic pain for 14 years. I’ve tried many times to explain to family and friends how I feel every day but couldn’t find the right way or words. I’ve been accused of faking or making it all up and have even lost friends over my FM diagnosis. I cried when I read your story (and I’m at work!) and I realized today that many other people feel the same way I do (unfortunately). But anyway, thank you for sharing and also giving me inspiration to keep going no matter how hard it is!

  • Melinda

    Fybro is it for me, My son doesn’t understand. I have a weight
    problem as well. When I say I feel like I am 90 years old, his remark is well–when your ready to do something about it…….. My knees hurt more when its cold than when I’ve been on them.
    I’m tired of trying to explain…the hurt….

  • Chantal

    I love your spoon theory, though for me, my condition feels like having twelve spoons in my hand the whole day, and take that in consideration with everything I do. “Normal” people can do what they want and don’t have spoons to carry the whole day or night, while I have to search for a balance in things, especially psychological, by being a bit limited because the spoons will never leave my hands and therefor restrict me.
    The other way around, but in a way the same, we have to think about our spoons 🙂
    Thanks!

  • Natalie Jones

    I recently went through a similar exercise trying to tell people what a difference the benefits that I receive from the welfare system mean to me as a disabled person (ME, spinal arthritis, depression and more). The best analogy I could find was had anyone ever lost their door key or forgotten it and found themselves, at the worst of all possible times locked out of their house. The frustration, anger, feeling of stupidity and helplessness, the sheer desire to kick yourself and anyone who walks past and sniggers. The utter need to scream it can lead to simply because where you need to be is on the other side of that door and everything will be alright. But without the key you’re stuffed, totalled, screwed. You’re going nowhere. (Especially if you’ve just left the house and your car keys are on the coffee table with your house key!). I tried to make people realise that losing our benefits – which we’re under threat from right now in the UK – was like being locked out of your life, unable to do the simple, easy, everyday stuff that normal people take for granted. The average, simple, mundane tasks – like dressing, standing, being able to sit comfortably, getting to an important appointment, being able to shop or visit friends or cook a meal. Without that assistance we were locked out of our own lives. Now I’m thinking of it as the key to my box of spoons! 🙂 Great description. xx

  • Kelly in Virginia

    Christine, thank you for the spoon theory. I am so hanging in there right now, and re-reading and sharing your link with others has given me a brighter, positive end for my evening. Thank you so much.

  • Erin

    I have EDS, Ehlers-Danlos Syndrome…my joints slip out of place, or just ache, all the time. I’m in constant pain-all that varies is the level of pain and the location. Right now, for example, it’s one hip and the accompanying knee, also the shoulder of one arm. Tomorrow it might be both shoulders, or I could find myself unable to walk from knee pain. I’m a reader, so it sucks having to think about whether to go to the library because I don’t know if I can get home. I’m a knitter, so I hate having to skip knitting for a day so I can use a computer and communicate with the outside world, or so I can fix supper. Taking care of my cat…heck, my bed is lumpy and uncomfortable, and it’s starting to cost me a spoon just to sleep in my own bed, with my cat curled up next to me.

    I put a spoon on my profile picture on Facebook and finally had a friend of mine ask what the spoon was for. I went with the obvious answer. “Because I’m a spoonie”. He asked what that meant and I copy-pasted the link to this page.
    And it really hit him. It was nice to have someone read one thing and understand, even a little, what I go through. I just about cried when he asked me, not pityingly, but politely, how I was doing that day, and listened when I answered. I’m only 19, and people look at me like I’m trying to get pills (I realize pill abuse is rampant, but I HATE commercials about locking up your medicine cabinets. Just like I hate songs about teenagers being rebellious and rude, or anything that stereotypes teens) or I’m just exaggerating. After all, it could be worse. After all, I’m young. What do I know of pain? So it’s amazing to have someone understand. Your spoon theory did that for me.
    Thank you.

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