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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  • chrissy

    thank you very much for this. it helps to know there are others out there.

  • Thank you so much for sharing this. I have autonomic neuropathy as a result of diabetes. The symptoms are similar to multiple sclerosis. You add to that diabetes, retinopathy (poor eyesight) and peripheral neuropathy (lack of feeling in feet and fingers) and no toes on my right foot and probably only you can imagine my spoon dilemma. Thank you so much for saying so eloquently that which is so hard to explain to someone without a chronic illness.

    Because we try so hard to function at as close to normal as we can, and because we get tired of trying to explain what is going on with us, so many people take for granted that our life is the same as theirs and judge us accordingly.

    I will use this post frequently over the coming years, I expect. You should make a video of this. Maybe I could help. Contact me.

  • Kim

    I am reading this and sobbing. I have Lupus, Diabetes, osteoarthritis, and kidney disease. I am tired all the time. I am frustrated with myself that I no longer can do all the tasks that I could do when I was younger, I am 47 years old and struggle to accomplish a 40 hr work week. This is a awesome example of how I feel and the daily struggle that I have to choose not what I want to do, but what I have the energy to do. Thank you.

  • Gail Nash

    I was going to thank you for this insightful way to explain post-polio for me, and for giving me the inside info on Lupus. But then I saw all the postings and realize that an awful lot of us live with spoons. I have to keep that in mind more often than I worry about my own spoon collection. It is a good analogy. I won’t reprint it but I may share it.

  • Janet M

    This is a clever way to show others what it’s like to have a chronic illness. I have CADASIL (Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy) which causes me terrible headaches, nausea, dizziness, sensitivity to light and noise, etc. I usually know how many “spoons” I have for the day when I get up in the morning. Sometimes I try to get more spoons by going back to bed if I feel bad. It works at times, while other times I lose even more spoons. What a great way to explain it. Thank you, Christine!

  • Sarah

    I have read your story, brilliant as I live by the spoon theory every day!!!!

    Inspirational.

    Sarah x x

  • Cher Ri

    Knowing your own limits is essential, with lupus, fibromyalgia, adrenal syndrome, MS, and many other disease’s, that cause extreme fatigue is a disability in its self, in my opinion. Borrowing from tomorrow to get through today is always a difficult choice…if you have a friend and/or relative that you’ve noticed isn’t doing what their peers are doing try to understand that if they haven’t shared the details of what’s going on it might just be because it’s devoured their entire existence and they don’t want to give it any more time than it’s already taken away from them and will continue to do so.

  • Terri

    I have just read this for the first time and the tears are still streaming down my face. I now have to decide if I have the courage to show it to my children in the hope that maybe it helps them to understand me just a little. Thank you.

  • Tamara

    Thank you for sharing. Thank you. Thank you. I have MS, diagnosed 9 years ago. I also have Chronic Fatigue, and “Mood Disorder”… gee, makes me want to tell them “lose everything you once were and see if you don’t get moody”. I am a shadow of my former self. I used to be so independent, full of energy, life of the party, fun to be around. Now I hurt all the time, and I’m not as social. I have yet to learn how to answer the friendly question, “How are you doing?” Do they really want to know? Do I want to be that person who complains all the time about pain and all the crap I’m going through…. No. I just reply, “Fine.” It is upsetting when my family and close friends don’t offer to help, or offer but never follow through even though they see me struggling. Is it because they are embarrassed for me, knowing how independent I was and that I am no longer able? Now, finally, I can use this illustration to explain how I now have to approach each day. Maybe they will get a small glimpse inside and start to understand… so I won’t feel like I’m facing this all alone. Once again, Thank you.

  • Barbara

    I’ve read it twice and cried both times because I’ve never been able to put into words what my whole life has been like! Although I don’t have lupus, I have an autoimmune disease that doesn’t have an obvious physical marker like down’s syndrome or a limp or something that everyone can spot immediately.
    All I can say is thank you Christine for giving me a voice to explain what my life is like…

  • Lindsay Luymes

    Hi, I have IBS, Kerataconus, Osteoarthritis, Fibromyalgia, Chronic Fatigue as well as numerous other symptoms and have sufferred with IBS for 30 years and all the others for 10 years. I am 49 now. I quit my job 2 years ago and have been on a lengthy search trying to figure out what these illnesses all have in common, as of course “I don’t look sick” and test after test at the medical doctor have come back as”FINE”. I have discovered that my many symptoms all point to mercury poisoning. I have begun the removal of my 18 amalgam fillings and hope that even one or two of my 32 symptoms may disappear. This is a long process that needs to be done by a biological dentist and the proper use of mercury detoxifying supplements. I was also someone who received many mercury poisoned rhogam shots before 2001 due to my B- blood type back when I was having my children. The most frustrating part has been dealing with family that doesn’t begin to understand. I will try the spoon theory on them. Thank you so much.

  • Jessica

    Thank you, what a neat way to explain things!! I have had Rheumatoid Arthritis for since I was 16. I am 37 now. Have only gone into remission once, but it was a glorious 5 months. I also have fibrmalyaiga and Raynaulds Syndrome. Most of my family do not understand these diseases especially my ex husbands. My excuse in their eyes was I was fat and lazy and nothing was wrong with me!!
    For 6 years, I was on Remicaid and every day it killed me. I had 3 good days for the whole month!! My ex-mother in law ( who believes I’m fat and lazy) even took me to my Remicaid treatments where I sat there for 4 hours with an iv and then couldnt walk or even make a logical conversation with her. It is indeed very frustrating. I’ve had 2 surgeries on my foot, one of them being joint replacements for all 5 toes. I still don’t walk right.

    I wish (sometimes) there was a way to transfer all of your pain to the person that doesnt understand, but alas I don’t wish this on anyone…ok maybe one or two…..

    I have been doing Humira for 2 &1/2 years now! It has given me back some kind of normal, but there is still significant damage that I will never be able to do certain things. One weekend I was alone and couldn’t open my soda bottle, I drove to the store bought a new one and asked the clerk to open it for me. he gave me a weird look, but then I showed him my hands and how red and angry my one palm was from trying to open a stupid pop bottle! He said he understood, but there was that “look”. Oh well at least I could enjoy my drink –haha

    I am also a mom of 2 very active girls 13 and 10, I almost lost both of them in my pregnancies because of RA. Mine went full blast instead of dormant, but I have enjoyed everyday I have with them and hope to have many more! My doctor recommended I not have anymore children as it would probably kill me or the next baby, so the decision to have a hysterectomy at 30 was heartbreaking,but necessary. and after 11 years of marriage, my husband decided…yup you guessed it…. a divorce! Now, with regular flare ups, I’m fighting to keep my children and praying everything works out.

    I’m not bitter, maybe a little angry, especially knowing that in less than 4 months I will no longer have medical insurance, disability doesnt pay much and medicare sucks, you still wouldn’t know all of this just by looking at me! I have learned very on to teach my children, “do not judge what you cannot see, because inside is a very different story”

    To those that are going thru something like this, I applaud you, it takes courage to get up and fight everymorning….whether it be to put your make-up on or open a soda bottle…..you will survive!

  • Laura Baker

    Thank you!!! The Spoon Theory is what I’ve attempted to explain to my friends & family. I hope and pray this website including The Spoon Theory becomes known world-wide & helps the public more aware of the invisible disabilities & diseases.

  • Samantha

    Let me just say. That I am only halfway through reading this before posting this comment. A friend of mine had put a link to this article on her facebook.

    I very nearly skipped over the link all together on facebook, because the icon for the link looks like a facebook game icon and completely ruins the credibility of the link.

    They should change it. Because I nearly skipped over it completely thinking “OH another dumb facebook game thing, skip thanks” But since my friend put a comment on the comment section, I thought, eh, maybe I’ll read it.

    Then I thought Oh, maybe it’s a joke? Maybe it will be worth a laugh. But then you get to reading it and it’s really good and serious. But that stupid icon nearly made it so I didn’t read it at all.

    And let me tell you. I don’t know anyone with Lupus or a serious illness, and I don’t have a serious illness either. But this article made me cry. It helped me to realize how much I take for granted and whine and cry about my own little “normal” life that could be SO much worse.

    Thank you for this realization. Thank you for this message.

    Now PLEASE change the picture and the icon for the facebook link so that more people might be tempted to read this instead of just thinking it’s a facebook game link.

  • I was given this website recently after a comment I left on a young girl’s page. Just finished reading Spoons. It is exactly how a person who has never been sick to understand how people “who don’t look sick” have to cope. My son had to endure all sorts of comments for 14 months as well as us ,his parents, when people would see him and make remarks that were not well thought out. He had a transplant after 14 months or more of not being able to eat at all. That was in 1992 and is doing great now. He still runs into people who don’t think before they insert their foot in their mouth! Thanks for making it easier to explain now! Best to you in 2012!

  • I live with gastroparesis and diabetes and the spoon theory is exactly how I have to live my life with these diseases. This is the perfect way to describe to people what everyday is like for me. I just want to say thank you Christine for your story and the spoon theory:) I wish you all the best of health and happiness in 2012:)

  • Patty

    Thank you. I have transverse myelitis and even though I can walk I have to mentally tell my legs what to do ie:up,down,up,down etc. One 100th of a second of thinking of something else while walking can cause me to fall down. I have to use many spoons to keep track of body functions, ignore constant pain from the waist down, and keep up my spirits. I love this spoon story for its visual simpleness. Thank you!

  • Hi! I was directed to this letter by someone from my support group. I have cystenuria. One of the invisible diseases, it means I form chronic and indestructable kidney stones. I thought I was just off for so long until I joined the group and found out that everyone else is exhausted all the time too! This “spoon theory” is the first time I’ve ever heard someone really explain how it is to be sick every day of your life. I too have learned to take better care of my spoons. Your letter brought tears to my eyes. Thank you for making it easier for the rest of us to explain.
    Blessings to you.
    Amanda
    BC Canada

  • amy lanpher

    I love this and it is so perfect. i’ve been sick for 12 years and found out it was lupus only a month ago. at this point i’ve been labled as lazy and a hypochondriach and only my husband stands by me. the rest of the family doesn’t understand that I want to see my grandson, but his runny nose is dangerous for me and the two hour trip itself does me in. they don’t get that i’d love to go to barbeques, but the sunshine is intolerable, and my mother in law is downright offensive when I have to turn her down to eat out or go shopping because i just have no energy, i hurt too much, i can’t eat, or i’m just too weak. now that i have a diagnosis, everyone acts like i should feel just fine because i know what it is, but life doesn’t work that way. it is so good to know i’m not alone. thank you.

  • I have a Chiari Malformation, diabetes,fibromylagia,chronic fatigue, osteoarthritis with destruction of many joints and joint fusions, chronic pain. I love the spoon theory. It gives people a visual when the majority of time u can’t explain it well enough with meer words. I am going to try to get my famnily and friends to read it so although I may ‘look’ like I’m not sick and in constant pain, I AM! This is what the rest of my life looks like and I pray everyuday that something else doesn’t come along to yank yet another spoon out of my severely limited supply!

  • Gracie

    Wow… sorry about the terrible spelling and typos… I’m typing in the dark.

  • Gracie

    Hi!

    Let me start by saying that I love this site. I come back to it to read “The Spoon Theory” for myself when people just look at me and roll thier eyes when I say that I am fatigued and can’t go any further without a nap, when they don’t understand that I really need to rest or to sleep. I haven’t been successful in getting my family to read this but I sure with they would. Some of them call me an addict because I need pain meds. I also have RA and fibro so it gets tough. But fibro seems to be a “made up disease” to sme of them. I have so much pain with the lupus that I don’t even mention the other.

    But I didn’t come here to whine even though I’ve done good job of it. I was off of cellcept for long time and now I’nm in flare so the doc said to start it back.

    I appreciat this site so much and I come here when I get super sick and it always makes me feel better and it helps me to know thier are others like me.

    Thank you so much…

    Gracie

  • Kaiva T.

    This is really…inspiring. For me, just going into high school, and I have Maniac-Depressive Bipolar Disorder, this helped me make some sense of the emotions I deal with.

    I know that being bipolar isn’t viewed as big of an issue than other illnesses that people have talked about, but for me-a confused teenager-it’s pretty major. I view my spoons as the countdown before I go from “normal” to either mania or depression.
    It really helps me, but I get unfocused easily, and often I use up all my spoons just by getting to school and everything you do in the morning. Recently, I’ve been getting better and better at using spoons wisely.

  • Stefanie

    Christine – this is a wonderful way to explain to people why we have to do some things the way we do BUT I do not and never will consider myself sick. Yes, I have been diagnosed with primary Sjogren’s and Fibromyalgia (20+ years)and abrain tumor survivor(5yrs). I was born with Reynauld’s and IBS so I’ve spent my life watching how I use my “spoons”. When someone says to me “you don’t look sick” my response has always been “I’m not, I just have some “quirks” I have to monitor.” Thank You for your site and may you always have spoons.

  • Rosie

    The ‘Spoon Theory’ is simply brilliant. Thank you so much for sharing this. 🙂

  • Deborah

    thanks so very much for sharing this. this is exactly how it is for me but i’ve never been able to put it into words. i have fibromyalgia, chronic fatigue, and ibs. my life is an absolute mess right now. i never leave my house. i’ve lost my job, lost my friends, lost my life essentially. need to find a way back from this.

  • Thanks so much. I love this story! I see people with fibromyalgia and other disabling/debilitating conditions, and this story will be useful. I told someone yesterday the story, and suggested that she keep 3 spoons in reserve each day, so that she doesn’t wear herself completely. She knows (we discussed) that those 3 extras won’t necessarily be there in the morning, but with luck, the extra rest will help her recover more spoons over time. Living w/ anything that wears you out isn’t easy, and you do have to take extra care of yourself. As for myself, I have been anemic. I know what it’s like to live w/ not enough spoons, although it was easy to fix, I only had about the quarter the spoons that I have now. I will never forget that time in my life, and I hope it makes me a better doctor.

  • Jackie MC

    I have Fibromyalgia, Chronic Fatigue Syndrome, and RA, I went to the Facebook page and saw everyone talking about “spoons” of course I became interested and starting digging. I found this and thought how perfect a way to describe how I feel! Great Job on this! Thanks and Gentle Hugs! May we all find an unlimited amount of spoons one day!

  • Ann-Kristin

    Thank you for your article. It was so well written and so good.

    I have been sick almost all my life, but have been in work and have managed in some miraculous way. When I look back I do not understand how, but when I read your article I understood. I used my spoons wise.
    Gave up explaining to friends and family years ago, they had no way of understanding when I never really could understand myself. I am now 60 years old, retired and I will continue to “live by the spoon”, and hopefully I will have many days of plenty spoons waiting for me in the future. Because …never give up hope, some wonderfull day the world we live in will take the time, money and effort to find out a way to help all of us back to all the spoons we ever can use.
    Thnak you and I wish you a Happy New Year from me here in Norway.

  • Marci

    “The Spoon Theory” truly says it all. I’ve had CFS for 24 years, and have struggled with not having my symptoms taken seriously. No one can understand something that they cannot see.

    I am dealing with a relapse that was made worse by my choice to take part in too many holiday activities. I am so run down that everything is causing tears.

    Doctors don’t help because “I don’t look sick”, and tests all show that I am “healthy”.

    Thank you Christine, for writing this and sharing it. Thank you everyone else who is willing to share what you are going thru, so we don’t have to feel alone.

  • Roisin O’Hagan

    Great way of explaining it all. I have Epilepsy and Chronic Fatigue Syndrome plus the good days sometimes blighted by migraine. I have had a close friend tell me it’s all in my head, I’ve had work colleagues (before I lost my job) view me as a malingerer and I’ve dealt with self-doubt because of the attitudes of others. I’m now a volunteer with an excellent charity for arts & disabilities. I like your story and will be telling others of your website/blog. Thank you.

  • Rose Red

    One of the moderators on my depression forum posted a link to this page…reading this brought tears to my eyes. I’ve been blessed with physical health but I do have depression and schizoaffective disorder. And I’m in high school. More often than not, getting through the school day in one piece takes more spoons than I have, especially if I have to spend most of them on homework. No one who’s had the same illness really understands.

    Thank you so much for posting this!

  • Tara Roseberry

    I have MS and have read this numerous times since diagnosed almost 10 years ago… Each time I get tears in my eyes and as years go by the tears get bigger. It reminds me SO much of what I go through everyday, how much worse it is getting and how I get so upset about having to slow down and how others just don’t understand…

    I have refered this page to friends and family in hopes they will read this and actually grow and learn.

    Thank you!

  • Cindy Narsh

    This such a good visual for the effect an invisible illness has on your life; something that it is close to impossible to explain. I have peripheral neuropathy in both feet & hands. If I decide to do something I know will increase my pain-such as today when I went shopping with my 8 yo grandtr because that’s what she wanted to do. I used all my spoons by the time she went home at 4; I’ve had to just sit & take extra pain pills. Needed to do laundry, had a nice dinner planned; none of that got done ’cause I was out of spoons. I plan to use this whenever I’m trying to explain why my life is different because of my PN. Thanks Christine!

  • Kristi O.

    I was diagnosed with Fibromyalgia about 3-4 years ago. I had never heard of the Spoon theory until my cousin’s wife sent it to me. It makes total sense to use this theory to explain my everyday struggle. My husband has an idea but I am going to use this to explain it to him better. I used to be a hard worker. I worked as an LNA for 10 yrs and to have to give it up was the worst thing I have ever had to do. I was an emotion wreck.

  • What can I say. I’m happy that I read this and I’m also sad seeing the face of my best friend. Both of as are old, mid 80’s. We are best-friend since high school. We both have families but having this condition that she has. And I know she’s been suffering this for a longtime.

    Susan if you read this, I’m happy that you are part of my life. I’m here to help you. We’ve been sharing the laughter and the pain. Please don’t give-up.

  • Theresa

    I have Fibromyalgia and was recently diagnosed with ovarian cancer. I have always been a hard worker and have 4 kids that I have always taken care of, but now I cannot do all that is needed and its very difficult for people to understand. I have 2 disabled kids and am always helping them etc so my house is now always a mess and my life is also a mess and its embarrassing because no one understands, I am hoping this site will help my family and friends to understand. I am going to get the poster to hang in my living room!

  • Robin

    Christine,

    Thankyou for spoon theory, I could not have written the theory better myself, it was as though you were telling my life story since I was in my twenties, I am currenty 41. I have Sjogren’s syndrome which is also an auto-immune disease along with fibromylagia. If that is not enough to deal with, I also deal with the migrane headaches if I get too exhausted, stressed, or get too dehydrated. By looking at me one would never I know I suffer from this, because I am athlete, look very healthy, and I try to take good care of myself. In addition, I am fighter (and once a soldier) who does not allow this to run my life, however it VERY frustrating to know that I have to be cautious with I do every day, because if I do not, there will be consequences later I have tested this over and over!
    Thank you again…

  • Rebecca

    Loved this story! I plan to share it with my family to help them understand how this disease affects me!

  • montuos

    I have a number of friends with various and sundry “but you don’t look sick” conditions, so I first encountered this essay a while ago. I keep looking it up again to pass on every time another friend comes down with a longterm life-altering condition whether visible to others or not, because this theory is so relevant not merely for explaining to the rest of us what it’s like, but to help new sufferers face and work around their fluctuating and/or permanent limitations.

    I cry every time I read it, but I am so very glad you wrote it!

  • Lulu

    I had heard about this website from someone at my neurologist’s office a while back. Today, in particular, seeking some sort of solace, I looked it up and The Spoon Theory showed itself immediately. Thank you for sharing this. It almost helps me understand how I feel myself. I have Lupus, MS, and a newly discovered/diagnosed seizure disorder…… but “I don’t look sick”. Anyway, having a hard time dealing with life – feeling lost and a little sorry for myself – hoping to gain some comfort and or clarity from sharing with others here. Again, thank you for sharing.

  • Amie

    Thank you for posting this. I have Chronic Fatigue syndrome and had been looking up any tips for “how to spend my spoons”, as I’m now calling it, when I came across this site. Most often, people accept my inability to participate at school, but some members of my family simply do not recognise the condition. I really hope your analogy can help them to understand, and I wish you and everyone counting their spoons a merry Christmas. 🙂

  • Ashley

    I read this story aloud with my boyfriend, and now I feel he actually kind of understands how I feel everyday. I have scleroderma and wake up every morning in pain, I go through an entire day with pain, but I try my best to keep a few “spoons” for back-up in my purse. Thank you for helping me explain my condition and for helping other understand it too.

  • mindy

    Interesting and effective analogy. I have Ehlers-Danlos and cchronic fatigue syndrome. trying to explain to people what it feels like I usually tell them to imagine what it would feel like if it were always 3am i your head. Its like the most persistent case of jetlag you can imagine. Sleep can lessen it but it never goes away. Its hard to get the point across what severe fatigue and joint pain are like on a daily basis. When I worked my coworkers and managers always looked at me with that expression, you know the one. You know whatever you tell them they always assume you are lazy, a whiner, and a hyperchondriac.

  • Felicia Thompson

    Dear Christine,

    I’m the “friend who has Lupus” that Stuart referred to. What’s so unbelievable is that, I was referring to a support group for chronic dis-ease sufferers that I belong to, and not the website! So I came to the website when I got an email from Stuart, directing people to it, and to your story.
    I finally see the sentiment so many of us have been trying to convey to those who are well, with no thought of how blessed and lucky they are. I plan to get the “Spooon Theory” poster and put it up on my dorm room door, THE OUTSIDE. I’m directing the nurse practitioner at school to the site as well. Perhaps a poster in the waiting room of Student Health will make others think twice before passing judgement on a student they think is simply a “whiner”.
    I have tutors at school who think I am just a slacker, lazy, and don’t care enough to show up for their classes, when I have to save a spoon for something else, like making it to the library to print out the reports that show not only am I present, but I am listening and engaged in the classroom discussion. I’ve been placed on “absence probation” for spring semeste for a class because of it. I fight to stay in school, and be believed, and thought “deserving to be here”. Thank you for sharing your story, and helping so many of us get the point across, by allowing us to share your story as well.
    I wish we had nothing in common, that I didn’t have to count spoons. But since I have to, I’d gladly count one for you, even my reserve, ANY day. Blissings and Unlimited Spoons,
    Felicia

  • Stuart

    This is so very helpful. With Bipolar disorder, fibromyalgia, arthritis, severe sleep issues, and … I have enough chronic illness for a family of five. One would have been enough. Really. I would settle now for just one and think I hit the jackpot. After reading the spoon theory, I realize that I have been living this way (but without the wonderful “spoon theory” to explain it) for a long time. I tell everyone I can do three regular things a day (most days, unless I over do and then I can’t do anything regular for a few days except sit or lie down) so I have to plan very carefully what I will do. For example I can go to the gym, do some grocery shopping and tutor at the library. That’s one day. Cleaning the apartment is one thing; visiting a friend is one thing; going to a movie is one thing; doing the laundry is one thing, etc. Three is the daily limit if I want to also be able to “live the next.” If I go out of town to visit (my grandchildren for example), I know that I will get home and be invisible to the world for days while I recover. I was told of this website by a friend who has lupus, and I see that it applies to all of us who “live by the spoon”. Thanks so much. Blessings, Stuart

  • Thank you for this! I was recently diagnosed with Sjorgren’s Syndrome & explaining things to my 10-year old son was the hardest. However he immediately grasped the spoon theory in relation to my life. I even overheard him telling my partner, “Mom doesn’t have enough spoons left to go with us tonight; maybe we should wait until she has more spoons.”

    I started my own blog and would love to post this there, of course I would be giving you complete credit. Please let me know if this is okay with you.

    Thank you again Christine.
    Happy Holidays,
    Tara

  • Nikki

    I have MS with the wonderful Chronic Fatigue, nausea to certain smells like barbaque sauce, any italian sauce, eggs, anything that has a spice to it or a strong odor. No one understands, they think I am being difficult. I was never picky before I got sick in 09. I was so happy to find this. I have shared it with my family and it is being used all I have to say is I am down to 2 spoons and they understand. For the most part I should say, they still dont understand why I cant just relax at their house. I am leary of being away from home when my fatigue is overacting, or my nausea. So I just say no that wont work I need to think about my tomorrow too.
    They accept it thank you so much for sharing a way for all of us to better manage our challenge by informing the ones around us of a reality check.

  • Darcy

    I have what I call Lifelong Debilitating Chronic Fatigue of Unknown Origin. On paper, I am healthy and so the medical professionals have nothing to say or do for me. I liked reading your story and that your friend asked that question. My live in boy friend once told me to “ignore it”. He is in constant pain and has the ability to ignore it somehow and thus figured I could ignore my debilitating fatigue. Would I allow it to ruin my life and debilitate me if I could just ignore it?

    If it weren’t for him, I’d be homeless. I could go on and on but instead I’ll just day, it was sad, and nice, to read your story. Thank you for posting it.

  • Lisa

    I have RA diagnosed in August but probably had it much longer this is a wonderful analogy to help friends and family understand what our diseases feel like to us. I have found that even lifelong friends either do not understand or do not care because they are “fair weather” friends. I am so glad I found this site where I feel like I fit in without having to explain how hard daily living is.

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