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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  • Amy

    Thank you so much for sharing this with all of us. It brought me to tears. I have had RA for just over a year now and my life has changed so much. I am a wife, a mom of 3 boys and work full time in our school district, and have such a hard time “slowing down”. My family has been wonderful this past year as we all try to adjust to this terrible disease, but I know they really don’t understand what it takes for me to get through just one day. I will share this with my family and so many others I know that have the same struggles. Thanks you again!!

  • Amy

    Thank you so much for sharing this with all of us. It brought me to tears. I have had RA for just over a year now and my life has changed so much. I am a wife, a mom of 3 boys and work full time in our school district, and have such a hard time “slowing down”. My family has been wonderful this past year as we all try to adjust to this terrible disease, but I know they really don’t understand what it takes for me to get through just one day. I will share this with my family and so many others I know that have the same struggles. Thanks you again!!

  • Amy

    Thank you so much for sharing this with all of us. It brought me to tears. I have had RA for just over a year now and my life has changed so much. I am a wife, a mom of 3 boys and work full time in our school district, and have such a hard time “slowing down”. My family has been wonderful this past year as we all try to adjust to this terrible disease, but I know they really don’t understand what it takes for me to get through just one day. I will share this with my family and so many others I know that have the same struggles. Thanks you again!!

  • Judy Heacock

    I only have one thing to say “thank you”. I wish I had read this when I was 17 and ill with endometrosis, and all the problems I had at work. They certainly believed me when I had a total hysterectomy at 24, everything was gone. I had to mourn the loss of the child I never had, nobody understood that. Luckily we adopted a beautiful little girl and 4 days old (a fantastic 19 yr old who has health problems). I was healthy for a bit other than problems with no hormones, gaining 75 lbs in a year, etc. Things werent bad until a car accident in 1998, I have been on disability since 1999. I suffer from RA, chronic pain, IBS, depression, and still endometrosis, osteoporosis, etc. I always answer I’m fine when asked though, only those close to you understand.

  • Loved your story! I have mcs/fibro/cfs … Great story to show to others who don’t understand but also great for us, love the “borrowing tomorrow’s spoons” idea …. This made me think of old silver spoon jewellery (great to have a necklace to keep as the spare spoon) and how about spoon windchimes? They all have special meaning to me now … Thanks so much for this!

    -Kathi

  • Patricia Glover

    I have had 7 back surgeries (called Failed Back Symdrome) and I have chronic pain. I have never been able to explain it to anyone and when I read this I was like YES THAT IS IT! Now one of my daughters may have Lupus (still figuring out what is going on) and I cannot wait to pass this on to her so she can try to explain to her 20 something y/o friends what she is going thru. Thank you so much!

  • kfunk937

    I’ve loved your spoon theory and derived comfort from it since I was first directed to it almost a decade ago. Good to revisit. Would like to share link with my small, but loving & well-meaning immediate support network of one family member, to increase understanding. I had a work friend with Lupus, who I remember fondly, and understood better what her situation must have been like, after reading your account. I related to much of it myself, having a long-delayed diagnosis of an autoimmune arthritis, among other health issues affecting my life. And, of course, hearing, “but you don’t look sick.”

    So what happens when we can no longer estimate how many spoons we may get in any given period? I feel like I borrowed against the future for so long my deficit can’t be calculated. I now have chronic, crushing fatigue, that sometimes crashes down and leaves me, in the best case, unable to function, except to reach a landing place. Alternatively, the lights go out altogether, without warning.

    I can be standing (if at the counter, I get a lot of chin bumps on the way down); seated (often, painful golf-balls & bruises are the only clues to the event; or sometimes really strange web-sites, as my desktop is padded with lots of paper); when I still had a social life, nose-dived into a very nice china tea-cup & saucer, putting an embarrassing end to that. Am usually not out for long, unless the black outs convert to sleep or have other contributing factors (e.g. drug interactions, fever, illness, injury, hyperthermia, etc.: kind of a long list).

    On a more upbeat note: “regular” chronic fatigue predated really severe sleep disruption & pain meds & diagnosed Addisons’ disease – am sure many would recognize budgeting spoons to grocery shop, then unloading or unpacking just the frozen and refrigerated food, plus whatever was possibly to eat right then, leaving the rest for later – in my case, used to take about four days for a big shopping trip. Now takes about the same for little ones.

    Am alone now, and my world is shrinking. I don’t like that, and would like to change it, but am not sure how. Am hoping that each thing I try, like returning to PT, or trying knee injections (my requests) will reduce pain & injury risks, improve quality of life, and function, all incrementally & additively. I no longer shop at the big store (got stuck there last year with blown discs & an immobilized foot/knee, contemplated calling ambulance (probably should’ve), waited in snowy weather for a fair while, made it back eventually, but collapsed at home later & hospitalized within 2 weeks). I go more often now, to a smaller store, where I buy less, pay more. Fortunately, no drop attacks at store (-: and have neither blown any discs there, nor thrown out my knee, nor fallen and couldn’t get up. That’s the plan for now.

  • Deby

    I had heard about the spoon theory on the RA site but didnt know what they were talking about..so glad I finally was able to get to the link and learn about it. Having RA being unable to work yet not alway looking sick…has been hard in that some of my family think I am just lazy..I am blessed to have a very supportive husband, children and friends. I do all the driving etc for my elderly parents so most of my “spoons” are used up in helping them. My house is seldom clean, I dont get to do the crafts I like to very often, and the fatique and pain are just overwhelming. I know the God is in control and He helps me get thru each and every day, and now I have the spoon theory to try to explain to others why I have to carefully plan each day and arrange all the appts etc..no, I cant do them all in one day..I cant stop everything and do that….can I print this so they can read it when I tell them that “sorry no spoon for that today” thank you

  • Liz

    Your eloquence is amazing! You were completely “spot on” in your description. I loathe hearing “healthy” people complain about having to take seasonal allergy meds or cold meds. I have to slowly poison myself every day for the rest of my life to stay alive. I have had two cerebral infarctions (strokes)…1st at 18, 2nd at 35 and have been on coumadin therapy ever since the 2nd. Coumadin is the generic name for Warfarin Sodium which literally is RAT POISONING. In large doses, it kills rats as it makes them bleed internally. I give myself small daily doses in order to thin out my blood to keep clots at bay. So, yeah, I look “normal” except for: my thinning hairs, receeding/bleeding gums, excessive bruises, and limp if I’ve been walking too much because the bottoms of my feet are tender from the timy capillaries brusining.
    Great analogy, Christine, and I do wish you the best.

  • Kendra

    Thank you 🙂 I am a diabetic with kidney failure… waiting for transplant, I have never been able to think of a way to explain…. this does it all.

  • Melody

    Thank you for writing this and sharing it. I don’t have lupus or any of the other severe diseases and illnesses that so many of you face, but I do have severe allergies. Despite taking my meds everyday and getting my weekly shots, I am still sick a lot. People look at me and think that I don’t look sick so what’s wrong with me. They think that I am making it up to get out of stuff or that it is all just in my head. It isn’t! I would be going for walks in the evening, going for picnics at the park, and using energy if I had it! They don’t understand the restraint and self-control I practice to not scratch my own skin raw or to not rub my eyes until they hurt. They don’t know that I always wear pants to hide my skin rashes, and they think that I’m not healthy when I have a hard time breathing. Some days, waking up and getting out of bed is so hard because I didn’t sleep well due to the allergic reactions or symptoms, and I’m so tired all the time. The Spoon Theory will help me explain my life with allergies to people, especially since I don’t always know how bad of an allergy day it is going to be until I am living it. Thank you all for sharing! I am so encouraged to know that we all understand one another, and I deeply respect the wise ways that each of you use your spoons! May I be as wise!

  • Mylene Somers

    I have been fighting Fibromyalgia for many years and this is exactly how I live my life . I have to make choices wise ones every day . or the next day I cannot get out of bed . Many people do not get this . I love the Spoon Theory because that is the ay it is for us . Thank you for sharing it . Well Done .

  • Robyn.

    Well damn. That’s truely amazing.
    I have Autism and ADHD…so dealing with my words and actions and behaviour in social situations is hard enough as it is, let alone when i’mt trying to decribe to someone why i can’t concentrate or won’t go near people that are usually my close friends.
    And though my condition may not nearly be as bad as other physical or mental conditions people may bare, this has really given me the words to try and describe my thought patterns to others. Thank you Christine, really. Thanks. 🙂

  • Kelly

    I wanted to add a citation…”Pain is what the patient says it is,and it exists where he/she says it does.”
    There has been a vast amount of work done on pain and if any one is interested in learning about this condition they can go to the ICBPS blog.Interstitial Cystitis Chronic Bladder Pain Syndrome.May I just add that some of us still want to maintain our hair,make up and physical appearance regardless of what has happened to our bodies or is continuing to happen.We must strive to maintain as much of our character as possible regardless of someone making a remark such as “but you don’t look sick.”I Thank you Christine,some times I wish people would educate themselves a little more.In life you do not know what is going to strike you and when it will strike,however each and every one of us will go through what I call a “high tide.”

  • Kelly

    “For Better Or For Worse,In Sickness And In Health” are words that remain distinctly in my brain,as I was in immense pain on the day that my husband and I were both married.I had been diagnosed with Interstial Cystitis Bladder Pain Syndrome (ICBPS).There are so many abbreviations in the medical world and I present another.”but you don’t look sick” is a phrase that I hear repeatedly!the truth is that I am not sick and a lot of the time I do not feel sick.I feel it is a shame that society only looks at the exterior when placing judgement.There are so many components that make us human beings.The spoon theory is a great illustration which can be viewed in a variety of ways.
    I believe that I have a condition which can play up and play down but the main problem is PAIN.On top of the condition,other things can set in however I detest being “stamped on” as merely being sick.It has taken a long time to balance my day,in that ensuring that I get my shower in as this is a basic need.There are many things I like to do,however I must prioritise my chores and thus ensure that I do not have a flare up!(I fully relate to the spoon theory).However,in my mind I think of it as (nine lives)and each time I lose a life!Each day I do a little as over doing something may result in being hospitalised.Reliance on drugs also has a huge impact on my day and I have to plan the best times for friends and family to visit.I am sure those of you who are reading this will relate to most of if not all of the things I am discussing.Pain is physical and has a psychological as well as social factor.Some of us will go as far as disguising some of the pain,myself included!!Why would I disguise it?you may ask.I disguise as I do not simply want to be “labelled”as a person who complains nearly all of the time.I Thank you for reading and sharing this information.

  • That is the perfect description!

  • I cannot thank you enough for sharing “The Spoon Theory”. It’s a brilliant explanation for the devastating impact chronic illness has on our daily lives. I have RA, and recently started a blog to help educate others. I shared this link today. Wishing you lots of spoons… 🙂

  • Jess

    My mum suffers from Lupus, it is the worst thing to happen to a person and even worse when your to young to understand what’s going on, why your own mum cant come out and play with you or take you to the pool. Its not something i would wish upon anyone, not even my worst enemy. It has made me stronger and want to help out anyone that needs it. Thankyou for giving me an explaination that I can finally understand how she feels every day of her life

  • Justin

    I am 24 and was diagnosed with RA, and being so young it has affected my life in a way I never thought possible. One day I was fine, then the next my hand hurt a little bit, then every day a little bit more. Then my hips and ankles. Now two months later after the initial pain I felt. I find that at my best I can barely lift a half gallon of milk out of the fridge, and at my worst I can’t even flick off a light switch without the forethought to do so quickly to decrease the amount of force I have to use. But this article will help me explain to others who can’t see what I’m going through. Thank you!

  • Niki M

    I tryed to share this with someone the other day… they didnt understand until I had to change it a bit… In Europe you have to pay to use a public restroom… so that was my thought..
    You are given 10 coins to make it through the day.. you pay so much to do things.. So much to get out of bed and take a shower, so much to cook you something to eat, or go grocery shoping. those are good days… If you have a cold , or having a bad day to start with, getting out of bed to just take a shower. cost you it all..
    then they finally went “OMG, we just thought u needed to excersise more”
    I use to be one of those weigh lifters that could do anything and everything.. now i am overweight, and would love just to have the spoons to go swimming every day..

  • Maureen Colson

    Hi,
    I really enjoyed your story and how creative you were to invent this spoon theory. I would like permission to print it out and/or share with others in my life who either suffer from chronic pain/illnesses themselves and also those in our family/circle of friends who don’t understand. How can I go about doing this with you permission?
    Thank you.

  • I had a freak bike accident and had a basilar skull fracture…I had 14 surgeries, none of which related to the head injury, I have degenerative disc disease, peripheral neuropathy and some absurd disease that’s causing my joints to fall out of the socket. I wanted to be free from my body every day and no one wants to hear about it and I looked just fine. I found some non-Western medicine that helped and Lance Armstrong’s statement“Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.”, and I would add that the essence of that which is me does not cease to exist when my cortal coil fades, so all pain does end.

  • Rebekah

    I want to thank you from the depths of my heart. Right now, I am a stay at home mom with a very busy 11 month old son. I am also a diabetic of 26 years with some complications of it. Reading this explanation brought me to tears. I am going to show this to my boyfriend tonight so he might better understand why my day is so hard. I have never been able to explain it to him. Thank you for your wisdom and thank you for sharing it with the world.

  • Kate

    Thank you so much for this description – it’s so familiar, although we have different conditions and yours much worse than whatever mine is. I’m just always tired. I have been since I had some unknown virus when I was 15, and now 25 years later my body is packing in as well, with diabetes & sleep apnoea, as well as gastritis and GERD, carpal tunnel syndrome, PCOS and a recent deep vein thrombosis – but the overwhelming thing is this lack of energy which has been with me forever, and which has never been satisfactorily explained. I get so tired, and when a bout of tiredness hits, it’s all I can do to get myself to a bed and half the time I lose my glasses in the process, sometimes caught up in the sheets or dropped somewhere around the bed. Sometimes I just flake on the floor. We live in a very messy house and I feel so incredibly guilty about not being able to live up to my family’s expectations of what a good mother should be, but they can’t understand the exhaustion. Maybe your spoon theory will help?

  • reham

    i’m struggling with depression and other pshychological disorders but this exactly describes how ifeel

  • NinJeyn

    wow! brought me to tears! Thanks!

  • Jennifer

    I just want to say I love this story.I have Fibromyalgia Syndrome and people always say I’m faking it.That I’m not in pain.That there is no way I am.But I’ve been trying to explain to them for years how some days it looks like I’m not and on other days I’m in so much pain I’m unable to get out of bed without help.So Thank you so much for writing this.It will be some much easier to explain to people now 🙂

  • I’m currently doing a series on my blog about what it’s been like trying to learn to live with reactive arthritis/spondylitis. I found your site and the Spoon Theory a few months after initially diagnosed and have used it to explain to close friends and family what it’s like to live with this disease. I am linking to your site because you have explained it so much better than I ever could. My blog readership is quite small, but I hope that sending them over here can help educate others about life with invisible diseases. The world needs so much more understanding and compassion.

  • Alianne

    Thank you for this. It’s probably the best thing I’ve read to help me know what my little sister is dealing with – and knowing that helps me. Thank you.

    – Aly

  • Dawn Wagner

    Thanks for this. My husband is a Gulf War vet and I have often tried to explain his illness by using the analogy of a glass sitting under a dripping faucet. The water in the glass is your energy, and his faucet never gives more than a drip. Some people get it–others don’t.

    I just love it when they say: ‘Well I just don’t understand why he can’t go to bed earlier. Then he could get up in the morning! After all, he doesn’t LOOK sick.’

    Hang in there Christine. There are so many who really do understand!

  • This is a wonderful analogy. I live with endometriosis, which for me is especially silent, as it does not cause physical pain every day. That said, there is a strong chance it has already rendered me infertile and I have had one surgery and surely more to come. I am of the age where all my friends are having children and it’s always an interesting discussion to explain why we haven’t had children yet. Though I am not diagnosed with other illnesses/symptoms, I know that I have parts of other things that others in my life just don’t have.

  • Lisa G.

    Christine,
    I’m going to pass this along to my friends and family to explain why I am how I am. I have degenerative disk disease and after 2 fusions, my muscles won’t go back to where they were before. As a result they spasm. Sometimes pain meds are enough, sometimes not. One day, I felt really good and went to the grocery store without my pain meds (like a dumbshit); by the time I was driving home, I was in tears and my husband had to take me to the ER. (We joke that I have my own parking space at the ER with my name on it.) You’re theory is dead on – if I do too much one day, I can pay for it up for up to a week. I can’t tell you how many holidays, b-days, etc. that I’ve missed because I can’t drive that far. And I don’t want to take my stronger meds, and be a DUI either. My counter looks like a pharmacy!

    I went to a pain specialist who prescribed me drugs that made me hallucinate! Then he yelled at me for not following the ‘protocol’. Well, you can stick your protocol up you ass if it makes me hallucinate!

    I try to stretch most days and I’ve been in PT for 7 years now, but just when I think I’m getting somewhere, my back blows out and I wind up in the ER. To all those who suffer as I do, including you Christine, try to stay positive, see a counselor if you need to (I take anti depressants too), and do the best you can because that’s all you can do. Oh, and use your spoons wisely!

    Lisa

  • rroberto

    i realize i’m coming late to this party but thanks for this column so much…someone just made me aware of this website my sending me a link to this page…

    so as to n’pay it forward,’ i will share this story with others
    –but with one minor change in the setting of the scene

    you can eat almost anything when you ‘re young without having to think about your health aside from the illness at the top of your list…and when there’s no hope left, anyone should be able to eat whatever they wish

    but for all the in-between years, a big exception

    as one gets older, eating fries with gravy in a diner on a regular basis in itself could increasingly cut one’s spoon count severely down the road…as in good diet equals more spoons. bad diet may dispose of too many permanently

    everyone deserves as long a productive life as possible, with as little pain as possible….not even indigestion…and as much understanding as possible

    thanks again, but i won’t ‘supersiz’e your otherwise revelatory story

  • Amanda Gilliland

    Christine, you & my Mother share the same name. She passed in 2003 & I miss her dearly because she suffered from Meniere’s & other health problems and she always understood me and the problems I have with Fibromyalgia, Meniere’s & Rheumatoid Arthritis & have had 4 seperate neck fusions that has left me with limited upper body strength. My arms & hands can’t hold out to do repetitive motions. Typing this is hard & so tiredsome to do. I want to do things so bad I see & hear others do but I have such a limited amount of energy that if I overdo it I pay for that the next day and have to rest. Just like you stated, I only have a certain amount of energy and if I use it up then my body just shuts down. I have no choice but to lay down and rest. I feel the energy slowly going out of my body like water you see swirl going out of a tub down the drain.
    I have always had people say well you look good, you certainly don’t look sick. I tell them I’m glad I don’t look how I feel I would certainly scare you to death. At 45 y.o. I had to come out on disability in 2000 and that caused people I didn’t know question my invisable illinesses. I have found out that people that have never experienced any chronic or permament invisible condition can not relate to any of us that has one of these. I wish I had this concept of the spoons to share with them it would have been so much easier to explain in the beginning. My extended family & some friends still don’t understand & I don’t think they ever will or want to understand until something happens to them. Now I’m just too tried to talk.
    Thanks so much, Christine for sharing your thoughts. What you wrote is exactly how I feel.

  • I love that you were able to explain your situation so well, and were able to show the sacrifices that you unfortunately have to make on a daily basis. People take so much for granted, never realizing how easily it can all be changed. I used to work at a domestic violence shelter, and we used a similar exercise in trainings to show everything a person may have to give up in order to escape an abusive situation. Everyone would write down on slips of paper something that means a lot to them, a place they feel safe, a person they love, a goal, and something they like about themselves. Next they would have to pick one of those things to give up, never to have it back again. Then they’d have to choose another to give up. Then the person sitting to their right would take one of the slips of paper from them, and so on until all of their pieces of paper were gone. It’s amazing how effective these little examples can help people understand what it’s like to be in someone else’s shoes, and know that it’s never as easy as they think it should be. And it still doesn’t even begin to touch the reality. I love this explanation, even though I hate that it has to be that way.

  • Wanda Tannehill Sidebottom

    What a wonderful story about the spoon. I will remember this when someone ask me how I feel. They always want to know because I don’t look like there is anything wrong. I find I can’t say I have Lupus because they give me that look. I say first that I am not contagious!!! They seem to want to relate it to Aids for some reason. Now I can just go into the explanation of what Lupus is by using the spoon theory. Thank You Christine

  • FC

    Thank you for coming up with the “spoon theory”. I have had a terrible time explaining what life with FMS is like, and have a problem with people expecting too much of me (or thinking I can’t do things that I reserved spoons to do). It has been so hard to explain not having energy or strength and having to parcel that energy out – and people who don’t have chronic pain or tiredness just could not understand that some people have to live a self-limited life so they can get through each day.

    Our house is usually a mess, because cleaning up takes more ‘spoons’ than are available, especially if I want to do more in my life than just clean house.

    Your article is going to help us a lot… explaining what our lives are like (and why we do things the way we do).

  • Kimberly Czarnota

    This article just helped me accept my weaknesses! I feel the need to pace myself, but as of yet haven’t given myself the permission to be tired and rest. My illness is still invisable to the doctors, but they finally agree with me that I needed to be tested for MS. I still have one more test, but I should have a DX by May. Being that I haven’t been diagnosed with anything, I had a hard time using a cane, and flipped out when my fiancee said I needed to consider getting a walker. I am barely 30, and as far as anyone knows, nothing is wrong with me.
    Thank you so much. I can put myself in your shoes because I live in the same ones. I’m getting the prettiest cane I have ever seen, and I am going to use it with pride.
    Thank you for giving my pain a voice. I wish you the best, and many spoons in the future. <3

  • Lorian Rivers

    Thanks so much for this! My best friend was diagnosed with CFS a couple of years ago. It finallly explained why the normally raring to go person now “was too tired, had a headache, sore throat” etc etc everytime I called! Now we coordinate getting together around how is having the worse day! lol

    I have lived with several unseen ailments for many years. Some days were better than others. Everyone wants to know why I don’t “work”. Well, when you don’t know from one day to the next how you will feel, it’s pretty hard to get or keep a job!

    Recently however I was diagnosed with Pulmonary Hypertension. I need to sleep (or be in bed) 9-10 hours a night. I can function on less, but will need a nap. If my hubby and I run around all weekend, I can barely get out of bed on Monday morning, assuming I could sleep sunday night. It takes all I have to do laundry, since bending over causes shortness of breath. I could go on…but you all know what I mean.

    But you don’t LOOK sick! I always feel like saying “how about we change lives for a minute, you can NOT LOOK SICK and I’ll go out and live a normal life!

    People always wonder how I can be so happy and upbeat all the time. Well, it beats the alternative for sure. If I was depressed about all the problems I have, it would kill me…long before the problems will…so hey….might as well enjoy life what I can!

  • Thank You So Very Much For Sharing, What I Have NEVER BEEN ABLE TO EXPLAIN OR SAY.People who are NOT sick, have NO idea what it is like to have a diseases, in my case diseases,and judge me by how I look.They tell me…”But you dont look sick to me..you seem fine,you look fine or Ive never heard of that disease before.Maybe its all in your head.OMGGG, you take all that pain medicine,how do you function?”.They cant seem to understand that without all that pain medicine,I cant seem to get out of the bed or move because the PAIN IS SO INTENSE,ALL I CAN DO IS SUFFER AND CRY. I dont just get to suffer from “1” disease, I have several…REFLEX SYMPATHETIC DYSTROPHY SYNDRONE.BETTER KNOWN AS CRPS; INTERSTISTIAL CYSTITIS;SCOLIOSIS; RUPTURED DISCS IN MY UPPER AND LOWER SPINE;C.O.P.D.;DEGENERATIVE DISC DISEASE;BONE SPURS;DEGENERATIVE & OSTEO ARTHRITIS;CARPA TUNNEL SYNDRONE;HYPOTHYROIDISM AND PANIC ATTACK ANXIETY DISORDER. But I am supposed to FEEL and LOOK GOOD EVERYDAY. I have been ridiculed for not being at family dinners,children’s birthday parties;holiday family dinners;family outtings;shopping; falling asleep in my recliner(after not sleeping but maybe 2-3hrs the night before).Many of my family members and so-called friends have turned their backs on me, because they think that I am and should be able to come to all family functions or do whatever it is, they can do. They have never once tried to understand that “I AM NOT FAKING THESE DISEASES…ITS NOT ALL IN MY HEAD…LIKE THEY THINK IT IS…JUST BECAUSE I LOOK GOOD, DOESNT MEAN I AM NOT SICK…If I have a “GOOD DAY”,I try to take advantage of it and do all that I can.Then I pay for that “1 GOOD DAY”,for a week or more. I LOVE YOUR WEBSITE AND AM VERY THANKFUL TO HAVE BEEN ABLE TO READ “YOUR SPOON THEORY”….wished I could send the link to all my friends and family…then maybe they could or would at least BEGIN TO UNDERSTAND…FOR ONCE HOW I FEEL…OR ABOUT THESE DISEASES I HAVE.God Bless You ALL!!

  • Myrna Campbell

    I am very impressed with your story and that you have figured out this technique. I am constantly running out of “spoons” in my day and borrowing from tomorrow because I am so afraid of being seen as ‘lazy’. I so get how you have to barter with your spoons every day. I feel so misunderstood all of the time and I am constantly being judged by others. I have cardiomyopathy, diabetis and SARCOIDOSIS. If one doesn’t get me in a day another condition will as every bodily function is being affected by these diseases. Nothing I have tried for pain works/makes me ill so I just have trudge through EVERY day to the best of my ability. I was told to “google” the ‘Spoons Theory’ for a good explaination and for comfort because I am having a particularly rough day today. Thank you so much for sharing. God Bless.

  • BW

    My friend gave me this link.
    I can understand, my mom’s days were like that.

  • the way you explain this made so much since. Now I have a way to explain my daily life to my friends and family. Thank you

  • Rena C., Indiana

    I have Fibromyalgia. This is exactly how life is for me. I usually use “batteries running down” instead of spoons but the end result is the same – we can’t do as much as we’d like. I’m not happy that others share the experience, but yet I’m glad to know that someone understands.

  • Janet

    Thank you, Christine, for sharing such a wonderful way to explain to others how it feel to be sick, to be limited in every little way by illness. I’ve been dealing with these limitations for over 30 years now, and have only in the last few years given myself permission to not have a perfect home. I no longer live in fear that someone might come to visit and see dust on the coffee table. I do still struggle sometimes with wishing I was as energetic as… (fill in the blank). I still wish I could think more clearly, and wish I could remember my child’s first steps and all the wonderfully cute things they said and did.
    Thank you, Christine, for giving words to my thoughts and feelings. Your gift to “us” is immeasurable!

  • linda mentzer

    As I sit here with tears in my eyes, I realize that I am fighting the same battle as many others. I have been afraid to admit my fears and weaknesses to friends and family, and now I have a way to explain my life as it is. Thank you.

  • Vanessa

    What a beautiful way to put illness into a theory that those living with illness and those who love someone who has an illness can relate to. Thank you.

    I hate to have to think of my spoons, but it’s the only way…As tragic and irritating it is to think of every little thing and how it will affect every other little thing-or big thing, it would be impossible to survive otherwise.

    I know that I’ve been stubborn about it, because I’ve wanted so desperately to be a “normal” but I am not and so counting spoons is a way of life and for me the best way to go from day to day is to forget how few spoons I had the day before. However, I can never forget that first thing in the morning I’ll be counting spoons and praying that I wont have to think about how I spent my spoons because I find myself-yet again-with a deficit and try to calculate what I did wrong. All the while knowing that sometimes it really doesn’t matter what I did, it’s just the Bitch (Fibromyalgia) being bitchy and because I hate her, I’ll fight my way through the day-do whatever I can, and somethings I shouldn’t-even though I know that nine times out of ten she’ll win. But I keep on keepin’ on…

  • Well, I struggle with invisible diseases (fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, and others), and for 3 years I have been very good at hiding it from everyone else and myself. I live everyday in a “flare up” because I still have not learned to pace myself, and I still try to live the life that I used to have. Then I end up in the bed for 2 or 3 days; my life is a roller coater because I use all my spoons plus some, and then I am at rock bottom. It is so, so difficult to learn this new lifestyle, and even though I have been diagnosed for 3 years I still have not learned this crutial aspect of living with these conditions. This article is the best explanation that I have ever read, and I related to it so much. I will take this as a lesson and try to use it on a daily basis. Thank you for your insight and for helping others to deal their limitations.

  • Andi

    I saw this on You Tube a couple years ago, and cried. What a relief to have someone put into words what I couldn’t articulate.

    …35 years of scoliosis, chronic pain, and all those other little things that come with it.

  • Kendra

    I love love love the way you describe your disease by the spoons. I have MS which for me is still “invisible” so I don’t look sick and it is so hard to explain to people how it feels everyday and why I need to rest after grocery shopping or why I can only plan a couple of things each weekend or why I’m not spontaneous anymore. Thank you for this.

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