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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  • Pita

    God Bless you for having the ability to explain this! I have reflex sympathetic dystrophy, full body, fibromyalgia, scleroderma, RA and osteoarthritis and a multitude of other ailments beginning in 1986. Discrimination should be added to your “take away a few spoons”………as when you don’t look like people “think” you should they assume and discriminate, this emotionally hurts and maybe even more “painful” than some bad pain daze. My landlord recently said, you don’t look handicap, funny he doesn’t see me very often either. One last thing, yes we are still winners, especially if you choose to find your funny bone rather than be sad, look at your glass as half full and know you are not alone.

  • Annie James

    I agree with you, love the analogy!! I have had FMS since I was a teenager. I didn’t find out until 1995. I no longer work outside the home. I had to ‘retire’ from work. I knew something was wrong, but I did not know FMS was responsible for my failures at the job!! I figured this out after research and going to local Fibro meetings. Thank you so much Christine for this analogy!! As you know, people don’t always say “you don’t look sick” to your face, but word gets back to you from a friend or family member. This analogy will work for people who do not understand the ‘invisible illness’.

  • Monica Reents

    I understand everything you are saying. I often feel like a slacker or that I have let others down. This article made me cry because it was “right on” target for me. I am learning to slow down…it’s so hard and I have days where I over do it and the pain I feel after one of those days isn’t measurable on the “how is your pain on a scale of 1 to 10” and it doesn’t go away after resting for a bit, it literally takes days.

    I also don’t like to hear “I’m sorry” when people learn about my conditions…It’s not their fault and I can’t make it go away; it has become part of who I am but it doesn’t define who I am. I have to find new ways to do old things, which was really hard to accept in the beginning. I do things at a slower pace and limit what I do in a days time…which is the total opposite of how I did things only 2 years ago. Every couple of days or so I can’t do anything more than sit in my recliner with a book and heating pad (heat sometimes calms my nerves).

    I am so happy to hear how you handle your conditions. I had to respond to your post…it was like I had written it myself.

    Take care 🙂

  • Monica Reents

    Thank you. Thank you for sharing your explanation with spoons. I have syringomyelia /syringohydromyelia, fibromalgia, and arthritis; it is a rare spinal disease that has no cure. I was diagnosed about 2 weeks after my wedding, I had spinal surgery very quickly after because my ‘condition’ was advanced. Now, 2 years later, I am still trying to explain what it’s like to be sick because I don’t look sick, but your spoon theory explains my day perfectly. However, I don’t work anymore due to the level of pain and numbness in both arms and hands…it’s head to toe pain everyday. While some days are worse than others, I never feel good anymore and I can’t remember what “good” feels like. I am having another spinal surgery in July…I had no idea that anything was wrong with me until that very scary day in July 2011.

  • ldsgirl

    This is the first time I’ve seen this. I wish I could have read it years ago, when I had epilepsy and had to make everything “work” for me and my family–with children…and now, after what I refer to a “the great ankle crash of 2006” and colon cancer. Loads of fun, and no way to explain why, even though I looked okay, well, inside, not so much. It’s a huge contrast, what I want to, think I can, and what is real life, and no one wants to hear it. Now maybe there is a box of picnic spoons with my name on it…I’d love to share this on Facebook.

  • Beautifully expressed.Christine, you nailed it! I have Peripheral Neuropathy, specifically Small Fiber Neuropathy and some motor deficits. I also have some loss of autonomic functions. Right now in my life, the Lord has surrounded me with beautiful friends, but I have had others drop away, probably because they didn’t know how to handle me and my invisible illness. Thank you for your article.

  • Wow, this is great. I’m glad there is a way to explain to “normal” people what I go through when I have no energy because I spent the whole day doing thongs.

  • awesome analogy

  • spoon ring

    I was told by a few of your members to post here. What i do is make spoon rings,… not just any old spoon rings, but affordable ones. i never knew of this theory and it was brought to my attention when i started offering them at a greatly cheaper price than most. so i hope you check out my site, and like my work. stay happy and healthy!

    https://www.facebook.com/SpoonRing

  • Lakshmi

    Love this analogy…..i use different analogies to explain how i am feeling but no one seems to get it, they always think it is similar to their aches and pains and they just say that “you dont look sick” and you manage to come to work, cook, take care of kids blah blah blah. I will use this one now. Was diagnosed with FMS in 2008, been living with unexplained pain and other symptoms longer.

  • nufenwen

    Thank you for this awesome analogy! I have not been able to explain my disability to people because ‘I don’t look sick’ – but this changes everything 🙂

    so thank you!

  • Linda Hachfeld

    Rosey, Your action (do as much as you can…now because there will be a day, that this won’t even be a choice) is exactly how I try to say yes to activities and no to others. And, I pray, like you, that we all get an extra spoon for today.

  • Linda Hachfeld

    Wow! You get me. And, now I have a new way of being able to explain this to others who don’t understand why I can’t climb up two steps (without a railing) or walk that beautiful “up north” trail with them that requires jumping, leaping, uneven hillsides, or please don’t ask me to come to your house (where I don’t know if I’ll be able to get up out of your chairs) and why I don’t accept any invitation to anything that starts at or after 8 p.m.

  • Ivy, I agree. I found myself in the same cycle you are in. Without the meds,, I have no spoons to work with. I’m no drug addict but, I don’t have any quality of life without the pills. I used to resent the pills. Now, I am thankful for them. At least, I can attempt to enjoy moments in life, I would otherwise miss out on experiencing.

  • This article brought me to tears, which doesn’t happen very often. I understand your plight on such a deep level. I have been suffering with Arthritis, Spondyloarthropathy, and Fibromyalgia for years. I have used a gas tank before to describe my ability to do things. An activity costs so many units to accomplish. This all started with a diagnosis of fibro, over ten years ago. I had a harder time trying to get people to understand why I was such a slacker and never seemed to get so much done, also why I slept so late (because it is difficult to sleep). When I began to describe to my family and other people about the units of energy, they still had a hard time understanding, but I was able to finally break through with my family. My honey’s family was a little less understanding. One of my extended sisters, thought it was all in my head, even with the diagnosis. I think she understands now. It is hard for some to understand fibro isn’t a mental illness but an actual chronic pain condition. It is hard when I look so healthy for people to understand just what it is like. On the opposite hand I get the pity look when I am unable to do something or it is hard for me to hold something. I have to deal with feelings of feeling useless every day. There are days I rebel and fight to hard to get too much done, thinking “why can’t I be more ‘normal’?” the next day or several I pay for it.

    But, I have learned to slow down, meditate daily, get in touch with what matters. Even with my daily struggles and having to take so much medicine, I feel more whole than I ever did before and much more grounded. I have learned to take more breaks and some acceptance. When people say their sorry to me for my conditions, I just tell them not to be. I accept it as part of who I am, I strive to find different ways of attaining goals and making a difference. It is not impossible, it is just different. Thanks for writing this article so that people that have no real grasp of what it is like to go through chronic issues.

  • Chronic Action

    Ever since I saw your site for the first time a few days ago, I’ve been struck by how powerful your simple and elegant analogy of “spoons” is. It works because it is so true for those of us with chronic illnesses.

    Yesterday, I tried to squeeze a lot in. After work (around 4pm), I put clothes in a machine at the laundromat, did some quick grocery shopping, threw the clothes in the dryer, picked the clothes back up, and made dinner for my family. Then I got a migraine and severe fatigue.

    While feeling awful the thought entered my mind: “guess I used up all my spoons.” I’d never thought of it this way. Thanks so much for coming up with the analogy and for sharing it so articulately with us.

    Thanks,
    Rachel
    chronicaction.org

  • Don Simms

    I have COPD and this theory also applies to me as I am sure it applies to a lot of people with chronic health conditions. I can use this

  • Julie Linn Sims

    oops, wrong one, oh well!

  • Julie Linn Sims

    You are so loved. One night I was reading a book, a love story, and one passage was relating to the Hero helpless to fix the Heroine. I read the passage to my husband and we both cried. Most spouses/partners feel completely and totally helpless to fix our invisible issues. It is actually what helped ME understand his side of living with this and me. My husbands pain is because I am not getting “well.” His pain is invisible too.
    To Christine, I hope you are on Kindle as I am going to “gift” this to everyone I can think of!!!

  • nonski

    i love this article so much. so beautiful and enlighting. gah! it made me realize a lot of things too. thank you so much. i shared this to a lot of people. i had lupus for 13 years now.

  • Julie Linn Sims

    Good question!!!!

  • Now that nap time is over- I will use this analogy. Thanks for sharing.

  • This is beautifully written. I suffer from pulmonary hypertension in my lungs,epilepsy ,memory loss ,kidney disease, CHF,just to name a few.
    I’m tired all the time! I use to volunteer with many events even with all this. now I have had to count forks as the spoons are long gone
    The people who know me don’t get me cuz I don’t look sick. you look really good today. that is because I used my forks to look good to get through 4 hrs and then go home to sleep! I am so tired of the statement you outlook sick that I fake it so not to have all the ???s.
    anything I do takes the wind out of my sails in 20 minutes. nap time!

  • Chronic Action

    Both of my sons and I have chronic illnesses. I have colitis and migraines, my older son has crohn’s, an autoimmune liver disease (psc), and migraines, and my younger son gets migraines with vertigo. I am juggling my own “spoons” and helping both of my kids manage their own. So many times, my husband and I have planned our days choosing our family’s events/tasks/fun carefully so as not to overload it. Do too much, and someone will get a migraine or an IBD flare-up.

    I just started a website/blog about improving the civil and human rights of people with chronic illnesses at school, in the workplace, and in the health care system. My first posts have focused on what it is like to go to school with a chronic illness, and students’ rights in school.

    You can find my website at chronicaction.org

    Thanks,

    Rachel

  • bookbabe

    Sjogren’s can be debilitating – indeed, it is now recognized as a debilitating disease by Medicaid. It’s wonderful if you’re symptoms aren’t too bad at this point, but some of us Sjoggies have major organ involvement, neurological symptoms, hair loss… Please don’t minimize the impact this disease can have. Lupus sucks. Sjogren’s sucks. There’s enough “suckiness” to go around.

  • bookbabe

    What a great, great, analogy. I have Sjogren’s Syndrome. I am 43, slim, look fit and healthy – another member of the “But you don’t look sick” club. I have found it so hard to adequately explain or even describe this experience to people, the knowing that if you do something today, you will pay for it tomorrow, along with not really knowing until the last minute whether or not doing something is even a possibility. Thank you. I will try using this to explain my process.

  • Sandy

    Thank you for giving us a way to explain what it’s like… I have Lyme Disease, and even after having been a RN for 20+ yrs, I found it difficult to explain how it affects my life…in a way that someone else can really understand.

  • Rosey

    I heard about the spoons from a friend a few months ago and it truly describes my daily life. I have Fibro, Sjorgens Syndrome, degenerative disc disease, Osteoarthritis, IBS, GERD, a form of macular degeneration and the list goes on. I’m a 56 year old woman who looks at least ten years younger, but feels 30 years older. People tend to either not believe I’m not well…because I don’t look sick or their questioning how and why I do all that I do. You all know why…because one day I won’t be able to so I’ve got to do as much as i can while i can. Thank you for the spoons and i pray for a few extra spoons to be added for all of you this week.

  • Marie S.

    Mark, I too have suffered from having taken levaquin many years ago. I have had five partial Achilles tears – three on one leg and two on the other requiring many many months spent wearing the “black boot” for treatment. Also, have been left with “chronic Achilles tendonitis” which causes much stiffness and pain on a daily basis! I also have fibromyalgia which has its own set of problems. Levaquin should only be used as a last line of treatment! Hang in there Mark we are not quitters!!! Marie S.

  • Krystalina777

    That’s beautiful!

  • Liz

    I have been diagnosed with Fibro and RA since I was 16 years old. It is so hard to explain to my friends, family and especially my boyfriend what it is like to go through this. Everyday I am in such agony that it would make a person who isn’t sick wail with pain, while I just have to grit my teeth and make the best of the day I can. I miss my life before and I miss everything I had to give up. Pain meds are the only way I can make it out of my bed to have a somewhat normal life. As hard as it is and as much as I wish my life was how it used to be, part of me is grateful for it. I have learned to become a much stronger person emotionally. I don’t take a single day for granted and I do what I can when I can instead of putting it off for another day just because I’m in a lazy mood. As hard as this life is I know it has made myself, as well as so many others that are dealing with disabilities and illnesses, stronger people and that we can handle much more than most. I’m asked all the time, “How do you handle it?” My answer? Take it one day at a time and never take anything for granted. Enjoy every moment of life because you never know when it can change and your own body can turn against you. Gentle hugs to all.

  • CDFrance

    I have fibromyalgia, degenerative disc disease, & a few more problems. Recovering from 3rd fusion. I heard of spoon theory from tattoo show. It helps so much to explain to people how I’m feeling. Even told my doctors about it. My husband bought me a spoon tree he designed w/loving words engraved on each spoon…best Mother’s Day present ever!! God Bless everyone

  • Catherine Yaffe

    I’m sat here with tears streaming down my face. I was diagnosed 12 years ago with Fibro & ME – for years I’ve struggled to explain this illness to family and friends and your Spoon theory is a revelation – thank you so much for writing this and sharing with the world – you are an amazing person xoxox

  • Jlyn, I am like you. Pain meds enable me to do things when otherwise I would be bed-bound. But after doing this I will be even more depleted the next day, probably because the pain meds gave me some spoons on credit…and I always have to repay the next day.

    I have found there “are no free spoons” but haven’t found a way to survive without borrowing against tomorrow with the help of meds. If I had a nurse, maybe then I could rest sufficiently to break this high-interest credit habit that is keeping me poor. Rest sufficiently to allow my body to recover and produce some shiny new spoons!

    I wonder if you experience anything similar when you use pain medication, Jlyn? (With a lovely soft hug in return. xo)

  • Jlynn Alexander

    I have fibromyalgia and diagnosed with lupus in 1998. It has been a humbling experience as I now have to pace myself for the day…..just like the spoons. Some days I know there are NO spoons that day! The only way I can get through the day to go to work is to take pain meds. A spoon I suppose. lol And then, wait one hour for the meds to kick in…..It is the only way I can go to work. Let’s not talk about how the weather efffects us. wow That is a drawer full of spoons. Soft hugs to all. xo

    Jlynn

  • wow. thank you. you have no idea how much what you came up with (spoons) means to me. I have systemic lupus, fibromyalgia, diabetes, sjogrens, raynauds, interstitial cystitis and quite a few other “invisible illnesses”. This helps me have a way to explain things a little better to people. I wish I had the money to buy a poster.

  • Rudi Affolter

    I have epilepsy and neurofibramatosis. The epilepsy affects my memory, as does the medication. Now I am under extra strain because I beginning to feel my employers want to get rid of me. Their Doctor was trying to pressurise me to go part-time – as if I could afford to do so! They are totally out of touch with reality. The job is one of the few things that keeps me alive – literally.

  • Sandy Dregiewicz

    I have fibromyalgia and nobody really understands

  • fibromom

    I’ve been wondering what the meaning behind the spoons was for some time now. I’m so happy I came across this. Now I can share a truly marvelous explanation to friends & family. Bless your heart <3

  • What a wonderful message! I have Meniere’s Disease and can completely relate. When a bad case of vertigo hits, it can easily wipe out all remaining spoons for the day. I will definitely be passing this along to others.
    Amanda
    socksinthedisco.com

  • You have truly given all of us going through life with an illness/disability a great gift. So many people asking what it’s like, questioning whether it’s just in your head or not, and not grasping how much of a struggle every single day is. I have Lyme disease, which in turn created a handful of other lifelong problems in my body. I am lucky in the fact that I have a small group of friends who also have auto-immune illnesses and I can go to them on a particularly rough or painful day. I cannot thank you enough for this theory and what it will mean to all my other friends struggling as well. Thank you.

  • I have Lipedema. And was just diagnosed on February. After living my entire life (33 years) with bullying, belittling & being treated different because I’m “fat”. Being told by doctor after doctor that I just “needed to lose” weight from the waist down, and even having weight-loss surgery. I’m not fat. I’m Lipese. And I had to lose the mobility in them, for the reason to be found. The fat in my legs cannot be lost through regular means. My legs are sick, they swell for no reason, and cannot move like regular legs. I have to wear support garments from my ankle to my hip bone in order to walk. They get tired. And hurt – bad. I have to judge my distance, map out ‘game plans’ if I’m going somewhere where I may have to stand or walk. While I know that my illness isn’t comparable to Lupus, I relate to this to the point of tears. Because, I’m there too. And I want to thank you. So much.

  • Daniel

    As somebody undergoing chemo for chronic sarcoidosis I was asked to read this by my Wife. I’m really glad that I did because it’s a question that I have been asked by friends and colleagues and have never been fully able to articulate a satisfactory response. Thank you for taking the time to share your experiences and I hope you take pride in knowing that you have helped so many. I wish you all the best and a speed recovery.

  • Guest

    I am also having a chronical disease. After more than five years I do not even try to explain anymore about how I am actually feeling… due to the fact I mostly am feeling so tired I do not even have the energy (it will probably take me at least three spoons!). Secondly, due to the fact it is a waste of time because people (and unfortunately also many specialists) do not have a clue about what I am going through! The phrase “but you don`t look sick” is also a frequent used one, together with the phrase “I know a very good doctor” or “you should…”. Next time I will probably use your spoon theory to answer any well-intentioned comments about my wellbeing! Thanks Christine 😀

  • Guest

    trully this isa wonderful way to try to explain because those who are never sick really, until they have a health proboblem do not understand

  • mschronic

    I never would have thought that someone could put it so elequontly but you have. I have MS and epilepsy and it is truly like having to count the spoons in your hand. Thank you so much for this I’m going to explain it to my friends one day using your theory. Much love from South Africa

  • Arielle

    this is fantastic, truly. suffering with mental illness is not just a “head game;” it’s physically exhausting and trying as well. this really explains what I live with on a day-to-day. thank you for putting into words what I’ve never been able to do!

  • Lisa

    Love this, always have heard of the spoon theory but have never read it until now. I have Fibro/CFS. You put it so nicely!

  • Wow! I have a sister AND brother who have rheumatoid arthritus, a brother with lupus, and a sister-in-law with fibromyalgia… they don’t always “look” disabled, but certainly are! even i, with “just” osteoarthritis, asthma and allergic bronchitus, have days i can’t do things like others, especially in needing to avoid perfumes and other chemical odors in particular, so i won’t have out-of-control coughing and asthma attacks!!! but i certainly look fit for 61. i am so appreciative of the explanation you give here Christine in the Spoon Theory!!! it feels accurate and helpful! Thanks. bj

  • Thank you so much for this Christine. I have not been able to put this into words.

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