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.

Now you can purchase small and large poster prints of “The Spoon Theory” from our Online Store! These posters will make a perfect “get well gift, or friendship/ I understand gift.” We also think it would make a perfect addition to any doctor’s office, or support group meeting room.

The Spoon Theory Large Poster – $22.99

The Spoon Theory Small Poster – $18.99

Most importantly, get one for yourself!

©2024butyoudontlooksick.com
←  Older Comments
Newer Comments  →

  • What a brilliant explanation, done in such a way as to bring it to life for everyone. Well done and all the best for the future.

  • Kimi Corney

    I love this! Absolutely love it! I just read it tonight and already I am thinking in terms of *spoons*.
    My husband read it too, and I think he gets it. It is so hard for our family and friends to truly understand and I think this story helps.
    Thank you so very much, Kimi

  • Vohn McGuinness

    Hi Christine, Thanks so much for posting this. I have Fibromyalgia & ME-CFS and have had a bad flare-up for the past year and been unable to work. I have learnt to live my life in the exact way you describe, rationing each use of energy. I was only able to explain to friends and family in terms of pacing myself, which they never really fully understood. Your spoon theory is perfect in its simplicity and in its depth. To be able to show how saving spoons from the day before allows me to have a day out with them and that sometimes it will also use up some spoons from the following day too, so I’ll need to plan a rest day afterwards – it’s so easy to show them. They’ll finally understand why I need to have advance notice and can no longer be so spontaneous. Also, once explained, it will be so easy to say I have enough spoons to do this or that but not both – you decide which you prefer – e.g. “well I could drive you to X” but then I won’t have enough spoons to make dinner – you decide. I hope you are felling well at the minute and sometimes have a few extra spoons! Wishing you well. Vohn x

  • Lee

    Thank you, thank you, thank you!!

    I have a disorder known as Trigeminal Neuralgia and have suffered with it since my early 20s. I am now in my late 40s.

    Between the disorder, results of brain surgery and the heavy-duty medications I take, the Spoon Theory is my life. Always counting spoons.

    I just never knew that was what I was doing, or how to explain it to others.

    Now I do. Now when I say “I’m out of spoons”, I don’t get the guilt trips for not coming to dinner or out for activities I would normally participate in. Now I have a way to explain things to my family and friends in a way that they TRULY UNDERSTAND.

    Thank you!!!

  • Kathy Bynum

    This is a great way to explain what it is like to live with a condition that limits you. I have fibromyalgia and this has limited me. I recently had back surgery and that has taken away lots of spoons right now. Thank you for sharing this!

  • Azalia Reeve

    I’m right at this second stopped reading, because the sobs, the tears running down my face. I stopped at the part where she said that she needed to eat something right before anything else to take her pills in the morning, not to mention the other things she does when she “crack open her eyes”. I cried, and cried, and said: But this is the first time I’m reading this article, and on the Fibromyalgia Network page, three persons referred to the Spoon Theory, and I needed to read it first! I cried because I wrote THE SAME SENTENCE on my application for Social Security Disability!! (which by the way, was denied.) I’m still crying. I’m going to continue reading it later. I’m too emotional right now!

  • Leslie

    This was posted on a cancer site for a rare form of lung cancer. A lot of our members are very sick and there is little doctors can do for them. I have this cancer as well though I am not sick from it at this time, the surgery for it and the resulting nerve damage left me with one more thing that causes me constant pain. I also have arthritis, damaged discs and various other joint problems. Even though I have had 5 spine surgeries I still have to take meds to help me just manage to get out of bed…I have to sleep in a hospital bed as I can’t sleep flat,period. This spoon analogy is so true and over the last 12 years I have had to deal with people ,even my own family that just don’t get it! I had to deal with a couple of my sons (they don’t feel this way now) feeling like I was a drug addict and not safe to hold their babies. This hurt me to the core. I try and do for my husband and family and this leaves very little “me” time. I rarely go out as it takes too many spoons….I have responsibilities and chose to save my spoons for them. My hubby doesn’t understand though bless him he tries, why I spend alot of time resting in bed and watching TV. I tell him I can’t read if I am hurting too much but that TV will distract me to a certain extent. I am glad to be a born again Christian, knowing I will receive a brand new body some day. Pain and sorrow will be over. the Lord helps me not to dwell on the pain and what I can’t do but it is still hard to explain to those around me why I can’t come to their house or go out to dinner. God Bless all of you folks, especially the young people having to deal with serious illness so young, I do hope for you a pain free day even just once in a while!

  • Tracy Deneen

    I have Lupus, Fibromyalgia, CFS and many others. Thanks for putting it in a way that we can explain to others how we make choices everyday. I will start using the spoon theory to help others understand how hard it is to choose what to do everyday.

  • Kim Phelps

    This is the best article I have ever read. You explained my life, a day in the life, of having Fibromyalgia. I am crying. Thank you for writing this.

  • Lori Coulson

    Same thing for fibromyalgia — with an added “missing spoon” — my memory. I HAD a wonderful memory before fibro, and not being able to remember even simple things is a source of ongoing aggravation.

    Someone said, “You’re so organized!” Sigh. No, I’m not — I have to write down everything I plan to do, and check my daily list. Because, no list — no clue what needs to be done. Some of it I’ll remember if I’ve left enough visual clues, but that’s not something I can count on.

  • Andrea

    Thank you. I had a stroke two years ago. Nobody seems to be able to grasp the concept of how my world has been compromised. Thanks for being able tp articulate the challenge so well.

  • Thank you for being the inspiration to all of us suffering in silence, because we “don’t look sick,” we are not struggling. I applaud you for reaching out and giving people a ray of hope that there are people out there in the world who are accepting and understanding of invisible diseases. Thank you, thank you, thank you — from the bottom of my heart.

  • I will defiantly have my family read this. Thanks for the awsum read and something we all deal with daily.

  • Very heart touching a good read. Nice to know your not alone but heart breaking to know other people suffer as you do. I would not wish the pain along with the 50 other symptoms you live with daily….. But thankful I’m still here on this earth. Thank you for this.

  • Susan Wilkerson

    A very useful theory for disability and illness also for older people.The Spoon Theory is excellent Info for caregivers too.
    A back surgery last year really destroyed my self-esteem by keeping me from my normal activities. I also Feel my later husband’s “Spoons” were gone for him at the beginning of the day.He had many chronic diseases but continued to work until a few days before his death.

  • Tena Hastings

    Have you thought about making smaller versions? I’d love to have some as wallet sized or even post card sized so I could hand them out.

  • Robin Davis

    I have had MS for many years, I don’t look sick. I walk funny sometimes and I forget things that people tell me within a few minutes.

    I’ve never found a way to explain how it feels to have MS, but you hit the nail on the head. Thank you so much for your insight.

  • jamie lena

    I HAVE HAD RSD [CRPS] FOR 8 YEARS AND HAVE ALWAYS STRUGGLED WITH EXPLAINING THE BURNING PAIN I ALWAYS HAVE IT NEVER GOES AWAY THE PEOPLE IN MY LIFE I FEEL FORGET THAT I LIVE IN PAIN I THINK I HAVE FINALLY FOUND A WAY TO EXPLAIN MYSELF THANK YOU SO MUCH FOR YOU WONDERFUL STORY AND MAY THE REST OF YOUR DAYS BE FILLED WITH LESS PAIN AND SUFFERING WILL ALWAYS BE THINKING OF YOU BY

  • Kara Nolting

    I was born with cerebral palsy and have recently been diagnosed with a handful of other delightfully painful issues. People always say to me ‘oh I’m sore today, it must be rough for you to deal with this everyday’. And I know they’re trying to understand, but there’s no way they can. This explanation is absolutely amazing.

  • Laurie Preisendanz

    I have lived with Lupus for over 25 years. This is the first time I have heard it explained in a positive way. I hate complaining about this or that, or making excuses people don’t understand. I have shared this on facebook. I THANK YOU for putting into words, and physical illustration, the life I and many others live.

  • Ann Belfi

    MS forever.. that’s what I have and I cried my way through this article. What a wonderful way to explain to anyone and myself what it feels like to have this disease! Thank you! And now I must go look for more spoons lol

  • Clarissa Hallowell

    I love the spoon theory, and wanted something to remind me to keep a spoon for myself. My husband bought me a spoon necklace off http://www.artfire.com for a New Year’s gift. I suffer from Scleroderma and Polymyositis and need to be reminded that I need to save a spoon for myself everyday. Thank You for the wisdom of the Spoon Theory.

    🙂 Clarissa Hallowell

  • Rachel

    I’m 20 years old and have had chronic hip pain for 7 years. I’ve had 6 surgeries on my hip, and seen countless doctors with no relief. My last surgery was pretty major, and I began to develop very strange symptoms a month out of surgery. I was told I had an infection and was put on multiple antibiotics, up to 3 separate ones at a time, to treat it… But my symptoms only worsened. I was on these harsh antibiotics for 2 months before they gave up and tried to re-diagnose me. I was then diagnosed with lupus.

    As a 20 year old girl who has already missed out on so much because of chronic pain, I feel like my life, what are supposed to be the best years of my life, are simply passing me by. I spend 15+ hours in my bed and the rest is spent on my couch. I used to be extremely active so this is pure torture for me. But the worst part has always been other people. So many friends disappointed because of cancelled plans. Countless phone calls and texts apologizing for what I can’t even control. I’ve been called lazy, a faker, and worst of all, lost even my closest friends. All because they simply do not understand.

    When I read this, I suddenly felt so relieved. Someone finally explained what I cannot. When you deal with this for years, you start to feel like you are in fact lazy, a horrible friend, even a faker. To read a story from someone experiencing the same thing is amazing.

    So thank you, for putting my pain into words and validating how I feel. The best feeling in the world is knowing that someone else knows exactly how you feel.

  • Caitlin

    I was just recently diagnosed with fibromyalgia in April 2012, although I believe it’s gone undiagnosed for a few years, and I found a link to this post by chance. I honestly cried the first time I read it. I had never been able to adequately explain to my friends and family how hard it is to get through the day sometimes, and how it’s been a struggle to learn what I can and can’t do, and how to prioritize my time so I can make it through the day without exacerbating my pain by trying to do too much. I’ve always been the girl who tries to do it all to the fullest degree, and now if I overextend myself, I see how much I pay for it the next day or even the next week. Thank you so much for writing this. It’s helped a lot of people in my life understand that I live with limitations, even if they can’t always see them or understand them, and my mom has even started using the term ‘spoons.’ Thank you.

  • Mary

    Thank you so much for this! A friend shared this link with me and I intend to share it with others! I have Spina Bifida and Fibromyalgia. It is very difficult to get others to understand what it’s physically like not to have the strength, at times, to even get out of bed. Thank you, thank you!

  • Lauren M

    I have Reflex Neurovascular Dystrophy, a chronic pain condition. It is not something you can see, and this is an amazing way to help people understand! I am young too, so this is a great way to explain it to my friends! thank you <3

  • Christine Clark

    Thank yo so much for posting this story! I’ve known about it for love time, as I have lupus. I felt the longing to post it today on FB asking my friends and family to read it so they may understand why I’ve been in bed since the Christmas Eve party I threw! God bless you.

  • When I first became chronically ill almost 13 years ago, it felt like I had the flu ALL THE TIME. Yet, when I would go out, particularly to church, I would put in the effort to look nice. Fix my hair, put on makeup, dress nice. And then I got to hear people say, “Well there can’t be anything wrong with you, you look so good!”

    Yes, that from my “Christian family.” Wonder why I don’t go to church any more? Hmmm. I still have my faith in God and in his Word, but I found Christians to be just as clueless as the rest of the world when it came to the horrific grief I experienced after my brother was killed by a drunk driver, and then later when I became so ill.

    My life now is filled with taking dozens of supplements a day just so I can function. And that is, not to function like other people, but rather, just to function with the life I have. I don’t work outside the home, I have no friends or social life. I used to, but on top of the adrenal burn-out that I was hit with all those years ago, I was diagnosed with mono in February 2012 and I am still recovering from that. Not being able to get out of the house much, everyone I used to know has apparently decided I don’t exist anymore! My mom calls…and I have my four wonderful children in my life, so I count my blessings.

    One thing I get tired of are those people who think they are superior because they have traveled the world or are involved in various organizations and activities. Do you know how much work it is for a “spoonie” to travel? Just a few hours away, much less half-way around the world? These people, unfortunately, don’t realize that they are so BLESSED to be able to have these opportunities.

    I am working on rebuilding my health. One thing that was not helpful all these years was being in an abusive marriage (30 years+). Yes, all these years I have been ill my husband’s focus has been on “fixing” me. Try this strange therapy, try that! All because he needed to have his every emotional and physical need met all the time, and if they weren’t, well then I was a failure. In fact, the last five years have been hell dealing with his constant accusations of failure. Never mind that I not only was doing my best to meet his needs, but was also homeschooling four children, caring for all the household responsibilities AND doing the books for his contracting company.

    When I think back on all that I have done over the years, and then putting up with his abuse too, it is no wonder I became so ill. In fact, God told me if I didn’t get out of my marriage I was going to die, that’s how sick I had become. I had never dreamed of getting a divorce…didn’t believe in it. But my husband left me with no choice. He has believed all along he is the perfect husband and I am an abject failure no matter all I did to make a nice home for him and our children.

    I am hoping, and have faith, that with that abusive relationship out of my life I can now “heal.” I have hope that over the years I will be able to have a life where I can actually get out of my house…have a social life…pursue a career. I know that I may always have to be careful not to overdo, etc. but if I could have a somewhat “normal” life, it would be so wonderful!

  • empha-sympathizer-passerby

    Stumbled into this domain via “always darkest before the dawn” search, and thought “spoon theory” sounded like it might be interesting.

    Touching story, and great method of explaining… the… weight… of living with and managing a disability (not just lupus).

    I’m pretty sure i don’t have lupus, but i’ve had a similar methodology and outlook on my own life, for many years, and this story/theory really hit home with me.

    The freedom of “just doing,” that so many take for granted… does indeed become like devising strategies in an endless war.

    The core concept of this was introduced to me, through a story of a person who met an old homeless man, who spoke of conserving one’s “hurry-up energy,” because you never know when you might really need to spend it all at once; and if you spend it unwisely, you won’t have it available when it’s really needed.

    Most people just have no idea how hard it is to even just live, when every little thing is an ordeal, and sometimes you have to just not do certain things, because you just don’t have enough “spoons.” And further, some things take more spoons all at once, than you will ever have in a day.

    Thanks for publishing this story.

  • People have often asked me what I meant when I said spoons. I always wondered how detailed the original story was. This made me cry, thinking of how hard it is. Really glad my partner was next to me & held my hand when I got choked up reading this.

    The line that got me the worst was:

    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.

  • Linda

    Thank you for sharing this! While I have been blessed with good physical health, I’m not so lucky on the mental health. You have given words to the way I feel with my depression. God bless you.

  • Gwen Higgins

    I have RA and had never been able to explain it. Thank you, thank you, thank you. God bless

  • Hettie

    This really hits home for me as I have ME and Fibromyalgia and find it really frustrating trying to explain to people how it affects me and my life as I have problems verbalising the way it is. As a child I had an endless resource of “spoons” but they ran out at 12 years old. At 27 now people are always saying how well I look then ask how I am, its hard to say the truth without sounding really negative, but it’s just the truth. Now I have a way to explain, thankyou.

  • Koot

    What a wonderful explanation, this is exactly what having CFS and POTS is like. I really am careful with my spoons!

  • Thank you for sharing this story. It makes me think.

  • My husband and I both have genetic conditions that don’t make themselves readily apparent (fibromyalgia, PCOS, heart failure, dysthymia, and more). Spoon Theory has been SO valuable in the past couple of years, helping us explain to friends and family that yes, there is so much we would love to do and we would love to spend time… but there are times where we just don’t have the spoons. We can’t thank you enough for this and wish you all the best.

  • Tony Turtle

    I didn’t realise that so many illnesses/disbilities/YouAin’tGotIts related to the Spoon Theory!

    My daughter has been diagnosed with myalgic encephalomyelitis, I suffer from osteo-arthritis, and now reading through the comments, I see so many others also have to “Count their Spoons”. I used to refer to “Pain Management” and working out what I could do in a day without causing so much pain that I could not sleep and would end up ruining the next day.

    I am now a dedicated SPOONIE and PROUD of it!

  • Kelley DuBach

    Having MS made this a perfect way to explain things to people. I am more mobile still than others so people just don’t understand how I feel. Some days I feel like I should have a scarlet MS on my chest so people can recognize my disease. At least God is my main “spoon” and with Him I can get through this.

  • Stacey

    thank you, thank you, thank you. this couldn’t be more spot on and I definitely couldn’t explain it any better. it’s extremely difficult to explain to people that you are sick, when you don’t look sick.

    THANK YOU.

  • Jen

    I have just stumbled upon your website and have actually seen the “spoon theory” referenced on some other websites over the past few months. I have been dx with chronic pain, fibromylagia, osteoarthritis etc etc. I have never been able to explain to my friends/family why there are certain things I have to cut out of my life and how important balance is for me now. THANK YOU for sharing this! What a blessing!

  • Janet Bowers

    Wow. This is a great explanation. Doctor have not figured out what is wrong with me. My rhuematologist is ready to diagnose with me with Fibromyalgia for lack of a better diagnosis. This spoon theory really explains what it is all about to live with an illness, especially one where a person does not look sick. Thank you so much for this. Blessed Be.

  • Niomi

    mpI cannot believe how accurate that depiction was of how I feel!! With only a few exceptions; I suffer daily, work to take care of my quadriplegic father & raise 3 kids-among othr things but those 2 “rob me” of most of my “spoons” 4 the day!!
    Thank God for the understanding & support of others who suffer & others who r just sympathetic…
    THANK U ALL & I PRAY 4 STRENGTH 4 US ALL!

  • Margot

    Bonjour madame , So lovelly lesson you invented . It does discrobe what I also living, and because of you, your intelligence of inventivity , I will also find a way to explain..
    B ecause even thow we love each other,
    but my Children( my daugther 40 years old and son 44 years old ) get really upset against me and think like most of all poeple that it is psychological,
    and that i exagerate;( thow i do not complain ,i just have hard time making things norammmlly and correctly).
    Thow I reallly with honnesty,
    I reallly do my best do my home works at 63 years old, being held in my sickness prison since I was a teen ager
    I really do the most i can , with a positive and smiling face to live the day , to live the nigths without sleep, and live with painfull parts of my body,
    the pain having a journey in my body ,
    the whole body and stopping more strongly on some parts of the body .at any time of day or nigth..and the terrible insomnia who makes teh next day so terrible to live!

    I than k you so muche.
    I feel compassion for you.

    I have found your link on a facebook groupe abot chronical fatigue, fibromyalgia, restlesslegs, syndrome of dry eyes etc;..we all go throw what you discribe,

    I am Belgium,French speaking, so please sorry if my English comes along with many mistakes in my writting.

    Please do continue being yourself withat glow of love, compassion ,understanding and so much intelligence, you are beautifull!

    Margot

  • Teresa Spoelstra

    Yes…well said, “Well worth the spoons it cost to read”

  • Teresa Spoelstra

    I have Ankylosing Spondylitis & Fibromyalgia, I have beated myself up for years trying to keep up, which exhausted me even more, to the point I would end up in bed for a day or two from performing to make others happy! So they would’nt be upset with me. So many times I heard just get up and walk or try to sleep! Or I would hear how people were talking behind my back…That I was always sick!
    But did’nt look sick to them, because I would have make-up on somedays and my Disease was’nt worn on my sleave.
    They could’nt see what it was doing inside my body or feel the pain I was trying to hold back just to please them…. Finally one day I had it!….
    I realized these people do not live in my body and I can not fix ignorant if they don’t want to take the time and learn about me… I had to realize it’s because maybe they do’nt care enough…
    I gave them information about me before,.I tried to explain it so many times and gave them web-sites to go to so they could read about what I had. Now if they still want to talk…Their problem, not mine I don’t have the energy to fix the ignorant like I said, I do’nt mean that in a mean way! I just can’t!. I have to try and fix me, because their not. Their actually adding stress in my life making me feel MORE worthless about myself. I have cried many times because I have missed family get together’s because I was to sick to go or missed a few of my daughter’s school function’s because I coud barley walk! PLEASE… Don’t beat the people up that already beat themselves up! They start wondering if they even belong,…The pain is un-bearable at times! We are tring to hold on to our dignity and wanting to feel better instead of the way we feel everyday and tring to be apart of the world that comes so easily for others, does not come easily for people with auto-immune disorders.
    Lots of people take their own life because of this, because they already feel like it’s over! Try to understand them!…. if you can’t or just do’nt want to….. Then …Do’nt Judge them! Everyone is different!
    We really do struggle for a belonging in this so called normal world! Thank You.. Bless your Good Health- I hope you never have to endure any sickness.

  • Ericka Forman

    That is such a good way to explain the limited items that you (or me) are capable of doing in a day. I just got done cleaning, and had to sit on a heating pad, so that is what I am doing now. I have been trying to explain to my family that I am beginning to have a lot of trouble with my back (I’ve got a bunch of arthritis in the back, neck, hands…, tendonitis, disc issues, sciatica….) and I don’t know how much longer I can keep vacuuming and whatnot. Of course I am always hopeful this will ease up, sometimes it does, and it’s good to be optimistic. But it is also good to be realistic and this seems to be a good way to explain the issue. Thank you for this gift. And I hope you have many spoons for the holidays and everyday.

  • I live with multiple illness. I take 18 diff meds
    a day yjat doesnt include ebery day accidents
    colds flue lack of sleep pain etc.etc……
    But most people think Im fine. Healthy people
    rejoice. That you and alot of other people don’t
    have to be limited by the condition youre in.
    Great article thanks Nora. paul

  • Susan McGrath

    This is brilliant!! Never have I read such a perfect view of my life.I have lived with MS for 28 years.It angers me that I send this to friends and they will not even read it.This should be used to spread awareness.Thank’s for sharing this!!

  • Margie

    Thank you, Christine, for sharing your story about this helpful analogy.

    Nearly 15 months ago, I suffered what I now know to have been my fourth mTBI (mild Traumatic Brain Injury) of my adult life. The first three had been undiagnosed (and/or had happened before the true impacts of mTBI/concussion were well-understood by the medical community). Not only did I not look or sound impaired, (the brain equivalent of sick,) but I didn’t know I was impaired.

    So, for many years, my “number of spoons” had been limited without my having known it. Often, I had run out of spoons without knowing that my supply was limited and I wouldn’t be able to just grab another when I needed it.

    But, at age 45, this concussion — while the result of a less severe impact to my brain than the others had been — was the one that triggered every symptom “in book.” Between that and the fact that even primary care providers know more these days about the potential serious long-term impact of concussions and whiplash,(especially when they are not the patient’s first mTBI,) I finally realized that I have become impaired: probably a little bit more each time I an “insult” (as the doctors call it) to my brain.

    I have joined the legions of people who start out each day with a finite number of spoons. Lupus, MS, Lyme disease, fibromyalgia, etc., etc.: there are so many of us out there who may not look sick or disabled, but who have to constantly count spoons, make (and stick to, and revise) plans of attack, choosing carefully how we will “spend” our spoons.

    Lately, I’ve been trying to find the right professionals to help me find out how many spoons I actually still currently have at my disposal (ie, conduct the kinds of assessments necessary so I can get a true picture of what my capabilities are at present.)

    Then, I will need to do two things concurrently: 1) find out whether there are rehabilitation/treatment programs I could try to get into which might be able to help me to regain some of the “stockpile” of spoons which I’ve lost to my brain injuries; and 2) learn how to make (and stick to, and revise, when necessary) realistic “plans of attack” for each day (or week, or month, or year) — plans which are appropriately suited to the actual resources/number of spoons I really have at the outset of each day/week/month/year.

    Thank you again, Christine, for giving me a useful way of seeing (and explaining) the challenges that I face.

    May we all — my dear fellow spoon-counters — experience the peace of acceptance. And may all of you who don’t (yet) have to count your spoons find the understanding, or at least empathy and compassion, which are necessary not only to be able to be in supportive relationship with us, but also to be prepared for the day (which will, to one degree or another, eventually come to everyone who lives long enough) when you, too, find yourself among the ranks of the spoon-counters.

  • Sherilynn M Matsumoto

    I have late-stage, chronic Lyme disease. As I wait for further treatment which may or may not come, I count spoons all day, every day. There is nothing more frustrating than having a tremendous desire to do – whatever – and be in too much pain or lack the energy to do – whatever. Thanks so much for sharing your story and theory!

←  Older Comments
Newer Comments  →