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.

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  • Judianna Rae

    Two years ago as my middle sister was helping me move into my new house, she started asking questions about my fibromyalgia and asked me to describe it to her. I knew the “textbook” definitions were going to sound rehearsed and insincere, so I closed my eyes and traced the pain through my body, describing the different types of pain and the effect they have — which ones are more annoying than debilitating and which are life-sucking, energy-stripping, motivation-zapping and lifestyle killers.

    She seemed to understand my analogies. But she was more concerned that I might be addicted to the pain medication I take. Her explanation was, “You slept through Christmas. Was it the drugs?” I got angry because she obviously didn’t listen to what I said about pain, only waited for the opportunity to blame it on one of the few options I have to help me get through the day — any day — even a particularly good one.

    I look back now and wish I had known the Spoon Theory during our conversation. I think she might have been able to tear her focus from the drugs and realize that pain, exhaustion, muscle atrophy, biometric pressure changes, lack of restorative sleep from apnea are why I “slept through Christmas.”

    This holiday, I think I’ll wrap a copy of this story around an art display of spoons so she can keep one as a reminder that her sister is doing all she can to survive and live as much as is possible without depleting her spoons so she can be a part of family holidays like Christmas.

    Thanks for what I hope will be the start of many more productive conversations about the things they don’t understand about my life.

    JAR

  • I think it would be both fairer and more accurate to say that all this is on top of the spoons everybody has to give up. We as people with disabilities seem to think nondisabled people have a sweet life with no troubles… they have them and we have them.. we just have more. My disability tires me but I am grateful it doesn’t hurt… but blindness requires many more very expensive spoons but limits your chances of getting a job to practically nil so you can afford them.

    It’s a good metaphor… but let’s remember life itself uses up spoons. I think we alienate people who otherwise would get what we are trying to say by denying they lose spoons too.

    Nan

  • jonathan

    I like Alistair’s take on this. Though the spoon theory is excellent in its breadth and depth I have wanted to induce in my psychiatrists and nurses aspects of Bi-Polar Psychosis, delusions and all else the ‘think’ they are treating. In their case, mostly, their illusions are stronger than others delusions. But still I will use this Spoon theory and adapt it. Maybe play with the 24 hours per day, or time and distance. All things change in this area it seems with all kinds of conditions.
    1. Alistair
    October 3, 2010 at 10:25 pm

  • Colleen

    Thank you Christine for your insight. I do not have Lupus, but I do have FM. Most people do not know how we have to barter our energy. The “Spoon Theory” says it all.

  • I don’t recall if I gave a thumbs up & a big thank you when I first read this quite a while back. If not, my deepest appreciation to the author and all the commenters.

    What absolutely KILLS me are the ones who say “You look great every time I see you!” Well, THANKS, but DUH… I pretty much only leave the house when I feel ok. Someone said to me “I saw you kind of skip to the front of the room”. I was explaining about not only my Fibro but my spinal cord surgery due to a golf ball size lesion at C4/C5. I was left with paralysis on my right side after my nerve root had to be sacrificed and a laminectomy (Half of the 2 bones at C4/C5 removed). At the time, my legs were still functioning normally. I was like – “AND YOUR POINT IS????”

    I feel like everyone here will get it. Thank you.

  • This is a great way for people to understand Chiari. Chiari is a rare Brian disease that effects our nervous system and daily way of living…. I have had so many people not understand what too do with me because “I don’t look sick”. I actually look better then I ever have…..It is sad because I feel worse then I have ever in my life…. I almost gave up all together on trying to get people to understand and a Chiarian sent me this link….. It was great. I sent it too everyone. I hold my spoons tight and sometimes I feel very stingy about not using them… When I need them I am thankful for them….
    I am thankful for this site…..

  • Wow… what a great way to explain chronic illness.

    I’m a nurse and this is a truly great way to explain. I too now finally myself can understand these a bit better myself! This will definately help me along my career, with empathy, guidance etc with patients and others who do not understand…

    I shall explain the spoon theory.

  • Chelsea

    Wow! I can truly relate to this though I don’t have lupus. It IS like I have a limited number of spoons and the rest of the world has unlimited. I have tried to explain this to others who don’t have autism like I do and they don’t seem to understand this. This is a GREAT way to explain it to them! Thanks.

  • Kelly

    I love this! I am a teen who has had Lyme desiease for 16 years and i had to move away from home to get treatment. I have constant pain, no engery and seizures. When I’m home it’s very hard for my teen friends to understand why I can’t go out. This is a perfect way to explain it. Thank you so much for this! It will really help me out at such a young age to explain to my teen friends of how I have to pick what ‘spoons’ I have for the day!
    Kelly, age 16
    Colorado

  • Allie

    My best friend died last month. Though I mourned her at the time, it was a busy time, plus my (our, we shared it) birthday was in a few days, and I made myself not dwell on the loss during my birthday. But the last few days, I’ve been feeling the need to go back and spend a little time mourning again. I am writing a ‘Lessons Learned from Rachel’ tribute, and I am going to include a link to this page. Rachel used your explanation to help me understand how the chronic fatigue caused by her brain tumor made her life such a challenge.

    I want to thank you so much for helping Rachel to help me and her other friends understand her better. Like your friend, I wanted to know, and hearing her give your explanation was a heartbreaking realization. I believe it made the last year or two of her life better, knowing that her friends had a way to visualize her struggle.

  • maggie

    Hi this is great my daughter 15 has “ADDISONS” and sometimes I 4get how hard each day can be for her I will print this off and put it on my fridge to remind me on a daily basis what she goes through

  • Please contact christine directly through the contact us link on the top tool bar and not through the comments. So that she can address your special needs. Thanks!

  • I’m writing a fiction short story where the main character and her sister have Lupus. Leslie, the main character, watched her sister’s marriage disintegrate because the husband doesn’t understand his wife’s condition. Leslie is afraid the man she loves won’t be able to live with her Lupus either.

    May I use this story in the story? I won’t copy it, but have the man who loves Leslie act it out to show her he does understand. I would give you, Christine, credit for writing the story he read and uses.

    Vivian

  • Frances

    Today was one of those days where the spoons were gone before I could open my eyes…Love your story. I had ‘CFS’ diagnosis since 1986 until they finally diagnosed it as Behcet’s Syndrome 4 years ago… On my good days…ohhh how much I long to do…but you always have to moderate or payback will get you…being here now though aint all bad when I can just let it be… Great audio book…by Pema Chodren called The Places that scare you helps immensely… about mindfulness…Centers me …I keep it in the CD player in the car and it soothes the agony of effort….Best to you all…we are warriors on a common path…

  • I would be very happy to have someone volunteer to translate it. Thankyou for offering!

  • Jean

    I’ve spent years trying to explain this to others with little success. Thank you Christine and BYDLS for making it more widely available.

  • Anne

    I can totally identify with so much that has been written. I especially identify with Cathy J. I always balanced my check book to the last dime and kept my house in order. I was just diagnosed with Lupus and just get through my work day. I struggle to stay on my feet past 9:00p.m. My husband,kids,friendships and my house have all suffered.
    The spoons explanation works. Thanks

  • I’ve sent this to my friends and Husband. I’ve caught his cold and cough and ame worse than he was. Maybe he can now understand why for so many years I didn’t get things done. All ways thinking I was lazy and suck as a wife. But he’s stuck it out so far for 32 yrs. It’s rough right now. and I’m hoping we get through the rough stuff and hang in there.

  • Giovanni

    Thank for sharing the story. May I give you one spoon by translating this story into Italian so that Italian people can access this useful and inspirational data? Ciao

  • I am thankful for BYDLS. When my body started falling apart I had the support of others who had been through it and I gained some priceless friendships as a result. Today it is a privilege to give back by serving as a moderator. Thank you BYDLS.

  • Kate Smith

    OMG that is amazing its so correct i cant believe how amazingly true every word is. I have had ME/CFS and alot more illnesses for 3 years now and cant take any more reading this has made me think differently i understand it now. wow am going to use the spoon theory everyday and see how i go. Thank you soo much. keep up the good work. hope you are ok and having a better day. Best Wishes ALWAYS xx

    Kate Smith, 30
    Liverpool,UK

  • CathyJ

    I was so touched by this. Thank you for explaining what many of us have no words for. I sit here in a house that I can’t take care of and I can’t get out of because there’s no energy to handle it all. People want to help, but it is so hard to let them in and see the mess that has become my life. I know they won’t understand how I got like this. They will think I’m lazy or sloppy or whatever. I lay here all day (Lupus, Lyme Disease, Fibromyalgia, and a host of many other things, disability since 1995) and look at this mess, and wish I knew how to do what others do in minutes — for me it could be hours/days/months/years. I wish just for one day they could feel what I feel every day. I feel like I’m just missing out on LIVING!!! When will the fun begin?? When will laughter return? Maybe this spoon theory will help them get it. Thanks again!! Well done!!!!! 🙂

  • Hillary

    Wow….. The words Thank You don’t seem to be quite enough. Today was a rough day for me and as I cried and read I realized sometimes the bad days come and you just gotta roll with it. Thank you for sharing your “gift” with us. Everyday is a chance to learn and grow 🙂

  • Tiffiany Williamson

    Wow, I have been dealing with Lyme/ and chronic EBV, this year, this is so greatly expressed!!! Thank you so much !

  • Cori

    I’ve been looking for a way to explain things to people. It’s been hard because some days I have all the spoons in the world that I may need or want, and other days I have very little and the second I get a headache or migraine I drop down to none.

  • Carol

    This is a most amazing article, Christine. I have some autoimmune effects to deal with, though far less than even 6 years ago, thanks to an understanding, helpful doc and, I think, to the information I have gathered over time. I also have a daughter with Lupus. I think, perhaps my mom did too, though she was never diagnosed and died in 1990, way before Lupus was really being talked about. I also have friends with various chronic illnesses/diseases and this is so clarifying. I got the article from my oldest Granddaughter and feel so blessed that she sent me your website address. I believe you were meant to discover this way of explaining chronic illness of any kind. You have changed the lives of people you will never know. For that and for your beautiful way of writing, I send you my thanks. God Bless you daily as you earn and lose your spoons. Oh, I kind of like the idea of Leonie’s about adding knives throughout the day when you overdo or just plain push on when you need to stop. Hopefully they will be table knives, not sharp cutting ones, but all of us who experience any amount of chronic disease and “abuse” our spoons for that day know they are usually sharp.

    May I have your permission to share this website and also save a copy for myself or friends who do not have internet access?

  • Anita

    What a beautiful analogy! I am suffering from fibromyalgia and osterartriteritis and friends and family don’t understand why I can’t do the things I used to do. I am a retired teacher and was looking forward to traveling and spending time with my grandchildren. Now I’m lucky if I can get dressed or get out of my recliner. It’s been 7 years since I’ve slept in a bed.
    I have to save my spoons to make dinner to make for my husband, whose is a diabetic and insulin dependent. We are counting carbs and sometimes me brain is so foggy I can’t even figure out the number of carbs is in his meal.
    My family doesn’t understand why I don’t join their functions, so I am going to show them this article. Thank you,Christine.

  • Krista

    Thank you! I’ve been struggling with something the past several months. Still no diagnosis. I’m even fighting my doctor sometimes because I don’t seem sick. Thanks for a way to put this in perspective.

  • Colleen

    Thank you so much for this. I lost my husband to cancer recently, after a very long battle with spondylitis and other chronic illness. I have since wondered at the fact that I feel more …relieved, than sad, although I will always miss him.
    But your article so aptly describes his life for the past few years, the dwindling choices he had to live through and that I could watch but only partly help with. I did what I could, but the loss was his so much more than mine.
    I now realize that I knew in my heart how difficult this slow decline was for him, and I’m very glad he no longer has this pain.
    I will share this with my family, and truly appreciate the person-ality that you have shared.
    Thank you.

  • Lenore

    The Spoon Theory is great. I have been looking for something written to give to friends and family who don’t understand what I go through. I would like to know how to get Christine’s permission to make copies to give them. I have suffered from Fibromyalgia, Chronic Fatigue, and a long list of of other maladies since the early ’80s. They have cost me a career, a marriage, and contributed to many stressful situations. I try to keep active and do things I enjoy, but often at the expense of ‘losing’ several days while I recover from the pain and fatigue.

  • Dear christine

    I just love your story! It explains being sick in a way that makes people around us try, at least, to imagine what our life is like. This is just wonderful written, I almost started crying 🙂

    My struggle in life is M.S. And as you know it’s not that easy to tell people what you’re going through, when all they see is you looking perfectly healthy in their eyes.

    If it’s ok with you I would love to print this article on my blog, to give people some insight and understanding. Please respond by mail if you give me permission to do so.

    Thank you ♥

  • Liz

    This is fantastic. A friend linked me to this article, and I hope you don’t mind if I steal your spoon analogy and use it to help some people understand my daughter’s type 1 diabetes and the constant drain it presents on not only her, but on me and my husband as her caretakers.

  • Thank you for the new outlook on chronic pain. I have always used the file cabinet theory and how many files there are in it. Maybe this one will get some of the people who figure we are are just lazy and don’t want to work the reality of our lives. I would love to work, my days would be shorter, I would be productive and feel better about myself. There is no relief for my pain as the Dr.s think that giving pain relief (not total but enough to to take the pain level from 0 to 8 is something I should be happy about.) Let them live my life

  • Shea

    I love this story it truely helps. I was recently diagnosed with fibromyalgia and I can say that all of my friends just say and think I am lazy because I can not do many or even simple things like I used to. And I was a single mother for 10 years so I learned to always show my tough face, and its hard for me to try and explain to them how I feel each and every day. Fortunate for me somehow my boss and husband understand and those are the two people you really need on your side. My boss because I come in late most days and have to be out alot, or leave early. And my husband because when he sees me struggling with simple things like even folding clothes he put sme to bed and takes care of it. He has been a great sport and helper throughout this especially since when we first met I had no medical problems at all, and now it seems I can’t even have one good day.
    I appreciate this story and will use it to try and explain things to my friends. And thanks for letting me vent a little.

  • Thank you for this powerful way of giving a glimmer of understanding to friends and family that look on from the outside. making it concrete, through a handful of spoons is so simple and direct. brilliance! yes, that’s just one layer of the experience and doesn’t convey the actual pain itself, but what the pain causes by stripping us of freedom, of easy connecting with others, spontaneity and play – all that is felt in the spoon theory…

  • Tova

    Alistair:
    I think you got it. Running out of spoons may be a good analogy but its not like running out of breath, or hope, or energy to talk or turn over or get dressed, or being unable to be the person you used to be or want to be, or running out of friends who care, or running out of hugs because no one is left to understand. Being left without spoons is not being left without love. Cronic illness sometimes robs us of everything. And if it hasn’t happened yet you see it coming and know you can’t stop it. So you just hurt, alone.

  • Thank you very much for this explanation of a #spoonie. I have seen this hashtag on twitter, but had no idea what it meant. Although, I do not have Lupus, I do have other invisible chronic illnesses. How wonderful this is not only to explain to others but for you to rethink the day; it enables you to plan out the day using a tangible item; It is almost a cognitive retraining of the “to-do” list. I love it! Thanks very much! Hugs!
    1 spoon was used? 🙂

  • Alistair

    I don’t get it. You must have some wonderful friends. Because, if I did this spoon thing with the people I know… I live in England, ok, and… No, seriously, this spoon thing, if I did this…

    Honestly. Not kidding. Spoons? Really. OK you’re American I assume. And have nice friends.

    Erm… No. If I did this. I would just get made fun of seriously.

    Spoons? Is this supposed to convey a point to a healthy person? Are you for real? No.

    Try putting them in a vice so their chest is being crushed, feed them caffeine intravenously so they have anxiety they can’t control, electricute them so they have electric shock sensations (symptom), an give them something that causes not just fatigue but bone chilling keel over feel like you’re gonna die fatigue. And give them all of this for a number of years and don’t stop it to ask them how they feel, keep it, while you ask them how they feel.

  • Julianne Tx

    This a wonderful story. I believe all of my family and friends should read this so they understand how I feel as well. I do not have lupis, But I have had a massive heart attck & two neck surgery’s & one back sugery in 1 1/2 years. So I know all about pain. The simple task of brushing my hair was so painful & hard to do. Going to the bathroom was the worst an so on & so on. Christine I wish you well in everything that you do. Hopefullly you get to stock pile your spoons. Thanks Julie

  • angela smyth

    Oh dear – this is my life !!! I have M.S. and fibromyalgia and a torn vertebrae and 3 prolapsed discs in back and so many allergies to modern life that I have almost died on many occasions.
    How sick am I of being told I don’t look sick? Never mind that it has taken me 2 DAYS NOT to look sick !!!
    I like Leonie’s reference to the knives -that resonates with me – my New Year’s resolution was not to audibly groan every time I moved and I think that lasted about 4 hours.
    I have struggled for years to make family and friends understand how difficult everyday life is and failed miserably most of the time. Probably because chronically sick people say they are fine when they are anything but fine – nobody wants to be a moaner all the time and nobody wants to listen to a moaner all the time anyway so it is a vicious circle of wanting empathy and understanding but not wanting to complain too much or too often, if at all.
    I find myself silently screaming much of the time……….please help me without me having to ask or feeling like I am a burden……..please understand that I can’t do much of anything and I want to do everything you can do…………I miss being a real person………….I am a shadow, living in the shadows and I miss the sun…………I make little jokes while I cry inside…………
    I dare not remember the person I used to be because she died and I miss her.

  • Adam C

    My beautiful wife, Cristy, and I have been together for 11 years and married for 8 (just celebrated last week). She has had Fibromyalgia since age 15, long before I knew her. It was difficult for me initially to get past the lack of a physical sign of illness. I found your website on Facebook from a friend – and Cristy and I read it together. I was brought to tears – first by shame for not having understood when we first met, and then in empathy for Cristy. While I’ve witnessed the pain of Fibro – and even helped nurse her after Chiari brain surgery – I have NO IDEA of the pain, discomfort, depression, sadness, et al that she feels every single day! Your explanation of chronic pain and how it impacts a person’s daily life are fantastic. Adding humor helps too. We particularly enjoyed the article on Brain Fog. Anyway – thanks for doing what you do and spreading the word! We will do our part to share the Spoon Theory with others here in the Chicagoland area.

  • Rowan

    That so perfectly explains everything we go through. Thank you, I can now explain to my friends and family what we go through!

  • Christine, thank you for this. I’ve read it twice and am going to commit it to memory … It is such a creative, practical and compassionate way to understand the whole-person experience of chronic illness and/or the effects of grave injury.

    I couldn’t help but think “spooning” when I first saw the words “The Spoon Theory.” I’ve always loved to “spoon” — cuddle up that close to a loved one … and I know that reciprocal loving touch is one of the finest medicines that Life offers us.

    I’ve been very ill for nearly three years … and I have definitely lost some abilities that once were ordinary, almost thoughtless parts of every day. I don’t know at this point how much vitality and function I will recover … but no matter what, I am standing as a merciful sentinel to the core of myself.

    Bless you,

    Jaliya

  • Norma

    This explanation is wonderful. I have had Fibromyalgia & Chronic Fatigue Syndrome for over forty years and have always felt that people just don’t seem to understand what I’m going through. The response I hear more than any other is “are you still sick?”. They just don’t get it that a chronic pain condition is not something you get over like a cold.

    Yes, some days are not as bad as other days, yes some days are worse than others and yes you have to juggle things. I jokingly say to my husband “okay I feel like I can only do two things today, would you prefer I take a shower or make dinner. But as they say “many a true word is spoken in jest”.

    I love the Spoon Theory. I’m going to tell it to my friends and family, thank you so much for your analogy.

    ((((( Gentle Hugs )))))
    Norma

  • Leonie GH

    I think we need additional cutlery, knives for the amount of pain we carry with us through the day. A bad day begins with a lot of knives & few spoons & gets more knives collected as the spoons are lost. A good day, lots of spoons & not a knife anywhere 🙂

  • Heather Schimke

    I am glad you wrote this because it has made me see what my Daughter Danni has to go through every day with her Rheinhardts Lupis. At the moment she is in hospital again because her haemoglobin dropped to below 20 and needed a blood transfusion. she is still in hospital so they can try to find out what coursed this problem. I hope they can fast. If you have Lupis, I am sorry. I would not wish that disease on any one. I would like to get a copy of your story so she can see how you explained it to people who do not know or how it makes you feel. Danni is going to be 40 in November and she has had ups and downs with it for over 20 years with no cure in sight. Thank you. Heather Schimke (Australia.

  • Bailey

    I know exactally what you mean. It’s new to me. I read this and cried and thank you for putting to words what I try to express. This will help me and my friends.

    Thank you.

  • Steffi

    I have a question, I can not seem to find the answer to. I do Not have Lupus, but I love the The spoon Theory as I have a chronic pain condition.

    I would love to hand the spoon theory to my friends and family for them to understand what I go through, however I do not have Lupus. Will it still have the same impact on people even though I do not have the illness.

    Thanks so much

  • Terri Lynn

    I’m a 23 yr old girl from upstate NY. I’ve had discoid lupus for a couple yrs now and just found out that it is now in my blood stream. My sister is suffering with systematic lupus. She is only 38 and is totally disabled. It is very scary to see her like this and to know there is a chance I will end up like that. Your spoon theory sounds like something my sister would say. But, it’s so easy to give up and let the lupus take over your whole life. I’m not experincing pain yet, thankfully. The sores, hair loss and bald spots are very embarrassing. I am and have tried so many different meds. I don’t understand why they dont have a better understanding of this disease. Hope they find a way to make us all better!!
    ~Terri Lynn – Ithaca, NY

  • Christine,

    Thank you for this. It’s a wonderful story, in addition to being the best “easy” explanation I’ve ever heard of for describing what it’s like to live with a chronic illness or chronic pain.

    I’ve recently had several occasions to use the Spoon Theory to explain what it’s like to live with chronic pelvic pain (secondary to endometriosis and interstitial cystitis). I linked to this page in my blog yesterday, in a response post to the No Baggage Challenge.

    I’d love to talk to you and Stephanie sometime about cross-linking and possibly doing some co-authoring. Feel free to email me or check out TravelsWithPain.com!

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