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!

©2010 butyoudontlooksick.com
  • Pamela Lesley Hogg

    I to feel the same as you as this is the first time I have read this & it’s like WOW TOTALLY Amazing !! And also holding back the tears after reading this …..
    Wishing you all the best

  • Pamela Lesley Hogg

    I know how you feel … it’s out if our control but it never takes away the disappointment of not being able to go & do the lovely things with your family & friends , even the most simple of things like going for a ride in the car to a mall to have coffee with them & do a little shopping … I just love retail therapy! !! Lol

  • Pamela Lesley Hogg

    Wow !! This article is amazing !!! I have had Lupus then came fibro & Ceribel lupus then osteoarthritis due to years of being on predispose & the list goes on

  • deb

    I have been living the theory for many years now due to fibro and severe orthopedic issues. Each day I decideprioritize what I have to do and what I might be
    able to do extra if there is some energy left over and if my pain level will tolerate it. People don’t understand when I say I can’t hike the mountains we live in. I can’t walk my dog. I can’t soak in the bathtub cuz my body doesn’t get down into a tub anymore. I can’t dance anymore. I can’t walk in the garden and smell the flowers. I envy those in wheelchairs. They at least can go up and down the isles of a store and go thru the neighborhood for some fresh air. I watch my family and friends walk out the door and leave me behind and that pain is often worse than the physical pain I feel every day. Yet, we wake up every morning and we go on in the hopes that tomorrow will be better.

  • jeannied

    Hi I think that is an amazing story thank you I was recommended it from the foram I belong to on PMR. I am lucky as they thought I had Lupus before being told no its PMR [polymyalgia rhuematica] another nasty immune illness had it for 15 years now and it has caused so many other illnesses nightmare but what a brilliant way of explaining ones illness to others that seem not to understand what we are going through Thank you so much .

  • Cirocco Jones

    Thank you I can finally show my boyfriend what its like for me every day <3 stay sunny

  • Darren Horobets-Farley

    I don’t use this phrase at all normally as it really grates on me but…

    Oh my God!

    I have been suffering with chronic pain every day of my life for 26 years and I have never heard anything as simple as this for explaining it. The first time I read this I cried buckets, thinking “this is me, every day of my life”. The second time I read it I cried and thought “Thank you. You have suddenly opened up my world to everyone”. If I knew you I would gladly spend a spoon and hug you and thank you for this. As soon as I have a spare spoon I will use it to order a poster.

  • Patsy Barrett

    I love my scooter. Well not really but glad I have it.

  • Patsy Barrett

    She is a mentally ill troll.

  • Patsy Barrett

    Goswellen you are a troll. Be gone.

  • Patsy Barrett

    You have written my story. I had three major lumbar fusions in six weeks.

  • Patsy Barrett

    Now I’m thinking you should see a mental health provider.

  • Patsy Barrett

    Thank you Lacey! I was wondering what the problem was.

  • Patsy Barrett

    You still don’t “get’ it.

  • Patsy Barrett

    I have chronic pain. What a wonderful way to be able to explain to family and friends. Thank you so very much!

  • http://fotomama986.tumblr.com/ Lisa Wood

    I have BPD and my sister has Asperger’s…we call your spoons ‘social points’ and I will use this visual the next time someone says they want to understand. Thank you.

  • Pamela K. Cahoon Laub

    Explain so people quit making unreasonable demands or making assumptions about you. People thought I was just lazy or out of shape until I explained what I live with with MS. I don’t tell everyone I meet.

  • Pamela K. Cahoon Laub

    It was frightening to learn I have MS, but also a relief to finally have a diagnosis. Check for a support group in your area. There are medications that help and great resources on line. God bless you.

  • Pamela K. Cahoon Laub

    I have MS, too – as well as other health problems. Maybe using the spoon analogy will help make people more understanding.

  • Pamela K. Cahoon Laub

    Everyone has the same amount of time, but not energy. Many illnesses are debilitating. People with chronic illness don’t just feel tired they often feel extreme fatigue – sometimes just trying to get out of bed and get prepared and dressed for the day feels overwhelming.

  • Pamela K. Cahoon Laub

    Fatigue, neuropathy of the hands and feet, instability, weakness, memory problems … are part of what I endure daily with my MS. I also have a history of strokes and arthritis. People don’t understand hidden illnesses. I do hear “But you don’t look sick.”. I love this analogy. Every week I must plan a schedule so I can get everything necessary done without overdoing it on any one day.

  • Lizsa P

    Wow, that is helpful. My hats off to you and all those affected by chronic pain/illness. I want to go to my fibromyalgia-ridden friend and give her a huge hug!

  • Kagsy

    Brilliant article, excellent explanation ….. anyone with chronic illness will relate to this way of phrasing it…. thank you

  • Esther M. Belliveau

    Mallory.. I may not know YOU .. I may not be close to YOU.. But I certainly do UNDERSTAND YOU!!!

  • Samuel Kirkland Smith

    Thank you Christine! I can definitely relate! I am almost 40. I have been a Type 1 Diabetic for 32 years of my life. I have had many illnesses along the way (pneumonia, shingles, unexplained years of abscesses in my thighs, and other areas of my body) and then the past few years have been wrought with more problems and additional disabilities than I could have ever imagined. I was also diagnosed with depression at 13 and have suffered with that since. I have had several therapists and psychiatrists since along with a misdiagnosed “bipolar disorder” that wasn’t right. I have depression and now an anxiety disorder that I have been on the same medications for the past 15 years that seems to do the trick. 3 years ago, I guess, I had more problems stem into my arms and neck that are actually work related. I herniated a disc in my neck from daily work related tasks doing my duties as an auto mechanic. That herniation compressed my spinal cord to the point there is now scarring in my spinal cord. The 2 vertebrae where the herniation happened ( C6-C7 ) are now fused together with a plate. I have fibromyalgia ( nerve pain ) as a result from the damage there. In both my arms I have had repaired the Carpal Tunnel and Ulnar Nerve paths in my wrists and elbows, also work related. These are all still healing, as per my physicians. During this time I was also having problems walking. Pain in my thighs and calves. I was diagnosed with atherosclerosisatherosclerosis in both legs. The first surgery was 2 years ago. I am going to have my second angioplasty since scar tissue has closed the arteries back up.
    Depression and anxiety have been looming again. Every day poses new challenges that I never had before. I am on medications for all of these things as well as vitamin supplements. A lot of pills probably rattle around in my belly.
    In summary, I understand this theory all too well. I might add that some of those spoons could be sporks. They may have the ability to stab you when you least expect it.
    Thank you Christine.

  • Suzanne LaCour

    What an incredible and accurate explanation. I do not have Lupus (they THINK), but I have 4 auto-immune conditions including one that makes me go blind on a regular basis along with very advanced Fibro AND Meniere’s (which means I cannot keep my balance). My body never stays in homeostasis – if one thing goes wrong, here comes the avalanche! I gave up trying to explain. Most people don’t really want to know – it makes them uncomfortable. You have a great friend there!

  • RoseInShadow

    Everyone has times when they start to run low on spoons. My one criticism of this article is that it doesn’t acknowledge that as much as it could have. That said, the spoon metaphor is a brilliant piece of insight that can hopefully lead to a greater understanding and empathy for other people who we have no idea how many spoons they have. I think most of us could afford to be a little bit more considerate with our silverware.

  • RoseInShadow

    I think you could afford to be a little bit less bitter in your approach. I agree with you, everyone has times that they hemorrhage spoons faster than they can replenish, due to varying circumstances in life, but spending them on negative energy isn’t helping you or your point.

  • RoseInShadow

    In their defense, the way it was phrased in the article did make it seem like healthy people have near infinite “spoons”. Granted, perfectly healthy people probably have somewhere closer to 40 “spoons” to spend on an average day, but people can find themselves running low on “spoons” regardless of whether or not they have a chronic illness. Sometimes, people spend a lot more “spoons” than they can really afford to, due to various situations people find themselves in. And I know that this is meant to draw attention to people with illnesses specifically, and it does lend a deeper sense of understanding in that regard, but it wouldn’t have hurt the article to say that not-ill people sometimes need to count their “spoons” too.

  • Lacey Lazey Smith

    Goswellen has something against people who suffer from chronic illness, especially fibromyalgia. S/he is just trying to get more people to click on the ‘discussion’ link which is mostly just fibro-bashing. Every person who joins the ‘discussion’ just feeds the trolls. Not worth the time.

  • bne

    She didn’t talk about how one really stressful situation such a rude or confrontational person can suddenly rob you of all your spoons! I have depression, anxiety and an inflamatory bowel disease (I’m still waiting on a more specific diagnosis). One careless act can wipe me out for days!

  • Mallory

    Thank you so much for this article. I have chronic fatigue, endometriosis, chronic pain, and nobody understands me at all.

  • Pam

    sorry about huge photo below my comment was trying to do it as my profile! lol

  • Pam Purdy

    I was recently diagnosed with SLE Lupus Nephritis (systemic lupus with kidney involvement.) I was so excited to read about your spoon theory. It is very difficult to explain to people about our condition. I am so happy you are trying to live your life as best as you are able and realize that life is such a precious gift. I faced the same trouble of trying to slow down and prioritizing what was important for the day. Thankfully I had help from God for healing, support from family and friends and lots of persistent riding buddies who got me out riding again! God bless you and thank you again for sharing your story.

  • Soozapalooza

    I am waiting for an Mir to determine if I have ms….I have lived with chronic pain for 20 years and to be honest, I’m hoping I get a diagnosis, so at least I’ll know. I completely understand your frustration. I feel the same. And hearing that “but you lok good” just frustrates us even more. I try to look good, but most of the time I am crying on the inside

  • jrsp

    You’ve missed the point completely.

  • jrsp

    I’ve had chronic back pain for 12 years. My children and grandchildren understand in a superficial way but they don’t really understand the daily struggle. I don’t complain, but often I’m absent from events and functions. I’m nowhere near the Grammie I envisioned myself being, and along with that comes grief and guilt. There are so many layers to chronic pain and illness that are almost unfathomable to people who haven’t experienced it themselves.

  • Dawn

    Love your explanation. Yes when people say you don’t look sick I take this as a compliment because I have always said that I REUSE TO LOOK SICK. No matter what I
    Can’t do that day. I wake up and I Thank God for another day. And I fix my hair and put on a little makeup. As for me personally I do this because it’s my way of not giving in to my sickness. What is so hard for me is too have plans with family or friends and have to cancel or head back home. Or having to turn my husband down when I REALY wanted to go to the car show or races with him. And not being able to fix my family a big dinner like I used too. And not being able to go to church because of being so weak. For at least the past six years I have not been able to enjoy working in my flower beds. I miss that so much. I could go on and on about the things that I miss.
    But I will not give up because I’m trusting God for his healing. I know this is true because he has healed me be for. And he will do it again. So I try to focus on that.
    The thing that is the most hardest for me is the alone feeling that is felt when everyone else is out enjoying life and taking it for granted. Not even being mindful and thankful
    Of being able to do the things that some of us would love to be able to do.
    They don’t mean to take it for granted they just don’t understand. I thank God everyday
    For every task that he helps me too accomplish no matter how anal it may seem too others. A very good way to help ease the pain physically and mentally is too look around you. Think about what others may be going through. There is always someone else worse off then me who is in need of prayers and understanding. My main goal is this….. I know God has a plan for me. I have always been a caregiver I raised three girls
    And became very very ill with Lupus when they were young And fibromyalgia on top of that. But God gave me the strength to get through it with the help of my husband. And some great friends. And six years ago he healed me of lupus. I’m still suffering from fibromyalgia but I know without a doubt that in God’s Times I’m going to be healed of this too. And what ever else is going on with me. Your explanation of the spoons hit it right on the nail head and I Thank you for that because it gives so much understanding as too how we feel. They may not know this but I get a lot of my strength from my sister because she has got to be the strongest person I have ever known in my life.
    Because the tragedy that she is going through is no joke the worst thing that could ever happen to anyone And I’m not joking one bit. And my brother and all his sickness just keeps pushing on as so many do. And that’s what inspired me and gets me through all this. So much to be thankful for. My husband, my three beautiful daughter
    Two of witch are twins. And my three son in laws also. My brothers and sister,
    My cousin Jenny who I also think of as my sister. And all my wonderful Friend’s.
    And my church family who I know are praying for my healing everyday.
    My prayer is too just be able to help others in need to just be healthy enough to be able to do that. And too be able to have my annual cookout for my family and friends without it being so hard for me to do. To be able to do the task that so many take for granted like shopping and dishes and things like that. I’m sorry to go on but the understanding of the spoon theroy has inspired me so much.
    The most important thing is too everyday thank God for all that we have and read our Bibles and trust in his healing power. And most of all refuse too look sick and don’t give up. Thank God for the good and thank him for the bad. And trust him.
    And please know I’m praying for each and every one of you.
    God Bless .

  • Lacey Lazey Smith

    And why does she want people to know she’s unhealthy? Maybe so she doesn’t keep having to explain why she needs to be close to a bathroom?

  • Lacey Lazey Smith

    I thought it was a pretty good explanation of how accomplishing even small tasks can be taxing to someone with a chronic illness. It did not say anywhere that people without chronic illnesses have unlimited time or energy, it’s a given that there are only 24 hours in a day and that the average person is not Superman.

  • Lacey Lazey Smith

    It doesn’t look like a discussion, just looks like Fibromyalgia sufferer bashing. I didn’t realize that was a thing. Learn something new everyday, or just found another aspect on how hateful people can be.

  • http://discombobula.blogspot.com/ Sue

    It doesn’t insinuate that at all. You really do not understand what she is saying if that’s all you’ve come away with. But yes, I think everyone is exhausted in this crumbling world. And I also think that’s why people who are well really cannot understand how much worse it can be when you’re chronically ill. Like, freakily worse. Perhaps that’s why we don’t get the help we need

  • Sneeky

    this is fantastic! ! it sums up living whith a chronic illness so well. Every person everywhere needs to read this article!! Maybe then these invisible illnesses will be more understood by those with a bottomless spoon draw