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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  • Clifton James Cummings

    I have fibromyalgia, lupus, congestive heart failure, epilepsy, and a few other “invisible” diseases, and The Spoon Theory has helped me a lot. We are excellent actors. Anyone can act sick, but be well. Being sick, but acting as if you were well is a challenge and a half to accomplish! Thanks for this site.

  • Harry Hamer

    Wow! Quora brought me here. Your story gives me exactly what I’ve been looking for lately – a metaphor for describing and dealing with my own genetic challenge. Thanks & love from Amsterdam

  • Rose Maxwell

    I want to share my testimony to the world. My marriage has been a blessing until few months ago when my life almost get sucked. A strange woman took my husband’s love away from me. He left me and our 3 kids to this lady. I was in shocked because i know my husband still loves me. I tried all i could to get him back but the more i tried the more he went far away from me. All my effort yielded nothing. I was almost giving up and wanted to file for a divorce. Then, I went to many spell casters but they all failed taking my money away. I lived in pains for 3 good months without any plan of getting out of this mess. Till I met an old school friend who show me to Dr Uzoya on [email protected], a spell witch who then restore the happiness to my family and my life. His spell worked so fast that I could not even believe it. He’s great for as much as I can tell. Am still grateful to him till tomorrow for his spell works. My husband came back with apologies all for the spell powers of Dr Uzoya. You can also contact him on his email for all your relationship or marital problems; [email protected]. thanks to you all

  • gillian noel

    Have been suffering from (LUPUS) disease for the past four years and had constant pain, especially in my knees. During the first year,I had faith in God that i would be healed someday.This disease started circulating all over my body and i have been taking treatment from my doctor, few weeks ago i came on search on the internet if i could get any information concerning the prevention of this disease, on my search i saw a testimony of someone who has been healed from (HERPES VIRUS) by this Man Dr Osemudiamen and she also gave the email address of this man and advise we should contact him for any sickness that he would be of help, so i wrote to Dr.Osemudiamen telling him about my (LUPUS) he told me not to worry that i was going to be cured!! hmm i never believed it,well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as the Dr assured me that i have cured,after some time i went to my doctor to confirmed if i have be finally healed behold it was TRUE, So friends my advise is if you have such sickness or any other at all you can email: [email protected] or call +2347038110398. He told me that he also help people to cure HERPES VIRUS and also help people to bring their ex lover back. contact dr Osemudiamen if you have any problem. email: [email protected]

  • PATRIA WIDMER

    Good article, Thanks!

  • [email protected]

    Best I can tell consulting AMA Complete medical Encyclopedia 2003 is there are three types:Lupus erythematosus, discoid or DLE (mildest, causing a red rash); Lupus erythematosus, systematic or SLE (which can be severe, but is managed by antimalarial medication and other treatments), and Lupus pernio (purple rash caused by sarcoidosis). All three are autoimmune diseases, which means the body is attacking itself. Taking my SLE to bed. Good night.

  • corvinusos

    I wanted to ask, because I can’t seem to find any article on this topic which is clear enough for me to apprehend – how many different kinds of lupus are there? What are the differences? What are they exactly?

  • K Jump

    I have chemical sensitivities now too, caused by allergy indused asthma… which I think was made worse do to all the pharmaceutical crap they had me on for a chronic spinal condition. I already don’t know what I am able to do day to day for my original chronic sickness, and in the last 2 years get very ill when I go out and often have to go to the hospital from the reactions and asthma attacks from the allergies and chemical sensitivities. 🙁 It sucks majorly. Especially since I have been on every medication you can think of for these illnesses and nothing worked, probably close to 20 medications all together and nothing helped. On the plus side I am now a medical cannabis patient and I am finally starting to get some relief. I am finding what helps me for pain, for the first time in over 10 years I am finding some relief. I am even finding some improvement with my new found asthma and for the first time in 2 years feel like I can breathe… most of the time. I still have to wear a special allergen and chemical mask when I go out called the respero techno which I have used for almost a year. It had been the only thing that has allowed me to go out in public, it helps a lot but there are still lots of places I just can’t be, even with the mask. It is heartbreaking alot of the time especially if your friends or family don’t really understand what you go through day to day and criticize you for not doing more. It is definitely difficult not to punish yourself because of your illness.

  • Jessica

    I’ve used the term spoonie a number of times but never knew the origin. This is the perfect way to describe my “imaginary illness” thank you for sharing

  • Megan

    This is simple yet beautiful and on point. I’m going to share this with my family and friends who still have a hard time understanding what my chronic “imaginary” illness means. Thank you for sharing.

  • Angel

    This is perfect. Everyone in my life has to read this. I have Rheumatoid Arthritis and I am a spoonie.

  • Karen Begeal

    There is some great info on the Inspire site. My grandson who is 4 has classic. His skin tears so easy and everything gets infected and it seams to be getting worse. I feel for you good luck

  • Sarah

    That is a neat quote! Thanks for sharing.

  • Anna Wales

    That sounds so debilitating. I am so sorry that you have to live with that. I don’t have fibromyalgia. My conditions cause ongoing present symptoms that flare up and get worse every so often. Some days are ok and others are terrible, so for me it is hard to know what the day will bring or what consequence something might have on my body.

  • Anna Wales

    That sounds like a terribly hard illness to live with. Especially in today’s society. And you’re so right, grieving past goals is extremely difficult. The only thing I have found to help with that is to do as you said, set and achieve new, realistic goals. I heard a quote the other day that seems to fit this situation, “The pessimist looks down and hits his head on the ground. The optimist looks up toward the sky and loses his footing. The realist looks straight foward and adjusts his path”. I hope that you continue to keep your head straight toward the path and adjust accordingly.

  • Sarah

    I have Multiple Chemical Sensitivity – MCS. I have been to top doctors in the field and there is no cure…avoidance of all chemicals is key. THAT in near impossible in this world of preservatives, chemicals, GMO foods, etc. So the ‘happy balance’ of each day that I wake is my ultimate goal. Most days I do pretty well….learning to STOP pushing myself and to rest and take care of myself will continue to be a lifelong struggle as we live in such a productivity driven world. Blessings to you Anna in your journey. I also had to learn to grieve the loss of many of my goals and dreams and then focus on what new goals and dreams fit within my new restrictions. That, too, is a daily process and journey and not a destination. I have had to learn to ‘live’ each moment of the journey. Quite a different perspective most days.

  • Anna Wales

    That comment just described so much of my life! Lol. Thank you so much for your support and understanding. I hope that you too will be able to find a happy balance or maybe even one day find a treatment that helps alleviate the symptoms so that you may not have to search and contemplate that balance (high hopes, I know lol)

  • Carlund Williams

    I don’t know much about Lupus but I do know with fibromyalgia that it gets worse over time with most people. I’ve had it over 25 years and as the years have gone by it has just gotten worse to if I use hardly any spoons at all that’s great for me but I also have lots of back problems too. 2 back surgeries, 1 neck surgery and I’ve needed both for years again and keep putting it off. If you have fibromyalgia, I don’t know if you’ve seen the article where there are 6 degrees of fibro. #1 is where you just start off hurting but you can still go and do many things without it bothering you too much and then it describes 2, 3, 4, 5, as getting worse and then # 6 is where you are mostly bed bound, house bound,no house cleaning much at all. I’m there and it’s bad. Hope yall don’t get that bad

  • Sarah Sears

    My condition is such that many days are trial and error even after 3 – 5 years of pacing and trying to ‘figure it out’ and even with in a day it can be trial and error from hour to hour. It is hard to know what is ‘worth it’ and what isn’t. I know that some things I deem ‘worth it’ before the spoon drain often after the fact in the midst of the exhaustion and other symptoms it may not have been. But then I feel like what is the point of ‘just existing’ to save spoons vs. using my spoons to ‘live’??? Just know that you are not alone in your struggle to find balance and that you will have days of hope and days of weariness from the battle.

  • Anna Wales

    Totally agree with that. I normally don’t have any problem with not doing the things that I know are going to be too hard to handle. I think my issue is defining what could be too much, and when. As you said, one task could be easy one day and difficult the next. The hard part for me usually is, deciding how hard of a task it may be and deciding if it’s worth the consequence, if I choose to pursue it. For example, I’ve been drained more than usual for the past couple of weeks, and my birthday was a few days ago. It was difficult for me to decide if celebrating was going to be worth it or not. I didn’t know if I’d regret not doing it, or if I went, if it would take such a toll on me, that I’d regret that. We ended up going to a slow pace Halloween “ghost walk”, and since I didn’t feel well, it wasn’t much fun. But I think it’ll be trial and error for me when making those decisions in the future.

  • Sarah

    Anna, I agree with Barbara some things are more draining. In my situation, say unloading the dishwasher may not cost me as much one day as another. It depends on what is already ‘taxing’ my system just what and how much it will take to put me into overload. It is quite frustrating to live such a daily unknown but you will learn to pace yourself.