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!

©2015butyoudontlooksick.com
  • Chuck

    My wife has lupus, diagnosed almost ten years ago. Been to all of her appointments and different treatments. Only now after reading this do I truly understand her day to day struggles. It all makes so much more sense now. I am saddened by my ignorance and know how the best friend felt. … Thank you as my wife is my best friend. I’m going to go hug her now as she is currently resting collecting her spoons for tomorrow.

  • Ariana

    Thank you for writing such an accurate depiction of what it is like to live with chronic illness. I have suffered for 7 years with a chronic neurological disorder that makes me unable to focus my eyes for too long, stay awake, keep my balance, etc. It is so easy for friends to abandon you along the way.

  • emd04

    no.

  • Gerry Buck

    I was diagnosed with severe osteoarthritis in 1995 [was a truck driver for almost 25 years] and it was difficult to just get up and move around. In 2000, I was diagnosed with type 2 diabetes with diabetic peripheral neuropathy [feet & hands] I got a lot of hard looks from people when I parked in the handicap spot, some even said you don’t need to park there, there’s nothing wrong with you. By the time I got into the store, my hips were on fire & I needed an Amigo. More looks and harsh words. I have since developed a hard skin.
    Yeah, I hate this. Before going anywhere I have to plan out what I need to do, and hope my hips and knees will let me. I am developing bone spurs on both knees.
    But, by the grace of God, I survive each excursion and day.

  • Mary lou

    Thank you Christine. I have OCD and it is so difficult to explain to family and friends what it takes to just get out of bed sometimes. God bless you for your courage and insights.

  • Lisa Mullin

    This just speaks to me I have a rare genetic form of COPD called Alfa 1 AntiTrypsin deficiency. Every day is different for me it is so hard to explain to others why I can’t keep up so I use this. I also am involved with a non profit that helps other people with other rare diseases. I am to give a short talk and would love to use this spoon theory to help the caregivers that attend understand what their loved one have to cope with every day.

  • darlalynne

    Tracia-yes focusing on positives, and remembering to halt our negative self talk is very important. And I agree both meditation and nearly everything we try that gets us away from the ‘it’ is a good step. I use gardening and watching movies and even though I will pay later in other ways if I am not careful I enjoy being able to paint a room or make ceramics. Glad you have a supportive spouse that is a huge bonus. Take care

  • Alice P.

    You sound just like me. I also have arthritis so I have pain and exhaustion.

  • Jan

    Thanks for sharing. My daughter has MS, several years ago when she was still able to walk, but having a good day, she parked in the handicapped parking place. When she got out a man yelled at her for taking up a place when she obviously did not need to use one. She ask me what she should have said to him, told her she did not owe him an explanation, but if you wanted to say something just tell him that today is a good day, but that some days you can hardly get out of bed.

  • TexJess

    Hi Caitlyn, Sorry to hear about your sister. It’s really great that you are here learning more about chronic illness. There is a fantastic resource for those of us with this disease called Hashimoto’s 411. It’s going to be a tough road, but your sister is lucky to have you as a support system.

  • Lois Buchanan

    This is the best explanation of what lupus ‘feels’ like! and I love the use of the spoons as I have always loved to cook and if I invite people to dinner I explain that I used a lot of spoons today, but I saved the best for last, to spend time with them!

  • Youngfighter

    I’m currently 19 and I’ve had Rheumatoid arthritis since I was 13. Explaining this to my friends when they believe only older generations get arthritis was hugely difficult to start with, it got to the point where I look healthy so I stopped tell friends. However, reaching the age where everyone I know started drinking and I couldn’t due to medication, I would get questioned constantly and it got to the point where I wouldn’t go out. Being able to explain my condition using the spoon theory and knowing others have understood better helps so much. I thank you from the bottom of my heart

  • loveit

    I loved reading this. She explains chronic illness very well. I am living with type 2 diabetes, COPD, Asthma, Common Variable Immune Deficiency. I take a lot of medications and most of my family give me “the look.” I feel like I am always having to explain myself. My feelings get hurt a lot due to the questions, comments, and stares.

  • Julie

    Awesome explanation. As with another comment, I have anxiety and depression. Going to work everyday, even though I love the people I work with, takes alot out of me. Come the weekend I don’t want to go out or do anything except recharge my batteries. My friends don;t understand why I never want to do anything.

  • Tracia Baxter Kilwien

    I too feel that the more I refer to or think of myself as ‘having’ (fit any chronic disease here) then I feel depressed and the thought of being ill becomes much of my thinking.

    The more I ignore the ‘tittle’, I have noticed I have longer stretches of happiness despite my diagnosis.

    I have practiced meditation or self hypnosis (as some refer to). While consciously focusing on my body healing with each inhale and exhale I make. I picture my body healing itself in all the wisdom it was created with on my inhale and on my exhale I picture healing going out from myself and to others.

    By nature I am a deeply emotional person who has little patience for injustice and use to be the first person to spend great amounts of energy trying to persuade others and comforting the person at the end of that injustice. Even the thought can drain my energy without ‘doing’ a thing. This kind of conflict as well as so many other sources of conflict drains large quantities of energy if I am not conscience of it. When I become aware of what messages in my head that I am giving my energy to that is when I try to use meditation for rebuilding my energy. I do not always answer the phone or the door when I have little energy to use. It has been the cause of much grief to people who take it personally. I do not choose to explain myself much of the time and at other times I just say I wasn’t feeling well which at times is met with scouring looks of disbelief in their misguided understanding. In some cases I have told people of my diagnosis for them to understand if it’s important enough to them to know me. As the case of the ‘spoon’ analogy given above.

    Notice however the analogy of ‘the spoon’ does not give example of the emotional draining that occurs with much of my energy. Rather it talks mostly of the physical drain (talently very descriptive) as well as the mental drain of making decisions all day for where your energy is spent.

    Kudo’s to the article as it has helped me put words to my own journey with chronic illness. And Kudo’s to you Darlalynne for expressing the negative energy that can be created when focusing on what a chronically ill person DOESN’T have. The blessing in my life is that thoughts that surround my illness can lead to an attitude of being a victim. My “Oh poor me” thinking was taking the life right out of me bit by bit each day.

    My diagnosis was made in 1987 for one set of issues and the other in 2001 for another set of issues so I have wandered through a myriad of self testing to understand myself in what works and what hinders me. At this point I have learned to keep my time limited in situations of negative energy (ironically self loathing is one of those), Keeping mindful of the thoughts that I entertain in my head; Foremost being grateful, “Attitude of gratitude” in times I have no energy for thought I go back to meditation some times it means taking a nap. One analogy is feeding: what I feed my thoughts, what I feed my body and what I feed my spirit helps me from giving up.
    I’m so fortunate that I have a husband that supports me. He never wakes me when I take a nap. He meets people at the door and or phone and tells them I’m napping when I have no energy.
    Having a sense of purpose I think is very undervalued in our culture. My spiritual beliefs have given me the desire and passion to walk in life with the purpose of learning and sharing new ways of loving others.
    We will always have the choice of viewing things as positive because in every situation something positive exists. :)

  • Mandee

    Oops- I forgot to thank you for your wise words….Thank you!

  • Mandee

    Hi Melissa- Sorry you also have Chiari too. Thanks to Mark we now have a golden explanation! Hope your Friday is fabulous!

  • Melissa Brown

    I also have chiari, and this is golden to explain to others!!!

  • merelily

    The most important thing I’ve found, only having been diagnosed about 4 years ago, is do NOT SKIP meds. If you miss a dose, you will pay for it three days later.

  • Amykinz

    Would I be stepping on any toes if I used this to explain mental illnesses to friends and family? You see, I suffer from General Anxiety Disorder and Clinical Depression. Often times, I don’t have the mental stability or the willpower to get up and deal with things that need to be dealt with, or my body aches and too I’m emotionally exhausted and frustrated by these symptoms. Sometimes, I feel like getting up and going to class is all I am able to force myself to do before I need to be alone for an extended period of time to ‘recharge my batteries’, and many people don’t understand this. A lot of people tell me that it’s my attitude, or I NEED to get out more in order to feel better, and Depression and Anxiety really don’t work that way. While my medication does help me handle these issues better, these illnesses are due to, to put it very simply, chemical imbalances in my brain, something I can’t control. I feel like this would help a lot of people understand that while sometimes I would LOVE to go hang out and do something fun, I don’t have the energy to keep calm and socialize with people that I don’t know, or that if something I’m not expecting happens or goes wrong, I can have a panic attack.

    I’ve had people often ask me what it feels like, why I can’t just buck up, “do you really need to take that medication?”, “can’t you just try exercising more?” and, while I do understand that most people are trying to be helpful or supportive, I’ve never really known how to best describe how I feel.

  • Kristen Chrzanowski

    I have used this to explain to my kids & family how I feel & function through the day. Thank you!