The Spoon Theory - Awesome Story

Discussion in 'Fibromyalgia Main Forum' started by cosmo220, Apr 3, 2005.

  1. cosmo220

    cosmo220 New Member

    Hi all, this was posted on another pain board and I thought it so appropriate for many of us. The website where this story comes from is (edited to remove URL per rules)
    The Spoon Theory

    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.

    As I went to take some of my medicine with a snack as I usually did, she watched me this time, with a 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 choice, 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 a 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".

  2. jyl

    jyl Member

    I found that site just last week and loved the story and might buy one of those shirts!
    Thanks for sharing this with others!
  3. sydneygirl

    sydneygirl New Member

    Hi Cosmo220,

    I enjoyed ever word of that story and it has made an immediate difference in how I want to approach myself and others. Fantastic find!!

    I will never look at a SPOON the same way again!

    Cheers from Australia
  4. cosmo220

    cosmo220 New Member

    Hi Sydney,

    I often tried to explain to others even before being diagnosed with CFS/FM a few weeks ago that I only have so much energy and I have to pick and choose what I do each day. I got lot's of glazed looks with "uh-huh's". So then I would further try to explain that I have to prioritize each minute of each hour that I can stay awake.
    More "uh-huhs". Problem was that each explanation was costing me energy and no one was getting it!

    I think this story explains it in a better way than I ever could, so now I'm e-mailing it to people! LOL :)
  5. sydneygirl

    sydneygirl New Member

    Hi Cosmo220,

    I have only now just begun to make some changes in the way I deal with my family and the needs of all of us. The SPOON story hit a high note, it had a concrete feel about it, a real way of explaining the lack of resources we have in our grasp to try and explain the unexplainable. We need to direct our attention to the areas that keep us going. Maybe similar to making sure our noses are always just above water so we can have enough oxygen to last while we perform the duties of life.

    As you can see, if you have looked, my bio tells you a little about me. I will probably edit it when I am up to it to add more about some of my experiences. Do you have a bio or any details to share?

    I think I had better go to bed now. It is 12:45am, Sydney Australian time. My dear fuzz ball husband is sleeping next to me in the dark except for the TV while I am typing away on my Toshiba Laptop. Talk to you tomorrow. Have a good day and take care.

    ni nights,
  6. NyroFan

    NyroFan New Member

    Good story.
    I have heard of the spoon theory before, but you were more thorough.
  7. Mikie

    Mikie Moderator

    Thanks so much for sharing it with us. What she forgot to mention is that it takes a looooong time, sometimes years, to get to the point where we feel guilty that we have so few spoons to give.

    Once we get to that point, however, we are free to enjoy living in the present because we know that there is not an endless supply of spoons. Perhaps this is the silver lining of having chronic illness. We truly appreciate what it costs to waste our energy on fruitless endeavors. We can derive great pleasure and be proud of doing things which others take for granted.

    Good health is a gift which is wasted on many. I wouldn't wish our illnesses on anyone, but perhaps our illnesses are a gift in disguise in some ways. We have learned that perfection isn't the name of the game. It's learning to live the best possible life one can despite challenges.

    Again, thank you for this.

    Love, Mikie
  8. elliespad

    elliespad Member

    I think of your spoon story as the first 15-20 years of my illness. You might point out that not everyday or every year do you have the same number of spoons to start the day. After a period of years you may find you only have 2 or 3 spoons to start your day, and want to spend some of those spoons in the search to increase your allotted spoons. In the last year, I only have 2 or 3 spoons to start my day. Sadly, personal care is the last to earn the spoons in my life, which leave little else.
  9. JimB

    JimB New Member

    I usually don't know how many spoons I'll get ,
    and they 're not all given at once.

    The uncertainty is certainly not a peaceful feeling or confidence builder.

    When you start something, you better be sure you have enough spoons to finish it, or be able to suddenly put it it all away and get back to homebase to just rest.

    I start out with a few spoons, take a rest -and might get another one or two.
    At some point, (and I never know when) No More spoons are given.

    Borrowing a few spoons (if possible) will cost you so dearly you'll Avoid it like the Plague.

    May the number of your spoons be plentiful enough,
    and ever increasing. Jim : )
  10. Jillian40

    Jillian40 New Member


    I sure do appreciate you finding and sharing this with all of us.

    It is the best of the srories that I've read so far. I don't want to shame others for not understanding, I don't want to have them pity me, I just want them to be able to compare their energy and abilities to that of a person with reduced abilities. This story truly does this.

    Hope your day is fulfilling today,
  11. metrogirl

    metrogirl New Member

    because finally I have read something that has been so difficult to put into words. Explaining my cfs to someone is like a medical report (boring & depressing). The spoon theory puts this into a human context of life & not just about the medical conditions that go along with it. Im a newbie to this site so Im going to bump this for all the other cfs newbies (took me some time to reach this message). Hope thats ok with all you regulars? So thanks cosmo220.
    Love to you all,
    Vikki[This Message was Edited on 04/05/2005]
  12. metrogirl

    metrogirl New Member

    Im bumping this its so great (old news I know, but great).
  13. 30lori

    30lori New Member

    tks a great,lori
  14. Rosiebud

    Rosiebud New Member

    story. Thanks
  15. cosmo220

    cosmo220 New Member

    I am happy that many of you have found the story helpful. I too am new to the diagnosis of fibro/cfs and never knew how to explain my limited resources of energy to my family when they wanted to do something at the last minute. I would have to say that I couldn't because I used up all my energy already. That's all I knew, that's how I felt but I could never explain it. I just knew I was done for the day. If hubby wanted to do something on a Sat morinig, say lots of errands, I would have to sit and plan the best way to do them so that I would have enough energy to complete the errands with him. "No we can't go out to breakfast and then go to two stores, but we can eat McDonalds on the way to one store" would be a typical Saturday morning conversation. It was stupid to have to talk like this, but it is how I have to live.

    As a few of you have pointed out, this story is very basic and simplistic and does not take into account that fact that we never really know how many spoons we are given each day, or even when they will run out unexpectedly. Each spoon may not hold the same amount of energy it did the day before or by some miracle each spoon may hold more energy.

    Those details aside, I still think that this story is a great tool for those who are new to the diseases, have trouble explaining to others how one has to live with our diseases, have family that just does not seem to understand how we are trying to use our energy effectively each day or minute, or for many diagnosed patients just trying to understand themselves how to conquer a single day at a time.

    No problem bumping this for others to see.....anyone who can gain from even a sentence of the Spoon story deserves to see it! Thanks for bumping!!

  16. shootingstar

    shootingstar New Member

    Thanks for this post.
  17. cosmo220

    cosmo220 New Member

    Glad this has resurfaced since I originally posted it. It's a great reminder to me as well because I had decided in the last year that I didn't want to "have" fibro. Just had a visit with a new rheumy who confirmed the fibro diagnosis and has taught me how to accept it. This story will help me re-explain it to family and friends.
  18. Malen

    Malen New Member

    A friend of mine with Type 2 diabetes posted the link to that on her personal journal a while back.

    I now carry a copy with me to have friends read. It's the best thing I've found to help someone understand what we go through on a daily basis

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