The Spoon Theory~ A Way Of Explaining

A theory I live by, a theory that saves my life~ It’s also an incredible and thoughtful way to express to people in your world/life what having a chronic illness is like. They’ll get it much easier by relating to spoons of all things~

Thank you to the author of this piece Christine. You have helped me save so many relationships with people who just did not get it. If you have read this before Bravo, you are doing as much as you can to communicate what your life, days are like.

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 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 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 than others; some days I have more spoons than 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”.

© 2003 by Christine Miserandino Butyoudontlooksick.com

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87 thoughts on “The Spoon Theory~ A Way Of Explaining

  1. Incredible…what a heartfelt, moving theory…five of my siblings have myotonic dystrophy which means that both their voluntary and involuntary organs will eventually shut down…life expectancy is to 50 something or if stubborn to 63–like my sister and brother who recently died from it. They both lost their ability to speak, then to swallow, then to breathe…Yes…spoons! Both lived life as fully as they could–and were so noble in how they approached life–YOU remind me of their courage! Thank you for sharing this very important theory!

    • Oh how you brought tears to my eyes. Both for your loving words about your siblings and because of your thoughts about this theory.

      I am always in awe of what others lives and histories are.Having been a person with overlapping disease and conditions I have lived in chronic pain for 30 yrs. I am a grateful person who lives with her pain. But it took me some time to get to where your siblings were in living life o the fullest.
      It is those warriors like your beloved brother and sister which paved the road for others to witness the miracles of living life to its fullest no matter what the universe may bestow upon us. I am in awe of this.

      Thank you kind person for taking the time to comment, but more important to me is that you shared a part of you. A very precious part of who you are and where you have been, please accept my gentle hug today for you have survived this horrific life altering changes as well; and yet you still have this loving gentle smile about you. I can feel it in your words. It is people like you that living life to its fullest so worthy. Thank you so very much.~ BB

    • My Dear Tersia~ I am so sorry we did not get this to you, and Vic especially sooner. I think it would have powered her even more than the powerful woman she is ,Sorry I cannot say was… her spirit is very much felt today still by this community. By me. You both have had such a visceral impact on us.

      Much deep fondness & gentle hugs to you sweetie, the spoon theory might be an effective way for you to express to those who are concerned about you. You are dealing with a life altering experience of magnitude, you do it your way Tersia, and let them count spoons.

  2. Thanks for this hun!

    Until today I have never known what Lupus was or what it did.

    The spoons analogy is perfect.

    I have Paranoid Schizophrenia, but that’s nothing compared to what you are going through!!! 😦

    Love and hugs always!

    Prenin.

    • Hello Prenin,
      How lovely to have you visit, It is a good analogy that I think transfers into lives that are dealing with anything chronic.
      Those in our lives who do not know what we live can have a better idea of what a day in the life is like.

      I will not pretend taht I understand what the ramifications are with your illness, but I do think you could apply the spoon theory too.

      What do you think? Share please if you would. 😉

      Thank you so much for your visit & your thoughtful & kind comment, I hope you;ll come back again~ BB

    • Dear sbcallahan,
      It always touches my heart when someone who lives I have to finds something that resonates within when reading my blog.
      Having a lifestyle altered through no choice of our own is impossible to explain to those who just do not know.

      You create a smile on my face and joy in my heart that you found this, an it was something you could take away with you,

      Please come back anytime, You are most welcome, I find by trying to live with positive sensibilities keeps me in my A game.
      I hope this finds you doing well ~ BB

    • Tomas please forgive for a lack of reply. Until I came to reply to another I had not known your comment was here,. I have had a severe issue with my email alerts and am afraid I tend to miss things when using the reader page.

      Thank you so much for your comment and so happy you were able o take something away from this post;

      • I know what you mean! I always go now to the “Notifications” (upper left corner of your screen where you see the big WordPress “W” – then you get the Notifications and it shows me new comments. 😉

    • Why thank you Bette.This piece, The Spoon Theory has been a life saver for me. I am able if in flare-up revamp my lifestyle accordingly.

      Thank you so much for coming by, and taking the time to comment. ~ BB

  3. This is such a perfect explanation for two reasons:
    1. it makes me understand what someone goes through who has to deal with something like lupus (my roommate from second year university has it)
    2. It will make me not waste my spoons and happy that I do not have to count them out every day
    I found this extremely effective and am going to copy it to remind me how lucky I am and understand those not as lucky
    Thanks so much for sharing this — and thank you for having to follow me again–if that had not happened, I may not have found this post–because when you wrote it I was not very involved in the blog world yet
    (hugs) to you – LouAnn

  4. I sent this to my family – for I have had an autoimmune diseases similar to lupus for years. And I have never been able to adequately explain it. You did a magnificent job and I appreciate it.

    • I am so happy that you found The spoons. I so wish that I could take credit for writing the theory but alas I can take credit only for posting it.
      It has helped me over the last 12 years explain to my family and loved ones. Wish I’d had it the first 16. Some still will never get it but that is on them Not because I did not try.
      It’s an amazing theory that crosses all chronic illnesses.

      Best of wishes to you. It’s all about coping now is it not?

      • Yes definitely..I used to tell people that I compare it to sharing a property line with a neighbor I really don’t like – I can’t change the trees or the fence, I have to live with it. But I don’t have to let it define me, and I sure as heck don’t have to like it. 🙂

        • No, we are not deined by our illness unless that is a choice. I like you choose to let it be. I have come to a point of acceptance, it is what it is. I don’t like it but I choose to play the Glad Game and look at the positive.

          My advocating for children who have no voice has been part of that choice. Children have been my passion since I was a child, I know go figure, eh? This was a dream Bring Them Home, one which I could never take on alone for obvious reasons. a good friend saw that, took our combined passion and we created BTH. It’s my passion, it’s my distraction.
          I save spoons everyday so that I may admin to the blog and have back up. It’s what I’d rather be defined by, not my illness.

          Thank you so much for sharing with me. I believe that is just as important as well. To have a community you can share and vent with. I welcome you to mine.

          Take care ~ BB

  5. I followed a link from a Twitter post and here I am.
    As a severe chronic pain sufferer of 12 years I’ve never been able to get a true visual for family and friends. Thanks to you I do now.

    • Hello Rona, I’m so happy that you found your way here. I too have been living with C/pain & Fatigue for 28 yrs. I have resorted to the Spoon Theory in a hearbeat when some who wants to get does not.
      It’s so easy to understand.
      Thanks and I hope you’ll come back ~ BB

  6. Reblogged this on livingandstudyingwithME and commented:
    I’ve heard reference to this explanation before and instinctively had a sense of what must be involved. But reading this in full made me cry. It is so true. Those of us who go through this every day live in a different world to everyone else. If you want to know what I face everyday when I get up then have a read of this post. I hope it helps all those out there struggling on everyday and inspires all you healthy people to do something amazing today.

  7. I’ve found this story to be one of the most effective ways of explaining my fibromyalgia. I’m thrilled you shared it! I’ve been wanting to share this story on my own blog, so I posted a link to this post on my blog because I can’t improve on it. http://bit.ly/T00B09
    Thanks for stopping by my blog so I could discover yours.

  8. Pingback: The Spoon Theory | Barracuda Mom

  9. I’ve found this story to be one of the most effective ways of explaining my fibromyalgia. I’m thrilled you shared it!

    • Thanks so much Finnella for taking the time to share with me how this post touched you. I too have Fibromyalgia along with other overlapping conditions that have the same symptomology and this spoke to me many years ago when I first found it. I’ve sent and printed many copies off to family and friends who just could not get it any other way. This got through to them mercifully.

      Please come back and visit, us Fibro – Folks must stick together~ BB

  10. Reblogged this on Oh What a Pain in the… and commented:
    I think this is a wonderful and simple explanation for what it is like to be in Chronic Pain. I have often used a similar example. Sometimes I tell my husband that, unlike most people., I have a finite amount of energy in a day. Sometimes the choice is between physical therapy or walking the dog, cooking or cleaning, dinner out or working on the computer.
    I like the message Christine puts forth!
    I think her message is very powerful and I believe that “all this” that I have been going through has taught me to appreciate my spoons! I am thankful for the little things.

  11. Pingback: The Spoon Theory www.butyoudontlooksick.com you just have to read this! | Dreamz Happen Quiltz

  12. Reblogged this on Mushy Cloud and commented:
    I read this for the first time a couple of years ago and am so glad it has landed in my inbox again today. Thank you Judith – I hope you don’t mind me reblogging this to help spread the word!

    • I’m so glad you found this and I apologize for not replying sooner. A month later is so not cool. I’m embarrassed. Spoon stash was has been hard to divide and conquer this past month, blogging falls by the way side. Not even sure how or why I missed your kind comment. I’m just glad I finally found it.
      I hope things are well and hope you come back~

  13. Hello, milady. Thank you so much for making this post a part of your blog. I have reblogged it on my site, and I know my readers are going to understand so much from this one post. I can’t tell you how much I appreciate this, and you. Thanks!

    • I’m so behind in comments I’m this behind! Thanks dear friend for your kind thoughts and for sharing them with me. Despite my lateness in reading them.
      I know this piece is relative for so many of us, depending on what we are dealing with, this theory still works so well.

  14. Pingback: The Spoon Theory~ A Way Of Explaining | Diabetic Redemption

  15. Reblogged this on Diabetic Redemption and commented:
    This is a post from my friend, Lady Barefoot Baroness, reblogged by her from the original author, Christine. I don’t have Christine’s link, but Lady B.B. is found at https://tonij.wordpress.com/2012/02/25/1343/. This theory is the clearest, cleanest, most all-inclusive explanation of living with a chronic disease that I have ever read or heard. My thanks to both of these amazing women for making “The Spoon Theory” a new part of my repertoire for explaining Type I Diabetes.

    • You are so welcome Judith. Christine’s information that I have is this:
      Christine Miserandino Butyoudontlooksick.com

      Its been about 7 yrs since I was last in touch, right during the time of being turned on to her piece. Its such an awesome way to express what it’s like for us. I know that those who are close to me appreciate it for what it is They have no clue if they have not lived it. This is the est way I have found to give them a clue.

  16. What an excellent way to explain ones limitations brought on by many different ailments. I see this so often with my husband anymore and now I can better understand his inability to be his old self later in the day. I’ll have to help him slow down during the day and conserve a few spoons for the evening if we have an event to attend. Thanks for sharing my Lady~

    • I don’t know why I had not sent this to you sooner. I know that your beloved R is in need of a stash of spoons.
      Its such an easy way to explain something that unless you have lived it its impossible to imagine.

  17. Pingback: Paying To Play ~ Being Intentional! | Lady Barefoot Baroness

  18. Absolutely amazing analogy! I have recently been diagnosed with Multiple Sclerosis, and this is EXACTLY what my day is like. I can only do so much. Some days I have a dozen spoons, other days I only have 3 or 4. But I most certainly no long have the infinite amount I used to have during the days before MS struck.

    Thank you SO much for sharing this story. It really does help explain to others what it is like to live with a disease that limits everything you do, every day, from here until the end.

    • My sweet blogger thank you for trusting my post to share your recent diagnosis. I am really sorry. My close friend has been navigating her life since the mid 1970;s with MS, I know what you speak of. What I deal with pales in comparison.

      I am grateful that this piece spoke to you and will speak for you. I highly suggest printing out some hard copies to keep around. They will come in handy these first few years. People always believe they are sensitive and compassionate, and they do mean to be. Its just not possible unless you know. Yes?

      My prayers are including you now.~

  19. This is a good analogy. And for me, there is always the “something” that could have you winding up with no spoons at the drop of a hat and you have no idea why………… I don’t know if all chronic illnesses are the same in that regard or not.

    I spent all my spoons this morning. Yesterday, I was out by lunch, spent time in bed; got up to do a specific task and then came back home and went back to bed before bedtime. I am lucky enough to have banked some spoons when I did that, but then needed to crash this afternoon after my spendy morning. I may be paying back spoons for a while….. 🙂

    • Sounds so much like my day. My week. If I had nothing else to do, no other commitments than I”d be fine with my spoon stash. But as I spend one to get my underwear on, another to brush and braid my hair, and on and on just trying to get dressed,…sheesh! A shower takes a handful of spoons before I even start my day.
      I so relate.

  20. Wow, this is great! I had never thought of any of my health problems quite like this. I have 7 stents and Diabetes, still getting use to both of them, even after having heart problems since I was 36, which was long before I had stents placed in my body. I think I tried to convey the idea in this article to my doctor about a year ago. I couldn’t express it the way I needed to. I had some other not-so-nice thoughts about being sick too, but will only say it was the “pity party” coming out. (I don’t mean as in I would hurt myself kind of pity party, but the sick of having a hard life and why me AGAIN pity party. The one where every one else seems to just fly through life with nothing happening to them. I DO NOT want people to get sick either! Heheheh Just sometimes things seem to go so easily for others, I’d like that for once in my own life.) Thanks for posting this article. It is GREAT!

    • OMGosh girl and I thought my issues were enough to warrant the need of a spoon stash.
      Sweetie you would never know these things from your beautiful blog. I am blown away. I apparently missed many posts.

      I understand he pity party for one thing. I think until acceptance comes anger and pity are all par of he process.No worthy of beating our selves up over it that is for sure.
      Is just awesome that we can build these kinds of supports for one another. Welcome to my small world friend!

      • I don’t think mine are any worse than yours! I haven’t really posted much about it on my blog. So you haven’t missed a thing. 🙂 I think Lupus sounds much worse, I could be wrong, but I do. Your article just seems to be something I can relate to and it expresses it very well. I don’t really lose spoons during a day, if you will, it is just…hmmmm one more spoon lost over time, as it passes. I hope that makes sense. I don’t have to doll them out cautiously either. I do the same old things every day without much though of the consequences over time. Not like that. I find out things as time passes, like me sitting at the computer all the time, something I KNOW already, but then something happens to make me much more aware of it as a problem for me. Not moving around it not good for me, or anyone. 🙂 I think it is a great article, and I felt myself respond in a way I haven’t for much else! I am so glad you shared it here.

        • Its so interesting to me how when we look at things such s daily life from different perspectives things in own daily lives seem less intense. Its all relative I guess.

          Its obvious from attitudes like yours and mine that we have chosen to live with our illnesses despite the obstacles sometimes in the way. I am not able to fom an accumulative effect on my body as it howls at me then and there when I push the envelope, and I have learned that its not worth pushing beyond my wall. I will pay for it for days to weeks if I do.

          I agree not moving around is the worst. I have to also stretch every morning before I can move around. That may be because of years of being bed bound and a year of physical therapy to get me moving again. Been on both ends of the spectrum from bed-bound t gymnastics and I’d much rather being doing cartwheels.

    • I so love your blog name! How awesome. I’ll be doing cartwheels in my mind to get over to visit.
      Thanks for taking the time to comment. Its an amazingly easy theory and one that as you said even tuned in children get. Bravo to you and your 9yr old for using it.
      I love the image of children that age explaining it to friends. Makes me smile~

You are most welcome to share your thoughts, comments, and/or complaints here. Know though complaints are only handled on the 2nd Tuesday of the week.~ The Management

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