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!

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  • http://www.williamassociates.me/ Dr. Susannah

    Perfect!! A metaphor to use with my clients newly diagnosed with a chronic disorder, and words for my own experience with MS (“Why aren’t you wearing make up, Dr. Susannah?” “Because most mornings are a choice between clothes and makeup and I’m pretty sure you prefer not to see me nekkid!”) Great post.

  • Ellen Coss Kennedy

    Exactly what MS feels like. Thank you.

  • Friendly

    Thank you for sharing this. This perfectly explains how my dear friend is feeling. I can be a better friend to her because of your insight.

  • Karen

    I have Ankylosing Spondylitis and the spoon theory is my life right now… thank you for sharing!

  • Eric Mader

    Such a great article – as someone who is dealing with a loved one with significant health issues, this was a perfect way to help people understand!

  • Iskander

    I showed this post to my best friend about 9 months ago, he too asked me what it felt like and this was the best description I could think of. Yesterday was my birthday. He gave me a nice gift, and then had another small package for me.
    It was a set of spoons.
    The fact that he remembered, that he understood, that he knows he can’t help, but would truly want to. Wow. Amazing gift.

  • nervouswriter

    Thank you for posting this. I’ve had in the past an energy draining, life sapping in visible illness myself, but the way you have helped me most is to understand a little more about why some people with some conditions, for example ME, drop the helpful-but-uncool friends in favour of “cooler” friends (sorry, I’m so uncool I don’t know the right words) when things get better for them.

    The friend I’m thinking of, in particular, had ME. When she was at or near her worst, she seemed genuinely pleased to have a friend who would come round, look after her two small children for the afternoon, do things such as hang out the washing, fill and empty the paddling pool, iron etc while she spent most of the time I was there asleep.

    Of course I couldn’t do this often, only on days I wasn’t at work and it wasn’t the weekend, when her husband and other friends and family weren’t there doing the same things.

    I’m happy to say that her condition improved greatly, but as she did so our friendship seemed to fade out. I didn’t want to make demands on her time etc. At one point there were a few words of gratitude – but which felt like a reproach for not doing more. In retrospect they felt like dismissal. Eventually it just faded to Christmas cards. At the time, I wondered if she was offended that I had not done enough for her when she needed me to, or part of the not uncommon dislike/ disapproval for childless and single women after a certain age. I wasn’t brave enough to have a conversation about it, convinced that it would be too upsetting and tiring for her and feeling guilty because she was ill and I, at the time, wasn’t particularly.

    Reading this helped me realise that although she had more “spoons” she still probably didn’t have as many as other people – I don’t think anyone has a limitless supply really – and she didn’t trust that the improved spoons supply would continue. Under those circumstances she would be very wise indeed to use those spoons to spend time with her husband and children, to cultivate friendships with people who were more interesting or mattered to her more, and with whom she had more in common or who would “fit in” more with other friends

    Possibly those words of gratitude were genuine after all, and not a reproach for the time I spent at work and visiting my aging parents in another part of the country. I now realise my inadequacy was probably in what I am, not in what I did or did not do. I simply not interesting enough or matter enough to her, to spend that last spoon on. It makes me hate myself a little less. Thank you.

  • commonsensebeliever

    What a very creative approach using the visual aid of the spoons. I would like to post this on my FB, but decided it would be too upsetting for me to see no comments or cold, lame comments another commenters said they got. I pray encouragement and strength upon each one of you that reads this that is struggling with lifelong medical issues. And I pray sensitivity, empathy and compassion be upon the hearts of those reading these that have friends or/and family members that carry heavy burdens in their life due to medical hardships. The trauma of how those with medical, mental and emotional health issues are neglected, poorly cared for and misunderstood often rivals the exhaustion, pain, handicap and suffering of the injury/illness it’s self………..

  • Red

    This is an amazing analogy. It fits my life perfectly.

    One thing that needs to be added is that most “spoonies” NEVER know how many spoons she/he is going to wake up with every day. It could be 30, or it could be one. Then there are the days when there are none, and making it out of the bedroom to the bathroom is something to celebrate for the rest of the day.

    I have a long list of medical problems that others can’t see. People curse at me for parking in a handicap space – that truly hurts me, so take away a spoon. Not only that, but now I’ve lost the spoons I used to actually get up, dressed, and out to the store. I might not be able to complete whatever shopping I needed to do, and my spoons are gone… just because someone was thoughtless.

    My friends and family sincerely try to help. They try to take me out to eat, invite me to visit them, perk me up… but it’s always something that requires “spoons” on my part. I’m willing to use spoons for things like that, but since I don’t know how many spoons I will have every day, I often have to cancel plans.

    I think the worst thing my friends and family have tried is using “tough love.” They think that if I want something badly enough, I’ll be motivated to do whatever they think is going to help me. Then when that doesn’t work, they get frustrated or even angry. That destroys me. The bottom falls out of any hope I might have. They take ALL my spoons at once, even though their intentions were for the best.

    I’ve been a Spoonie for 20 years, and just discovered it today. Thanks, and I will use the term and the analogy for years to come.

  • Demonhunter13

    I don’t have the pain as do many with these “hidden” conditions, but I totally understand the planning and the limits. It’s even hard for family members to understand this when they see you as strong and capable doing some things and some times, but just don’t get the need to avoid some things and get a time out.

  • #LymeAwareness

    To anyone that has an invisible disease (Lyme Disease)…MAD RESPECT!!! This totally opened my eyes even more to one of my best friends ever. I truly don’t know how you or anyone you know do this

    From what I understand, the treatments are just as aggressive and expensive as cancer. SCARY!!!

    For that very reason–even more so after reading “The Spoon Theory”–I’m trying hard to raise funds for my best friend (without her knowledge) to give to her a little after the start of 2015. I’ve been tweeting all day and am pretty sure Twitter now sees me as spam–mostly because I just started my account today and have already tweeted a little over 20 tweets.

    For those interested/able to help out…Here’s “my” story:
    hope.ly/1FLiiJa

    Thank you in advance!!!

  • http://www.dani-kelley.com/ Dani Kelley

    As someone with chronic body pain, chronic migraines, anxiety, and depression…this is amazingly helpful. Thank you.

  • Janice Trammell Cannon

    Absolutely the best explanation of what it’s like to live with a chronic illness and/or multiple chronic illnesses.

  • Lac

    This is so accurate it’s scary. Thank you so much for this, I am sharing it with everyone I know! They never seem to understand what it’s like having to live with chronic illnesses and I think this might help! Especially with my boyfriend, who’s always seeming to change plans last minute without realising why I get so upset!

  • STRAKER

    you have my sympathies my friend ..I too have arachnoiditis from 4 spinal surgeries following a major car crash I am 48 and have been in pain for 18 years I have intractable pain and the spoons theory is a very fitting description of intractable pain as a letter to a normal {this is another open letter explaining what it like to live with permanent pain}

  • Anuschka

    A friend gave this – I am an Aspie and it is the exact descritption how it is – thank you very much!

  • Nettie

    My theory relates: I look at it like a tank of gasoline( energy), not talking about pain here or mental fog or other side issues. I used to be able to do 5 things intellectually and physically at once so I console myself as I still can do a lot due to my previous organizational “training”. The tank of energy is “never” full now. The best I had in the past 20 years was 80%, but now rarely when doing good usually the tank is 60-70% full . Thank goodness it has been a long time when I was at 10 to 20.%( this happened when the illness first hit and a a few periods(years) since but now it is often 40%. So , yes the spoon theory works to explain, but there is more.

  • Allie

    Elysela, there is a FB share button at the top of the page x

  • RJ

    I am so glad I found this. I’ve been sitting here crying in frustration and fear. Trying to figure out how to deal with the newest thing my illness has thrown at me. It can be so frustrating trying to juggle your “spoons” when you’re surrounded by people who cannot understand.

  • Chelle

    Thank you for sharing this… I can so relate …..I appreciate you sharing this so that others can try and understand what we go through and deal with on a daily (and sometimes hourly) basis.

  • Chelle

    Christie, what a wonderful, thoughtful present …. it shows that they not only understood, that they created something with the ‘symbol’ of a spoon into something concrete *and* helpful!!

  • Elysela

    It says you can’t publish or re-print but can I post the link on my facebook? I have CRPS and have for 11 years now and my friends just don’t get why I don’t want to go out every weekend (because it means I can’t clean, etc) so I would like to share this to help them out :)

  • Rose M Bishop

    This is the best explanation for any debilitating illness. Thank you!

  • http://www.iraqsoft.net/ Students Iraq