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!

©2010 butyoudontlooksick.com
  • http://rabbitsandfuzz.blogspot.ca/ Shadowydreamer

    Cut off your arm. Don’t worry, it’ll regrow if you really want it to.

  • Renata F. Barcelos

    This has got to be the most amazing article I’ve read in a long time. My RSI in both arms (shoulders, elbows and wrists) is getting worse by the day and I have to choose the little I can do each day. I definitely can’t do all, some days I can’t do anything (with my arms, at least) and some days I barely can do much, but I can cope, I can manage. Just that people don’t understand and I feel like being constantly judged, like I’m exaggerating or even lying. I’ll try to explain with this theory from now on. Maybe I can find more understanding.

  • Patricia

    This is great – may I post this link to my websites? It’s autism related, but the spoon theory REALLY works well to describe how hard it can be to function. Thanks!

  • Queen Mab of the Unseelie

    Thank you SO much for posting this. My mother had rheumatoid arthritis for half of her life (30+ years), she died at the age of 61. The Spoon Theory has come closest to explaining my mother’s day, every day, until she died in 2009.

  • I.M. P. Incorrect

    This really helps. I was in a car accident when I was about 15 that completely damaged my spine. Luckily I am able to walk, but live my life taking meds for pain, as well as things for anxiety stemming from the accident. Due to all of the meds I take, I also have to take fiber supplements because meds do some work to your system that completely ruin many other things.

    I have a set schedule and routine I need to follow. If my schedule gets thrown off, well, I have a really bad couple of days. Due to everything, my energy levels aren’t where they should be. There are many things that I would love to do, and there are some things that I will do, knowing that it will ruin my schedule, but if I don’t I feel that I run the risk of ruining my relationship. Dealing with the physical consequences is worth it though, just to keep my relationship strong.

    I love that I found this though, as I think that I can better explain my situation to my partner. I know she tries to be understanding, but I don’t think she understands the true extent of what I go through on a daily basis. I don’t “want” to live this way. I “don’t” want to be this way… but this is just how it is. Thanks to this, I feel that I have a way to explain my situation to her, that brings a much better understanding. At least I hope it does. She has no idea how much it hurts me to have her feel disappointed when I can’t do the things she wants to do. I feel like she thinks I do it on purpose which is not the case.

    Damned if you (where I suffer the physical consequences), Damned if you don’t (where I have an upset girlfriend, which still affects me emotionally) situation.

  • Robin

    And I’ve learned something today. Thank you.

  • Dawn Johnson Kleinsasser

    Amazing explanation. I have EDS & it is difficult to explain our good days, bad days, energy levels, etc. The tears I she’d while reading this were from all the emotions I felt from sadness to relief. I will be ordering several posters, as my daughter also has EDS.

  • John Doe

    “The healthy have the luxury of a life without choices, a gift most people take for granted.”

    This strikes me as a horribly inaccurate comment.

  • Peggy Daigle

    LOVE this!!!!! I’ve had Crohn’s for 38 years and I totally relate. I would take Lomotil for diarrhea for three days before Mardi Gras so I could bring my kids and not have to use a portalet. I was much younger then. HA. Thanks for sharing this wisdom, a fresh explanation is always welcome. God Bless.

  • Moral_Hazard

    Excellent posting. Thank you very much for sharing.

  • MotherGinger

    God bless you. I came up with a cup version of this (just heard of this spoon thing today) a while ago and used it to help my husband understand why I sometimes have to say no, even though I really, really don’t want to. He is a rich blessing to me, and has become even more so now that he understands that I never say no unless I really, really have to, and he never gets upset at it or me for it anymore, just shares my suffering.

  • Louise Schlosser

    Thanks for sharing this. I’ve had 26 years of dealing with my spoon act. I’m a lot better now. Excel for the results from Porphyria. ..Severe neurological issues. I will do my best to rewrite my own spoon story, because everyone I know still judge’s me and has never understood.

  • Sandra Johnson

    I really want to cut and paste this spoon theory on my facebook! I really believe that it will help others to realize what I go though on a daily basis. …. Thank you so much! Love sandrà J

  • Brenda Champion

    I have been diagnosed with Multiple Sclerosis for 26 years now. I was recently told that I have Lupus as well. I have tried so many times, often u.successfully, to describe my “fatigue” . I usually say imagine being so hungry, but not having the energy or strength to feed yourself or chew your food. Many times I get this dumb-founded look… thank you for sharing your explanation!!! I will being trying this one very soon.

  • Cheryl

    You name it, I’ve done it. I did the raw vegan thing as I said, then just vegetarian (eating eggs), I’ve taken supplements and adhered to these things always. I exercised when I could back then, and walked every day. I’ve been to physical therapy and pain management. I’ve learned a lot of ways to manage pain. I have Lupus. I am convinced that there is no cure.

  • http://www.ACIMessentials.com Patricia Robinett

    you have done what for 3 years? can you tell me more about what you have done? i am retired.

  • Cheryl

    I’ve already done that. Is 3 years long enough for it to make a difference? Are you a consultant?

  • http://www.ACIMessentials.com Patricia Robinett

    To read success stories for yourself, you might like to google: lupus raw food

  • jlbn

    Thank you so much for your spoon story! I live with myasthenia gravis, which comes and goes, and a balance disorder that is always there. I “count spoons” and make choices every day but haven’t been able to explain this to friends very well. This will help! Thanks again, so very much.

  • Cheryl

    What are you selling?

  • http://www.ACIMessentials.com Patricia Robinett

    You are reading into what I say cruelty, but it is not mine. There is no cruelty in me. There may be an uncomfortable level of honesty that you are not accustomed to. So let me share what I discovered about bipolar… or whatever it is they call it now…

    Bipolar is a lithium deficiency. We need ALL the minerals for our bodies to work correctly. Many years ago, someone began marketing a pretty, white, sparkly salt containing only two minerals: sodium chloride. After a couple of decades (for mineral deficiencies take a while to show up) people began sporting goiters and so the salt company began putting iodine in their pretty, yet depleted salt. They patted themselves on the back, as if this was a grand humanitarian gesture. They still brag about it on their website. However, there is more to salt than sodium chloride and a little iodine.

    Full-spectrum salt is simply sun-dried seawater and it contains all the minerals that are in the body’s intercellular fluid – and in the same proportion. When we use real salt, celtic salt for instance, we get all the minerals in the periodic table of elements – including lithium. The need for lithium is minuscule, so to use it as a pharmaceutical drug is a touch and go thing, no? The other element that is helpful is cognitive therapy – reality checking. Good book: Feeling Good – The New Mood Therapy by David Burns. Byron Katie is also a big help in that regard: TheWork.com

    I wish you well… perfect health – mental, emotional and physical. You see, that is my wish for everyone… radiant health and lots of good, strong, calm, peaceful ENERGY!

  • Joe

    Haha or maybe it’s the “an apple a day keeps the doctor away!”

  • Anonymous BiPolar-Girl

    It’s people like you that keep me anonymous!

  • Anonymous BiPolar-Girl

    You sound like one of those people who would tell a mom who is grieving over the loss of a child that “they are in a better place.”

    You just don’t get it! It is obvious you don’t live with a chronic illness.Do you really think that people with chronic/incurable illnesses have not tried EVERYTHING possible?

    I think you need to broaden your definition of ‘a success story’ to include those who have a chronic illness that have learned to live a happy, productive life by the best means possible.

    The way you approach giving advice is hurtful and condemning. You would understand this if you stopped looking at yourself and tried to really understand what is being said here.

  • Faylyn

    Love :Love Love Love Love Love Love Love Love this!

  • http://www.enrichedexperiences.com/ Pam Bagley

    I’ve been hypothyroid all my life. Your spoon theory is what I’ve been doing, I just didn’t know how to explain it.

  • Amy Kemp

    Amazing analogy. I am a mother of a special needs child. He is 12, and has a genetic metabolic disorder called Hunter Syndrome. We both have to be very careful as to how we manage our “spoons”!

  • Sherryanne

    Post Polio requires the same sort of spoon management – thank you

  • Lori Powell Ramos

    Just anxiously awaiting her reply so I can let all my clients and friends with HIV know what they have to do to be cured! If only life and medicine was as easy as she proposes. “Just eat these veggies and proteins and be cured!”

  • Joe

    Lori, didn’t patricia make it clear that we are just supposed to “starve them”. Maybe we could just start cutting off extraneous food sources like our arms or legs! They have tons of cells that, clearly, we don’t really need! Lol. Patty is full of shit.

  • homasapiens

    Why should Jay’s standing matter? YOU most certainly are not a medical professional. You’re the one making outrageous claims, not Jay.

  • homasapiens

    Your presumptuousness is astonishing.

  • http://www.momentsofintrospection.com/ Shannon W.

    Thank you for posting this story. It was an excellent way of explaining what those with Lupus go through.

  • aBodyofHope

    I’ve been aware of The Spoon Theory since I became diagnosed with Chronic Pain (CRPS/RSD) at 22 and started collecting diagnoses thereafter. Your invention has been such a help to me and to so many of us “Spoonies.” Your words have really helped unite the illness community through your idea.

    In the second entry of my brand new blog, I wrote about you and your Spoon Theory. You’ve touched so many lives; this is dedicated to you: http://abodyofhope.wordpress.com/2014/08/16/10000-spoons-if-only-why-the-chronically-ill-love-spoons/

  • Lori Powell Ramos

    Viruses are not bugs. They live off of our cells and hide in our lymph tissue. How do you propose we “starve them”?

  • http://www.ACIMessentials.com Patricia Robinett

    Keeping it short, Lori:

    “The germ is nothing; the terrain is everything.” (attributed to Louis Pasteur, at the end of his life).

    I find it odd that we inject viruses into pristine bloodstreams. Seems that must damage the terrain. Unfortunate about all the children with autism and the CDC’s part in that.

    When I lived in SF, neighbors in my apartment building were inundated with cockroaches and ants. I wasn’t. My solution? I just didn’t feed them. You find out what bugs love to eat and you deny it to them – put it in the frig, in a glass jar, etc… If you don’t feed them, they don’t come around. Same thing in the body. Sugar, wheat, soy, pasteurized dairy… bugs you can see… bugs you can’t see… bugs love those things whether in the body or in the kitchen.

    Bugs are everywhere. But in every epidemic or plague there are those who succumb, those who are afflicted but recover, and those who don’t get sick at all. Healthy terrains stay healthy. Weak terrains can be improved so that bugs have no incentive to stay. A healthy body clears itself of all things that are not essential for its function.

    This is a fun read that makes good points about this subject…
    http://www.doctoryourself.com/germs.html

  • Debbie Figueroa

    Thanks you for the story as im reading this im crying and understanding this thanks so much

  • Jenna Arthur-Tomor

    I love this. It is a great way to explain things. I find people telling me im sick all the time like it’s my fault or it’s off putting..they just dont understand. I have CFS and FM as well as other issues and i think people just dont get it. I hope this helps explain.

  • northernlamb

    I have a copy of the Spoon Theory downloaded. Thanks for this.

  • Lori Powell Ramos

    Wonderful, long winded (written) reply, but again I asked for specifics about clearing the body of the virus. Yes there are topical medicines, you refer to them as “creams” to burn the expernal manifestations of the VIRAL infection off. Specifically how does that expell the virus from the body?
    How about a simpler one for you. What about the Chicken Pox virus? How does one clear that virus from the body, if they were unfortunate enough to get them ?
    How about just admitting that holistic, natural treatments can not “heal” everything. Yes, may help alleviate symptoms, but the underlying disease process / pathogens / genetic defects are still there.

  • Alex

    Thank you for the story, maybe now I can understand and help my wife out better who has Lyme disease.

  • siddartha999

    Thank you… Thank You… Thank you…

  • Name

    Post Polio feels the same way

  • YG

    Cancer was cured by a guy named Dr. Gerson. “The Gerson Therapy” was discovered in 1920s. Look it up. However, the government and pharmaceutical companies have way too much to lose to give it up that easily.

  • http://www.ACIMessentials.com Patricia Robinett

    Ok… HPV. My method has been this for many decades now… I pinpoint the problem – and if I don’t have a term for the problem, then I enumerate the symptoms. I used to go to my library of books about healing, which now has pretty much been replaced by the Internet… for which I am DEEPLY grateful. And I just start picking off the symptoms and/or disease – or look for alternatives to pharmaceutical drugs that are known to be helpful.

    When I search the Internet, I look first to “natural healing for…” or “natural food sources of…” and I find articles that support my need. I prefer to “let food be my medicine” so if I can simply add or subtract something from my diet, I will do that. Otherwise, I might find a “supplement’ such as B12 or Vit D3 or MSM – but I rarely go to a concentrate unless all else fails.

    One of the very best websites is GreenMedInfo. Why is it good? It has a huge library of scientific studies that go beyond the borders of the USA – so it provides a wider base to draw from. American scientists are very much under the thumb of vested interests – in other words, if there is not a huge profit to be made, the pharmaceutical industry will not fund the research. There are many well-educated, intelligent, dedicated scientists in other countries and GreenMedInfo has a database of thousands of studies from all over the world, so in the case of HPV, I didn’t have to go much further… http://www.greenmedinfo.com/blog/natural-herbal-hpv-cure-discovered

    There are surely others, but if I had HPV, I would probably start there… and if the cream was not readily available, I’d combine the ingredients myself… can’t go too wrong with such simple, healthy ingredients. And I have herbal sources that I trust, so if I didn’t have the ingredients, I would order them.

    Nature is very kind. Next to every poisonous plant, an antidote grows. So a big hullabaloo occurs when a “cure” is found deep in the Amazon or somewhere equally exotic, but there is always an equivalent in our own back yard.

    What I determined from my study of cancer was that all the treatments that worked were based on something very bitter. Then I realized that we Americans love sugar, salt, hot and spicy, but not bitter. The most ‘bitter’ foods most Americans indulge in are coffee and chocolate – and then they are doctored with lots of sugar and dairy, which nullify the effect of the bitter flavor. So once I caught on, I began to really appreciate the beauty of bitter and I eat my seeds – apple, lemon, grapefruit, pear, etc – with enthusiasm. Laetrile is the bitter flavor that comes in every seed, grain and bean. I wrote an article recently about the politics involved in the medical/ pharmaceutical industry… http://body.patriciarobinett.com/2014/07/12/top-5-deadliest-substances-on-earth/

  • Lori Powell Ramos

    How about HPV for starters?

  • Liz

    Thank you for explaining this for all of us!

  • http://www.ACIMessentials.com Patricia Robinett

    Well, MMSW, it’s nice to meet you. May I ask you what specific viral infections cannot be cleared from the body? Thanks.

  • Medical MSW

    Please then, tell the world what the cure is for viral infections that can not be cleared from the body. You know viruses, those micro-organisms that adapt and mutate so fast that only the strongest survive?