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.

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  • Seth

    I forgot to add – I am on the Marshall Protocol (Stage 3) and I have every faith that I will be cured as I am making gradual improvements all the time.

    This is a controversial treatment but safe, and being monitored by the FDA, while formal trials are being planned.
    http://autoimmunityresearch.org/

    Just read the first couple of paragraphs and see what you think. Like some treatments, it may or may not work for you, but there is a load of evidence that people who were once bed-ridden or immobilised with various and multiple conditions are now experiencing good health and having normal active lives with their work, friends and family.

  • Seth

    Thanks for the story. It’s a good description of how I feel too.

    I have sarcoidosis and it includes a lot of the same symptoms (fatigue, lack of concentration, etc) as ME/CFS, as well as splenomegaly and all kinds of aches and pains.

    It’s actually an eye-opener when you realise that people actually find it hard to comprehend what you’re going through.

    Some days I wake up with 1 ‘spoon’ and I realise I’m just going to have one of those days. When you’re used to doing 6 things at once, being a mentally and physically active person and you’re faced with this, you start to learn a few things.

  • Summer

    Thank you so much for sharing this!! Although I don’t have Lupus…I do have Crohn’s disease and it is so frustrating sometimes when people act like it’s no big deal! Thank you for putting into words what it’s like to live with a chronic illness. I am so glad for this analogy. There is a silver lining though…..with a limited amount of spoons, a person quickly figures out what the important things in life are. I am grateful for that and your personal testimony. Thanks again!!

  • I have rheumatoid arthritis and this is the perfect analogy for me to use with people i know. thank you

  • Alana

    Thank you for being so open about what your illness is really like for you. Noone can truly understand who has not experienced limitations, or who has not had someone explain as you have done here. I have fibro, and chronic depression. I can honestly say there is noone whom I know (including my immediate family) who knows what this means to my life. And, unfortunately, they really don’t want to. I know the depression, especially, scares them very much. But I also know that it is not something I have ever been able to properly explain, probably because I never had the chance.

    I would also like to commend your best friend for wanting to know more than just the symptoms of lupus. For wanting to know what it has truly done to your life.

  • Susan

    Thank you, I have Addison’s Disease, Hasimoto’s Disease, Asthma, Gastroparesis and more. This is brilliant, no-one understands because I used to be like Wonderwoman & lived a life of constantly pleasing those around me, to such the extent that this auto-immune nightmare attacked my heart in Feb, because I was still trying to get it done, for my family & work full-time & be a friend to whoever wanted or needed one. This year I couldn’t help many & the phone has stopped ringing & I feel so sad, as I sit here crying, because people just don’t understand, because due to 2 steroids & several other medications, for the rest of my life, I DON”T LOOK SICK! Thank you so much xoxox

  • God Bless You ~ now maybe my friends/family will understand <3

  • Danger Bunnie

    I just finished crying buckets after reading this, namaste, thank you for Being. Thank you for sharing a wonderful way of explaining exactly how it feels. I am now going to share the link with family and friends so that they too can understand.

  • Lorraine

    Thank you for putting it all into perspective.
    How to deal with others I call muggles, when I am told that a
    “service” or a mobility scooter I need to hire when out shopping has been given to some one who is really disabled.
    Then I have walked away(shuffled) weird to try and say
    but I am disabled, I know what and when I need, just because i laugh and love life, doesnt mean i dont have chronic pain 24/7
    your theory gave me a good healthy cry .
    The day at a concert I needed a wheelchair, was told
    “you’re stronging it a bit?
    I will choose who I share with though,I am already viewed with something or the other? 😉 bit weird? I laugh not allowed
    The almost shame of being disabled and a spooner
    No More
    Thank you it’s many spoonerisms for me now 🙂

  • Tara

    After a particularly hard day, I sent a message out on facebook to my friends to see what “regular” people do to feel better when they were down. Most of my friends said a “good hard workout” would do the trick. (Um, sure, let me get right on that.) Then, like a miracle, a true friend sent me a link to your article and said, “Tara, you really need to read this.” In the last six years of my debilitating illness, I have been trying to find a way to convey these exact thoughts. Christine, you have changed my life. Not only am I able to convey to many friends and family what i feel, but I don’t feel so alone. THANK YOU from the bottom of my heart for sharing your experience and for putting into words what MANY of us have tried so desperately to achieve.

  • Kristi

    I saw this reprinted somewhere a few months ago, I’m glad to be here “visiting” the true author (I hope.) I want to thank you for this, ever since I read it I have become a fierce defender of my own spoons, it’s helped me explain to myself my own limitations. I’m not sick with lupus, but I did have a condition that took a lot of energy and focus from my life. With treatment I have been getting better, but I will always need to carefully protect my spoons and prioritize carefully my tasks, or I will get sick again. And, of course, it helps me to understand that there are people out there with fewer spoons than I have each day, and to remember to offer to share my resources when I can.

    Best wishes to you, and again thank you.

  • lili

    Thank you! I have never seen such a wonderful explanation that brings to the core what living with illness is like. I would love permission to use this or parts in a book I’m writing. And when i get my taxes I am sure going to buy some of these posters for groups I attend and as friendship/ I understand gifts, because I too live with a limited number of spoons each day.

    Thank You Christine Miserandino for being courageous enough to let your Love & Light shine brightly in this world, and offer hope to others on their journeys.

    Walk in Peace, not pieces,
    lili

  • shellie Dresbach

    Thanks for this story.I suffer fibromyalgia since at least 2001,that I am aware of.I do suffer almost every day.It takes so much energy just to do any housework.I struggle with going shopping.Ugh it is not like going shopping is not exciting but how I feel afterwards,really makes me wore out and in pain.lately every 6 to 9 hours I feel tired wheither I did anything or not.Just every task seems to get really complicated.I get anxious easily.I cannot even sit through a movie and relax.Well kinda.I fall asleep.I pass out easily when I am just sitting around.Unsure why.Anyhow I do know what you mean by having to plan out every short thing you do.My paternal grandma had lupus.I was told I could have it but I have no butterfly marks or scars ANYWHERE.I just feel so achy all year.Weather changes and the barometric pressure affects me lots.I am so sick of feeling pain.I have a hard time coping with it too.I wish everyone a Merry Christmas&Happy healthy yr

  • ive read the story quite good i have an ilness to BPD but you have to learn how to live with it you have to be a part of society sometimes as hard as that is i live alone but i defnilt make the most of it i am going to start going to theropy soon why cayse i want to get better i want to stand up and be counted whats the point of life if you dont bother to make anything out of it

  • Sheer, inspired, genius!

    Officially I have ME/CFS, in reality, I was struck by lightning in 1983, which bollixed up my CNS, flash-fried my feet and wrecked pretty much every joint, so now I have severe osteo arthritis – and a serious spoon shortage. I may also have ME/CFS – no way of knowing.

    Shame my ex can’t read this, but there you go . . .

  • Vivian Miller

    I just read your story about The Spoons! Girl I know just how you feel! I have Fibromyalgia & there are days I can’t hardley get out of bed! More bad days then good ones! I have so many people that look at me like you say you don’t look sick! But it’s not how I look, it’s how I feel! Hang in there! Thank you for your story!

  • Diannehh

    It’s an amazing story..
    I love the SpoonTheory!
    Maybe I can also use it to explain people how it works for me, I have ADD so it’s a little different.
    But I also have to divide my energy wisely.
    Man.. only a b-day from my friends takes so much energy, especially when there are also people i don’t know, i feel less comfortable; another spoon ;|
    Thanks for sharing your story & wish you all the best and some extra spoons ♥

  • Sandy Lee

    Thanks Christine: I can relate to most of you that have Fibro. I have had this now for about 8 years, the Dr. I was going to has moved and he was not the one that said that I Fibro. I was have aches and pains all the time and could not find out the reason why. She was a Pac Woman. Any way I now go to a Rhu. Dr. but am need to find a Dr. for my other needs. I went to one after the other Dr. and now she has moved. She was wanting me to get lap band surgery because I am over weight. She was on the asumtion that I eat all the time. But with Meds and not being able to do exercises she thought I was doing a lot of snacking is why I was over weight. You know you can not tell a Dr. anything they know it all. So now I have trouble going to Drs. The things the reason I am over weight is that I had surgery for Ovarian Cists when I was 32. That Dr. left an 1/8th of an Ovary so that I could have a child. He also cut a nerve in my belly, so now my belly is big. I also had a another surgey done to my Rt arm SuI can not get rid of it. I use to ride horses and train them. But now I can not do that any more I also in the process of getting my dog training licence to train dogs. So understand this very will. I to would like to keep this and be able to print it out so that other people could understand what we go through each day. I am always being asked how are you day, may be it should be how many spoons you have today. I am not quieter on things that I want to do. I take care of a mother-in-law my husband and a Sister-in-law. So I do not take some of the meds that the R Dr. has giving me. I need to be awake and be functional I can not be sleeping all the time and be in bed. I use a lot of essential oils to help with the pain. It helps some it does not take it totally away, but it does help. I mix my own, Will this is enough about me for now. If I wrote down everything it would be a book before I was done. Thanks again for this good anolog of how things are with us. Sorry for the SP. I am not a good speller.

  • Fancy

    I am 36 years old & have very aggressive Psioratic Arthritis. Not being able to do things like get down on my hands & knees & scrub my floors or like you said, having to choose whether I cook dinner or do the dishes because I just don’t have it in me to do both has been very difficult & the everyday person just doesn’t get it. Thankfully, I’ve been put on meds that have been making a difference & for the first time in a year and a half I’m walking without a cane 🙂

    So I want to thank you for this. When I first read this I cried (and I almost never cry), I’ve never seen an explanation so bang on & it just overwhelmed me. I have made all of my friends read this to try to give them a better understanding of what I & others go through everyday.

  • Guy Fernandez

    I don’t have an illness (well, that depends on who you talk to). My daughter India was diagnosed with Lupus.
    I knew what she was going through, at least I thought I did.
    Now I know. I really, really know.

  • Karen Bickerton

    I am so glad to have been directed to this little explanation. I was diagnosed with FMS more than 15 years ago and have been collecting chronic illnesses ever since. I now have asthma, Crohnes, and require regular iron infusions. I have tried time and again to explain my days to my husband of 25 years, and the day he read this, he got it. He is now using the spoon theory to explain to our wider circle of friends. I told one of my friends today that she always brought spoons with her when she came to visit–she felt that was one of the best compliments she had been paid in a long time!

  • Mel

    thank you for finding words for the the things i can’t explain

  • alana

    when iil first came down w chronic fatigue it was like i had 3 watch batteries worth of energy for the day – which would recharge very slowly.
    what i also like about the spoon theory [even though it is a kodel, not a theory] is that we WORK WITH our spoons and allotments of energy, rather than concentrate on ‘fighting’ a condition. all the time we view illness as something to battle – which is like rejecting ourselves; the illness is a part of our lives usually in response to some other causes.
    it’s great to not be so alone.
    hands hurt now so will go.
    take care spoonies!

  • Thank you Christine. It is hard to explain to loved ones especially kids why their young looking grandma seems fine one moment then crawled up in a bowl in pain and exhasted the next moment. Day fun activities often have to be cut short.
    I live each day thankful if I make it out of bed and at least talk or see my dear family and friends for a bit.

  • Sheila Delgado

    Thank you Christine for this! It brought tears to my eyes. Knowing that there are others out there who understand. (I read all of the comments that have been posted as well.) I am starting my 4th year with Lupus.

    I was an over-achieving workaholic, and now… I consider it an achievement just to make it through the day without a nap!

    You are so right, I have been counting every good thing as a blessing. No matter how small. And I am thankful for so much, that I took for granted before.

    Sending a prayer out…. for one and all… may tomorrow be a good day, and may the day after that, be even better!

    God Bless!

  • I have been getting your post for awhile and I belong to other Fibromyalgia groups but I never knew what the “I am a spoonie” meant. Thank you so much for enlightening me. I also have Hashimoto’s Thyroiditis and the two diseases are often seen together. Just like any auto-immune disease and Fibromyalgia. Things were fine until I hit menopause and while it was fairly easy going through it, it wrecked havoc on my body. After that, all of a sudden, my thyroid went haywire. After being on the correct amount of synthroid, I still felt aches and pains and “felt like I had the FLU without the temperature.” My internist walked out on me while I sobbed and said “there is nothing more I can do for you.” I finally went to a Rheumatologist and they diagnosed Fibromyalgia. I have been on many different auto-immune drugs but now I take Savella. Let me know how to get a spoonie for my profile pic. I write a lot about FIBROMYALGIA and auto immune diseases on my blog. I am finally glad to know what a spoonie is, I am happy to have given you my spoon for tonight.

  • Linda Z

    Well Christine a friend told me about this site and I guess “Yes” I do belong to tell you my story. I went to A Oral Surgeon for just a normal extraction of a tooth that I did everything to try to save, Root Canal, Crown the tooth kept getting infected so I decided to go ahead and get the tooth pulled and then get a implant put in it’s place. I’m married to a hygienist and his father and 2 brothers and one brother -in-law are all Dentist, and I worked as the front desk manager at one of the brother’s office. I would of had one of them extract the tooth but I wanted to be under a local anesthetic, and we do not do that at any of their offices, So on Oct. 3, 2007 I went to the Oral Surgeon had the tooth taken out. Sat in recovery for awhile then I was released and went home very numb. The next day I noticed that my left side of my tongue was still numb with this terrible burning sensation happening also, I could not feel the left side of my tongue when I bit down and I also had no taste buds. So I went to my brother-in-law and asked him to take a look at my stitches and he could find nothing wrong. Well after 3 or 4 days I could not stand the burning anymore, it was like I had a clothes pin pinched on it with someone holding a lighter underneath it, so I called the oral surgeon. I went back to him like 5 times and he kept telling me there was nothing wrong with it. Finally after going back to him a couple more times he asks me if I had been “through the change of life yet” me and my husband looked at each other and I answered No Why, so he proceeds to tell me that women sometime get these sort of symptoms just before menopause which is called Burning Mouth Syndrome. Now u have to remember a good month and half has gone by with me in this pain that I can’t eat ,drink nothing. I was 120lbs when I went to him and I was dropping the pounds like crazy because I just could not chew, eat nothing. I ask him for my records and went to a specialist in Chicago and he diagnosed me that when the Oral Surgeon gave me the injection to numb me he severed “cut my entire ” main left lingual nerve that runs along your jaw on each side of your jaw in half, so I have a nerve that is now just literally flapping around. The specialist sent me to so many people I lost count, I was in the hospital 3 times for dehydration and malnutrition, now it’s like March 2008. I was down to 90lbs, I finally found a pain doctor that was willing to work with me, so he starts me on narcotics, antidepressants, nerve pills, I was a walking Zombie. 3 years have gone by and I pretty much do nothing , I was forced to quit my job because I could not talk and do my job anymore. I have laid on the couch or in bed for the past 3 years sleeping, Before this happened I was a normal healthy person with a very active life style, well that came to a halt on Oct. 3, 2007. I was so sick of taking this poison everyday of my life I finally asked my pain doctor what can be done besides be downing bottles of pain pills every month. He came up with putting a pain pump in with a lead that would continuously flow the medications right to the injury spot. He cut me open right to the left of my belly button and inserted this huge 4×4 metal pump with this tiny plastic tubing for the medications to flow right into the nerves that effect my tongue. I have narcotics in the pump and a strong dose of Marcain, like Novocain flowing 24 ,7. I just had this done last month so it is easing the pain but he still has to get the amount of medication regulated. I still take a handful of pills everyday until he can adjust this pump which we don’t know if it’s going to work or not, I still only weigh about 100lbs and my daily routine has not much changed either. I’m the only person that my pain Doctor knows of, that has had this pain pump done to for this reason, they usually more for back pain, it was his own design and he will be putting me in the med. books. So “Yes” I have lived in Chronic Pain for 3 years and the Oral Surgeon still says he did nothing wrong, actually his answer to my husband who has been around Dentistry all his life is “Well I used a small Needle” . What a stupid thing to say. We use to refer about 50 patients a week to him but not anymore. I Thank The Lord for leading me to my Pain Doctor because everybody in his office and there about 5 pain specialists tells me he is the best in Chicago and I’m very lucky to have him because I wouldn’t of found nobody else to do such a thing. I try to keep my chin up and keep a positive attitude but I will never work again, and I have filed for disability in July but I have heard nothing of an approval yet. The Stupid Oral Surgeon has ruined my life and financially he has ruined me. Thanks for reading the story of the past 3 years of my life. Oh and isn’t it funny I still haven’t gone through the change of life, not in the way he was talking about, Just in another way. Thank You for listening, Linda z

  • Nancy Nicholas

    I have CVID and my niece has Fibromyalgia- Recently we were at a restaurant celebrating a family member’s 21’st birthday.

    There was a ‘stressful’ situation which presented it’s self, with me being the target. My niece and I exchanged looks and both knew I would say nothing! All of a sudden i looked at her and she was gathering the napkin-wrapped silverware, then handed me the bouquet. I continued with mindless chit-chat with the people sitting around me clutching the napkin-wrapped silverware as though it was a lifeline. Only my husband, niece and I knew I was holding the silverware for strength.

    My point is, the spoon theory can be used in SO VERY MANY situations! Awesome analogy in the piece written by Christine Miserandino http://www.butyoudontlooksick.com

  • Lori

    Christine, your analogy comes as a breath of fresh air for someone trying to explain depression (and all of the genuine pain that comes with it), general anxiety disorder, anxiety attacks, agoraphobia, IBS, etc. Like you said, NOBODY can TELL that you’re sick. You don’t LOOK sick. But my son says to me, “You don’t want to do anything anymore!” Little does he realize it’s not the want, it’s the can’t which is so debilitating.
    I wasn’t always like this even in his lifetime (he’s 18) so he doesn’t understand it. He just wants his old mom back. . .and believe me, SO DO I!
    Thanks again for the analogy. My best friend in the world (who lives in MT) has a sister with MS and her mom has major depression. I know she “gets it” but she is soooo good with analogies that I KNOW she’s going to use this one.
    She also has a coworker that was just diagnosed with brain cancer and will probably try to make others in her team understand what he’s going through.
    Your friend has no idea what she sparked. I think it was fate that she asked you that day. I really do.

  • Sandie

    God love those who can put ‘Information for the Healthy” in an understanding and so very accurate medium. Associating a mundane example like a number of spoons to any disability sufferer’s daily abilities gives realism to struggles that are hidden underneath (literally) an otherwise visually functioning person. My particular malady is bipolar; but replace the disability of Lupus with any other, and the descriptions and challenges would probably be highly similiar. I will make sure that my circle has access to this site. Those who care will have a better understanding, not just of my challenges, but of all of us who suffer with the blank stares of the uninformed.

  • Sometimes another person’s perspective can help you through some of the rougher times. I am an Ankylosing Spondylitis, Fibromyalgia and Rheumatoid Arthritis sufferer and I push myself to make it through a day a lot of times, your story lets me know that I am not alone but also that there is a way to make other understand what you’re going through.

    It was the toughest thing to explain to a then 4 year old that he couldn’t hug mommy too tightly because she hurt everywhere that day, or that I couldn’t go running or playing ball with him in the back yard because I was hurting too badly.

    My boys are 21 and 14 now and believe it or not it is still difficult to make them understand things…Maybe I can share this story with them. 🙂

  • Kaeren

    Hi Christine,
    Have just read ur spoon theory and found it facinating. I myself suffer with hypermobility syndrome and have been searching for a while to explain to my family, friends and work colleagues how my condition effects me but soon give up especially when they say “hope your better soon” or “you look well”. Thankyou very much for your wisdom I’m sure this will help others understand my condition a little better. I will now consider myself a spoonie :o) xxxx

  • MinPin

    As someone who’s relied on “The Spoon Theory” for years to describe my life with Arthritis, Degenerative Disk Disease, Addison’s disease, et al., thank you again for writing this. Now that I have Cancer, as well, my “spoons” are even more limited than before; yet this time, they are limited by something people can “understand”. People can “see” and “think” Cancer; they often cannot “see” or “think” Arthritis, or Degenerative Disk Disease, or Addison’s disease, or Osteoporosis, or etc., etc., etc. I will continue to use “The Spoon Theory” to describe my life to people. It may not always work, but parts of me don’t either!

  • mary

    I have fybro (10 years) & this is the best way to explain it. Thank you so much for taking the time to share a spoon with all of us on the site. I will be sharing this to more future sponnies.

  • patsy

    Lovely analogy.
    ps: Kimberlys symptoms sound so familiar – its where I started – check out Mastocytosis.

  • Melissa

    Thank you so much for sharing this! I have long been an advocate for people with disabilities, and my mother’s best friend, who is well in her 60s, has had Lupus for oh so many years. She has been through so many surgeries and hospitalizations, challenges and heartaches, but always has a smile on her face and a smart and funny comment. I know she’s cried many tears, and I know she’s felt so much pain. But she’s an amazing woman, and so are you!

    I want to share this with everyone I know, and I want you to know that I’m a Spoonie Lover! :3

  • Susan

    I wish there was some way to link this story to Facebook…I am trying to educate people about my situation. My health problems are not new and to just start sending printed copies to people would probably seem weird, but if it came up on their feeds or if they could find the link on my profile page they might be more apt to read it…they would not feel put on the spot, if you will. Okay, thanks.

  • Andrea Davis

    Thank you so much for writing this Christine!! For years I have tried to explain lupus and fibromyalgia and how they affect my life to family and friends. This is the most clear and compelling account I have ever read.
    Your sister-in-law, Cari sent it to me. She is such a dear soul and I am now certain that one reason I met her was to finally read your article!
    All you readers take heart, it is much easier to deal with these life changing illnesses when we know that other’s also tread the path and do understand. And thanks to people like Christine who have a talent to put it into words, we can explain it to the other’s in our lives so they have a better understanding of our path, and most hopefully have a greater compassion and tolerance for us as well.
    My heart and prayers are with you all!
    Andrea

  • Thank you Christine. Thank you so much!

  • Bud

    My girlfriend lives with an assortment of various ills including almost constant pain from migraines. Lately the symptoms have grown to include nausea, vertigo and tinnitus. She asked me to read the spoon theory, not that I didn’t already have an intuitive understanding of what she deals with daily.

    To be honest, this proves women are stronger than men. I could not deal with what she has been coping with for years.

    Even so, it is still difficult, although I work at it, to realize that she is sick, when she (or as close as she ever gets to) looks normal but in so much internal pain that it totally prevents her from doing more than lying around.

    The spoon analogy sure is accurate in her case.

  • Barbara Ferrell

    Thank you so much Christine!! I need to share this with my mother…she believes and then doesn’t. I don’t understand. I have been diagnosed with Fibro for about 6 months now, I have been symptomatic since I was 18 yrs. old…now I am 25. I have my first 10 month old daughter now, and it has become VERY hard to make my “spoons” last!! i think your article may actually help me save my “spoons”.
    God bless and gentle hugs to all

  • Heather

    Thanks so much for this….. Finally a way to let ppl know how it feels to be me. I have several psychological issues alone with health issues. But I dont “look” ill, except for all the weight I gained due to medications. Of course that’s been judged as being lazy and a glutton. Ppl come out of the woodwork with all sorts of suggestions and advice. It doesnt work like that. I’m going to send this to all my “friends” and maybe some will have an inkling of what it’s like to be me.

  • Breeanne

    Hi Christine,

    Thank you so much for birthing this analogy. My mom has had severe Rheumatoid Arthritis for fifteen years and I never really understood how her life was until reading this. I shared it with her and she almost cried, both out of empathy for your life and gratitude that I understood somewhat how her illness affects her life.

    I find myself using your spoon theory to explain how my bipolar is doing to my fiance; if I expend too much interpersonal energy at work, I can’t connect with him or interact as I normally would if I had the day off, etc etc. It’s not the same as what you and my mom go through, but he understands how limited my energy is that day when I explain it through spoons.

    Would you mind if I emailed your essay to my dad? He can’t visit websites at work other than his work email site and he won’t read it if I’m there watching. I want him to understand my mom and what she is able to do, but he still hasn’t come ’round after all these years.

    No matter what your answer is, I thank you for helping me understand my mom better. Take care of yourself and I hope tomorrow will contain more spoons than today or the day before!

  • Wow! As a chronic confusion migraine sufferer and a parent of a child with juvenile arthritis, this is a perfect description. This is not only how Isabel has to approach her days but how as a family, we have to make choices. Even the caregivers have a limited amount of spoons. Thanks for sharing!

  • This article is such a blessing! I have recently been diagnosed with fibro. and chronic fatigue and have Celiac and other food intolerances. The last few months have been TOUGH!! I have had symptoms of fibro. etc. for years, but never got a diagnoses until I got strep throat and just could not get well. I am having a hard time learning how to pace. I felt pretty decent yesterday and was more acitve, therefore I don’t feel good at all today. It’s so hard to know when I’m overdoing it!! Thank you for writing this and my prayers are with you:)

  • Rita Fischer

    Thank you so much for sharing this. What a beautiful way to explain to people. My own children know mommy is sick and that it is called RA but don’t understand, really. I would like very much to use this to explain it to them.

  • thank you, there are no words to say, thank you, this is the best thing i have ever read. i have SLE, i was diagnoised about 7 yrs ago now, and there are still times i cannot believe i have lupus. as i look at my “before lupus size 8 pictures” and my “now that i have lupus and is on so many meds i cant keep track picture”. i have had to except these limitations and a lot more i am a widow with 3 children from age 20 down to 12. some days no one understands or they think you are faking it. before they knew it was lupus that i have, all the doctors said i was a hypoco. you know the word, people who think they are sick but are not. now it is very real to them and to me. i have had chemo for my kidneys they leak protein. the list is long, but i just want to say thanks again. i am now going to have my own spoons.

  • Joan

    I have Gastroparesis and would love to share this with my young adult children and sister. They are not on Facebook, could I copy it and e mail it to them. It would be 3 people.

  • Sandra L. Willis

    My mother has lupus, too. And I was diagnosed with Multiple Sclerosis in 1998, because I finally met a nuerologist who took my words seriously.
    Thank you for making it so easy to understand what you have to go through, Christine!

  • Sylvia

    Thank you so much for sharing this story. I have Fibro, and a host of other medical conditions that keep me from living the life I once lived. One of the most frustrating things for me, is that no one really understands how disabling my illness is. Thank you for your analogy, and I am going to share this with my family. Today is a good day, I have a pocket full of spoons.

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