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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  • Freelancebeth

    Finally, an analogy of what a day with a hidden illness looks like. It is just perfect! Thank you. Thank you. Thank you.

  • OMG hunny you hit it right on the nose. I will be sharing this with many….thank you.

  • your spoon theory is brilliant!

  • I was diagnosed w bipolar 6yrs ago and was sliding fast into psychosis. If had talked about spoons then, they woulda chalked it up as crazy. You are right, I know I have so many spoons a day and I have to be really careful what I do with them. If I dont I may hurt/kill myself/others, which would be way worse than not working or having m housework done. There are many times I cant do social activiteis because I woke up 10 spoons short for unexplainable reasons. Its like the day I had b4 or nightmares at night stack up. Or some event will trigger me and all of a sudden the 7 spoons I had have vanished and left daggers insead. All of this is so hard to explain to others. Thank you for spoons
    .

  • Nancy Nicholas

    May I please share your wonderfully written essay with my class of college freshmans?

  • Thank you for painting such an AMAZING word picture of how people with Chronic Illness deal with life every day!! I can’t tell you how much it means to me to help others SEE what I couldn’t say. I am linking to your page to help others. Thank you so much for sharing!

  • Heather

    Thank you. You’ve helped me realize a way to explain my anxiety, depression and sensory processing disorder. It is almost the reverse of Spoons, though.

    You have two baskets – one for each hand. Each activity throughout the day is a rock. How heavy the rock is depends on how much it affects you. A good day ends with you holding one basket easily in one hand. A bad day ends with two baskets that are too heavy to carry. Yet it is exceedingly difficult to ask for help. Although when you find someone you trust to help carry your baskets… it will change your life.

  • Emma

    I have had Juvenile idiopathic arthritis since I was 14 years old, and now as a 20 year old I may also have ankylosing arthritis and psoriasis. I have for as long as I can remember, tried to find a good way to explain to the people around me how it is to live with this. Only a few weeks ago I was at a group meeting with other people with the same diagnose. We discused what bothers us the most with having this illness, and besides the pain and everything, the not being able to be understood is the worst part. I literally lie to people every day when they ask me how i feel. Just so i don’t have to explain why i don’t feel good. People also tend to not understand how i can feel good one minute, but the next minute i have to sit down. Or that when i go home from school i have to sit down and do almost nothing the rest of the day because i’m too tired to do anything more.

    With that said, thank you so much, you have made my life easier.

  • Peter

    I have recently been diagnosed as bipolar. For many years I have argued with doctors saying that I am not ‘just depressed’ and knew that it was something more. I was sick of being given different anti depressants which never worked!

    Eventually, someone listened. I have been put on new medication and regularly see a psychiatrist.

    Life is looking better now but it will still be a struggle.

    The Spoon Theory, which I read for the first time tonight, spells out in so many ways the way my mind has been working for years.

    Hopefully I can show my friends and relatives this and they may understand me more and not just think that I am a moserable bastard with no time for anyone who is stuck in my own thoughts.

  • Gail Ruff

    Christine,

    I’m here squirming in my chair as my pain pill has not kicked in yet and I have run out of spoons at 1:30 p.m. (I just got up at 10:00 a.m.). But I wanted to read your article to the end before going to the couch, as you have described my daily life so eloquintly. Sleep, pain, food, pills, fevers, nausea, surgeries, shots, infusions, steroids, physical therapy, and endless doctors, it’s a constant balancing act, isn’t it? that healthy people could not possibly relate to.

    I thought you would like to know that my Rhuematologist recommended butyoudontlooksick.com to me and described the spoon theory that you wrote about, he so wants to understand. I’m a new fan.

  • Thank you for the reality check. Sobering

  • Vern

    I have been “poking” around your site for a few days and kept seeing this “spoon” thing coming up. I finally decided to read it and now I wish I would have read it the day I first came here.

    I have suffered with chronic pain for over 10 years and still remember the day that my life was stolen from me. I have had 5 failed back surgeries one being a fusion. I have nueropathy in my legs and feet. I have a spinal cord stimulator implanted and take opiods to try to control the pain along with other problems.

    I can only imagine how your friend felt after hearing you describe your life with a hand full of spoons. But it is by far the best explanation of my life I have ever read. I have to deal with my family on a regular basis with them not understanding why I could do something yesterday and I cant do it today. I can hardly wait to sit down with some of them all at the table and explain my life using your theory. The hardest part will be controlling my anger at the fact that they take so many things for granted. Dont get me wrong, they care (some of them) and some of them are always there to tell me I shouldnt be doing something or wont let me do things. But there are also those who have no clue as to how many spoons a simple little task is going to cost me.

    I used to be an avid hunter and fisherman and my father is expecting me to be there for turkey hunting this year as I have been there off and on when I was able. I already know I will not be able to handle it this year and need to show him this before that time comes. He is 89 years old and has had his problems but is still in good enough health and pain free enough to take for granted that he can still do what he wants, when he wants. He is still able to launch a boat, something I havent been able to do for 10 years, he is still able to do any kind of hunting and fishing he wants when he wants to do it. He does not understand that because Iam only 56 years old why I cant just jump on a moments notice and go fishing. He is very hard headed, but it is my prayer that when he reads (or I show him) your spoon theory he will finally get it.

    Thank you so much for sharing this and giving all of us a new opportunity to show people what we live with. There are many days I cant even get washed, dressed and ready to try to start my day until noon. Now maybe they will understand why. I cant thank you enough.

    Wishing you that one pain free moment.

    Vern

  • Claudia Garcia-McIntosh

    Dear Christine,
    ThankyouThankyouThankyou!!! My daughter just sent me a message suggesting this website and your “Spoon theory” story, my husband just finished reading it too, and we cannot thank you enough for putting this into words that “normal” people can understand. I have been dealing with R.A and Fibro for over a decade now, struggling to help friends and family understand,ow thanks to you and Spoons it will be much simpler-I won’t be using up spoons trying to express this anymore! 😉 My daughter has a serious wheat gluten allergy and chronic fatigue, so it has been especially frustrating for her, as a teeneager and now young woman, explaining to her friends that she just can’t participate in activities with them as much as they (and she) would like to.I really love your use of the physical tangible obects to illustrate these points. As a volunteer in an Arthritis fundraiser, I discovered how beneficial it was to be doing something physical and tangible to help fight chronic debilitating illnesss. many gentle X’s and O’s to you!
    Sincerely,
    Claudia

  • I want to thank you. Finally, I have the perfect way for others to understand what I have been going through all my life. I was born with everything below my knees, nearly backwards. I wore orthopedic braces until I was three. My mother said I never slept at night, because that is when I had those danged bars on my backwards shoes. I did everything the doctors told me I would never do, including running, dancing, and ice skating. I finally forced my feet to walk with an outward turn by the time I was 20, and lived for four years, pain free. In 1996, seven days into Boot Camp for the Navy, I was injected in the sciatic nerve and spinal column, by a Corpsman who just didn’t do her job right (I was the only female of six people she injured this way) I immediately knew what she had done, but had to fight the Navy doctors to get them to see I was not faking my injury. I spent three months in boot, then went to sea, where I used my arms to pull me up the stairs, and then carried my son while in pain.
    For the last 11 years, I have been on morphine, just to walk. I have mornings where my husband has either had to dress me, or I wake up paralyzed from the neck, down, and he has to fold me in half, while I scream, to sit me up and force me to my feet. I have a wheelchair that I fight with daily, as I am not one to give in and use it, unless it is just an impossible day.
    My eldest daughter had me to play with on the playground, my son, who I carried with this injury, never has had me on the playground frolicking around and goofing off. I usually just sit in a swing.
    My children know that there are things I cannot do, that I “get lazy” because of the pain My daughter’s boyfriend, who lived with us for two years, got it. He understood, as he had watched his mother die of cervical cancer when he was only 9, just as I had, when my mother contracted breast cancer.
    I have so many who stare at me, usually those in the 40 and under age group, because they cannot SEE the injury causing me pain. Elderly people, they sympathize with me.
    Thank you again, because now, I can show those who doubt, what I am going through, and why I let my house go on certain days. I can show them why, when I say I have been really sick all of a sudden, I cannot make an appointment.
    YOU are a Blessing, and I read this in tears!!!

  • christine

    thank you Lillian for sending me here!!! trying to tell anyone how your day or thought process is makes you seem like a complainer or negative. most people around me think i just seem to get in my own way and should just get over it. they don’t understand the consequence or exhaustion of thinking……..

  • Chrystal

    All I can really say is “THANK YOU”
    I am sure you hear/read this quite frequently but your summary of spoons being our energy/ability is spot on !!!
    I hope that when I relay what you have so eloquently summarized to others that I give you justice for what I have been unable to not only explain to those around me but to myself as well.
    THANK YOU !!!!!
    Xxx C.

  • Anne

    WOW! what an eye/mind opener! my goodness Thanku so much for sharing this!

  • Michelle

    I just came across your web site and love your spoon theory, I have Adult Onset Still’s Disease, a disease that is not very well known. It stems from systemic juvenile arthritis but it only occurs in Adults. Still’s effects not only joints and muscles but also organs. To look at me you would not know anything is wrong, but live with me for a day and you will see that there is definitely something wrong. The “Spoon Theory” is perfect to explain my disease process to those who do not know me well.
    I have had friends who look at me and do not understand why I cannot work any longer, they say you look fine to me. When dealing with WBC in the 60,000 to 70,000 range everyday, and daily fevers up to 104 degrees, it takes its toll on your body. I don’t have an infection, I have Still’s. I even saw a doctor once who from looking at me said I don’t see anything wrong, I told him to draw my lab and maybe he would understand. When he saw my lab it got his attention. Besides the fact that I have lost my stomach, part of my colon, spleen, gallbladder, and appendix to this dreaded disease.
    Sorry for my rant, I get really frustrated when someone does not understand or I feel like they don’t believe me.

  • Lee Schiffel

    Thank you so much! I have fibromyalgia and a severely compromised immune system. Some days just getting to the bathroom and to the kitchen for meds is more than I can bear. But when I look at my sister I realize how easy my life is. She suffers from COPD and every breath she takes is a struggle. Your spoon theory will help me explain my challenge to others but it also made me understand more deeply my sister’s struggle. She cannot afford internet access anymore but I will print and send the spoon theory to her. I will also save to get a poster for her.

    Bless you and may each day be filled with an abundance of spoons. Love & prayers,

    Lee

  • Dee

    I wish my family would read this…

  • JenniferShenker

    Wow..This was very deep.2feel like someone can actually understand how it feels to live n struggle on an everyday basis with the most simple things we hav 2do in life that come so natural 2anyone else without n e thought but yet we hav 2sit n stategically think of how we r goin 2accomplish our next task.In my case,I work @a nursing home so i am tryong to help people do what is so hard 4me to do myself, but i can sincerly empathize with the residents n get a sense of satisfaction from helping other people,I am 30 n hav 5 children ages ranging from 6-14.so that is i guess u can say “5 spoons” right there,but i would prefer “blessings.I do not hav lupus,n cant say that i know much about it but i do hav Fibromyagia n hav heard that the two r somewhat similar.I can relate 2not bein able 2do much w friends n e more,some take offense some dont but its almost like my priorities r pretty obvious after that there is barely n e thing @all left of me 4the day,I could b off of work 4 2days n do absolutely nothin n wake up the next mornin feelin like in my sleep a huge truck came thru my bedroom n ran me over,my entire body is in pain and or stiff,i get neck spasms in my sleep,numness n tingling in my legs n feet n severe migranes everyday 4 eleven yrs.N ofcourse the fatigue n since about the summertime the hairloss I take excedrin only 4the migranes n am takin vitamins,n tryin 2eat healthy,exercise,n of course,put it in Gods hands.n e suggestions,ideas on how 2make things even jus a tad bit more easier???

  • Cheryl Kilroy

    Hi Christine,
    I came upon this (your) page when I was searching the internet
    for more updated info about Scleroderma (Dec 26. 2010).
    I shared your link on my Face Book page. It is hard trying to describe the feelings of anguish, & pain one feels about having an autoimmune disease or other chronic illness. Thank You for
    “The Spoon Theory”! Your story makes it a little easier to describe our trials & tribulations of day to day life of living with a chronic illness.

    ..I myself have been diagnosed in the last 5 1/2 years with:
    Scleroderma, Sjogren’s Syndrome, Raynaud’s Phenomenon,
    Leukocytoclastic Vasculitis, Trigeminal Neuralgia (TN),
    Fatigue, Foot Neuropathy, Acid Reflux, Depression.
    I research all I can about my illness. I am one that wants
    to know all there is to know. I want to know the facts of the:
    “what”?, “where”?, “when”? & “how”? of it all.

    ..How many of us can remember having a “normal” life?
    I remember upon initial diagnosis (2005),
    saying goodbye to my “normal life”.
    But it wasn’t until I purchased the movie
    “For Hope”–a story about Bob Saget’s sister
    having had Scleroderma.
    Watching this movie (Oct 2010) hit me on so many levels.
    It opened the flood gates for me. I had alot of
    anguish that laid dormant for the last 5 1/2 years-
    & let it go the day I watched it. I didn’t realize I still had
    alot of hurt left inside. I finally grieved & let go of my old
    way of life. It is hard to accept the fact that my life will
    never be the same again. Pain is my daily companion.
    I look to God often. You have to have something to believe in.

    ..God Bless you Christine! Keep up the good work!

  • Carole

    Thank you so much Christine for your analogy. I was diagnosed with FM/CFS in 2006 and am currently on a very tought road to a diagnosis of Lyme Disease or whatever is attacking my body. I know there is more to it than FM/CFS.

    I have had many people tell me how good I look and have seen me on my good days and seem to minimize my illness. They don’t see the days or weeks that I can’t function at all and am completely consumed with my symptoms of pain, sleeplessness and feelings of doom. I live my life with “distractions”. Anything I can find to take my mind off my illness and it’s dibilitating effects it has over me. I continue to look for a light that I can concentrate on, to guide me to a better frame of mind. Your story has helped me to realize that I need to spend my spoons in a more effective way. A way that will make me become more proactive in my quest to a better quality of life. Bless you.

  • Lisa Thornton

    This was a remarkable “story” of helping others understand illness. Thank you for sharing your “spoon theory”/ and sharing it with the world. I will refer to it many times I’m sure as this is so eleoquent, but truthful about the life of someone with a severe illness/disability. Thanks for using some spoons to share this and inspire others. Praying God’s richest blessings!

  • Joy

    Thank you so much for your spoon therory. I am trying to have my son to read this so he can know more about lupus, I have fibro,lupus,ddd,djd. Since the 24th of Dec. My back has hurt me with spasms. My feet are starting to hurt when I walk. The left foot hurts sometimes when I put pressure on it , then the right just feels like the top is going to explode.Finally after 13 days of pain I went to my Dr. The day it started on the 24th I went to the store with out my little basket I have on wheels. I thought all I have to carry is just a package of hamburger , my bread and a bottle of my beloved pepsi. I only live about a block from the store by the time I arrived home( have to walk no car) my right arm felt as if it was going to fall off. I made the mistake of reaching for something in the cabinet. I felt something move just to the right of my spine. Dr. thinks I may have fractured disk. I gave in to my son’s mother-in-law to use a walker with a seat from now on when I have to walk far. Thanks again. Sometimes I just have to vent. I have put up hurting for 11 years now. The lupus just a year and half.

  • Thankyou so much for this I think your a marvel. I have Sjogrens and you could of been discribing me in your spoon theory. Iv lost so many friends over the years as I was a stay at homer, so wasnt interesting enough.

    Give yourself a pat on the back, and may your spoons multiply.

  • Buddy

    I am touched by your story as I am a man with Fibromyalgia and Chronic Fatigue Syndrome. I am always tired and I haven’t even turned 40. I simply cannot explain how my life has changed, but you explained it for me. I get ready a day before a big event, and maybe even more by laying out clothes in advance and getting my hair cut. Sometimes its the only way to have any spoons left for a big day. Thank you so much for your story!

    Buddy

  • Bridget

    I must be a ”fork”!

    I say this because Christine says, ”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 give 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”.”

    Although I completely understand her theory and I DO agree that ”everything everyone else does comes so easy but for me it is one hundred little jobs in one”, I find it easier if I don’t ”attack (it) and make a plan like I am strategizing a war.” That is just TOO exhausting!!
    I do ”not think and just do”, one minute at a time. Otherwise, life WOULD be a war…
    And I save my “fork” ‘cuz there’ll be pie eventually!! One minute at a time… one minute at a time…

  • Mariana

    Dearest Christine,

    I’m Brazilian, living in a strange part of Brazil for foreigners. My most dearest auntie has Lupus and for more that I read about it, I never really thought through what my most dearest auntie faces to look every day for her 8 year old son and us, her beloved nieces and nephews. Right now I’m far from her and far from you, of course, but I can only think in give you both my spoons. It bothers me that she’s sick and can’t live fully, but it just hurts me more that she – and you – have to count spoons when I’m able to just ignore them. I’m sorry for that and thank you for opening my eyes. I love you both, really. May São Jorge (Saint George)help you and bless you all!

  • My best friend and I both have ME/CFS. She recommended I read the spoon theory to help me understand the illness even better for myself. It’s helped me to realise I’m not being selfish, nor am I over-reacting when I can’t do things. I still live in terror of having to explain to people I don’t know that I can’t go out at night, that I’m behaving in a different way to them even though I look completely normal. It’s summer and I don’t sleep well in the heat. My health has been out of control for the past 6 weeks. I spent xmas at home by myself as I’d been awake most of the night. I’ve lost my spoons, and have none in reserve. Next week I’ll go and see my Dr to try and rearrange my sleeping meds. If I can get out of this rut, I will promise to remember I have been taking my spoons for granted lately. Now that I’ve lost them, I’m desperate to get them back. In the new year, I need to remember that if I have a good patch where I’m not in too much pain, then that’s all that matters in my small little world and I will be grateful!
    Andrea
    Wellington, New Zealand

  • AusLibby

    Christine
    I’ve only just stumbled across your website and your spoon theory, it is wonderful and I am very grateful you have taken the time to share your story with the world and with me.
    I have Rheumatoid Arthritis and at the moment am struggling with depression your site has certainly added a ray of sunshine to my day.
    I hope you have enjoyed the holiday period and are praised a ridiculous amount each day for creating such a site and environment.
    Sending you cyber hugs.
    Libby
    Brisbane, Australia

  • Lisa Whitten

    Thank you so much for this!!! I have Chronic Lymphocytic Leukemia…while I don’t need treatment at this time, the fatigue that I fight daily is sometimes overwhelming. I was just diagnosed in October 2010…2 days before my baby girls wedding. It was a struggle to make it through that, just because I was so wore out. The the outside world, they just wonder why I don’t get involved with everything like I used to…some days its a struggle just to get out of bed because you are still so exhausted even after a night of sleep!! This really puts into perspective what it is like to use up your “spoons” just to do everyday things!!! But God will bless me and my family, and know that everyday is just another gift from him!

  • Dawn Allbee

    Thank you for giving people with Ehlers-Danlos Syndrome (EDS) a way to explain what they go through. Many with EDS have to make the same kind of choices you do. A lot of them deal with multiple dislocations daily sometimes even during sleep, which means they can’t just jump out of bed either. Chronic pain is also an issue for many.

  • Liza

    I have advanced multiple sclerosis and am wheelchair bound. This is an incredible visual. Thank you for imparting such wisdom.

  • I was born with cerebral palsy, so I understand the “spoon” theory. I am going to turn 16 in 2 weeks. I’ve been made fun of my whole life because people think I’m weird. My friends are excepting but it’s very hard for them to understand why I can’t do certain things. The “spoon” theory helps me “break it down” for them. So, thank you, I feel better knowing there’s an easier & more comprehensible way to explain myself. Maybe one day the “spoon” theory will be used in schools or hospitals or both. Until then thank you for giving me a way to help others understand me.

  • Lyon

    I am not ‘sick.’ I have food allergies. A lot of them. I am also hypoglycemic. On top of this I have severe acid reflux. It is so bad it affects my breathing. None of this shows.

    Going anywhere has to be planned in minute detail so I have enough food to eat that won’t make me ill. Getting stuck or delayed can be disastrous. I carry emergency food in my purse at all times.

    Once, I was hospitalized because of an accident and the ICU did not have food I could eat safely, special arrangements had to be made for every meal I ate there. They sent me home 4 days earlier then planned because of it.

    Eating the wrong food because it’s a hidden ingredient is always a looming concern. Even things I buy regularly change their ingredients at times, so I have to read every label on everything I buy no matter how many times I’ve bought it before.

    At pot-luck gatherings I often end up only being able to eat what I brought.

    Places like McDonald’s and pizza have nothing I can safely eat. At so-called safe eateries, I have to ask about ingredients on anything I order. My husband tells people I’m just a fussy eater. It’s embarrassing. I’d rather not have to be conscious of every single thing I put in my mouth.

    People who invite me to their house for meals often don’t understand that a little bit of of something will affect me a great deal. Too much spice on a safe food will turn it dangerous. I can choke or vomit or be in severe pain just from a mouthful. I may run a fever as high as 105 within hours of eating such a food.

    I don’t know how the spoon theory will help to explain my disability but it gives me hope I can figure out how to explain it better.

  • Christina B.

    Christine,

    Thank you, thank you, thank you….I FINALLY have a way of explaining my daily battles to my family, boyfriend, and close friends. I’m 26 years old, am a direct health care worker, and have Lupus, Raynaud’s Phenomenon, inflammatory disease, suffer from severe migraines, and have a clotting disorder.

    It frustrates me that since I’m “young and healthy” according to my patients I don’t know how they feel. Sometimes I will tell them that I do have chronic illness, have been a patient many times (at the hospital I work at), can empathize with them and if there is anything I can do to make them more comfortable just let me know. Mostly I get the “Yeah right” look and they complain about their stubbed toe (or something as trivial as that) and how much longer is their treatment going to take. I try to give all my patients the best care and be attentive to them (there goes one spoon per patient) since I have been in their position but most don’t appreciate the extra effort I put into their tests and treatment so they won’t feel like another number.

    At least now with The Spoon Theory the people closest to me will have a true understanding of my day to day life and that will give me peace of mind. As I read your story I cried because I put myself in your position and envisioned myself explaining this to all my loved ones and the relief that they will now realize I can’t do everything I want to, or even need to do. It will make it easier to explain to new friends about my illness. Thank you so much.

    Much Love and Health to You,
    Christina

  • Debby La Porte

    What a great analogy. I have MS, and can relate to SO much of what you shared. It IS very difficult to explain to people how it really feels to “live” with an illness or disease, it is not simple, there are so many layers (physical, emotional, spiritual). I can’t tell you how many people have said to me, “but you don’t look like you have MS” or they say, “you look great!” like they were expecting me to look horrible. Again, thank you for sharing your analogy and story! It’s nice to know there are people out there who DO understand the way we feel at times.

    Kindly,
    Debby

  • Christine:

    After 3 years of no diagnosis for my illness (I was tested for Lupus as well) I am now being treated for Stage 3 Lyme Disease. I have never been able to put into words how my energy levels flux and flow from one day to the next. It has taken away my mid-thirties, but I too feel like it has happened for a reason, that I did not appreciate to the fullest what life was offering to me and now I do. I think if anything, we are here to remind “healthier” people that money and material possessions aren’t worth anything – it is the day to day wonders that hold more weight in this world. Being a very independent teacher before this all happened, slowing down and being able to accept help from others was my biggest learning task. I am now collecting disability, but my intention is to not need to for the rest of my life.

    Many Blessings to you.

    Christina

  • Janneke

    This is so helpfull! I have ME/CFS and I also have to make choices all day long.
    People say: you need to get out more. By using the spoon theory I can show them that even getting out is going to cost me at least 1 spoon….

  • Charles Frost

    Wow, My Daughter found your web site and put it on her Face book
    page. My wife lived with her Lupus for 15 years after the doctors listened to her and believed what she was telling them how she was hurting. Keep up the good work in trying to get the information out to people who don’t know about Lupus.

  • Dear Christine, i love your story and i can understand what you our going thru I have scleroderma limited raynauds/ra/ pah diag:in 04then in o8 diag with breast cancer had a double mystic in feb.08 that did me in had to stop working i worked 5 years after my diag; in 04 with alot of pain ppl aways said you dont look sick but it was hard to get thru the days i get thru my bad days and good ones by trying to stay postive it was hard for me to have chronic illness i was so use to being in charge of my life now i can’t even clean the house because i get (SOB)i have to use oxygen all the time now just to go out to the store takes everything i have when i get home i have to go to bed and rest even taking a shower is hard or going to a doctor appt.and then in may 2010 i fell and broke my ankle (L) and my (L)shoulder in 3 places i just finished p.t. in dec. SO I WANT TO SAY TO YOU AND OTHER I FELL YOUR PAIN BUT I DO THINK STAYING POSTIVE ABOUT MY LIFE REALLY HELPS!!! IWishe you all the best in the New Year 2011 and a VERY HAPPY NEW YEAR 2011 (:(:(: xxxx sandy

  • Melony

    I have Crohns’ Disease and this article was like a light bulb going off. People just can’t understand the daily pain you have and the effort it takes to do anything.
    Thanks for this great article.

  • Wendy

    This story made me cry because this is exactly what every day is like for me only i have Fibro instead of Lupus. I have always struggled with how to explain this to people and this is a perfect way! I am going to print it off and show it to one of my Dr’s who just doesn’t understand, maybe it will giver her an insight into what i deal with each day

  • jan

    Dear Christine, Thank you from my heart, I so appreciate what you have done for the rest of us. I’ve had M.E./CFS since I had a virus in 1985. I was an under achiever and a dreamer who always thought she had time to find her lifes ambition. On Friday I was invited to a coffee with a few other ladies. To be frank I didn’t have the energy, but didn’t want to let people down. I relied on a ride which meant that I had 45 mins to use before we met. I walked a bit and sat in the cold with my camera to take my mind off my energy levels. For me, more than an hour of socializing is too much, I could feel my energy draining. When I got home I couldn’t sit and finally gave in and went to bed with a heat pad. I had used up my one spoon. Merry Christmas and Happy Holidays, may the coming year bring renewed health and hope.

  • OMG, THANK YOU!

    I’ve tried for years to explain to family and friends what it’s like to have a chronic illness. I don’t have lupus, but End Stage Renal Disease (ESRD). I’ve been on dialysis since my 31st birthday (literally) and there are days I can’t do more than sit in my recliner to watch tv. I’ve been in college part-time for a year and a half. I need those breaks between semesters!

    Thank you again for posting this. I’m sending it to my mother. She can’t understand why I don’t run upstairs for every little thing, but bring everything downstairs with me so I don’t have to go back up.

    Hugs,
    Beth

  • Mariel

    I have lived this way since 17, and now I am in my 70’s. I have three rare blood diseases. What you say is true. One more thing, though,
    knowing life is like this makes me appreciate what life will be like when I go to Heaven. And when some little bit of Heaven floats into
    my life at an unforeseen moment, I really see it for what it is!

  • Holly

    Sandy Powers, I’m right there with you. My in-laws just left from 5 days at my house and that was just Christmas number one of three. On top of upcoming social gatherings that are difficult to get out of, an unexpected funeral has been thrown in to the mix, and all that implies. I have fibromyalgia and came to this story yet again so I could get a refresher on how to explain to people why I’m not going to make it to their get-together this year. Hang in there!

  • Sandy Powers

    Today was an extremely long day but worth using up all my spoons. I saw family I hardly ever see , ate a good meal and made it to church also. Now, I am paying the price…2:48am wide awake, hurting, unable to sleep because of pain but I am grateful for the day God gave me! All that I still have to do before Christmas is staring me in the face and overwhelming. I don’t know how I will get it all done! Just feeling undone right now. Anyone else out there feeling this way?

  • Dear Christine,

    I am a moderator on Md Junction for the fibromyalgia component. I can’t tell you how many times we refer patients to your site, we tell them to print up the spoon theory and put it under the noses of everyone who doubts them; doctors, parents, spouses, kids, friends, bosses, pastors and therapists….and then they go from there….Once they read your spoon theory, the new members come back raving, it is so simply explained and so brilliantly understandable.

    Thank you,Dear Heart, your theory is invaluable and has helped so many fibro people to understand their fatigue. Your moment of brilliance and genius has been so helpful for so many patients who do not find acceptance and understanding where none existed before. You are a true EarthAngel.

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