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.

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  • To reiterate Michelles brilliant point, The Spoon Theory is itself- good in theory. Yes, it attempts to tackle the tough job of explaining the concept of chronic illness to a ‘healthy’ person. And maybe when it was originally written it was the best we had, since Lupus and chronic illness was more widely misunderstood. But now that the word Lupus is known in mainstream society, we are being misrepresented. This concept makes us look like weak and unintelligent people who need to be taken care of. We are far from that, and I firmly believe it’s time for a new anthem to bring us together. One that focuses more on empowerment and strength than weakness and, well, making your friends cry.
    I understand that Spoon Theory has quite a bit of a cult following, but I believe that’s just because we haven’t had anything better to relate to. But that’s changing, because I’m finding that there are quite a few of us out there for whom this story doesn’t sit right.

    http://itwaslupus.tumblr.com/post/2710855701/spoon-theory-garbage

    http://andfakethewayiholdyou-.tumblr.com/post/3213881495/omegalowmaniac-today-i-was-introduced-to-this

    And more. We’d like to collaborate with all our followers and find out their best Lupus stories, and come up with a new, more appropriate and more empowering anthem for those of us kicking ass with Chronic Illness.

  • I’m with Steph & Dana! I have AS, lost a kidney, GI issues, epilepsy & ITP and when the spoon theory was suggested for me to read I finally had a way to explain to others the part of my life that illnesses try to control. Christine’s words helped me more than words can ever express. I will forever be grateful for her sharing her story. I never once thought as I read the Spoon Theory that she was focusing on the bad things. It was inspirational! She was helping to explain it. Her friend asked, she explained. Like many others, my family and friends ASKED what it felt like and when I shared the spoon theory with them they really were finally able to grasp my experience without having to “suffer” along with me. I’m a confident, self-respecting woman who will never stop my fight. Sharing the spoon theory with family and friends doesn’t mean I’m focusing on the bad, it means I will never give up no matter what hurdle presents itself! I am NOT my illnesses, but I do have to live with them and accept this fact.

  • Candy

    I have to agree with Dana and Steph. Im not sure why this is offensive to Michelle. My lupus doesnt define me but it is certainly a part of me. A part that until this Theory most couldnt understand. Michele is right, I dont want anyone to suffer with this but the fact is many of us do and its not easy to explain to those that dont. The Theory isnt here to bemoan the illness. Many of us thrive regardless of it. Our friends arent stupid either but they dont read up on this illness as we do, nor should they have to. This is a simple yet effective way to show what we deal with.

  • Hi Michelle! Everyone is entitled to their own opinions and although over 630 other comments thank Christine and love this article, I guess to each their own! Count me in as one of those who don’t respect themselves and love this article. Have a blessed day.

  • Chris Stevens

    I agree with Steph and Dana. The Spoon Theory has given me a way to reach out and explain my daily life to people in my life who don’t have a chronic illness. It is tangible, concrete way to explain what most people take for granted.

    No I don’t let my RA rule my life but like it or not, it does dictate what I do and at what at times. In fact I did a sprint triathlon this past June but had to save my “spoons” in order to train for it at night and sacrifice in other ways. My husband understood this and would tell me to rest while I could. Something he would not have done until he read this theory.

    A few of my close friends and I have a running joke with spoons. All I have to do is say I am low on spoons or I am having a good spoon day and they immediately get it. At times I will get a message on my Facebook wall giving me a “spoon” as a way for people to reach out to me and let me know they care.

    It means something and this community has opened up a community of people to me that understand all because of a “spoon” in a restaurant with a friend. We should be thanking Christine for her hard work and dedication to the people who don’t look sick but can use all the support they can get.

  • Personally I love The Spoon Theory but think it isn’t a particularly good fit to my own disabilities (I have CP and long term depression). Nevertheless I do find that I need to weigh things up against each other at times – something which I’m not always conscious of doing because I’m lifelong disabled. Having something like The Spoon Theory which provides a common language amongst friends with disabilities and goes someway to explaining my life with CP to nondisabled people is huge. That said, one day I do plan to write my own explanation which fits my own disability better. Of course, I have been saying that for years.

    To say that anyone is giving up by accepting their disability and living to the best of their ability without taxing themselves is wrong – and insulting.

  • Pam

    I appreciate your opinion Michelle. We are all just trying to find the best way for us and our families to deal with our physical illnesses and the challenges they give us in our daily lives. I believe anything that helps our friends/family understand us is a good thing. Noone in my house deals with what I do on a daily basis. However, I have explained this theory to them – and I even have a spoon bouquet on the table as a visible symbol each day of how I am that day – and now they get it. I still live with the guilt of not being able to be all I want to be to them. But they now have a visual of how I am feeling that day.

    Awareness is the most important thing we can provide to our friends and family. If they can’t get some kind of an idea of what I feel like each day then they can’t properly support me. That has nothing whatsoever to do with if I am allowing my illness to “get the best of me”. It isn’t about me. It’s about their understanding my illness the best way they can without having to experience it.

    Let us all handle our illness and how we bring awareness to it with our friends and families in a way that is helpful for us. No need to criticize. Just because you don’t think it’s a good idea for you has nothing to do with whether it is actually a good idea or not.

    Pam

  • I’m with Steph – most of my family just flat out doesn’t get it. Even my own husband… there’s a language and cultural barrier that is just hard to break through… until the Spoon Theory. THAT he understood. It put my illness in a tangible light, something he could grasp and understand… and now when I’m having a hard day or struggling with something, I need only say “I’m a few spoons short today” or “I could use another spoon” and he picks up the slack.

    It’s given me a way to communicate with my family where medical jargon and terminology failed me.

    Thank you Christine for that.

  • Steph

    Michelle, while I respect your opinion and appreciate you taking the time to read The Spoon Theory, I couldn’t disagree with you more.

    I have lived with Lupus for 10 years in addition to 4 other autoimmune diseases and The Spoon Theory is the ONLY essay that I have ever found to move me to tears and to help others who love me to understand. They WANT to understand but if you don’t live it, it’s difficult. They asked…I provided and they repeatedly thank me for introducting them to Christine’s powerful words.

    I think the sheer volume of retweets and links that The Spoon Theory received EVERY DAY speaks volumes to the instant way most people identify with it. I am certainly more than a self respecting person with a chronic illness and I’m honestly kind of offended myself that you would make such a generalization about the rest of us.

    I am sorry for what you have been through and continue to go through…no one should have to endure it….but I have a feeling that your opinion is in the minority here and attacking Christine won’t change any minds.

    I don’t think Christine dwells on anything negative. On the contrary…I think she lifts us all up.

  • Michelle

    As a person who has lupus, acute lymphoblastic leukaemia and is currently recovering from a kidney transplant I would like to say that I am deeply offended by this article, as should any other self respecting person with any kind of chronic illness.

    Why are you letting your illness beat you like this? Just because I am sick it does not mean I am fragile, incapable person who needs special treatment. Yes, it is hard and some days it’s beyond difficult for me to even get myself out of bed, but that is all the more reason I want people to treat me normally. Because I am normal, I am not my illness, it is just a part of who I am.

    While my friends and family can never truly understand what I go through (I wouldn’t want them to, because the only way they can do that is if they went through it themselves) they understand that some days are hard for me, some days I may not be able to take part in certain activities and some days I have good days and want to do things. They are not stupid, and I think they would be very offended and upset if I tried to explain my illness to them in this manner. Having a friend or family member who is sick is very hard, why would you want to go out of your way to make it harder on them?

    If you let your illness get the better of you like this, you make it so much harder for yourself and everybody around you. I’m not saying you have to be positive and happy every single day, that would be absurd, but I know I certainly try my best to make each day easier with a little positivity whenever I can.
    And if each day is truly that hard for you, if every tiny little thing you do costs you a “spoon” you need to see your doctor and reevaluate your treatment because that just isn’t right.

    I have limited time left, and I refuse to spend that time counting out all the ways my life is bad and hard. I take care of myself the best I can, I take my medication and I get on with my life as much as I can, I just take each day as it comes and just hope it’s going to be a good one and if its not I rest up, maybe have a little moan to my closest friends and hope tomorrow might be a little easier. I suggest you do the same, and stop wasting your life focussing on the bad parts and be thankful for the moments you do have the ability to do what you want and need to do.

    There may not a be a cure for lupus, but that doesn’t mean you need to let it win.

    I hope today is a good day for you 🙂

  • Wow! That was amazing. I have Chiari Malformation and Syringomyelia. They are they type of sickness that looks fine on the outside so people think you’re ok and don’t give it a second thought (if they even know about it)
    This is the best way I’ve ever read/heard about trying to explain something others can’t see.

  • Rhonda Baxter

    Thank you for giving those of us with “invisible” disabilities a way to explain how we feel. I have tried hundreds of times to explain to family and friends what its like to live with Fibromyalgia. You have just summed up my life in a few paragraphs better than I have in volumes. I will never be able to express my gratitude. I hope people will be able to better understand me now. I have few friends who truly know what I deal with on a daily basis, and for them I am forever grateful. As I am for you. May your tomorrows be filled with extra “spoons”. God Bless.

  • Rochelle McBride

    As the mother of an EDS patient, I can relate to how much pain my son has. If you have a problem with typing on the computer, please seriously consider using either Dragon Naturally Speaking or Mac Speech Dictate to do your keyboard work. The time spent learning to use Dragon will be well worth the task. Dragon will allow one to even control the computer mouse movements, truly making computer work mouseless and keyboardless! I have spent years doing medical transcription, and I used Dragon for years, even when my supervisors didn’t know it! There are definite advantages for working from home. Until you can purchase Dragon, there is another program called Instant Text, which is a text expander program that allows you to shortcut often-used phrases. The difference between Instant Text and, say, Windows text shortcuts is that with Windows, you have to remember all your shortcuts. Instant Text displays them on the screen so all you have to do is select the correct entry and it’s entered into your document automatically. These two programs saved me from developing carpal tunnel syndrome, which is pretty much par for the course with transcriptionists. Thanks for posting this explanation. It really helps put things into perspective. God bless.

  • Charles Runyon

    I remember when my wife was first getting sick with Lupus before we knew what it was, some days I would have to roll her over in the bed because she didn’t have enough energy to do it herself. This was 1984 and Lupus was almost a unheard of . Some days all the spoons were in the dishwasher and the day started later.

  • Jamie

    Thank you! I hate explaining lupus because they still don’t get it!

  • Samantha

    I have Ehlers Danlos Syndrome type 3 (Hypermobility) … I’ve always wanted to get the point across to my high school friends because especially at our age, they don’t care nor can they possibly understand, I think next time I’ll use your Spoon Theory.. Thanks a lot (:

  • Sciaci

    I have severe PTSD, depression, ITB syndrome, arthritis, heel spurs, asthma, dyscalculia (innumeracy), insomnia coupled with SAD), anxiety, and absolutely no familial support. I have a very high IQ and am a survivor, so my intellect often confuses people. If I were a child, i would be a “twice exceptional child.” I am living on SSI in crappily-managed supportive housing. I am 47.

    The spoon theory came at the perfect time for me, and God bless the friend to gave me the URL to this. I am going to show it to my treatment team, my friends, everyone I can. People with physical and mental disabilities are marginalized and misunderstood, mostly because they don’t have the tools to explain what life is like for them. This needs to end.

    Despite it all, life is lovely and beautiful and a joy. Life is worth fighting for. It is even better when your loved ones are wearing the same color goggles you are. 🙂

  • shannon

    I have never seen anything that explained Life with Lupus until now. You have put into words what so many of us have not been able to do. I never have enough spoons and now I’m hoping that the people who have “distanced” and “denigrated” me until now will take the time to read this and feel just a little of how it is for those of us who do have to balance every simple thing. It’s a dreadful thing to start getting ready for something 2 days prior just so you can wash your hair, shave and shower w/in the 3 day period incl. the “event” day. Heaven forbid you’re late because it took 3 hrs that day instead of 2 to get ready b/c you have to rest for 5 mins every 10 mins or you suddenly become nauseated and have to stop everything for an hour. You are my hero, as a one time wanna be writer you have given me the words I didn’t have in my vocabulary.

  • This is such a wonderful way to give insight into what we are faced with. Moving and beautifully written…thank you for sharing it, and for advocating the way that you do. It means a great deal to so many of us “spoonies” – thank you:)

    Disautonomia: Vasovagal Syncope / Severe POTS (postural orthostatic tachycardia syndrome), Hemiplegic Migraines, Thoracic Outlet Syndrome, Fibromyalgia, Arthritis (probable rheumatoid/psoratic in spine, hands, feet, knees, jaw), Occipital and Trigeminal Neuralgia , Paresthesia, Coccygodynia, Chronic Cervical and Thoracic Myofascial Pain Syndrome, Tarlov Cyst S2, Degenerative Disc Disease (had laminectomy L5/S1; bulges at C4/5, C5/6, C7 and recurrence at S1), Failed Back Syndrome, Displacement of cervical disc left c5-6, Cervical Spondylosis with Foraminal Stenosis, Sciatic radiculopathy (S1) / permanent nerve damage (partial paralysis) in right calf/ankle/foot (denervation in leg contributing to severe POTS), Lumbar Spondylosis and Lumbago, Bilateral Radiculitis (upper and lower), RLS, Reynaud’s Syndrome, Sjögren’s syndrome, TMJD, Patellofemoral Syndrome, Proprioceptive sensory motor balance deficit, Sacroiliac joint inflammation, PMDD, Multiple Chemical Sensitivity, Asthma (and that’s not all, folks!)

  • Stan G

    Christine, Thank you for this wonderful article. My niece first mentioned the spoon theory yesterday and I thought she was kidding, until she posted a link to this page.

    Being a relatively healthy person all my life, I’ve never had to consider how much energy goes into any one day. I have a close friend who is often ill as he once had bowel cancer and I have to admit to sometimes believing he used his illness to gain sympathy or to just not go out sometimes. But thanks to this article, I have completely changed my views and my understanding has been greatly increased.

    Bless you for this information. May your spoon drawer always be full…

    Stan G

  • Thank you, thank you , thank you for writing this!! This is exactly what I have tried to explain to family and friends. I am blessed to have a wonderful husband who understands and will sometimes has to tell me that my “spoons” are getting limited. I also write a blog post once about stopping, prioritizing and evaluating what is truly important for everyone.

    http://aprilhawk.wordpress.com/2010/10/11/stop-evaluate-and-prioritize/

    This article is also good for everyone to read because even when you are healthy with more choices, you still have boundaries and others have boundaries that need to be respected. God did not create us all alike and He gave some of us less spoons than others but I truly believe it is a part of His plan for us to learn from one another and to appreciate each moment of every day that is given to us.

    Again, thank you and I loved it!! I shared it with some of my friends and family. Now, maybe they will understand when I have to say no-
    Blessings to you-

  • Irene

    I raise my spoon to you my friend. Thank you for showing me a way to show others my day!

  • You have described my life in a nutshell at a time when my spoons are laying on the floor in a heap and people looking in cannot understand. What a marvelous way to educate others. Thanks from this SLE warrior.

  • Darlene

    What a relief to have a way to explain how I feel every day. I have Crohn’s disease and as a result have Ankylosing Spondylitis, a terrible arthritic condition that is extremely painful and part of my spine is fused together as part of this disease process.
    I read this to my husband and my in-laws and they finally understood how it feels but it only lasted a little while and then they forget.That is one of my greatest wishes, if I could just forget even for a minute that I was not in pain, what a relief. I have been in pain now for 9 years, 24 hours a day, 7 days a week….I hoard my spoons because I only start out with about 5 every morning as it is and I use them very wisely although when I am having a good day I tend to take advantage of it and it feels great!!!
    Thanks for the inspiration.

  • Christine this is a fantastic way of explaining how it is to be sick. For anyone with an illness. I love this theory, well done and thank you so much for sharing it with us. You truely are a star!

  • Amy

    My recent diagnosis of Lupus has left me at a loss of words. When I attempt to describe the disease to friends or family I seem to be looking at faces that just can’t quite understand what I say. I am having a rough time myself with this diagnosis and really need my family and friends support. Next time, I am going to use this analogy when I describe my fatigue, just a small part of my illness. Thank you!

  • Love this so much. I will use this from now on 🙂
    I have had fibromyalgia now for 20 years, im a spoonie

  • Thank You for this analagy of an invisible illness & what it takes to deal with it each & every day.
    On days I go to the Dr’s, it seems I use more ‘spoons’ than any. I hope they can help more with the chronic, debilitating pain; have an answer for me that will enable me to resume my life.
    Mostly I’m disappointed because few even understand, but I keep hoping & praying.
    This is a great description of fibromyalgia, lupus & every other chronic disabling, & INVISIBLE condition so many of us endure on a daily basis.
    Again, thank you for sharing.
    Sincerely,
    Dreemer

  • I have interstitial cystitis and I can totally relate to this. Thanks for such a wonderful site.

  • Hi!

    I, who has Ankylosing Spondylitis (AS), shared this page on Facebook with my friends, after my daughter, who has Lupus, told me about the Spoon Theory.

    Please give me permission to reprint this on my blog; I’ll make sure to include your copywrite.

    A speedy reply would be appreciated. Thank you, in advance. May God bless you.

    Lynn McKenzie

  • Diana

    Amazing. So few of my people get this. Now they will all understand me better, as I plan to share this with everyone I can think of. Thanks!

  • Pam

    Thank you for this article. I guess I am a spoonie also. I just never wanted to admit it. I try to do everything I can everyday because tomorrow I may wake up with very few spoons or none at all. My family has deserted me and that takes away a lot of spoons everyday, my stepdaughter just stepped all over me and that took all my spoons for that day and still takes away a few everyday because of the hurt she has caused. My husband wants me to go somewhere with him, maybe to visit, a car ride, etc. he doesn’t understand that it takes spoons to do that. When is it my turn to use my spoons the way I want to? Right now I have ironing to do, I’ll never get it finished but I’ll use as many spoons as I can to at least try, but leave some for taking a shower. A shower can use up a lot of spoons, who would have thought.
    Thank You

  • Cheri

    This is a beautiful article that will mean so much to so many of us who can never adequately explain what we go through to someone in good health. I suffer from both Crohn’s and Fibro…neither of which most people know much about or understand. I “look” fine, tests come back “normal” and I SHOULD be just great…but I’m not. Getting out of bed in the morning is a major accomplishment. Thanks so much for giving us a way to explain our lives…and a spoon to put in our pocket, just in case….

  • Thane

    It’s not really a theory, is it? More of a spoon analogy.

  • Nedra

    Blessings to you and all those who read this – it is exactly as she says – I have Fibro & Rheumatoid Arthritis – on days when I feel wonderful I have to put myself in check so that I don’t run out of spoons that day and be down for 2 days because of using borrowed spoons. I just wish my boss and husband could understand the frustration I feel at not being able to do as much as I used to. “HOW” do we do it? Is there a choice? of course not – we just keep on keepin on. Thanks for a great story!

  • Karon

    I have Transverse Myelitis and I used the Spoon Theory back in 2006. When I got sick i couldnt explain to people what I was going through each and every day. I have to say that when my friends read the spoon theory, some were in tears, others just sat there and stared at me with open mouths. The spoon theory had explained to them what I couldnt. So here is a very big thankyou to Christine Miserandino for expressing into words my every day life .

  • Tracy

    A friend who suffers from lupus shared this with me, because she knows I deal with my own set of spoons, crippling arthritis. It is so nice to see a concrete way to help my friends and family understand what I go through day in and day out.

    You’ve done a wonderful service in sharing this. Thank you for your inspiration!

  • Muzza

    Hi Christine,

    My fiance asked me to read this so that i can begin to understand how she feels as a sufferer of wegener’s granulomatosis, because of your spoon story i can now try to begin….thank you.

  • Pandora

    It’s strange how close this is to how I feel. I know a lot of other people are saying similar things. Today I am up 2 hours earlier than normal (running short of spoons already), and the pain is at a point where it would be simpler to just not feel anything. Soon my family will wake up, I will have to help get my children off to school and fake it through as much of my day as I can. Maybe I can stretch out my spoons today.

  • Jeanette

    I, too, used to have years of chronic pain, but now almost completely gone! After coming across the most phenomenal regenerative foods on the planet, changing my diet and exercising, I have a life again! The joy has come back into my spirit. I continue to gain strength and get better month by month. It is not a quick fix but well worth all of it.

    A person does not have to live with chronic pain. Even though I still have some residual pain, the strengths of my body far out weigh the weaknesses and I contribute it mostly to these regenerative foods. They are from the company called Sunrider and based on the philosophy of regeneration, that the body can heal itself given the proper nutrition.

    Please know you really can have hope for a brighter tomorrow.
    Jeanette

  • Joanne

    Thank you so much for this wonderful insight. I have strggled with chronic pain for 6 years and have tried to fnd some way to “explain” it. The closest I ever came was to liken it to weightwatchers and point counting that I saw my sister-in-law go through on a diet.. This is much more positive. I applaud you.

  • Emily

    Christine,

    Thank you. I have struggled with Crohn’s disease my entire life. I have had a recent set back, just released from the hospital. Finding this, reading this gives me more joy than I could ever express. The knowledge that so many others understand, that one person could explain it so clearly. Thank you, thank you, thank you.

    -Emily

  • Krystle

    As I read your story and theory about having an extra spoon in your pocket, I felt relief and comfort that someone else knows how I feel and what I go through everyday. It can be very hard to explain how tired and in pain you feel chronically to family and friends. Especially, with so called invisible diseases, where you still look healthy on most days, but are hurting on the inside.

  • Steph

    Thank you for this. I feel when people now ask me, I can say very much the same…I guessmy main problem is that i run each day with more spoons than i have, and then tend to crash. You have taugh me that I need to slow down, because when spending a day doing too much, although i am not affected straight away with my disability, it catches up on me and im out of it for weeks

    Thank you for clearing my mind

  • Jenn

    Wow, thank you for using one of your “spoons” to write this. I have Chiari Malformation & while it is completely different to Lupus, I can relate to your daily struggles.

    By writing this, you have given us a way to make our illnesses realistic to those around us.

    Thank you!

  • Sparkle

    I wanted to thank you for posting this article. A friend of mine sent this to me in response to my long note to my friends about my issues with chronic pain. This helped me to accept that this is an illness. Before, I felt like claiming it as an illness was cheating people, that have lupus for example, out of something. However, this is something that I live in my life daily and may for the rest of my life. I am just starting to accept these things and doing my best not to let it define me. I know refer to “spoons” in may facebook status to try to let me friends understand how I feel day to day. Thank you from the bottom of my hear for sharing this. I am very grateful to my friend for sharing this link with me!

  • Tal

    This is a perfect explanation I can actually show to friends and get the point across.

    Thank you so much for sharing your story.

  • penny robins

    I chat to someone on line who refers to himself as a spoonie, I never knew what it was, so when he put the link up I read your story. I am crying now, as my story is so similar to yours and thousands of other peoples. I have never admitted to myself before, that each day has a limit on the amount of ‘spoons’ I have in supply. If my ‘spoon’ supply were debt I would be bankrupt now, as I continually use spoons that I havent got, then, like today I end up in bed. Your story has made me aware that I need to be a better planner and should always have a spoon reserve. Thank you

  • lrltree

    I am at the verge of tears. I am a person who has to ‘count my spoons’ and I never know how to explain this to persons. It hurts me when they always say: You are sick again? But I will remember this. I hope your days are tolerable and you can simply ENDURE whatever it is that comes your way. thank you.

  • dan

    brilliant. You have made the world a better place with this story.

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