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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  • A. Fernandez

    Hi Christine,

    Thank you for writing this. I, too, have lupus and have suffered from it for over 25 years. I went through much of what you describe so clearly – the daily routine that’s far from routine for some of us. Those symptoms have all resolved but the disease has irreparably damaged my kidneys and lungs. However, my condition is stable at this point.

    I wonder if you have heard of “Lupus Underground: A patient’s case for a long-ignored drug-free non-patentable counter-intuitive therapy that actually works” by Chicago-based journalist and lupus patient Anthony DeBartolo. It describes UVA-1 phototherapy for lupus pioneered by Dr. Hugh McGrath Jr., Professor of Rheumatology in the Department of Medicine at Louisiana State University. UVA-1, “the longest band of ultraviolet wavelengths,” has not been shown to cause cancer but has been very effective in mitigating fatigue, joint pain, inflammation, fever, and morning stiffness. It has also improved cognitive function and decreased photosensitivity.

    There is a lot of info on UVA-1 on the Lupus Foundation website as well as DeBartolo’s own website which includes a video of Dr. McGrath with a patient whose cognitive impairment improved with the treatment. Unfortunately, Dr. McGrath’s research was adversely affected by Hurricane Katrina and had to be discontinued.

    DeBartolo continues on UVA-1 phototherapy using equipment he built himself. I also had UVA-1 in Germany 2 years ago for intractable lupus dermatitis which went into complete remission.

    Try to look into this treatment and take care.

  • Tyson Holly

    I found this while trying to do more research on my celiac disease. I’m an emergency physician and I STRONGLY URGE all of you to reevaluate and change your diets. I would’ve laughed a year ago had someone said my diet was the cause of my chronic migraines (up to every day per week requiring injections), joint pains, exhaustion, depression, acne, kidney stones, severe right side and back pains, etc. But luckily a colleague who trained in Japan as well as the US saw me while I was in the hospital for 5 weeks for severe abdominal pains and a partial bowel obstruction and swore I’d get better off GLUTEN, SOY, DAIRY AND OTHER PROCESSED FOODS. I was the processed food queen, stopping before and after my ER shifts to get fast food, or eating crap during my shifts bc I didn’t have time to make my own food.

    I was initially very resistant to try this “holistic” approach to getting better, because like every other American do tor, I was trained to think of invasive procedures or pharmaceuticals as answers to health problems. Finally after suffering heart arrythmias and having over ten other MDs tell me it was just stress, I gave in. I’m now gluten, soy, dairy, egg, nut, red meat and red dye free, and I am A NEW PERSON. I feel ten years younger and my family constantly says, “we got the old you back!”.

    I no longer have any of the above problems except residual abdominal pain, which is improving daily. Nutrition and diet are taboo discussions in American health, yet the food you put in your body can help or hurt you more than almost anything else. I have nothing to gain here; I simply want to help other women (and men) who are at their wits end. I truly believe autoimmune disease, celiac, ibs, IBD, migraines, multiple sclerosis, chronic fatigue and all those other “stress” related illnesses are due to the awful diet we as Americans now have. Get off processed foods. If it has ingredients you can’t pronounce, why are you eating it?! Eat what our grandparents and great grandparents ate- unprocessed meats, veggies, fruit, corn, potatoes, etc. Avoid the seven common allergens (gluten, soy, dairy, tree nuts, peanuts, eggs, and shellfish/fish, although like me, you may react to more than just these), then add one at a time back in and see how you feel. It will take some adjustment but honestly isn’t eating right better than taking a mountain of pills to just mask the symptoms?!

    I promise it’s possible. If I can do it, believe me, anyone can! It can’t hurt. Try it for a month or two. I hope and pray you have the same success I did. It just kills me to see how many of us are suffering when the answer is so simple. Google “women undiagnosed abdominal pain” and you’ll see what I’m talking about.

    Good luck.

  • Per K-sson

    hi!

    i’ve had so hard to find words to describe how a “well functional” male in his youth, supposed to be at atletic top can’t join that sportcompetition at work. even thou I have a hard physican work.
    but it’s that i’ve learned how many spoons i have a day. i don’t have any spares so a sportcompetition even if just for 30mins of rowing or running will ruin for 2 days.

    Now i know how to describe it. Thank you!

    Also i would like to make a swedish translate on the text if that’s okey.

    best wishes

  • DENISE

    I cried when I read it. I can’t tell you how many times I’ve planned things with my family only to have the day arrive and lupus takes it away. It’s so hard to disappoint people who can’t understand what it’s like. I’ve spent days in bed after overdoing to please. Then they feel bad because I can’t do anything else, so its a hardship all around. The spoon theory gives a tangible example, and the comments make me feel that I’m not alone.It’s true that we never know what we’ve got till it’s gone. I wish all the other readers good luck, good life, keep your head up, find something good in every day.

  • Grace Mary Perez

    This is quite simply one of the best articles I’ve ever read. Thank you.

  • kelly

    i just wanna say thanks for putting this out there it’s a great way to explain things i have a laundry list off issues that i won’t get into but i could never explain to someone how it felt to make these choises everyday. or to simply say “i hurt everyday” just doesnt hit home! and noone trully gets it when i say i just cant do anymore i’m done for the day, i get looked at like what do you mean there’s still time to do more. im sure i push my luck but i’m stubborn and sometimes a whole day is wasted cause i’ve pushed to hard to “be normal” again thank you and prayers to all who are going thru similar issues!

  • Jam

    Wow, this is exactly how I feel. I hadn’t found a way to explain to my healthy friends and family what I go through every day. It is so hard to get people to understand when you don’t “look” sick. I have been asked several times if I am depressed, told I’m lazy, told that “everyone is tried at times,” “everyone has pain at some point or another,” “everyone has pain but you don’t always hear them complaining about it.” I don’t always complain. I have horrible pain throughout my whole body everyday and I am beyond exhausted, no energy at all. I speak up when the pain is unbearable. It’s very frustrating when you want to be able clean house, exercise, just do normal day to day things but can’t because of NO ENERGY.

  • Carolyn

    Thank you for sharing this!!! I love the Spoon Theory, as it does apply to many of us who have “hidden illnesses” that are many times so hard to describe to others, let alone ourselves!
    I had a subarachnoid hemorhage, followed by a small stroke 18 months ago. I look well, fortunately I’ve been lucky to not have suffered many physical defecits, but I too have to count out my spoons for the day! I’m still learning to put a few on reserve as I’m finally coming to terms with the amount of spoons needed per day!
    Again thank you for this great analogy into our daily lives with all the spoons! 🙂

  • Stephanie

    I can always tell when someone understands what Im going through and You Do..this helped me. I have Sjogrens. Thank you.

  • Joy

    I am 59 years old and have had systemic metal toxicity for over 15 years. I live alone and survive only on Social Security Disability.

    Two months ago, my oldest daughter decided that all my problems were because I no longer have anyone in my home to ‘care for’. Just to keep down the explanations in front of several others, I offered a simple, “You may be right.” The next morning she shows up at my door with her 6 year old son and his suitcase saying something about the day care closing for a week….. could I take care of him……..and leaves for work without my answer.

    A couple of days later she admitted that she was trying to save money on day care so she, her husband and children could go on a 3 day mini-vacation. Oh, and she realized that I was too sick to go. She is so thoughtful like that. She did add that taking care of a 6 year old helped me because I needed company anyway. She is so thoughtful like that.

    I was approved for Social Security Disability benefits within 3 weeks after my application. Now let me get this straight…… SSD pays me to sit here day in and day out, Medicare pays my medical bills… yet all of a sudden, this accountant daughter has decided she can cure all my ills by giving me somebody to take care of. After all, sitting here with nothing to do isn’t really good for me. She is so thoughtful like that.

    Don’t get me wrong, I love my grandson and love being with him, but this really hit me below the belt; but then she is so thoughtful like that.

  • MaryJo Redpatch

    I am 40 years old and up till a year ago I lived a busy happy normal life with a 5 year old daughter. Then little things started to change my movements, aches and pains stomach issues, headaches, and a rash that was painful but no known orgin for it. Then this past June my primary care diagnosed me with Fibromyalgia and sent me to a specialist to confirm it. I was trying to squeeze so much in a day and could not understand why I was so tired and sore. Started blaming my fatigue and sleepiness on my iron deficiency and aches and pains to DJD which was diagnosed to me back i n the 80’s and stomach problems from a gastric bypass in 2002 just to find out I was making excuses for something I had no idea about but only heard about. Even just newly diagnosed with this chronic pain disorder of Fibromyalgia I am still in denial but learning how to cope and not over do it and when I do take it easy I feel lazy but I know what the end results will be; and my husband is good he does not say I told you so, he just reminds me I can’t do everything all at once anymore. I am glad I stumbled upon this.

  • Cindi

    A co-worker showed me the spoon theory, I think she knew i had very few spoons left. Today i am out of spoons. After many draws and a ct angiogram i am finally home. I hate not being in control. Today was a bad day, but i am hopefull that tomorrow is filled with spoons. I shared the spoon theory with friends, i think it will help. They are so used to me being on my game that when i just want to sit on the side lines, well, they just don’t understand.
    I don’t feel so alone anymore, thanks for the article.

  • Linda

    Wow!! I felt pretty strong today and then I tumbled in on this page and now my tears are falling down the cheeks… This script hit my heart like nothing else has done. I´m living with a form of md and having big trouble to get my near and dear to understand what my life looks like but after reading this I know I can make them understand…. Thank you for sharing this story and take care… Lots of love!!

  • R

    I have a debilitating chronic illness completely different from Lupus but it makes perfect sense to me. A great read, I’ve sent it on to others.

  • Kelly Bertram

    I have Sjogrens syndrome…That article helped me say what I have been trying to say for years! Thank you.

  • anna

    Excellent article and very informative. I’m considered a healthy person, so I don’t have to make decisions like that.

    The closest I can come is dealing with depression/anxiety, ADD and a body that needs to be kept within a certain balance to function correctly (i.e. my blood sugar can get out of whack a little bit (but still be considered normal), or I didn’t eat the right amount protein or I’m not exactly hydrated and I struggle to get through the day…in short, a body that is sensitive to several things. I need to consider when my next meal is and what it will consist of if I want to function properly: teach w/o feeling like I’m going to fall over/pass out, avoid headaches, feel emotionally/physically stable). Ok, that sounded a little whiney and I didn’t really mean it to come out that way. My “condition” (if you can even call it that) is very easy compared to what I’ve read here.

    My heart goes out to all of you (and prayers that scientists and docs get a move on with finding a cure or at least something more to help you through your daily life). Thank you to all of you for helping me to understand what daily life is like for you. While I’ve never judged or wonder why you don’t do something, this explanation made it so easy to understand. Thanks for this article!

  • Barbara

    Thanks, Christine! for your wonderful essay. I’ve have noticed over the years how you have grown this website and I’m glad this has become so successful!

    My sister and I have referred family and friends to this website and your essay for years! I have Lupus and Fibromyalgia, she has Still’s.

    Our well friends and family members know exactly what we mean by “spoons’ and sometimes even ask us if we “have enough spoons today” to do something. What’s really great is that they understand when we say ‘sorry, I just don’t have the ‘spoons’ to do that today.” No hurt feelings, just understanding. A long time coming. We’re greatful that you were able to put this into words!

  • Kamelh

    I love this article. After two years of being pushed around by doctors, and having no feeling in the lower half of my body, I moved to Germany and found a doctor who was able to finally diagnose me with MS. It is very hard to explain an illness to people that they cannot see and do not know a lot about. Even my husband of 8 years and my mother hav a hard time understanding when I say I am just simply “too tired” or I never know how I am going to feel so I have to plan certain events accordingly. I agree with Siokmin, I miss the days where possibilities were almost endless.

  • Pete

    I have interstitial cystitis and have to run to the bathroom every 2 hours on a very good day, every half-hour to an hour normally, and at worst, every 5-10 minutes.

    No one can really understand how this affects my quality of life because it’s so difficult to explain when no one quite understands, but this helps =) Thanks so much.

  • Siokmin

    Thanks! Great article.
    I have lupus too but luckily not as severe. One sentence really reflects my feelings “I miss never having to count “spoons”

  • i have clonus and nerve damage in my neck, due to c-spine surgery.

  • Jennifer

    Wow! The “Spoon Theory” is spot on when it comes to living with a chronic illness. I was in tears when I read it. With my illness (POTS) I can start my day with a plethora of spoons….only to lose ALL of them in one instant. The problem is, I can’t tell when I am going to lose all my spoons. That is my main problem. After I have lost all of my spoons, they are GONE. GONE! I can tell that I am more greedy with my spoons…….in the hopes of keeping some of them when I have a flare. I am very blessed to have a family and work place that understands, but it is still an every day struggle that, unless you live it, it is very hard to understand.

  • Marie

    I’ve suffered from chronic pains since i was a small child and I’ve grown up feeling like no one understand why i can’t do daily tasks as simple as getting out of bed in the morning. I’ve always felt alone and like I had to push myself and give away more “spoons” then I should to keep people from asking questions that I can’t explain. It is especially hard for me when it comes to my husband, he is very active and doesn’t understand what I have to deal with. A lot of times he gets frustrated with me because I’ll have to ask him not to hold my hand that tightly or something small like that. I’m so happy to have a way to explain this to him and others who ask what I used to refer to as the “impossible questions”. Thank you so much for posting this and making it available to others who don’t necessarily look sick.

  • I have Dysautonomia: POTS and have had it for as long as I can recall. I just didn’t know what it was until a year and a half or so ago, when I FINALLY got diagnosed. I’ll be 28 next month. Seems like I’ve lived an awfully long time knowing I was sick, but living sick without answers. This article truly spoke to my soul. I’m a TOTAL spoonie. I have to cancel and abandon ambitious plans regularly because I am EXHAUSTED to the core and too ill to accept invites, do house work, run errands, or even seemingly simple tasks/activities, like get up, shower, or read a book. Showering feels like a hot Alabama death to me! I’ve read this article twice now and the first time, I just cried and cried at the words on my computer screen. Seemed like nobody’d ever understand my silent suffering, but it felt hella good to read, that SOMEBODY out there relates!

  • Love it!! Such an interesting way to think about chronic illness and explain it to others. I fall somewhere in the family of chronic fatigue / low thyroid/ autoimmune issues. Thanks for sharing – I think the story of the spoon theory will stick with me.

  • I also recived link to youre blog via forwared mail from my coworker. Realy ispiring post and will help may people to scope with health problems, especially cancer.

  • Gee Caver

    I have Systemic Sarcoidosis an autoimmune disease with similar characteristics of Lupus. It is hard to explain to people what it feels like to ache down to the bone. How simple movements, chewing or taking a deep breath can cause unimaginable discomfort- that being tired and listless becomes the norm. If I take pain Meds I can’t function. So I manage my pain and Meds according to my day. I refuse to sit and cry or complain. My friends and family get upset if they see I am in pain – not knowing what to do can be scary for them. I put on a happy face and keep moving for their comfort. I am grateful for the good days, for the many blessings and friends that love me through the bad days. Last week a friend called from out of town – I could hear myself being very short and basically not nice to him – but I couldn’t control it that day. I apologized later but he said he figured I wasn’t feeling well. That love and acceptance – a support network is so important.

    Thank your sharing Your Spoons.

  • Christine Winter

    Excellent blog! In May of this year I was diagnosed with Uterine Cancer..a month later I would have a full hysterectomy..I am also 64 yrs old. During this time I also had a full-fledged sciatica attack of my left leg…incapacitating me even moreso, once I came home after the surgery. More than a few of my family members have *assumed* that the surgery *cured* this cancer…as in “A little bit of cancer”. I have actually been told this by a few of my family members. UGHHHH!! That’s like saying someone is a “little bit pregnant”. I am currently waiting on a 2nd opinion by another gyne-oncologist, who is not satisfied with my pathology reports and wants to see the ‘slides’ himself. In September I will find out if radiation is needed or just several follow-up visits for the next 5 years. Yet it seems to me that some of my family members have determined to know more than the doctors themselves….one of those doctors…being one of my own daughters (OB-Gyne). In these past 2 months I can’t begin to tell you how some of these family members have saddened and infuriated me, at times. Many times I have felt so dismissed and discounted by them. But luckily….I have some great friends who have been more than supportive and understanding…for them I am truly grateful. Not the least to mention my daughter, the doctor….that immediately got the wheels in motion for my health and care. Today, if not for her…I would be sitting here typing, with the cancer unchecked and spreading even more….simply and painfully, because I had no medical insurance. I can never, ever thank her enough.
    I know that people may not understand our illnesses, diseases and/or disabilities…but I beg them to not speak to any of us, as if we are imbeciles and know nothing about our own bodies and the worries/feelings we have each and every day. Even though we may *appear* not sick.
    Thank you Christine for your ‘spoon theory’…..spot on!!

  • Kimberly Cox

    Thank you for writing this. I have MS and could not figure out how to tell people what my life is like. The spoon theory is a great way. I am going to have my freinds and family read it, I believe it will open alot of eyes.

  • I have auto immune hepatitis, chronic pain, have had 2 liver transplants a splenectomy and dozens on other surgeries and I am 29.
    I am so glad I stumbled on to this article it really explains the life of a sick person that healthy people really don’t understand.

  • Another blog referred me to your site. I have heard this post alluded to in other blogs, but had not read your “spoon theory” myself. What a wonderful way to describe the unique daily challenges of chronic systemic illness that we all face who are lupus patients. Working, families, personal pursuits: they all use up our daily cash flow of “spoons” to spend. Thank you for sharing your creative and insightful theory with the rest of us!

  • Sara

    I have Celiac so the spoon theory describes my life well. When my diet has been perfect for a month or more in a row then I have lots of spoons but all it takes is a tiny slip up and I’m on limited spoons for a couple of weeks.

  • Thank you for the article. I am going to print it and let my adult children read this. Maybe that might help explain how I feel. I have had MS since 2001. Been doing well but still suffer from fatgue and the heat really affects me. Thanks so much for putting this in to words.

  • eleanor gould

    A colleague with digestive problems sent me the link, not knowing that I am living with MS and cancer and more!!! I have sent the link to almost all I know, finding your description to be very suitable for me as well. Thank you!

  • Scifimom

    I have crohns, after I was diagnosed I went back to the university (third year starts next month), mastered my Origami skills and started baking gingerbread houses which now have become a holiday business (I sell them and make quite a good profit) My friends ask me how I do it (I also work 9-5 and have two small kids) Now I can tell them, I always have an extra spoon with me. Thank you!!!!!

  • Thank you SO much! I have used this and shaed this website this so many people.
    WendySmiling

  • k

    while my illnesses are, at least according to medical professionals, more of the mind than the body (adhd, several anxiety disorders, bipolar disorder, bpd, dp and dr, all chronic, all debilitating physically and mentally), this is frighteningly accurate and i will borrow this to describe next time someone asks what it’s like. beautifully simplistic, thank you for sharing it.

  • Elizabeth Wood

    I just read this article and it really does explain things very well. I have been sick for 6 or 8 years now, I have lost count. When I first got sick I was really sick and we still don’t know what I had!!! I threw up for days with diarrhea and severe stomach pain. I had a really high temperature and lost 10 pounds in less than a week. I was severely dehydrated and had to take potassium. I was so weak I could hardly lift my head. My husband didn’t realize how sick I was and so I didn’t go to the hospital for 2 or 3 days. When I finally went, they sent me to the ER….I was diagnosed with some sort of viral bug. Well whatever I had it left me with severe post-infectious irritable bowel syndrome, which was not diagnosed for months later and after surgery and multiple hospitilizations and numerous tests. I still deal with this chronic illness as well as fibromyalgia, arthritis in my back and other areas. I also suffer from depression, anxiety, PTSD, migraines, allergies with frequent sinus infections and other problems. I have had endometriosis in the past and eventually had to have a total hysterectomy as well. So, I completely understand the whole you don’t look sick thing!!! The only thing you can tell about me when I’m not having a major ibs flare is that I look tired. I am truely glad that I stumbled upon this website…& I am going to enjoy it I think!!!

  • Robin

    Thank you. I have used this article over and over for years to explain both my lupus and my RA. 🙂

  • Sherrie

    Chronic Fatigue, Fibromyalgia, and finally, Lyme Disease, which I had from the beginning, just undiagnosed. Since I was 13, to be exact. In 2002, I finally had to file for disability – my number of spoons had just finally dwindled to be too few to work and live.

    I cried when I read this story. I struggle ALL THE TIME to get people to understand what a big stinkin’ deal it is for me to do anything, and to get through to them they cannot …. CANNOT throw last minute changes at me or wait until 10 minutes before they get there to tell me they are coming. and I have to tell some people over and over – like they just don’t believe me? I know it is beyond their comprehension that for many years, I’ve had to get ready the day before and even, because I couldn’t get ready AND go somewhere the same day. Not enough spoons.

    After being treated for Lyme, unsuccessfully, I did get a little better – a few more spoons. They are precious – and just make me want more more more. I won’t give up! Until the day I am healed, I will need a way of explaining chronic illness to those that don’t understand.

    Thank you SO MUCH for sharing your spoon theory. It won’t be the last time I share it, and I am so thankful to have it to fall back on. What a blessing. THANK YOU!

  • sherry

    It’s been a while. I read again this morning. Made me feel better. Eight years post heart transplant!

  • Ruth Jasmin

    I have MS and your spoon theory will be so helpful in explaining how I feel to everyone around me. Thank you for sharing it.

  • Thank you! At the age of 40, 3 children grown & living their lives, enjoying my 2 grandchildren; I was excited for a new freedom to explore more of my interests that I’d put on hold. Shortly after a car accident, I couldn’t get out of bed, my body ached & I had no energy. I thought that the accident stressed me because I wasn’t injured, just shaken up a bit & felt blessed because I survived even tho’ my car was totaled; fault of the other driver who hit me. Tests later & lots of doctors & specialists, I was diagnosed with Fibromyalgia & Cervical Dystonia; 2 chronic pain conditions. I didn’t look sick & my family didn’t understand the sudden change when they were used to me always being the one they could count on. Before I turned 41, my life altered who I had been, what I could no longer do & trying to explain how I felt to anyone who always said,,”you don’t look sick!” Other than suffering pain & fatigue, those words hurt so much. I am now 56, have eleven grandchildren & spend quality time with family. Embracing life, love & limits…..

  • Valenco

    I don’t have anything chronic but I do have something that requires a few spoons starting with how I feel when I awaken in the morning. I had pulled my shoulder around a year ago while moving (being male, I was doing the brunt work) and it’s still been in as much pain as it was when I first pulled it. My spoon counting is very chaotic due to the fact that every day has different spoons at different times of the day and with different amounts used. I could be using one spoon one minute, half a spoon after that and then it’ll spike to me using anywhere from four to eight spoons at once and after that I’m done but I end up pushing myself and find myself using spoons I don’t have. It has even gotten to the point where I’m using spoons for my other arm as well to compensate for the lack of pull with the torn one. This article has helped me better understand how important it is for me to make the right choices with my shoulder but at the same time, I live with people who are counting and scrutinizing spoons worse than I am to the point where my spoons almost don’t matter anymore until they’re all gone. I’m hoping one day I’ll get a nice compensation of spoons but I don’t know when that will be… Part of me is afraid I’ll end up loosing my arm for good but for now, I’ll keep using my spoons to the best of my ability and hope for the best in life. Thank you for this article. It’s helped me get a better grasp of my situation.

  • As a healthy person, I found this article very useful for understanding my “spoonie” friends…at least a little bit. And after a recent injury which has reduced my hands to about 30% functionality, I’ve found this article helpful in describing to others the choices I’m making. This is part of a spoon right here, but I wanted to say thank you anyway. I really really really hope I’ll get unlimited or at least lots of spoons back. The doctors are hopeful. But right now I’m staring at a dozen spoons or so every day and it’s frustrating, heart-breaking, aggravating, humiliating, etc. Thanks for giving so many people tools to describe it.

  • I have Fibromyalgia & Chronic Fatigue.
    8 years ago I started a non profit for people with this illness in my area of Canada I live, the beautiful Okanagan Valley. I dreamed of a large society with others more healthy than me doing most of the actions, but. . .
    instead, everything got ran out of my 1 bedroom apt. and my apt. didn’t look like an apt anymore. I’m still de-cluttering, but I’ve lost too many spoons to really do it right.
    We in FM-ME always had an unknown author who had written the “Letter to Normals” that we so often relied on with healthier people, but I think that I almost like this even better, for it sure says my truth.
    I feel that I’m more motivated (no offence please) than most that I personally know with this illness in the area of trying to do something to makes some money for myself, for our governments do give us something, but it’s poverty living.
    That’s the other truth – lack of spoons and lack of the actual life tool “money” to keep going.
    Thank you so much for writing this Christine.
    I know we haven’t met but I consider you a friend.
    Sheryl Ann – Metisangel – Canada

  • I really identify with this. My illnesses are not so bad but I am partially sighted, have excema and asthma. I can’t go anywhere without getting stressed because of the bad eyesight, have to worry about long sleeves because of the exzema and am limited because of the asthma. It does get very frustrated and tiring.

  • Wow. What can i say, you have put into words what life is like for me. I have lived with Chronic Fatigue Syndrome for over 25 years, and have gotten so used to measuring out my ‘spoons’, i never think anymore about it, until i am confronted with other people’s demands or expectations that i will use up all my ‘spoons’, on something i know i can ill-afford to do.
    I also have Aspergers Syndrome, and it applies to that too – there is a limit on how many challenges (sensory, social, emotional) that a person with AS can cope with in a day. It was trying to deal with too many that saw me get sick with the CFS in the first place, i believe now.
    Many, many thanks. I am going to bookmark this page for future reference!!

  • Carrie

    I was just diagnosed with RA. I think this article wll help me to explain how I feel to my husband. Thank you.

  • Margaret Oldham

    I’m glad I stumbled onto this post. It puts into words something I have tried in vain to explain to medical professionals and friends for years. I was finally diagnosed with severe depression and fibromyalgia after being told (by medical doctors,”I don’t have time to waste on you, I have SICK people to take care of”, and by psychologists “you have delusions of grandeur” ) when I tried to explain how I felt physically and how frustrated I was not being able to accomplish more than I was. I was just getting by when I was deeply depressed because I’m “smarter than the average bear” and I appeared “normal”. Actually, I think I have accomplished very well just to stay alive and keep going and more or less support myself and do activities when the thing I most wanted to do was “crawl in a hole and pull it in after me” much of the time. The thing that has kept me going was that suicide would be letting the Bastards win, and I wasn’t willing to do that. Thanks for letting me vent.

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