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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  • Waithira

    I am spreading this to all my family and friends who never understand and keep asking…If you have Fibromyalgia, why dont you just have surgery to remove it?? that question always gets me angry as to their ignorance.

  • Lynda Vinten

    What a wonderfully eloquent and powerful story. You could be describing what my 14 year old daughter Cortney, has struggled through for the last 12 years – word for word.

    I would love your permission for Cortney and I to use your story when we adresses her school assembly and formal functions to raise awareness of her condition/s and promote tollerance amongst her peers.

    Thankyou for finding the words and emotions we have tried so long to explain!

  • cathy

    This pretty much explains alot about how it feels with the exception of a few thins missing. Seems like a great way to explain how it feels to deal with living with lupus on a daily basis.

  • Alice

    I’ve only recently found out that I have ME and the spoon theory has made me feel so much better because I know how to explain how I feel, thank you so much !!

  • Suzanne U-T

    WOW! Thank you Christine for telling your story and using your creativity to come up with a way to explain what it is like to live everyday with any debilitating or systemic illness. You have inspired me to look at my own illnesses (Fibromyalgia, Bipolar Disorder, ADHD, Borderline Personality Disorder, Anxiety/Panic Disorder) in a different light and to not compare myself to what I used to be able to do but, learn to cope and be strong instead of hiding or being angry. My spoons started going away at the age of 12 and now at 35, it is almost like they all just fell on the floor. I try everyday to pick them up only to have them fall after “over-doing it”. I cherish the ones I do have may they be few yet extremely necessary and hold on to them for dear life! Most importantly, I Cherish and am Extremely Blessed with a Husband (Who Thoroughly Understands and Supports me Completely), Mom and Older Sister (Who Both have Fibro, ADHD and Anxiety disorders who I can always talk to), the Supportive Therapist and Dr.s (Who are Very Kind, Specialize in every aspect of my diagnoses/therapies/ treatments), and the Many who share their stories and Support Eachother, Research, Education and Awareness! I think I will try the Spoon game with a few people as they remind me so much of your friend! Thank you Christine for your Bravery, Bless you for Sharing, Keep on Fighting the Good fight! 🙂

  • Kim Shaner-Gouge

    OMG, this brought tears to my eyes. It is exactly the feeling I have everyday. My cousins coworker shared your site with me. Living with RA is a new experience for me and in my 40’s it is had for my friends and faily to completely understand the day to day trials one has.

    Thank you so very much.

  • Hi, I’ve stumbled on this article and am deeply touched. I run a support group for parents homeschooling special education needs children, children often struggling with too many challenges to be able to cope inside a “typical” classroom. Many of these parents face challenges themselves. May I have permission to refer to your article, read it out loud or even print off a copy if I need to? It would not be to sell, only to encourage; especially for a parent who doesn’t quite get what their child is going through, or for a parent to explain to others when they themselves are struggling.

    appreciatively,

    Teresa

  • I have Lyme disease. I got it when I was 13; now I’m 26. I finally got a diagnosis 3 years ago. After I found a wonderful doctor to begin treating me, I slowly went from being bedridden to now being able to get out of bed and do a couple chores a day. This is HUGE. Six months ago God blessed me beyond measure with a marvelous husband who is gentle and tries to take care of me. However, I moved 12 hours away from my supportive large family and church community who had just gotten the hang of rejoicing with me when I COULD do something, not expecting me to do *everything*. Now I’m with other lovely people in my husband’s family and church… but having to start explaining my health situation all over has been exhausting and seems ineffectual… since I “look so good” and am no longer confined to my bed. I almost cried with relief when I read your spoons illustration. This will be so helpful as I try to convey my inherent inability to live up to everyone’s expectations for my life. Thank you for sharing this– I feel like you just handed me a couple bonus spoons today!

  • Cora Stewart

    I have type 1 diabetes and fibromyalgia and many other health issues that are “Invisible” and I have got to say this is the best explanation I have ever read for explaining what its like to live with any chronic illness.

  • Kajakat

    Christine

    First I want to thank you for sharing this with me. I too suffer from an autoimmune disease and before reading your theory, had a difficult time explaining how my life changed. I’ve referred many of my friends to read this.

    Yesterday I was conversing with a business person via the phone. We have become quite chatty over the time. He told me his little sister (an adult) had been misdiagnosed ten years ago and now they know what she has but no cure. She falls into our world. I referred him to your website and he read it while I was still with him. He couldn’t believe how awesome your story is and wanted to share it with his sister because he believes your spoon theory adequately describes what his sister has to defend. I just thought you would want to know how many people your spoons have touched. Be well.

  • Melissa Walker

    I have had Lupus and Rheumatoid Arthritis for 7.5 years now. It is interesting that we stop counting the 1/2 years for the most part, around the age of 13, unless we have a chronic illness that we are reminded of every hour of every day; we then count every month and half year we have survived with our disease.

    99% of people who know me think I look just fine, not sick, most of the time. My Mom and two other friends can look at me and know immediately that I am not feeling well, even when everyone else around thinks that I am just fine.

    This is the ABSOLUTE BEST way to describe Lupus! Most of us having been trying to describe it for years, unsuccessfully. Now, we can refer to your example, because no other could come close to the reality.

    I thank you from the bottom of my heart for sharing with your friend, and moreover for sharing with us, so that our loved ones can have a better understanding of exactly what we go through everyday. In addition to the constant thought in the back of our minds “What is going to be attacked next? Why do I have to silently wait to find out, when this is my body?!” Thank you, I know it must have taken a great deal of courage and many spoons for you to keep some composure throughout the description to your friend.

    It is most unfortunate that there are conditions that are debilitating to such young generations, and the public knowledge or awareness is so limited.

  • I am the Conference Chair for Spastic Paraplegia Foundation for the Annual Conference held in St. Louis in June 15, 2013. I was wondering if Christine would be able to honor us with her SPOON THEORY.

  • Melissa

    Love this explanation, I actually LOOK healthier than most people my age because of the diet I have to follow, a diet that helps but certainly does not take away the pain and fatigue from having to battle it all day. I feel the need to hide the pain from others because they do not understand and I do not want to be rejected by opening up a painful part of my life to a friend and have them not respond lovingly. I should not expect them to really get it, I never would have thought something like this would happen to me, either. The point is that if you love someone who has an illness, trying to understand is truly loving. Ignoring it totally is like a 2nd blow to even having the illness itself. I thank God for the few people he has put around me, such as my husbnad that really do care!

  • Thank you for sharing the Spoon Theory as a way to explain to family and friends the difficulties faced in just trying to get through the day with a chronic condition. I have Charcot-Marie-Tooth (CMT) neuromuscular disorder and having reached a point, where I need to
    learn to slow down and not try to do everything. Your Spoon Theory will help explaining this to family and friends. Thank you.

    For more information on CMT, which effects 1 out of 2,500 people worldwide, visit: http://www.cmtausa.org

  • I’m a 22-year old female. I have Endometriosis and Fibromyalgia. I was told I had Endo when I was 17 (symptoms started on my 16th birthday) and Fibro 2.5 years ago. I just discovered the spoon theory today and find that it is exactly what I feel every day, at every moment. Thank you for putting this up on your website, I can now explain how I feel to my family who understands but they don’t *understand* how it feels to walk in my shoes.

    I found a necklace that goes along with this and will buy it soon, it can now be a symbol of my diseases and why I have to regretfully say no to a lot of the things I love doing and people I love being with. Again, thanks.

  • I have Dystonia- a link was posted to this. I also have a blog here. It’s not easy having a condition that sounds more like a country than an illness. I look handicapped. I have tried ALL my life to look NORMAL. It is a losing battle. I have decided that unless you’re not able to get out of bed and take care of yourself- whether you “look normal” or not; you’re normal. I REFUSE to accept this lying down. I REFUSE to stay home. I exercise; I shop, I cannot drive- I take a bus; but I DO get out.

    What it boils down to is that I am MORE than my condition.
    Keep writing!

  • Brett

    This is so helpful for describing chronic fatigue syndrome as well. Have you thought of making a video out of this? (I know, not enough spoons, but it would sure be special for the person who thought of this great analogy to read this off in a script if nothing else…) And don’t feel the need to do this or respond–it is just an idea…

  • I love your spoon idea! It’s an easy and understandabke way to explain your disease. I have fibromyalgia, CFS, COPD, Chronic bursitis rt. hip, sciatica rt. si joint and rt. leg and herniated discs in the cervical and lumbar spine with symptoms. I am on Neurontin, Cymbalta and Morphine. This takes the pain down a little, sometimes, but forget it when I am in a flair. The hardest part for me is when I have flair-ups…takes so long to go into “remission”, I alsoo take a nap every day for at least 2-3 hours. Thankyou for being a fellow fibro. advocate. “gentle hugs”. Valerie

  • Ahhria

    This was beautiful. I cried as I read this because it explained things so well. I live with ulcerative colitis every single day and will until a cure is found. Many people ask me what it’s like, but they never understand. I have shared the link to your article in several groups on Facebook, and I am really hoping that those who nagged me and those who wanted to understand me will gain better insight to how I live with an invisible disease. I’ve tried hard to explain things, and I honestly wish I came up with something like this.
    Thank you for writing this and sharing it with us. I wish you the best! 🙂

  • Absolutely wonderful explanation. Thank you SO much on behalf of everyone struggling with an illness, especially an invisible one.

  • Jacob

    I never think people properly understand what you go through when you have a permanent illness. I often struggle to talk about my illness and the daily stuggle and battles I go through. I often too often run out of spoons. This is a brilliant way of at least trying to convey the message to someone who has no need to count their daily spoons and deal with the unpredictably of how many spoons you will have on any given day. It is a hard balance keeping enough spoons in your pocket but also making sure you use them before they are taken away without notice and never knowing how many spoons will be delivered on any given morning.

  • Amy Sprague

    I have Chiari Malformation , on top of the other symptoms it causes and this spoon theory is like my bible . So everyone wants to know how to explain your illness. Read this. it makes it better to understand for the people that tell you .. but you dont look sick

  • Adele Chedgey

    Unfortunately, like many of us, i suffer many illnesses. Epilepsy, Fibromyalgia, Rheumatoid & Osteo Arthritis, Ankylosing Sponditlitis & Depression. No i don’t look sick though some days the pain is visible if im using my walking stick. This is a wonderful way of describing my days, and i love your spoon story. Thankyou

  • LaDonna Gill

    After 2 spinal fusions I’ve lived in chronic back pain for 10 yrs and also don’t look sick. Thank you for the perfect explanation of how a person deals with a chronic illness on a daily basis. I’ve never heard it explained more clear. May each day count as we chose how to use our spoons wisely. May God bless you as you have blessed me this day!

  • Susan knight

    I have arthritis with a couple of other autoimmune disorders thrown in. I sobbed my heart out reading the story because it is me. One hand it is good for people to understand spoons, it’s just I don’t want people to know some days I have only a few spoons. We all smile our way through life. People around us know we are in pain, but can I let them know to that level?? But for me the spoon story has given me a real understanding of why my days are really difficult because you assume to some degree everyone lives their lives the same way….but they don’t do they!

  • I just had to post a link to this at my own website. I don’t have any “official” debilitating illness, but I was always sickly, suffering from headaches, and catching anything that was going around. Then I was injured, and my whole life has changed.

    Soft-tissue injury is very problematic. It changes your life, giving you lingering pain, with little hope of it ever really going away, and yet you can’t PROVE anything. No broken bones or lacerated organs means no actual disability.

    It’s been a hard adjustment for me, and my family as well. This spoon theory really resonates for me. Thank you so much for it!

  • Kelli

    This is a beautiful piece of work and captures so perfectly what living with a chronic illness is really like. I have an immune deficiency and my mom has lupus so this really hits close to home.

  • Jenn

    Thank you for writing this! My husband was diagnosed with Lyme a year ago & our life has forever been changed. Were both were extremely touched. We really needed it tonight 🙂

  • This is very powerful and so very true. I have had Lyme Disease,also Low thyroid, and Chronice Fatigue and Fibromyalgia since 1981. Then last January 2012, i was diagnosed with Secondary Adrenal Cortical Dificiency Disorder,and have to stay on Cortisol everyday the rest of my Life like a Diabetic on Insulin. So, it is very important that I manage my daily activities, my energy levels,and especially to try to stay stress free, as stress can be lethal to me as well as infection too. This is a very unique way of looking at the illness and Life and managing how one cope’s with it and how one feel’s about how one cope’s with it.

  • Barbara A

    I also have Lupus and I love your spoon explaination. It is so hard to convey to people how I ahve to get thru each day. I am happy to be alive even with my limitations. But I would love for just one day no pain, no sleepless nights. No more doctors appt’s. But I am alive I do every thing I can every day. It may take me two days to finish a chore that I could have done in two hours before, But I am ALIVE.

  • Very effective. So helpful not only for those with chronic illnesses but also for those seeking to understand the true impact. There are lessons here for all. When I have tried to describe some of this for myself to others, I’ve used the analogy of starting out in a car in the morning with no idea how much fuel I had and having to be very cautious about where I might be when I “ran out of gas” and to always make sure the critical things got done first. I like the decision component of the “trade-in” of the spoons. That’s much closer to the true reality I think. Thank you for sharing this.

  • KD

    Thank you. I will share this with everyone I know. I live in severe pain every moment of every day. I also have a cousin with Lupus. This will help folks to better understand.

  • Bobbi

    I am blessedly healthy, as are my family and friends. Your spoon theory explained very clearly just how people with illnesses – that are not visible – have to deal with everyday life and choices. Thank you for putting this out there so I can understand better. Thank you for sharing one or more of your spoons while writing this piece for us. May God bless you.

  • Bambi Tuckey

    Oh my God! You just helped me realize that I am out of spoons for DAYS/WEEKS because I don’t take the time to make choices and then I wonder why I’m not adjusting to my now different life at all!

    I REALLY needed to read this. Thank you so much and God bless you!

  • Staci

    Christine,
    My sister is an artist and your work inspired her – if you have a chance, please check out Just Nikki Photography on Facebook or Nikki Weber. We’re raising awareness for Gastroparesis.

    Thank you for such an inspiration article,
    Staci

  • Author Deeann Elizabeth Pavlick

    I have RSD for 15 years and still hear . You don’t look sick to me
    Thank you for this. Deeann

  • Barbara Johnson

    My goodness, What a wonderful way to explain you’re plight. I got MS late in life 65 yrs.. I find that I have just so much in my bank for each day. I used to waste my account, and still have enough to finish the day, AND still have some leftover. Not any more! I count the chores (not the best word) I have to do each day, we’re talking simple chores, making coffee, washing dishes, doing a load of clothes, folding them, standing brushing teeth, washing my body (I only shower once a week, it’s so exhausting), I made a mistake one day, It was cold in the house, and the shower felt so good, nice & hot! When I got out, I had all I could do to put on my clothes, then I couldn’t stand up and my legs wouldn’t hold my weight, it took about 4 hours to regain my strength. Thanks for giving me a way to explain to others.

  • Finally, a way to communicate to the healthy why you are the way you are. I have Scleroderma. I’ve had it for years and appear to doing very well now. I do make decisions by the weather, time of day, length of time away from home, etc. That’s how I stay well. If I overdo it I need to go to bed…and I don’t like needing to go to bed. The spoons is a great idea idea. Well done.

  • Jessca

    Thank you. I’ve tried to explain to so many people how difficult my sinus and respiratory issues are to deal with. Thank you thank you thank you.

  • Autumn Stevens

    Is there a way to contact Christine Miserandino by phone ? I’m not able to type much and would very much like to speak to her please.
    Thank you , Autumn Stevens

  • Diagnosed with Crohn’s Disease in 2001, really bad flare up and problems Oct 2010 – Present. In a normal day, I’m healthy, fit and active, or at least i look like i can be, and i know that a lot of people consider me to be exaggerating my problems even though i now have to take a stick with me in case i run out of energy halfway through walking for a mere five minutes.

    I have a lot of people asking me what it’s like, and i never mind answering them, i see absolutely no problem with sharing and no point to hiding it. But sometimes i’m stuck for how to tell them the full deal.

    I love it when somebody explains things clearer than i could, and so i could use this analogy because of it’s absolute truth. Thank you.

  • Anne Scott

    I understand all of this, When I was 9 on holiday in Jersey with my family I woke up one morning and we went to a beach,I sat there and thought my head dosn’t feel right at all and my perception of the world has changed as if I am in a small glass box and can only perceive a small amount of things. I was proclaimed mentally ill by my GP.I was sent to boarding school ‘for my health’ where I was found to have TB,I was in hospital for 7 months and on drugs for 4 years. In my 20’s I had a massive psychotic breakdown and have been on drugs ever since. I had a hysterectomy in my 30’s after haemorageing every month. In my 50’s up to now I have been through a traumatic menopause and I have severe arthritis in my knee joints and cannot walk properly,I am now 61 and still on the planet and I have managed to teach Piano and singing for 40 years,I have sung and acted on stage and I am a qualified dance teacher and ran my own dance company for 3 years,but,everyday I have had to battle with my illnesses and still do. I now have healing room upstairs and am using colour therapy to heal my knees and tissue salts to help heal the rest of me,will it work? I don’t know yet but I sure will try.

  • Sariah

    I have never heard a better explanation. Just too perfect. Thank you so much for writing this up.

  • Dear Christine,
    I’ve just read your spoon theory it was posted on my local ME support group Facebook page.

    What a fantastic explanation, thank you. Sometimes I do look sick but tha’ts usually only after I’ve used up and borrowed far too many spoons from future days, too many times and end up in relapse. Thank you for thinking this explanation up and taking the time to record the process.

  • Beatrice

    Thank you so much for opening my eyes and realize that my 20 year old endures so much pain and in theory understand that this is how she lives day to day. The spoon theory! I am sitting here shedding tears wishing that I could take away her pain that a child has to go through life ingesting all types of medication and hoping and praying one would make her feel better.
    Christine I want to personally thank you for explaining Lupus in the manner you have to make us all aware that even though on the outside you look fine but the inside your in so much pain.
    Thank you!

  • Karen Supert

    Just a wonderful way to explain to people. It is so difficult to make people and family understand what it is like. They think you are “tired” and want to sleep. I try to explain, what if you had to go the the bathroom to urinate. But, you literally don’t know if you have the energy to get there. It sounds crazy, but it is so true. I love the spoon theory. Thank you and best wishes to you.

  • Deidre Elizabeth

    I wrote a book of poetry some years ago called Spoon Theory: A Rhetorical History.

    I also have suffered with my own mental illness fir many years.

    Write me and I’ll send you the PDF.

  • Jo Good

    I’ve tried to explain to people how I have to ration my energy and pain tolerance, after 10years with RSD. But I’ve never seen it explained better than this!!
    God bless you!!

  • Tammy Lester

    This is so perfect, thanks to the writer for sharing.

  • I wish I had of seen this before I went on a trip to Rome with a so called friend. She turned into a person I’d never seen! I’d known her for about five years. As soon as we got to the airport she ran me hard. I’d been up for nearly 36 hours by the time we finally arrive at Da Vinci airport, but still she ran me, even as I begged to slow down. It wasn’t until we’d arrived at the apartment we were staying that I realized I’d picked up someone else’s suitcase. And I began to cry. I was beyond tired and even my hair hurt! But everywhere we went she walked fast…all the while I begged to slow down. Then she turned on me and in a sharp tone said…This is how I travel, you need to keep up. This was her 8th trip to Rome in one year and my first trip to Europe! But I was trying to explain to her how I was feeling..the pain, fatigue…she just dismissed it with a shrug of her shoulder and said, “hm, you don’t look sick”. Then told me in front of some other people, “After laying around and never doing anything I’m going to have you in such good shape”. So… I cried for 3 straight weeks. And she is not my friend anymore.

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