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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  • PAM

    Thank you for your eloquent words and such a wonderful explanation. I have struggled with people telling me I should lose weight (hard to do when on steroids), get more exercise (push thru the pain and it is ‘no spoons’ for a day or two), do this and do that to make the pain go away. It just doesn’t. I am grateful to even be here but I have also had to learn how to do things “my way” which garners strange looks at best. I have degenerating disc, had cervical fusion of three discs and 4 vertebrea, my left knee was replaced (the right one needs it now) neuropathy in my hand and feet and it all goes back to an automobile accident that practically killed me. I broke both my legs (top and bottom), dislocated my hip and shoulder on one side, skull fracture, suffered from whiplash had several broken ribs and chip fractures of several bones too. I DID get put back together again but like Humpty Dumpty, I was in more pieces than the original packaging called for! Yes humor is my weapon of choice but sometimes I just want to crawl into a hole and pull it in after me. BUT, as much as it hurts, I know that any day I wake up on the top side of the dirt is a good day! I think I will check my spoon drawer and tuck several away in my back pocket!
    Thank you again and “God(dess) Bless Us every one” to borrow Tiny Tim’s line…..

  • Megan

    This is the best explanation I have heard so far for describing living with Fibromyalgia. I’ve been living with FM for the last 12 years since I was 12 years old. Especially trying to explain a chronic illness to young people who really just don’t understand, this has really helped. Thanks!

  • Rena

    I can most certainly identify with this and I’ve yet to come up with as good an explanation as this for my MS, RA, degenerative disk disease, partially fused spine, chronic pain, poor vision & hearing, on and on. Thanks for giving me something that I can use to explain to my family & friends & even strangers who just don’t understand even after all these years of being with me. It has given me hope to let them know that “but you don’t look sick” doesn’t mean I don’t feel like hell all day long, have good & bad days or good and bad in the same day, that I can’t go the function or activity we had planned and now they’ll understand why. I thank you from the bottom of my heart for a wonderful explanation I can pass along to help me from hearing that sentence again. Thank you!
    Warmly and respectfully,
    Rena

  • judith copithorne

    Great article. I would like to perhaps share it on facebook. How do you feel about this?

    This really is an excellent article. I have Chronic Fatigue Syndrome and this is a great way of de-abstracting an more or less invisible illness!

  • Krista

    Thank you for writing this.

  • Debbie

    I have Parkinson’s Disease, early onset case — I am now 53 years old, I started to notice some symptoms more than 10 years ago, but I was unable to get anybody to start testing me for the possibility for more than three years. After that, my then husband kept pushing me and pushing me to keep up at the old pace, claiming that if I failed to keep up, that meant that I was giving up the fight to “beat” my disease. The talk about P.D. being a progressive disease without any known cure or even anyh stabilizer, went in one of his ears and out the other without touching any gray matter. (This attitude was one component that he used in his campaign to break me down to humle chattelship; with some help from others, I broke away from him.) For a long time, my condition was considered to be an invisible one. I tried so hard to emphasize what I still could do — I’m still trying to play that game, but I realize that I am too often trying to fool myself. It frustrates me to no end to have to command myself to do things that other people do without giving the matter a thought. There are some things I want to accomplish despite P.D. Like your game of spoons illustrates, I have off some other things if I want to achieve those goals. It shouldn’t have to be that way! But every morning, I have to make myself crank up for a day that may or may not see me accomplish something.

    I hace one of those little magnet signs on my refrigerator that reminds me

    THINGS TO DO TODAY:
    1. Get up
    2. Survive
    3. Go to bed.

    Many days it feels just that way.

    Oh, well, I guess I must be still alive in order for any of this to still bother me

  • Eugenia

    A dear friend shared this w me and now i am sharing w eeryone. This applys to ANYONE suffering (correction) living w a disability it is the BEST explanation of what you (I) go through EACH & EVERY DAY i was so impressed by this i had to share it on my wall. WOW!!!! I have suffered w fibromyalgia for over 17yrs. now and most recently (last 3yrs) chronic migranes and to add insult to injury; IBS & Reflux. So i’m a mess and just reading this i saw my day to day life…i am so greatful to have a friend who also suffers w Fibromyalgia and so much more thoughtful enough to send me this link. It is 12-15th and xmas is 10days away and i haven’t even felt like it. I listen to xmas carrols all day, on purpose, at work and in my car to try to help me find cheer and my husb. was sweet enough to put our tree up he een decorated it for me. But all i can think of is when will i have the time necessary to go shopping for gifts when after working all day i can barely drive myself home. Then there is the wrappin gof the gifts, writin gof the cards not to mention the Xmas dinner i voluntered our home for Xmas. Who is gonna clean it???? I RAN out of SPOONS days ago. I feel like all i do is get up daily in agony WORK in pain and go home to be so spent of energy and in such pain that i can barely walk the dog and than finally the end of the day comes where i am tortured w my sleep apnea machine and the pain from just sleeping on ones side to long for what just to get up and do it all over again and again. My life has no SPOONS left!!!!!!!

  • Jill

    Thank you for putting into words what I’ve been trying to explain to others – and to myself – for years. I was diagnosed with fibromyalgia 2 years ago, but actually had the symptoms many more years than that. I got the old “you’re just stressed” diagnosis from multiple doctors until my therapist suggested I had FMS. When I researched it, I went back to the doctor and told HIM what I had. I’ve read everything I can find on the Internet and countless books. But never has anyone explained what it’s really like day-to-day to life with a chronic illness – until your article. I’m going to take a copy to my rheumotologist and suggest he share it with other patients.

    Again, thank you for your gift,
    Jill, GA

  • Christine,

    First I want to offer my most sincere thanks for putting into words what I have tried so many times to explain. Your analogy is eloquent, inspired and has a simple brilliance that tops every other attempt I have ever heard. The first time I read it I couldn’t stop smiling through my tears…wow…this girl is speaking from my heart! I sent it to my whole family and all of my closest friends…”this is the right answer to what you’ve all asked that I’ve never been able to come up with myself…” And tonight I read it aloud to my boyfriend and barely got through it I was so choked up and at the end, as I looked at him with my face soaked with tears, he said simply, “I think I finally sort of get it.” I will never look at another spoon the same way again. I will be grateful to you forever. And I will share your words far and wide. Thank you so much, and may you always have a spare spoon for the tough days. 🙂

  • Belkis

    WOW. I have never seen such a perfect analogy in my life! And I am 50 so I’ve been around a bit… I have Fibromyalgia, Degenerative Disc Disease and Spinal Stenosis. I understand about pain, exhaustion and good days vs. bad days. My youngest child is 18 years old and actually gets angry when she sees me cry at times when I can no longer hold it in. I will attempt to use your explanation of why I literally have to ration what I do in a day. Thank you for your creative wisdom for one so young.
    Respectfully,

    Bel

  • David McIntosh

    A beautifully written piece, with vivid and relatable experiences. I, at 18 with severe Lupus, am amazed how little a faction of society can even pronounce the word, Lupus.

    I feel a bit overlooked, as a people who have a serious, incurable, potentially life-threatening health issue.

    I appreciate the piece.

    Warmly,

    David

  • Terry L

    I am so grateful to have found this. I am also grateful to be able to have family and friends that do understand. I fight depression everyday – not just because I hurt all over and am so tired all the time. I can’t tell you how many relationships I have lost due to trying to simplify my life. I am just so frustrated that I don’t have the energy to clean my hose more, or not be tired from driving somewhere or take care of other things or persons properly. I save spoons by trying to have a more relaxed day, before I have something that HAS to be done. My husband is absolutely wonderful about coping with me and my lack of being a normal person. He tries to humor me, takes my dirty dishes to the kitchen, has taken over grocery shopping and p/k up the mail. We both understand I need to walk more. But I get wore-out so easily. Because of this, I am so grateful I haven’t gained any more weight. I have bad bunions and flat feet. The bunionectomy I had years ago didn’t heal right, so my toes are all f’d up. Have OA everywhere – feet and ankles, knees, hips, whole back, shoulders, elbows, hands/wrists/fingers. And of course the muscle pain, stiffness, and fatigue of FM. I had one knee replaced 18 mo ago, but now my other knee is falling apart. Earlier this year I had to have 5 out of the 7 cervical vertebrae fused due to degenerated discs. I have been diagnosed with Bipolar II due to my past mania type activity. Since I haven’t worked in 10 yrs, I have anxiety due to not being able to do all the stuff I used to. All my flower beds and shrubs have run rampant since I can no longer keep them tidy. God has given me a green thumb; I have plant and trees having babies, that are now too big to transplant out of the flower beds. I am so frustrated w this. I am thankful I can save spoons to be still able to use my riding lawn mower. I was unable to water my grass during this summer’s severe drought and am p’d off that most of my grass is dead ( we have 1/2 acre). Any how, I am rambling. My trick to survive is to take one day at a time, one hr. at time if necessary. I thought I coped pretty well w/ my alcoholic drinking, mania problems, and medications. It’s a miracle that I’m still alive. I have accepted my lot in life, and am also recovering as an alcoholic (sober) and adult child and spouse of alcoholics. I pray for everyone to try and enjoy life when you can, and try and take care of the body that is failing us. Yes, we won’t die from fibromyalgia, CFS, depression, mania, etc.. We are children of God and we need to do what we can to take care of ourselves. God doesn’t make junk. I never had any idea what I wanted out of life as I was growing up. I felt different from others. Now I accept I am different physically, mentally, medically, from “normal” people. Now I understand how others with chronic disabilities and illness accept their lot in life. I also have had to cope with taking care of sick parents, and then their dying. My husband has all his chronic pain also due to severe OA. WE have survived !
    GOD BLESS EVERYONE ! HE will help if you just let HIM ! AMEN !

  • Belasco

    Thank you, a million times, thank you. I have Fibromyalgia complicated by some other physical nonsense. I also have 3 kids and an amazing husband that want to understand, and can’t. I’ve sent them all links to this…I think you’ve given our family a new vocabulary. Again, thank you!

  • David

    Thank you very very much! I feel recognized and encouraged and
    will try this explanation on my Family.

  • Megan

    I am so unbelievably glad I stumbled across this story! I was recently diagnosed with SLE…this past September…and have since, lost relationships with two of my cousins, who I considered to be like sisters, because they did not understand. Nor did they seem like they wanted to understand. They just assumed I was making excuses for not going out and doing things. And I have also learned that other family members have been talking about me behind my back. ITs so sad when your family…who should be at the top of your support group list…is talking badly about you and thinking your are a sorry excuse. I wish I had read this story before all the nasty things were sad, maybe then our relationships would have been spared…So, thank you again, for writing this story. It really clears the air…

  • Dave

    I know how hard it is to expalin to people your health problem. My solicitor is trying to mak me travel over 400Kms away and doesn’t understand I can’t do it and if I do I’ll be ill for days. I tried telling him just doing the 4km round trip down town to so a few tasks results in me being in emense pain and physically exhausted for hours and needing to take strong pain medication and sleep. A family member seen me mucking about with my two year old grandson and said you had enough energy to do that, which inferred they felt I was putting on my illness. I have yet to get use to planning my day around my energy account as it frustrates me. Before my hypogonadism and fibromyalgia I was doing a PHD and was doing thirtten hour work days and sometime having to drive 400 kms then do an 8 hour work day. I did this with little problem. Now just enjoying myself with my grandson exhausts me. The otherday I went with my grandson to see the Wiggles and was exhausted and in extreme pain for three days afterwards. Mothernature can be cruel. I believe in karma and I feel those who doubt my illness will learn for themselves one day what it is like to be like this.

  • Blair

    My mother suffers from lupus as well as a few other autoimmune illnesses. I have fibromyalgia. This has explained exactly how My mother and I feel at times. What an amazing story to help others understand cronic pain and other various disabilities.

  • Nicci

    I’m heavy and battle Hashimotos. RA’s on the way along wtih PCOS. I can predict the rain coming by how my knees feel and there are days when I’m inside and I need a coat, mittens and a scarf on OVER top of my sweater and sweat pants, three socks and slippers..lined. I’ve been told I’m “pokey” and “Lazy” and “dont get enough sleep” or “Sleep too much” (pick one).

    When I’m having a good day I tackle things like a maniac because I dont know when it’s coming again. When I’m battling, I’m lucky if I have the energy to toss something in the trash.

    I’m not lazy. I work three jobs-main one is third shift. I swim at the gym’s pool at least an hour/day 5 days/week. While I’d love to say I do a mile in laps…I’m lucky some days if I do one lap of walking slowly while making a beeline for the hot tub just to warm my miserable bones.

    I take care of my father and mother, taking them to their appointments and making sure our illustrious (that is a sarcastic adjective) medical personnel dont screw up their healthcare…and since I fear and hate death and loss of my loved ones and my family is so small, the stress of this past surgery for my dad really put it’s toll on my energy levels.

    Ignorant comments abound come in one ear….and IN the other! Thank you for writing this and sharing with us. My hope is that more will read this and either 1. Be encouraged to share their own and gain more awareness and respect for their carrying their spoons & 2. The ones that dont do not remain in their ignorance…and maybe we’ll stop being so damn critical of others by looks alone and get to know someone-perhaps someone with an AI disease- as a person worth knowing and loving and befriending….and Those who have a disorder realize they are NOT “pokey” or “lazy”! <3

  • Linda Hutchinson

    My daughter brought this to my attention, we are both fighting medical conditions, hers are all hidden, and I have never read an more ap description of our daily lives! I have a spinal cord injury(T-12), C.R.E.S.T., and degenrative disc disease of the “c-spine”. My daughter has Epstein-Barr , R.A., and Lyme disease, that have been diagnosed. She is the mother of a 6yr old girl, and a 4 yr old boy. I have always searched for a way to discribe & explain how I plan my days, and in some cases why I use a powerchair instead of a manual wheelchair, which is that my doctors are trying to help me remain as independent as I can be, for as many years as possible. Thanks to my cirvical disc disease on top of my SCI, that time frame is shrinking. In fact my time at the keyboard for today is about done, pain and stiffness is rapidly setting in. Thanks again for wrapping our daily lives up in a nutshell.

  • Ana

    Thank you for your posting – it’s 3am and in so much pain I cannot sleep for the life of me. I have osteoarthritis throughout my spine, moving into my spinal cord, loads of back injuries and just recently got into a motor vehicle accident so back to square one. It is so absolutely frustrating to explain to people that I am tired, need to lie down, cannot fold the laundry today…in the end I just don’t want to see them.

    Everyone out there – I urge you for muscle movement to just slowly try yoga – restorative, hot yoga if you can with modifications always…but it really does help a little. Please move.

    Thanks for the posting….XO

  • Susan Stewart

    Thank You I have Multiple Sclerosis ,Pernicious Enemia B12 deficiency, hypothyroidism, Autonomic neuropathy, Peripheral neuropathy, oh I could go on and on.. BUT I still look good! BIG DEAL!!!! Its like I am from another planet and my gravity is 10 times what most people have… I can barely lift my legs to walk…But sit me down in a corner table and I sure look Good.. OMG I LOVE YOUR SPOON THEORY!!! THANK YOU THANK YOU THANK YOU!!!!!

  • Kathryn

    I have Arachnoiditis with severe chronic pain as a result. No one knows how much effort it takes each day to do simple things. My spoons are limited as well. I appreciate this article very much. It tells my story as well. Thank you.
    “But you look so good” is often said to me. I don’t bother to tell many about my condition because I do look so good. Now maybe I can tell about it without anger when people just don’t “get it”

  • Sharon

    I have a brain injury. As some might say, I did not hurt myself enough to have any physical evidence. That makes it harder to get some people to help you. This is something I deal with everyday. This is a perfect way for me to help people understand how my life is. Even though I am doing better-probably because I keep track of my “spoons” people assume I am all better. It doesn’t work that way.

    Good luck to all of us who live with this throughout our whole lives. And thank you to all those who try to understand.

  • Barbara

    I LOVE this story and want all of my family and friends to read it!!!
    I broke my back quite some years ago and that started the “spoon theory” for me. At this point I had only lost a few spoons. I then developed arthritis thru my entire spine and was diagnosed with Bi-Polar Disorder and had to go on Disability. Half of my beginning spoons were gone. Now I have been diagnosed with lung cancer (Stage III) and my remaining spoon supply was cut in half again. I remain thankful for my spoons because I know there are some who have less than I do. I am also VERY DETERMINED to get some of my spoons back!!!

    Would love to print a copy of this for all of the people in my life, but of course will not.

    I am going to find the money to buy a copy!!!

  • Thank you so much. You have explained beautifully something I have trouble explaining to my friends and family. And some days my spoons turn into forks half way through the day. I will be forwarding this link to quite a few people.

  • Geminii

    I’ve just re-read this again after several years. My daughter who is now 28 has had ME since she was 19 and has been in remission for a few years – but no longer. She won’t slack on work but her company is good so once she has done the office stuff she transfers the phone to her mobile and carrys on working from home from her bed.

    After suffering for so many years, she knows that she has to rest but hates that she can’t cook tea for her and her husband, she has to lie down, going out sociallly isn’t possible again now.

    I want to be there for her, to make big pots of soup for freezing but she wouldn’t appreciate it as it would mean giving up my job and moving several hundred miles – she would get stressed and stress makes her worse

    My heart goes out to all the people that have various debilitating ilnesses and to the families that can only look on helplessly

  • Mishy

    The Spoon Theory is a really good way to describe to others what it is like to have a chronic medical condition. Especially for those ‘others’ who are born with a silver spoon in their mouths and have house cleaners and an ironing lady and 2, 3, 4 cars and they don’t even have a cold let alone a (genetic) progressive neuro/autoimmune/rheumy condition.

    I have Dopa Responsive Dystonia, autoimmune or virally mediated brainstem and cerebellar demyelination, Migraine Variants, SLE (Lupus), Peripheral Neuropathy, Hashimotos Hypothyroidism and early onset Osteoarthritis. (And ulcerative colitis.)

    The vasculitis part of Lupus keeps the blood close to the skin and I often look nice and pink. The dystonia and muscle spasms gives me shapely legs. The hypothyroidism and partially paralysed facial muscles from the brainstem demyelination give me a smooth, young looking face.

    I drink rehydration fluid each day to keep by blood pressure up, take an hour to eat my oat porridge and try not to choke, drive my daughter to school while my body is very stiff because my levadopa hasn’t kicked in yet … and the office staff who check on student attendance wonder why my daughter is often late …

  • shelley

    I have lymphedema after having stage 3 melanoma. People just think I have a “fat” arm and chest. With me being heavy too they just chalk it up to that. Most days I can hardly lift my arm and am in constant pain. It’s hard for people to understand as I look “fine”. I am going to try to use this theory on my family and hope they understand. I have to choose wheather or not I blow dry my hair based on what I have to do that day. If I do it, I won’t be doing it tomorrow and possibly the rest of the week. Thank you for the awesome analogy and I plan to use it often!!

  • Roy

    I am 33 and I have just recently been given a dx of “inflammatory spondyloarthropathy” (reactive arthritis in the spine due to autoimmune disease). The pain/arthritis doesn’t stop there. It is in my hands, elbows, kees, feet, fingers, hips, legs. I have been to too many doctors to count. I have some more testing to go to narrow it down to a specific syndrome before starting treatment. This essay explains what my past 5 years have been like. It has progressed over this time and some days are worse than others. It is truly a blessing to be connected with so many others who “get it” to give and get support. Typing this reply just cost me a spoon. Best wishes to everyone!

  • Koski

    Thanks for this. This makes explaining why I’m late for school and can’t meet up with friends during weekends so much easier.

    I have rheumatoid arthritis and I very often lack the energy to manage through the week completely.

    I’ll definitely use this in my everyday life. <3

  • Kitty

    One of my friends that has a mental problem posted this on Facebook for me to read and it made me cry reminding me how difficult it is to explain a medical condition. Please hear me out: I am 26 yrs old and been recently diagnosed with Fibromyalgia, Chronic back pains and Chronic Migraines. I have an extremely hard time explaining to my friends that don’t understand medical things what I go though everyday. My sister has a 4 year old little boy and he is smart as hell but don’t understand why Aunty Kitty can’t go out side and play batman with him or just why am I always so worn out when I go over and hang out with him. I hope you don’t mind but I have shared this story with some of my friends and even printed a copy of it for my mother that doesn’t have a computer of her own and lives in OR. Thank you for sharing your story and take care of your spoons
    ***Hugs***
    Kitty

  • Joanne

    I have ms..I here similar comments to “you don’t look sick” but the one that really gets me is “just get more sleep” or “go to bed earlier” or “it could be worse” no kidding?? really?? I wouldn’t wish my illness on my worst enemy but a glimspe into my “day” would be oh so eye opening…it is so sad, the insensitivity of people, they just TRULY do not KNOW!! Many blessing and “better” days wished for all!

    Joanne

  • Kiya

    Great way to explain! I have always used the analogy of pop beads.. you know the children’s plastic beads that pop together to make necklace or bracelet? They also used them at Club Med’s. But, it takes so long to explain the silly beads … that my analogy goes missing(I chose them…because I can wear them and don’t have to worry about using energy keeping up with them…lol). So bravo to you…spoons!!

  • Ann Marie

    This is SO accurate!!! Thank you for sharing your story!!!

  • Lisa Norene Farrar

    Thank you for sharing this Christine. I have back issues & having had two spine surgeries I can relate to much of what you said on how feeling ill is. Not a day goes by when I do not have pain of one sort or another. One day it could be my lower back, another my legs or joints. And I truly know what my Grandmother meant about “feeling” the rain or cold weather coming! Yet I feel blessed every day that I can get up out of bed and see the sun shine, the green grass, people I love and even people I don’t even know. I know there are many people that cannot do the things I still can. I feel blessed when I can do like I did yesterday, go out with my best friend and just have a tasty dinner at one of our favorite restaurants. Days like that are few and far between and I’ve learned to cherish them. Your Spoon Theory is a wonderful way the explain how illness feels and having to choose wisely what you can & cannot do on any given day. I hope today you’re having a good day.

  • Ella

    Thank you for writing this. I have Depression, Social Anxiety, and OCD. It’s amazing how many people just don’t even understand that they’re real issues-in a stunning case of ‘but you don’t look sick’. This… is a good way to explain this stuff to people who have a tendancy to say ‘Oh, they’re just people, you’ll be fine’ or ‘just cheer up’ or ‘It’s not going to kill you if they’re a little uneven’.

    Thank you.

  • An Elephant’s Child.

    A briliant & simple explaination – thank you so much for sharing this x x

    As I have arthritis, which comes & goes without warning, so there are days, sometimes whole weeks when I can have all the spoons I want, but other days I have only one or two.

  • HOPE IMOGEN

    THANK YOU, now i can help my friends,those who care, to understand what it`s like living with 3 Lonterm major “unseen” illnesses FOR OVER 3O YEARS and the 2 extra physical ones i`ve recently developed as i approached my mid forties….MAY I PLEASE post this on facebook to raise awareness and funds/sales? God bless you, bless ALL of us xO

  • This explains how I feel and how my days are or can be at any given time. I live with the diagnosis of Fibromyalgia and may also have CFS. The CFS I will find out more on in my Jan visit to the Rheum Doc, she is awesome.
    Thank you for not only writing the Spoon Theory but for sharing it and your struggles and strength with the world!
    Some days a simple grocery trip can wear me out and I end up in a three or four hour nap. I hate that I am unable to do what I used to. Still working on acceptance…
    Boldly blogging and that is a beginning…

  • Vanessa O

    Thank You! Not only do I work behind the counter at a Social Security office, I also battle a painful disability that causes me to frequently become sick. The people behind the counter tell me things like you just don’t understand what it’s like to be sick..I say yes I do, then I get a “but you don’t look sick…” Thank you for publishing this story and putting it out there; I will be referring many clients to your story.

  • Vicki

    I am so Blessed to have stumbled upon this article. I have suffered with chronic pain for years. I lost a career that I loved and worked so hard to accomplish. After working at something for 23 years, it is so hard to let go. There has been so much anger, sadness, greif and pain in my life, it’s hard to find joy. It seems as though every time I go tho the doctor, I get another ailment: Severe osteoarthritis, degenerative disc disease, fibromyalgia, neuralgia, hypertension, pulmonary hypertension, diabetes, asthma, irritable bowel syndrome, and the list goes on.
    Depression, yes and anxiety at times. Thank God I found a site that can offer inspiration and understanding. Bless you all, to those who suffer everyday!!!!!!

  • Jennifer Wheat

    This is my favorite explanation for what I go through with Rheumatoid Arthritis. I say fatigued and people hear…I don’t know what they hear, but it’s not my all day, every day life. Now I send them to your website, and it’s like a break in the clouds. Thank you thank you thank you for getting across to so many some inkling of what living with this invisible monster is like…

  • Purchased 3 posters after reading this 3 times and bawling all 3 times…. Wish I could afford to buy more, as so many folks dear to me ration spoons everyday from chronic disorders of A to Z.

    However, I did post link to this site to spread the word further, and maybe share spoons with my friends & family I keep in-touch with through internet.

    Raising my spoon bouquet everyday
    with determination and faith,

    Lynn 😉

  • Kay

    Reading the Spoon theory has completely summed up my condition.

    I have Lupus (SLE) and its a nightmare trying to get people to understand!

    I would love a copy but unfortunately I can’t afford such luxury.

    But thanks so
    Much for sharing.

    Kay

  • Sweety, I love your theory and you made me cry a little. Me too, I don’t look sick. And this is awful to hear that sentence from people I know or don’t know. Take care!

  • Crystal D Choate

    THANK YOU !!!

  • Tammy

    My best friend just sent this to me and I can’t tell you how perfect the timing was. 4 of us in my immediate family have Lupus. Fibromyalgia with food allergies and so much more. We have been dealing with these chronic illness’ for more than 15 years, not total but each of us separately. We have all heard “But you don’t look sick” way to often. Thank you for this article, made me cry and helped my partner to understand a little more.
    All the Blessing in the universe for you and others like us.

  • Marguerite Paizis

    Thanks for this truly inspired explanation – I have made my family and friends read it so that they can begin to understand how debilitating diseases affect us all. I think we can all relate to it and I hope those who still feel so guilty about not getting everything done in one day will be encouraged to simply do as much as one can and leave the rest for another day – or better still for someone else to do!! And never keep going until the last ounce of strength is used up! Stop before you crash. May God grant us enough strength and courage to cope with each lovely new day.

  • Marabelle

    I get that a lot, “Well, you just don’t look that sick.” Been to dozens of doctors over the years. Have about 27 real health issues. Every specialist just deals with them one at a time as they come up. But no one has any idea what’s wrong with me. One of my core docs joked and asked if I could just get a new body, and I told her to sign me up.

    I’ve been sick since I was 20, and I’m only 40 now. I fall in front of friends because my legs give out. I bump into things. My legs are covered in bruises. I can’t remember things. Can’t walk well sometimes. Some days it’s good and some days it’s pretty bad, and I live in a 3-story house with 2 flights of stairs from the street to the house. Might as well be a mountain. I didn’t even let close friends or family in on my very real medical issues until this past year, and even my own husband didn’t know it was that bad. I didn’t want anyone to judge me, and I don’t want any sympathy or pity. When your dna fails you, it’s no one’s fault.

    I no longer wear clothing with buttons, or ties, or anything complicated. I have five pairs of shoes, and used to have fifty. I leave jars lids half-on because it’s too hard to unscrew them. I have so many work-arounds now, and it’s been so many years, decades even, that I no longer have to think of why I do that thing that way and not another, and I forget to mention those things to any new doctors, because those work-arounds are all normal… for me.

    I hate having to explain how tired I am, and how it’s just easier to do everything my way and take it easy. I don’t even think about it anymore, because it’s all normal for me. I wonder if people think I’m lazy, or a procrastinator, or worse. But most of the time I’m too exhausted to care, and just glad I got one load of laundry done and one room totally picked up.

    Thanks for the article. I can use that analogy to explain it all better, hopefully.

  • Maria Sellers-Loxley

    This explains exactly how my son feels most days, although he is only 11 and had EDS type 3. If only we could do this to all the people he comes into contact with, who just tell him to carry on as he was ok 10 minutes ago!!

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