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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  • Thank you so much for putting this together with so much thought – do I have your permission to pass this on?

  • Spoonless

    I grew up with a mother who had to count her spoons. When her friends wanted to go out she always had plenty of spoons to spare, but when it came time for us to go out it was always an, “I’m sorry I’m just not feeling well.” Every hospital visit became her last, “This is it, don’t know how much longer I’ll make it” Its now over 15 years later and she’s still saying: This is it! Well, when exactly will it actually be “it” ?!?!? I never denied that my mom was sick, its pretty obvious that she is sick, but she has let her sickness become her. She is defined by her sickness and truthfully it is draining to listen to her talk about herself all the time. It is draining to hear how much more her friends care about her than her own children do. It is draining to have to detach yourself from the thought of your mother dying b/c you have spent more than half your life preparing for “IT.” It is draining to watch a person seek sympathy and pity and then be mad when people give it to them. It is draining to hear about someones disease day in and day out. It is draining to be the child of a sick parent, sometimes it leaves you spoonless!

  • April

    TYVM for putting into words what I couldn’t successfully do myself. Going to share this w/my family.. I also have Lupus, RA and Fibromyalgia and somehow managed to use up all but a very few of my spoons for a month now.. Can barely get out of bed for simple tasks and have to take extra steroids once a week just to get housecleaning and laundry done.
    Because in alot of cases our illness isn’t as visible or common knowledge as say cancer *which they now are testing nodes they found under my arm thinking they’re something called Hodgkin’s Lymphoma?* people have a tendency to simply not believe we are ‘really sick’ regardless of what the Dr’s say… You brought tears to my eyes knowing that I’m not the only one w/family/friends that just don’t ‘get it’. Again, TYVM <3

  • This is so visual and tactile. I usually use a bank account to represent energy, when it’s gone it’s gone. I have MCTD and try to explain it but analogy to Lupis, cousins. It is very dificult to explain to anyone who does not have or has never experienced what it is like to have a chronic disease. Thank you for this.

  • Danielle

    I actually cried when I read this. I’m a 25 yr old single mom with a 1 yr old baby. I have Crohn’s Disease, Hidradenitis Suppurativa, Chronic Lyme, Pustular Psoriasis of the hands and feet, and Adrenal Fatigue from all the Prednisone I’ve been on for years. I want to thank you for sharing your analogy with everyone. Maybe showing this to people in my life will make them understand a little more, or even if they dont, a least stop and think about how it is to live (or try to live) my life. It even made me stop and really think about how much different my daily life is compared to a healthy person. It kind of upset me to think about it. I have always had such a “whatever” attitude about my health problems. I try to act like i’m ok because i’m tired of defending myself when people tell me “what else is new, you never feel good” and get upset when I cancel plans or sometimes can’t handle my responsibilities. I hope using the spoon theory to explain will make my relationships with friends and family better. Thank you again and take care. 🙂

  • Annabella

    Thank you so much for your explanation…..this its far more effective than the putting marbles from one jar into another.

    I do realize that my health has become more deteriorated in the last 18 months….by doing a little shopping and using the trolley to lean on and preparing a meal for my visiting daughter and family from another state I had used all the spoons allocated to me for the next 4 days……I was in total agony. I’ve FMS and CF and a severe spinal disorder..I’m appalled in finding out how many people are affliceted with” But you don’t look sick” diseases.

    I try to keep my self busy by not dwelling into my own misery…I run Public Speaking clubs….and making agenda for the meetings keeps me busy. I was diagnosed 20 years ago, but in Australia medication are coming under heavvy scrutiny…only now I’ve been given tramadol

    Best of health to every one, I’ve learned a lesson…I will count my spoons from now on. Love & Light friends

  • Christine Ray

    I just read your beautiful explanation of The Spoon Theory. I was diagnosed with SLE & Mixed Connective Tissue Disease, along with the fabulous Raynaud’s Syndrome, in January of this year. Wow! Has my life ever changed! The Spoon Theory perfectly described my new day-to-day with chronic illness. I am actually sitting typing through my tears because now I have something to share with loved ones who have a hard time understanding all my new-found limitations. Bless you, Christine!

  • Barbara

    I can completely relate to “The Spoon Theory”. I was diagnosed with severe RA 9 years ago. I am still working full time; most days it is difficult to get “moving” first thing in the morning. I see myself as a “shell” of my former self. I miss “me”; the “me” who was like the Energizer Bunny.

    RA hit me like I would have run into a brick wall. It has slowed me down but I will not let it stop me. That is not an option.

  • Tatia

    Thank you, thank you, thank you!!! I have been trying to convey these thoughts for the last 10 1/2 years. I’ve lost jobs and actually had a manager tell me that I “don’t look sick…nobody’s that sick!” Well done.

  • What a beautifully written and easy to grasp explanation. They should post this in hospitals or people who are newly diagnosed with an illness. Bravo.

  • This is amazingly accurate. Even though I produce a vlog and a blog and talk about it to everyone and have a youtube video with over 27k hits thanking me for putting a face to the pain, I still sometimes think I am the only one who feels this way. I LOVE the spoon theory. It’s the perfect way to explain Lupus when you DON’T LOOK SICK to them.

    Thank you for this!

  • Thank you so much for putting my life into words that can be understood by others. I have searched my brain for so long to explain how I feel every day and finally, this is it. I have fibromyalgia. I have had a severe down turn in my health in the last 2 years. A slow downturn in the 4 years previous to that. Your description is perfect and I am linking everyone I know to your site. Thank you!

  • Hi! This is a very good story and I actually cried a little bit reading it. I wanted to ask if it is ok just to link to this post on my livejournal and also my blogger for other people to read? I won’t copy the contents, just put a link to this page.

    Two of my friends have fibromyalgia and it is definitely one of those “but you don’t look sick” sicknesses 🙁

  • Thank you for leading me to that posting-It’s a very clear and good natured way to explain the choices someone like me (I have Parkinson’s going on 16 years) has to make-and how much you have to leave behind and how hard it is for someone who is not chronically ill to understand.

    I’m sending the link to some of my friends-they love me but they don’t understand how little I can accomplish in a day -and what I have to do to pay for it the following day. I’ve always been self reliant and still am, it’s just more difficult and I have to choose my battles carefully, and learn to ask for help. I was surprised to find it being discussed on LJ. I’m going to browse around looking for more info and discussions, so thank you again for the link-you made my day.

    And by the way, I spent 5 years as the caregiver of my schizophrenic younger sister-up until she passed away 2 yeas ago of cancer. I didn’t feel diminished by it one little bit. Somehow giving of myself , while it took a major bite out of my health nourished my soul and kept me in the world at a time when I wanted to withdraw. I have no regrets- she deserved it- you think people don’t understand chronic physical problems-just thank your lucky stars you are not mentally ill-I don’t think anyone not walking in those shoes will ever understand what that’s like.

  • Lynn

    Thank you – I have a few people in my life as well as myself who live with chronic pain. I thank god for those people because without them I would have no one I could “share” with that truely understands how I feel. I also am lucky enough to have “healthy” people in my life that try very hard to understand.
    This story will hopefully reach some healthy people and help them understand what it is like for those of us with chronic pain, and at the same time can reach some people who feel very alone in what they are going through because they do not have anyone to say I feel like that too.
    May everyone continue to find at least 1 spare spoon to make it through the day – or maybe just 1 person who can share a big ol spoon with you to help out.
    Take care.

  • Kat

    Thanks so much for this. I have Atrial Fibrillation (erratic heartbeat) and some days feel absolutely fine so of course I use up all my spoons then discover that those weren’t actually todays spoons, they were actually tomorrows packet and mislabeled.

    Just like others who’ve replied I look like a perfectly healthy “normal” 38 year old. Most days I can walk just fine, others my bathroom might as well be the ascent of Everest!

  • Casey

    Thank you so much for this wonderful explanation. Found myself recently disabled, debilitating spinal damage, extreme pain and huge amounts of medication, and whilst my friends are amazing, much as yours, because they are ‘well’ they can never really understand what its like to go from super athletic to ‘can i get up today’. My sister, who is beyond fit and sporty always used to have such patience when my back hurt, yet there was always a little resignation to her voice, always like she didnt think it could be that bad, cos shed never hurt her back. ever. then she pulled a muscle in her back and you’d think the world was ending, no one had ever been in htat pain. she learnt that when your back hurts, its not just your back oyu have issues with-standing hurts, walking hurts, sitting down, going to the bathroom, breathing, laughing, and suddenly she understood a micro amount of what its like to be me, and now i htink in future Im gonna direct people who ask me what its like, to this wonderfully worded explanation. Thank you so much for giving myself, and so many others a practical demonstration to use with our loved ones, it is so very appreicated.

  • Hana

    i just read this. I have bronchiectasis, and recently got a rollator. It is only with the rollator that people actually grasp how exhausting a disease it is. I, too, have been hurt by what Margaret rightly calls “dismissive remarks”. It can be so frustrating to explain that it’s not like I go to the hospital and I’m all better. Thank you for giving me a tool for explaining my life with.

  • Sheri

    Glenda, why are you minimizing the experiences of caregivers? Should caregivers use all of their spoons helping others, even when it leaves them with nothing left for themselves or other people in their lives? Should caregivers remain silent at all times, even when they are sucked dry? Should other people be selfless in response to other people’s limitations?

    I’ve watched my mother care for my uncle for years and I’ve seen what it’s done to her. She’s cooked all his food and made sure that he’s eaten, she’s washed all of his clothes, taken him to all his appointments, made sure that he takes his medication and a million other little things that he can’t do for himself. I see how she gets so upset when he hasn’t been eating or how worried she gets when he falls. I see how she has less time to spend with her grandchildren or to do the things she had always planned on doing when she retired. She’ll never go away for more than 3 days at a time, and even that is rare.

    Yes, it’s hard to be him. Yes, it’s hard to live with medical conditions that limit your functioning. It’s also hard to love and care for people who are limited. When you’re part of a family, everyone is affected. It becomes even more pronounced when others have “lesser” medical conditions that limit their spoons, too. Everyone has a responsibility to conserve his/her own spoons…please don’t cry “Selfish!” when they do.

  • I am speaking for those of us that don’t have someone to borrow spoons from. If someone chooses to be a caregiver then, yes, they can expect to lose some spoons but as you say Angie, it is the responsibility of every one of us to take care of our own spoons.

  • This is BRILLIANT!!

    I posted a direct link to this from my blog page, Facebook and Twitter. I KNOW it will help enlighten others, as it has me!!

    THANK YOU!!

  • Lyn

    Thank you, thank you! I have Crohn’s and it is so hard to put into words what I and my loved one’s deal with. You did it so perfectly! What a blessing.

  • Angie

    Glenda, I don’t really want to type it all out again, but do you have any thoughts on what I said in my previous post? thanks.

  • I am saddened to read what Sarah wrote on June 22. This is a very selfish outlook on other people’s limitations. Unfortunately it is what a lot of us hear quite often from family and friends, claiming we ‘suck the life out of them’. It’s unfortunate that even with this very clear and concise explanation that the selfishness lives on.

    This is exactly what we live with every day.

  • Michelle

    Wow, this is awesome. My sister has Multiple Sclerosis and has had it all her adult life. She has done some amazing things in her life and now that I understand even more of what her life has been like (based on the spoon theory) I admire her even more. She has recently had more setbacks and is struggling hard to stay independent. I think that I will share your article with all of our family so maybe they can finally understand what it is like to be her. Thanks so much for sharing this with us.

  • sam

    Thank you. I have FMS, and I’m crying my fool eyes out after reading this post. I’m going to share it with everyone I know.

  • Margaret Kinsella

    My son brought the Spoon theory to my attention. I’m very impressed as I struggle to describe my limitations to people around me. I’m told ‘you look ok to me’, ‘you can stand and walk’ etc. But Post Polio Syndrome and Late Effects of Polio don’t leave you with much physical strength and the fatigue hits like a brick wall. Even more of a problem is the fact that Polios don’t like to give up or stop – they always want to do everything! But now I know that it is the Spoons that run out – thank you for that. Add on getting older and there are even less spoons to begin with. However, just getting people in your life to listen to the Spoons theory would be a boon. Most people don’t want to know as it would take too long and as they often tell me, ‘well, everyone has problems’. This must be the most dismissive remark made to those with chronic and degenerative conditions that I can think of.

  • It truly is so hard to get your point across concerning your health when you look like the picture of health…you HAVE got to be your own voice and advocate… plain and simple. I love this website/ra for chicks. Leave it to woman to create this. We rock!!!

  • Angie

    I know I’m getting in on this a bit late but I think Sarah has a point. I have a mood disorder, and sometimes run low on mental spoons, much the way my chronic illness causes me to run low of physical spoons. My mother has the same mood disorder, to a greater degree, and yes, I end up losing spoons to taking care of her that I really wish I could have spent on myself.

    I can see why people would be upset about that – no one wants to be resented for something they can’t help. But there are two sides too. I don’t like being low on spoons either. I am willing to give my spoons to my mom, because I care more about holding her together than I do about my emotional state, but it is a sacrifice. And sometimes, I run out of extra spoons. When she’s having a breakdown and I tune her out, it’s not because I’m selfish with my spoons; I’m just out. I have no one to borrow from. If I need my last few spoons to make it through *my* day, then I’m keeping them, because much as I love her, I love her better when I’m not suicidal.

    That said, Sarah, I think it’s your job to regulate how many spoons you give away, not the responsibility of others to keep track of your spoons. They’re already watching their energy levels, they don’t need to watch yours as well, especially since they can’t know what they are. If you’re running low, you deserve a break to refresh yourself…but it’s up to you to give yourself that break.

  • Shari

    I have a disease that has no cure called Hidradenitis Suppurativa aka HS and this too could be subsituted for Lupus. I have tried to explain what I have to people but sometimes they just look at me like I have 5 eyes on my face (husband included). Now I can explain my bad days with the “spoon” theory and perhaps they’ll understand what I go through in a more understandable (to the “normal” person) way. Thank you for this story to help us all (with chronic or disabilities) explain how each day is for us. I lose a spoon as soon as I awaken each morning with just the worry of when my next flare up will happen & how bad will it be…so I’m always a spoon short. May God bless each and every one of you who have to count spoons each day.

  • thank you! I want everyone I know to read this. It is my life exactly.
    Take care and be well

  • Megan

    Thank you for the story. People look at you and think you are fine and assume you must be just making a mountain out of a mole hill. Unless you have a chronic illness (I have Systemic Scleroderma) you don’t have any idea what it is like. The spoon theory is as close as I think you can get to understanding what it is like. And as far as the previous comments where us “unhealthy” people shouldn’t take advantage of “healthy” people and steal some of your daily spoons. I only hope that you don’t one day find youself short on spoons and look around for some empathy not sympathy from someone with more spoons than you. One thing I have realized with this disease is that no matter how much it has taken away from me I am blessed with the one thing it has given me. I have learned not to take anyone nor anything for granted. To be given one more day with your children, husband, friends, nature, food and laughter is such a glorious gift.

  • Jany

    Hi, my name is Jany, I am 19 years and live with Multiple Sclerosis.
    I got diagnosed 3 weeks before my 18th birthday in 2008.
    7 months later I was in a wheelchair, and now 10 months later, I fought my way out of it.

    I am so amazed by this, I showed this to my MS-nurse and now in our hospital they give the spoon theory to people who want to explain how it is to have MS to family and friends, but don’t know how.

    I use the spoon theory aswel, and people are always out of words when they read it, and admire my strength a bit more.

  • Linda vdMerwe

    Thank you for this, Christine. A perfect description of my limitations. I’ve spent years trying to ‘convince’ others that my pain is all encompassing, my fatigue debillitating, etc. I have reached the point that my condition ‘is what it is’. If others do not understand it that does not mean it does not exist.
    I know that it’s real. And only I can manage it. I no longer ‘debate’ the validity of my pain.
    With my acceptance of this disease has come respect. From me for my body, and from others for my demeanour. Whether I am able to do something for somebody or not, is no longer negotiable. If I have the strength it’s a yes, if not, it’s a definite no. And it’s only taken me 23 years….lol.

  • Cat

    Christine,
    I have used this wonderful story a lot already to try to explain to people how it “feels” to have a chronic illness. My husband understands (a little) and most of my friends all seem to have either fibromyalgia or even a wonderful newer friend of mine who has Lupus as well. THANK YOU for this story and permission to use the spoon shorthand to explain when I am just wiped out. We have never met, but I feel honored to be your “friend” on FaceBook. I seem to have been borrowing spoons this week from other days since I spent yesterday in bed and I’m trying to fnd hidden spoons to get through packing for a visit to the beach for a week which starts tomorrow.

    Love you from a distance!

    Cathi

  • Wow- Good Theory!!!! I am still in awe at how well that fits into my life and I am sure many others .
    I have Rheumatoid Arthritis and am limited to what I can do. I never imagined I would have this and let me tell you when you lose your healthy status it does damage to every aspect of your life. Explaining to family & friends is difficult especially when you know they dont have a clue and how could they ,its not them. Thanks to your “Spoon Theory” maybe we can all relate to one another better! Thanks for sharing …

  • Darcy

    This is awesome Christine! I am a care coordinator at a clinic, and I work with many folks with chronic disease. I just sent the link to your story to one of my patients with chronic fatigue, and I know she is going to relate to this. It is so helpful for people to be able to express how they feel about their condition…and so difficult!
    Thanks so much for sharing this! I have a feeling that it will end up going a long way around the world!!

  • I just read your spoon theory u just told my life what a great way to explain your illness RA/Lupus is awful ,just awful you really cannot plan anything,day to day.

  • Sioux

    I always used a bank account and it overdrafts, pending bill payments, credit lines, and hopeful surpluses (!) to describe how my life changed when I became ill (and stayed that way, year after year …sigh). I could substitute your “spoons” in my description and it would the the same thing.

    Tis sad that our experiences our so universal, but also glad that because they are universal, we need not explain certain things to other “sickees”.

    Thanks for sharing your story!

    Sioux

  • Shelli

    Thank you so much!!! I have lived with chronic pain for the last 8 years. This explains my life perfectly and there are so many people in my life who need to read this!!

  • Debbie Smith

    Thank you Christine and thank you Dawn. I was told by my sister that I was too needy. It hurts, because, I don’t really believe they believe that I have Lupus or fibromyalgia along with a severe damaged back and neck from car accident. I moved 1000 miles away from my grandkids my brothers and their children because my brother-in-law and my sister said they would take care of me. I have not seen my sister since January. I am so depressed. They have made a family reunion in Florida where I moved from in July and did not invite me as they did in Feb. Went to Fla without me. The reason, My sister wanted to spend time with HER Daddy and I would take time away from that because”you are too needy, Deb” I would be staying with my gradkids or MY brother who she chose not to see when she was there, I told her I didn’t even have to go ssee my dad. I told her and my brother-in-law exactly what my needs are before I moved. The heat literally made me sick to my stomache and I needed to move. I just didn’t know where. So I took her up on her offer. Now I am here in Delaware with no family. I am not allowed to see my nephew or neice. I told my sister that she is not my sister because my sister wouldnt do that to me. Oh did i mention she is a Christian? I hurt everyday most of the time all day and no one knows. Why? “Because I don’t look sick” Thank you so much for the this lesson. I hope I am not too late. Debbie

  • christine m. thayer

    i would liken it to a gas tank………..not getting a normal allotment of gas everyday & always running out b 4 the end of the day or b 4 i did everything i needed to……….& of borrowing gas from the next day & the next day & always being in the minus column……..i remember when i had an unlimited supply of gas or spoons whenever i needed them………it was like the bottomless coffee cup……..well, no more & i mourn the loss of something i didn’t value enough……….

  • Dawn Cooper

    Finally a way to explain how my life has changed! I am so glad I found this. When I was healthy and had plenty of spoons I shared them with whoever needed them. Now that my life has changed I do not have nearly enough spoons to do the basic things that so many take for granted. Sarah I would trade places with you in a minute. It is not easy for me to depend on other’s to share their spoons with me. Luckily my family members are not selfish with their spoons.

  • Traci

    Thank you so much!! I was diagnosed with Fribromyalgia and Lupus more than 12 years ago. I am now 44 and have tried for years to explain what it feels like to live as me because we all know – “I don’t look sick”. I used to tell people if I looked like I felt, they would have buried me years ago. But this is such a great analogy! Thank you for sharing it with us. I’ll be using this the next time someone ‘Really’ wants to understand how I actually feel and how I deal with this on a daily basis.

  • Michele

    The link to this article was forwarded to me by my daughter, who has Chiari malformation, and many physical restrictions. she has had so many surgeries in order to minimize the effects of this disorder and in order to just keep going. Her father also suffers from chronic disabilities from a construction accident. I see first hand on a daily basis what it takes them to live productive lives. This is an excellent lesson to those who have never suffered chronic illnes, pain or disability. Thank you for saying it so clearly!

  • Sarah

    This goes for all humans. We all have only so many spoons. When I run out I use a fork. I don’t get to use spoons from people around me. The reason why it is so hard for the “healthy few” is that we also have a limited amount of spoons and sometimes the “sick” individuals in our lives are so needy for spoons that halfway through the day, we look down and our spoons are gone and we didn’t even get to use them. I think this happens often with someone suffers from an emotional or psychological stress. I am by all accounts health. But I find that my spoons are often not used by me but by my “sick” mother. This makes me angry and less likely to share my spoons. I know being chronically ill is difficult. But no one has it easy. No one gets a free pass in life. But think about those around you and how you may be taking away their spoons. The thing about being healthy sometimes is that you loose the luxury of being able to think just about yourself. Because your “healthIER” you now have the responsbility to care for those around you, who many days seem to have the luxury to think only of themselves. Just be aware of how many spoons you take from those around you.

  • Kathy Grassi

    WOW! Thank you sooo very much for this lesson.. I don’t think I will ever forget it. I am blessed to have enough “spoons” now but see people everyday that don’t. This will help me to be more understanding.

  • Andi

    Thank you for putting into words how you feel, I have struggled to explain to friends and family how I feel every day and you’ve hit the nail on the head and now I hope they are starting to understand me on a day to day basis. I am 33 and have been diagnosed with CFS/M.E and with two young girls I really struggle to get up every day let alone do lunches, clean uniform, make sure books read, homework done. Thankfully my GP took me seriously when I went and straight away did all the tests they could and then came up with my diagnosis, i’m still trying to work out what my limits are and how many days after I will crash because I decided to walk to school and not drive…. Your theory is fact and the more people that take notice the more people with the dreaded hidden illnesses will be understood 🙂 xxx

  • Heather

    I’ve read this before, but I think the time has come where it will really help me personally. My mother has been in a rehabilitation center for a few months, and is coming home this week. Trying to explain to her that her body is fragile and she can’t do everything she used to right away… well, I’m her daughter, and I don’t think she likes to admit that sometimes I know better then she does. I hope the Spoon Theory will help her understand why she needs to be careful about pushing herself too much too fast. So thank you, thank you for putting this out here where so many people can make use of it.

  • Bertha

    thank you so much! I’ve lived with rheumetoid arthritis most of my life, thats exactly how i HAVE to plan my days! and if i run out of spoons, well i just have to find the strength to make it through the rest of the day! Its really really hard sometimes! Thanks again!

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