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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  • Spamalot

    Has she gone to about.com/thyroid? That is a great site with a lot of info on Hashi’s. Mary Shomon also has a book for sale which gives you her story and information about thyroid diseases in an easy to understand language. I’ve had Hashi’s for 35 years, and wish that there was a site like that then!

  • Mandee

    You explained it very well with the flu analogy. Good for you….most people just don;t get it or even try to understand chronic pain and having to live with it day in….day out.

    Sorry to hear about your suffering- I totally get it I have Chiari Malformation; a brain disorder.

  • Mark Whitley

    I’ve got fibromyalgia along with migraines & arthritis, had to retire early at age 55, and live each day one at a time, most of the time in pain, many days really nauseated even while taking many Phenergan tablets at a time.
    I’ve found that ginger chews candy helps quite a lot but some days I’m just tossing my cookies no matter what.
    It’s so difficult trying to make healthy people understand how debilitating it can be on a daily basis. One lady I worked with admired she couldn’t understand migraines because she had never experienced even a headache in her whole life. Can you imagine how wonderful that would be?
    I finally came across a term that somewhat fits, ‘Malaise’!
    I asked one person if they’d ever had the flu, real flu like the swine flu etc. They said yes, I then said then think about how much pain you’re in, how even the hair follicles on your head hurt, and especially how bad you felt like feeling like you were dying that you felt so bad that dying would be a relief.
    They got that.
    Thanks for giving us one more way to help others to understand how our lives are such a daily struggle.

  • Caitlyn

    Thank you so much for this. My twin sister was very recently diagnosed with Hashimoto’s Thyroiditis and has started her medication. Since she hasn’t dealt with it for long, she’s still learning how to cope.
    She ran out of spoons today. I came home in the early afternoon to find her in bed, yet not sleeping. Note that we are only 17 years old. She is fresh out of energy. Hopefully we can learn to manage her “spoons” as well as teach other’s what it is like to have a chronic illness.

  • SFGaymerMatticus

    OMG I’m sitting here with tears just STREAMING down my face. I have chronic back pain (car accident) and a mental health disorder. Every day I have to try so hard just to be able to go out of the house and it almost never ends well anymore. I’m starting to crack up and reading this really helped. And I’m only on like the 6th paragraph or something right now:

    “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.”

    Totally lost my shit. Thank you, Christine!

  • Cathy Montoya

    I got diagnosed with rheumatoid arthritis in 2010. Thank you. You put our struggle into words. Thank you.

  • Nancy Keehn Silvernail

    I don’t have lupus although I test posiitve for it. What I do have is Sjogrens Syndrome, RA, fibromyalgia, lymphedema from a mastectomy, type 2 diabetes because I’ve been on predisone for over 25 years, asthma (mild-I think), neuropathy and almost total numbness in both my feet from the Sjogrens, healing bilateral pulmonary embolisms and ligaments and tendons that do strange things out of the blue…like the partial bicep rupture that happened when I put a small tupperware container in the sink! Looking at me, I look pretty healthy (Unless you see me walking…not so great!) I read this story and immediately empathised with you! Love the spoon theory! It’s been so hard to really explain to others why I need those two hours plus in the mornings just to get dressed, manage to eat and be sure my pups are fed and gotten out to potty. Thank you for a beautiful and meaningful story!

  • darlalynne

    I don’t usually read these types of things-mainly because every single solitary day there is an overload of depressing postings or cutesy little quote about living with some type of pain, suffering or problem. And just seeing them depresses me to no one and eats up my patience, sucks it right out of me. But I was curios to see why a spoon was used, actually it was the nice drawing of the spoon. I would not use a spoon as an analogy, too cumbersome. The story got to me from the beginning though, and esp. where someone you have known forever who has seen you get, be and stay sick and they still don’t get it. I realized at the end that regardless of how I choose through out the day I have lived wit the reserve spoon in my pocket for years-and that really, really is the only way to keep going. But mine is an actual rock-I am never w/o a rock to feel an remind me to keep going. I have a blackboard painted on my wall that is listed with things I need to get done-things I would have just tackled before as a matter of course, take a whole lot more planning and in between rest ups before I can swipe that chore off the list. My entire wardrobe has changed from what I want to wear, to what I CAN wear. I don’t want to read quotes about pain, because I feel if I focus on it I will give up myself and stop trying, and if I add up how many choices need to be made all day everyday in the midst of pure pain I would not get up. Because I have more than one source of pain and many varied symptoms it is a daily changing landscape-I already know others understand the struggle otherwise there would not be so many postings, but it does double my strength knowing others keep a spoon in their pocket too. Above the pain, the most difficult part for me is living with others who cannot or will not grasp the spoon theory and have only pure resentment towards me for what I have no control over and things I am asked to do and have to do that is beyond my physical capabilities and am not allowed to say so w/o a tirade, a lengthy tirade about my uselessness and laziness. Holding plywood ‘just for a minute’ is both draining and terrifying because you could cause an accident. And I cannot just help lift a refrigerator. I sometimes have to just take the tirade. And Dr.’s may treat you, but they don’t really treat you well, when you live with pain and a new symptom is tough for them to pinpoint. You lose friends, are too tired to make new ones and have to create an entirely different world to live in for yourself. I can’t even think about it. I will just recall the spoon others use from the set as well, and thank you for your story.

  • Elizabeth

    Christine, Thank you again for this. I was diagnosed with PVFS(Now ME/CFS) 22 yrs ago. My niece has SLE. We have both used your perfectly simple explanation of energy deficet with doctors and family with much success. We are very grateful.

  • i think the same thing about it mr Arellano.

  • gail bertrand-meir

    Yes, you do understand…lupus. It is difficult to explain to some…not just the illness, but how we feel with the illness. I love you spoon talk. It might be an inside joke…but reality if we cannot laugh at ourselves… it is nearly imporssible to cope. Thanks for the above.

  • Jaclynn Haynie

    One of my best friends has lupus, so naturally i shared thus story with her when I first read it. She now uses the spoon theory all the time to explain her life. Thank you for sharing it with everyone, it really does give a very good prospective of what someone sick goes through on a day to day basics.

  • Angela Hall

    Hello, I love this so much. I am trying to start a support group for fibromyalgia in my town and I think this would be awesome to share. Who should I ask for permission to print and share the PDF version?

  • Sa Ingle

    I like this comparison. Having mixed connective tissue disease (MCTD) I usually compare it with a running faucet because sometimes in the afternoon it is like my faucet gets turned off and I am out of water. Spoon theory was introduced to me by my daughter who also has MCTD and it makes me feel better knowing I am not alone in this. Thank you again.

  • Santo Mengoli

    Beautiful simple way of explaining a complex idea. I always thank people when they tell me that I am looking good or healthy, but they do not realise that even being in the company of other people and trying to look good and happy is costing me some spoons! But I am happy and blessed with many good people, feelings, experiences and things in life; it is just expensive to show it…

  • Sarah

    Thank you for sharing. Your words made me cry. I feel this way – like I only have a certain number of spoons reach day – when my bipolar depression or migraines are in full force. Now I can use your spoon theory to explain it to loved ones… Brilliant. I hope you have extra spoons today!

  • Angela

    Hi Stephanie, I have severe depression since a child. Only recently has it affected my physical energy. I am adopting the spoon theory for my own. One thing that is frustrating is that I can start the day thinking I have 20 spoons then by noon, I am actually at zero. The energy and mood variability has become difficult to manage. I say “no” to a lot of outside activities and socializing now since as an introvert, socializing costs me a LOT of spoons even if I’m not physically doing anything.

  • Ann Karin Kristoffersen

    Thank you so much for sharing. I understand more how I have become (changed) because of several diagnoses, and so do my family and friends.Feels easier to be me
    when everybody understands more:)

  • Amber Wilson

    Thank you for this story. I was diagnosed with fibfomyalgia about a year and a half ago and It can leave you feeling really defeated.
    I went to the hospital for abdomen pain about 6months ago, turns out after my family Dr. Did some tests and my gull bladder is headed out the door. But when I went to the hospital for this pain, the Dr assigned to me, once finding out I have fibfomyalgia said “I checked your file. You are prescribed tramadol every month. I’m diagnosing you with a uti because your blood test showed an increase in white blood cells.

    ….I felt like I was being looked down upon. I never once asked him for any kind of pain medicine while there, I just wanted a diagnosis. I went home and cried that night because a Dr., someone who is supposed to help you, pretty much called me a drug addict and didn’t take my symptoms seriously. I am so scared to tell my medical history now because of that hospital visit. If he only felt what I did he would know it’s real. That’s what makes having fibro so hard. There’s such a negative perception attached, you feel so alone because of that stigma.

    Anyway, thank you for this story. It has truly changed my perspective and made me feel less of a failure for not being able to do all of the things I could do a year and a half ago.

  • Hazel Wade

    Thank you for sharing. I’ve struggled so long to explain to others, this is perfect.

  • kimmie0

    This is a great way of helping someone who is learning to live with chronic disease, not just their friends and family. Sometimes learning to conserve your resources is the hardest part of living with pain and exhaustion.

  • jillianpowers

    I shared this on my FB page, as I’ve recently been diagnosed with Fibromyalgia. Thank you for helping me look at my pain in an explainable, manageable way. Thank you.

    You can find what I’ve written by visiting my page. I do a body positivity photography project called, “I Woke Up Like This”

    http://www.facebook.com/iwokeuplikethisproject

  • oohdale

    I miss never having to count “spoons” too. One of my old friends have stopped by to see me in the last five years so I know too what it is like. Old friends will desert you.

  • Brendan Birdfield

    This was incredible, thank you so much for sharing this this. Not only does this help me to understand what it’s like living with such an illness but also to realise that I need to stop wasting my own spoons . I wish you all the best

  • Jennifer K.

    Wow, this was powerful. It brought me to tears because it too is how I have to live my life. I soul never have thought of it this way. Thank you.

  • Pam Sharp

    Thank you so much for your wise words. I will share this with my friends who really need the boost as well as the one’s who do not have a clue.

  • Pam Sharp

    I gather by your comments that you don’t believe FMS is a valid disease. I am single, have animals to care for and a job that allows me to work from my home. No one is waiting on me. Having this disease gives me nothing positive. I get no benefits. I seldom mention it. I still have to get through the day the best way I can. I do not like taking drugs, so I deal with the pain using heat, meditation, chiropractic care and moderate exercise. I also have OA, so most days moving around is also painful. Guess what? Different pain with either condition. But I am managing my spoons as best I can. On occasion, I even have one left over at the end of the day. but not very often. I often miss being able to do the things I used to do. But this is my life now, and I am living it with dignity and grace. I am grateful for the good days I have and realize that it could be so much worse. I have one wish for you. Since you don’t believe it exists, I wish you 6 months of what I have had for the last 30 years. Then, in addition to your superior attitude, you will also have understanding of what many of us are going through.

  • Adrienne

    Thank you. I have never been able to convey this so well, and this brought me to tears.

  • Lisa

    Wow, thank you for sharing this! It really helps put word to what I am feeling and I hope it will help some others I share it with.

  • Lydia Love

    This is also really great for the friends of someone with a chronic illness. Thanks.

  • Alison Stevens

    I too have lost “friends” however It is their loss not mine, would I love to have my life back..absolutely. I do not sit at home “thinking poor me or why me” however some people really do not understand “chronic illness” and no I do not wish this on my ‘friends” I just wish that ignorance would not be part of peoples lives. Would I love to go out and have a good night absolutely, however I have realised that lime the man JOB in the bible his so called “friends” were not aware there speech was putring him down So build up each other. Instead of saying to someone block the pain oh get out and walk oh stop feeling sorry for yourself. I would love for around 6 months for all these people to have a chronic illness. Empathy, can only be shown if you literally put yourself in other persons shoes. Thankfully I have friends who know me and know this is not the life I chose. So daily reading and meditating on Gods word and the promises of soon No resident will say I am sick will happen. Paradise earth, sickness of all kinds will be gone. So I stay focused on that and helping people where possible. Ignorance of so many is so sad, but hey I have my faith in a creator, who did not create humans to be sick and die, so soon will be a perfect earth and we will be perfect. Love to live life, and to be a listening ear for others who (feel they are not understood). Keep looking good. Stay safe stay strong.

  • Angie

    Every now and then, I reread this article…… it is great for the person who has a chronic illness. It makes me not feel so bad, when I’m feeling bad….. I remember to not feel guilty and to slow down. Thank you to the author for this.

  • Calum Craig McQuillan

    Really like your analogy, but laughed myself silly, used too watch a cartoon called the tick, and his superhero call was “SPOON “from now on that will be my call,

  • jane holborn

    stephanie i have good days and bad because of lupus, Arthritis ,Crohns,heart problems but i count my blessings every day that i can face most days with a smile because i don’t have … you guessed it i don’t have depression so please do not think of yourself as ” not as bad ” we are all in the same boat so paddle on as you go through life and continue to be grateful for every day but never count yourself as less than someone else

  • Jackie

    Just yesterday someone told me, but you don’t look sick. I smiled politely and said thank you… I wish I had this in my arsenal at the time! Thank you so much!

  • Rosie Dennison Rogers

    Christine Volochuk

  • John Cazander

    This method got me thinking on my own life’s hidden disability and others that I love, thank you!

  • Julianne

    “Because I am usually so buoyant in attitude” That right there is a beautiful (and somewhat melancholy) statement. I have a very happy outlook on life, and laughing is one of my favorite things ever. Because of that joy and happiness I love with, people can just never seem to believe that I love everyday in a constant struggle. They don’t understand why I have to rest between doing seemingly simple things. I was diagnosed with Rheumatoid Arthritis at 12 years old, and a couple other things as an adult, including depression. They ask how someone who laughs some much can be depressed. I guess I just like the way you stated that feeling.

  • I’ve been suffering since I was about 12, received a diagnosis at 16 (Now 22). I was home-schooled during high-school and couldn’t finish college because things got worse. I was lost and had given up on everything. When I found this last year, I felt that everything I had gone through made sense. Since taking on the title of “Spoonie” I have learned a-lot about myself and met many amazing people who I feel connected to. I’ll never be able to thank you enough, but I am truly grateful.

  • Johanna Eldridge

    I have tears running down my face as I am overwhelmed with relief and grief and unsorted emotions.
    I have lived with several unpredictably debilitating conditions (including asthma, reactive hypoglycemia, food sensitivities and adrenal maladaptation) as the mother of 4 high needs children for over a decade. To have a simple paradigm to explain to my kids why I can’t do all the things I had hoped to is a precious gift.
    To be able to remind me that I really am doing the best I can with the resources at hand is perhaps even more important.
    Oh my word. This descriptor is so amazingly clear.

  • Italiangirl13

    I have used the spoon theory for a while now to people that just see me as looking like I’m not sick. This is the best way to show people what we go through on a daily basis. I have Crohn’s/UC disease, plus fibromyalgia. I’ve lost friends over this, because to them I look fine. Yes I have good days, but I can’t promise I’ll be ok the next day I’ll be ok. I may be in bed all day. I’m always fatigued, no matter how much I sleep. Thank you so much for sharing the spoon theory, to help spread awareness of invisible diseases. I would love to post it on Facebook, and other networking sites to get to more people, in hopes people will stop judging, and start understanding. Is it ok if I post your story, or parts of the spoon theory?
    Also for people dealing with Crohn’s and Colitis, there’s a great support group website called mycrohnsandcolitisteam.com
    You’re surrounded with people that understand what you are going thru, and you feel you’re not alone.

  • Marle Fenno

    This is great. I learned much the same premise long ago with a limited supply of marbles as my units of energy. But this is such a simple and graphic way to share. After all how often is a real bowl of marbles available. Let alone the concept of losing my marbles. 😉

  • Jill Stanford

    THANK YOU THANK YOU THANK YOU – now I can explain what Post-Polio Syndrome means to people who say, “But you look like you are doing so well!” No – it cost me a spoon or two . . .

  • amandameezer

    People like Bob don’t bother me. They don’t understand because they don’t want to understand. I have systemic and pulmonary Sarcoidosis and I totally get the “spoon theory.” It’s very descriptive. I might just start thinking in terms of spoons now when I run out of steam which is what my illness does to those who have it.

    I have had to cut people like Bob out of my life because they don’t understand. When I have to say I am sorry I am tired it’s time for me to go home and they take it personally believing I am really saying I don’t want to be with them any longer, when I have to tell them I can’t come out to play today because I don’t feel well, when I have to tell them it’s not you, honestly, it’s me and they just don’t get it, I have to let them go.

    Some of these have been old friends, sadly, some of them have been potential new friends. Fortunately, though, there have also been friends both old and new who have understood and have been okay with it. They are the ones who make it worth while to keep trying.

    Bob says he thinks telling people who are sick is wrong because they don’t want to be told they look sick. No they don’t, but they don’t want people to believe if they don’t look sick they are well because that places expectations on them they cannot live up to. He can never imagine how frustrating that is to hear.

    It’s like someone noticing a person has no right arm asking the person missing the hand to write with his right hand. But it’s clear there is no hand. That person without the hand is not going to be happy with that request.

    With a chronic illness, when a person doesn’t look sick you can’t tell from the outside, but from the inside that person knows he or she is ill and can’t do many things. Hearing “But you don’t look sick,” can be very frustrating and defeating. Maybe it would be better to appear sick so that people could tell something was wrong. Maybe that would satisfy people like Bob.

    Not everyone has to walk a mile in everyone else’s shoes but if they don’t want to understand, that’s okay. But it’s a bit foolish to post on a discussion board of like-minded people regarding a subject of which you have no absolutely no knowledge and base your comments on speculation only.

    Ms. Miserandino has every right to sell her posters or books or whatever. She has to pay for the making of them. People have the right to buy or not to buy them. She has posted her story on the Internet. There is nothing to stop people from repeating it if they want. I don’t see any scam in that as Bob suggests.

    I don’t understand why Bob wound up coming to this website in the first place. He hasn’t a chronic illness, he has neither empathy nor sympathy. He can’t relate.

    As the Good Witch of the North said to the Wicked Witch of the West, Bob, “Begone, You have no power here!”

  • Reading this changed my life so much. I have shared it with so many people. I wrote an article recently about it, with a link to this post and your store. 🙂 I thought you might like to see it. https://wizzley.com/dealing-with-chronic-pain-the-spoon-theory/

  • jackie

    And your website is proving what?

  • jackie

    I was diagnosed with fibro over 20 years ago…gave up a job I loved.Over the years it has waxed and waned.Last year,I had a very long surgery and the medications messed up my digestive system.I started severely restricting what I ate,kept getting sicker and sicker.Because I was a little overweight,not one doctor was concerned.Just to be brief,I saw a dietician and found I had not been eating enough for years….within days of upping my calories….to 2500 a day..I slept better and have much less pain.I have more energy….it might be worth looking at how much and what you are eating…give it a try for a couple of weeks…what do you have to lose?

  • Audra Snayko

    Then you clearly don’t get it Bob. There are days where I start my day with almost zero energy, barely able to get out of bed. Then it’s work, dinner, dishes, time with family. Every single day I have to make choices about which of those things I can accomplish because it’s VERY rare that on any given day I can do them ALL. you clearly don’t suffer from a chronic illness otherwise you would understand the concept. The more disturbing part is that you’re trolling someone else’s website bashing people for something they have no control over. If I followed your logic above “it’s called energy. You start the day with a certain amount of energy and it runs out then you sleep” I’d be asleep by 2:00 PM every day. Get a clue…..and a life.

  • Stephanie A. Brown

    I have depression and ADHD, in addition to some visual impairment. This is not “as bad” as many other ill or disabled people have it, and I’m grateful for that every day. That being said, this analogy still greatly resonated for me and I really hope I can use it to explain things to another person someday. Thank you.

  • The March Hare

    This is great. It applies to my life as well. I, at 75, just found out I am autistic and now understand all the problems I have struggled with my entire life. To top it all off, I smoked most of my life and now have to live with COPD, which severely limits what I can do. At times tying my shoes results in my having to quickly stand up and catch my breath after the first shoe, then tying the second and doing it again. I have curtailed so many activities I have previously done. I thought autism controlled so much of my life, now with COPD, it is even worse. This is a great analogy.

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