The Spoon Theory written by Christine Miserandino

 

Please take the time to read Christine Miserandino’s personal story and analogy of what it is like to live with sickness or disability.

Click HERE to download “The Spoon Theory” in PDF format.

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

*We have English, Spanish, French and Hebrew translations of “The Spoon Theory” available.

You may NOT publish or re-print this article without the written permission of Christine Miserandino and ButYouDontLookSick.com. Thank you.

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  • sparklies

    Tears Of gratitude to Christine. Real tears, that I had to get under control before I could respond. This is so applicable in so many facets of life; my nephew newly diagnosed with type I diabetes, my mother in law whose thyroid had died, my dear friend suffering with Alzheimer’s and her amazing aged husband, my son with ADHD and other personality difficulties, and of course myself. I understand myself on a whole new level. It is only at the end of my spoons, or near there, that I realize my limitations. The beginning of the day is a good indicator of what shape my spoons may take and how many I may have. Sometimes my bipolar is out of whack, manic, down or just plain numb. If I “count my spoons” before I begin my day, perhaps fewer nights will be left with depleted patients. Or the need to cry. Or scream. Or hide. Or sleep for 3 days.
    This may have come off as me feeling sorry for myself, but it is truly an awakening to my own knowledge of myself, my limitations, and words to put to it.
    Thank you Christine for being brave!

  • Mikey

    Omg you are such an inspiration Straight Spine. Come lay with me

  • StraightSpine

    I love this. Now I can explain what it’s like every day after having spinal fusion. That being said, I may need to switch to forks in my household! ^_^

  • Lisa (ThePurplePlace)

    Oh so true!! I read this a long time back, probably the first of second year after I had been diagnosed with Fibromyalgia and Degenerative Disc Disease. Even now, years later there are still TOO many people who still make that ‘annoying’ statement…about how if look…as if it has ANYTHING to do with how I feel. What should I do…crawl into a hole…never get up, get dressed or take care of myself….Hell NO!! That would be worse, but just because I do get up every day and do take care of myself and try my best to feel as ‘normal’ as I can…really has no effect on my pain level…it’s for me and to help me NOT let this illness take over and win!! I HOPE I never have to GIVE into Fibro….Never!!!

  • This is a very good analogy. Thank you for putting into words that I can use to explain to my family and friends. I have FM and UCTD. I never know which one is flaring, but I even understand my symptoms better now.

  • Sarah

    I’m in the diagnostic phase of being sick (with who knows what). I’m fairly certain it’s not lupus, but this article is really the best thing I’ve ever read about being sick. Being sick requires making choices every minute of the day. I wish other people understood that.

  • Malyndra Crow

    The Spoon Theory is a brilliant metaphor, it just as perfectly describes my life with CFS/FM/ME. Then add in the fact that I have aspergers’ and get so hyperfocused on a particular task (such as playing a videogame), when I take a break, I realize that ALL of the day’s spoons have already flown away! When you can’t plan your day, due to difficulty with stringently ordered lists, day to day life generally consists of waking up, and chucking all your spoons out the window.

  • Allandre

    Christine, if you have time, perhaps you could answer a question for me? I told the spoon theory to my sister and she wanted to know if when I nap, it’s to get more spoons. I’ve thought and thought about it and am just not sure. Sometimes I nap because I’m just too tired to do more right then and when I get up I can do more. Sometimes I didn’t get enough sleep the night before and need more. But I’m not sure if those would translate into getting more spoons or into having enough energy to be able to pick what to spend your next spoon on. Any thoughts?

  • Tanya

    It’s been 3 and a half years since I was dx’d with RRMS…and yet this is the first time I’ve read this! Christine, THANK YOU! A beautiful, eloquent way of explaining to “well” people who just don’t get it. Be well xxxxxx

  • Mike

    Very moving.
    Most of us take everyday life for granted. It makes me realize how blessed we are. There are always those with less spoons than us. We should be more aware of that for both them and for ourselves.
    Thank you very much.

  • sharon morgan

    I think I’m going to use the spoon theory to help explain to my family what I’m going through everyday.I have many back problems along with a birth defect and arthritis, thyroid conditions, I have to wear glasses and hearing aids, Mitral valve prolapse, chronic pulmonary embolism and heart disease, bipolar, plus many more. Just getting out of bed everyday is a challenge.

  • Kelly C

    Wow! This is perfect! I have very active Crohn’s Disease and this illustrates my daily life exactly! I’m going to have the people in my life read this – it’ll help them understand, truly. The only thing I would add are the ‘spoon you can gain w a wonderful, loving support system.

  • Bobthepug

    I have Multiple Myeloma which is a blood cancer that causes a great deal of bone pain & side effects of chemo & stem cell transplant leave me with terrible neuropathy. This is shockingly on point for every day of my life. I wish it was in pamphlet form so I could pass it out as trying make it through my days.

  • Kim

    I have Lupus also and there are times that I feel like I am All Alone and that nobody cares. I can so relate to people telling you well you look ok. I have gotten to the point where when people ask me if I am ok I just tell them that I am fair because I know that they really do not want to know the truth.

  • I have Lupus, and The Spoon Theory is a good way to explain to family and friends how you really feel. Many dealing with Lupus have been told they are hypercondriac because you can look good on the outside, and be really sick or in pain on the inside.

  • Thank you, I’m instantly thinking out a list of people I’ll send this to to help them understand my MS 🙂 Be well xx

  • jane Brooker

    This is brilliant!! I hadnt heard of it, or you before, but found a link on Facebook. I have Primary Progressive Multiple Sclerosis, and used to travel all over the country for work, and now work from the back room of my house. lol. I tried to start mowing the lawn today = but ran out of spoons one width in lol. I would like an extra cutlery box full! But this is a great method of explaining it all – thankyou so much, I shall share on FB = hope you;re well xxxx

  • i am a mum of 5 and have worked in a bakery for just under 15 years. when 18 months ago I had to stop work. I have suffered 17 lung collapses in 22 months had 2 lung operations 1 botched 1 successful. I was diagnosed with an Autoimmune disease similair to Lupus and never know when my lung will collapse next. I used to be like everyone else and take the most basic things in life for granted, things like breathing. Now I live the spoon theory, because I look healthy from the outside people just dont realise choosing to walk uphill uses 3 spoons, making the bed and talking on the phone uses at least 2. I have forgotten what it is like to be normal and am really glad to have come across this theory and will definitely use it to explain what it is like for me to be sick. Thankyou and good luck and God Bless all of you out there in the same situation. Tonia.

  • Mark A Girard

    Thanks! This is great! My life was destroyed by the fluoroquinolone antibiotic called Levaquin, a cousin to Cipro, Avelox, Floxin and a few others, some banned for being too toxic and others just being introduced. These drugs should only be used in life or death situations but they are being handed out like candy. They do tons of damage but it is usually months after people stop taking the pills so they never suspect them. Most of us have lots of invisible injuries that ruin our lives but we look normal so people do not take us seriously just like in the Spoon Theory. If you have taken one of these medications and have suffered tendon problems, joint pain, brain fog, severe headaches, tinnitus, vertigo, heart palpitations, pulmonary edema, shaking, weakness, fatigue, gastrointestinal problems, mysterious cartilage damage, slowed healing or a hundred other symptoms then maybe you got “floxed”. Go to saferpills.org or Google Fluoroquinolone Toxicity Group for more info. Best wishes to all of you!

  • Thank you so much for this. A facebook friend was talking about this and now I understand a little more about myself. I am a cancer survivor. I also have diabetes and a condition known as femoral nerve paralysis. People think I have bad knees. I also have had my aortic valve replaced. All invisible to everyone else. This is the BEST description of my day I have ever seen. I want to give this to my boss as well. May I have permission to make copies for work and my mom? I will have to enlarge it for her to read.

  • Best description of what it’s like to be me I’ve ever heard. Lupus, Sjogren’s, Raynauds, Neuropathy, Fibromyalgia and a few other fun things, but they don’t HAVE me:) It was worth a spoon today to thank you!

  • Thank you for this. I don’t have Lupus but have Sjögren’s which I hear is very similar. Let me know if you would like a Portuguese translation of this.

  • lenore

    I am really glad I read this I have Lupus to along with other illness with it. It helped me better understand my own illness and how to explain it to my own family. I am sending this to them so they can read it and maybe better understand what I go through mostly everyday thank you again

  • Guest

    I’m 19 years old and I’ve been a fibro sufferer since I was 14. It is so hard because people tend to not believe you, especially when you’re young. I remember when I heard my grandmother tell my mom that I was just faking it to get out school. That was one of the most hurtful things I’ve ever heard. I missed about 40 days of school before being put on independent study, and people would text me saying, “Are you not coming to class AGAIN?” as if I was ditching school when really I couldn’t walk that day. When I went on independent study, everyone said how lucky I was because I could do anything I wanted, and I wish I could’ve told them, “All I want is to be a normal teenager.” I also didn’t get why they thought I would be active when it really was a sentencing to my house for a year.

    I so badly want to be able to do things other people my age can do. It’s hard not to feel sorry for myself. My friends want me to go camping with them, and I love camping so much, but they hike to their sites, so I can’t go and they don’t understand why. Or if we do go “car camping” (which is hard enough!) they want to go on hikes and then complain when I tell them that I can’t do it.

    I’m tired of being glared at when I park in handicap spaces (apparently I don’t look disabled enough for people), I’m tired of people complaining when I can’t do an activity (thanks for rubbing it in!), I’m tired of people saying, “Oh whatever we all know you have fibromyalgia, big deal.” (Yes, it is a big deal, jerk)

    This is a very important article and I’m going to be sharing it with all my friends and family. I wish I could pass out flyers!

  • BethanieLynae

    Not only are you an idiot, but you’re a coward. The only comment you’ve responded to on this entire thread was one that wasn’t calling out your bullshit. Grow a pair and stick to your guns or leave. Nobody wants you here.

  • BethanieLynae

    I’m not sure what you’re trying to accomplish here, but it seems to be that you’re belittling other’s pain by saying that you’ve had it longer or it’s more intense, which is bs. Your pain is not more important than anybody else’s.

  • Beth

    Oh wow I guess the fact that I can’t walk for more than ten minutes each day is just all in my head! Thanks for the miracle cure!

  • Neko

    I found Spoon Theory on a support forum back in 2003 when I was diagnosed with RA and Fibro. It was said it was written by “Anonymous” and was years old even then. None of the mention of Lupus or dinner with a friend or anything.
    So how is this possible if this woman is supposed to have written it sometime since 2003 and is now claiming a copyright?
    I don’t mean to be rude, I am honestly asking. It seems as if she’s taking credit for something she didn’t do, so I would like to be corrected if I am wrong about that, or the timefram it was written in or something.

  • BreBurey

    Dr, always told me I have blood cells that carry little oxygen that they flat and they are suppost to be like a bowl that carry oxygen to parts of the body and drop that oxygen off but mine dont carry much with lupus so i will always be tired….

  • Jenn

    Wow! This made me cry so hard. My little sister also has lupus along with endometriosis. Me? I have IC (aka Painful Bladder Syndrome), Fibromyalgia, Endometriosis, Post Herpertic Neuralgia, Coilitis and Herpes (from being raped many years ago) and some severe food allergies & ADHD. Oh yeah, I also have a son on Autism Spectrum along with a list of diagnoses, including ADHD & PTSD and my hubby is a Navy Vet who suffers from PTSD and also has ADHD. But, I don’t look sick and neither does my sister. People make comments and can be so mean. I worry a lot about my sister b/c a lot of times she pushes herself to hard and has almost died several times. Your article touched me deeply and I can’t wait to share this on my FB page. So many people judge….and I’ve lost many so called friends…just because there are many things I can’t do b/c of the pain that never ends. Even my sister has become fed up with me but my last bout with a flare up of ALL my diseases almost caused me to die b/c I was swelling in places where I didn’t even know you could swell! It was terrifying but I believe that it opened my parents, my sister and my hubby’s eyes that I am not ‘faking’ nor am I ‘crazy’. My pain is real and though I don’t look sick; I am and according to ALL the docs I always will be. I too am a person who can’t stop but my illnesses have taught me that yes, I can b/c many days I have no choice….I can’t even get out of the bed many mornings without the help of my hubby. Job? What job?? Many days just sitting at the computer trying to check my emails and fb and blog KILLS me. I’m learning to take each moment as it comes and cherish the minutes and seconds I can spend doing something I enjoy. Thank you Christine for sharing this story….you are such a HUGE blessing!! May God bless you.

  • Linda Williams-Abernathy

    Do yall have resources to DONATTE any size posters? i will gladly dispense them on those rare days when i have an extra spoon or two.Linda Williams-Abernathy

  • Tessy

    I found Dr. Abu on the web when my finances were in real trouble. My husband had gambled away most of our savings, I had no job, and we were facing foreclosure. I needed a money spell from Dr. Abu, and quick. I can’t believe how understanding he was. After ordering the spell, I felt much more confident that things would turn out. Believe it or not, it did. I won $150,000.00 the following week, found a high paying job and my husband went into treatment for gammbling addiction. We’re doing much better now and we get to keep the house. Thank you, Dr. Abu, for being there when my heart needed it the most. If you need help in any area of your life just contact this good man and he will help you at once. Contact him via: [email protected] and also reach him on Skype via: Dr.abu11

  • Froukje Lammers

    Just 1 question Samanthe:
    Are you a doctor? Because if you where you should know that Fybromyalgia is a real debe fysical proffed also!

    I have diagnosed with it in 2010, in the Netherlands is now hospital where we can proof it with a brain scan but in France they can.

    So unless your a doctor don’t Judge us! Us as people who have Fybro

  • hi carol. i know the feeling about loss of memory, i have to write notes as well, and somehow have missed 2 doctor appntments within a month…that i had written down…theres no garentees. I also suffer from migraines with FM, i get frstrated with myself a lot and feel stupid when i cant remember things…im only will be 46 on April 30.2013. ive gone days without knowing what day it was. My mother was nice enough to pass on to me heredidity a “Chemical Brain Imbalance” which i have to take medication for the rest of my life for, but along with the other 10 medications i have to take 2x daily for things that are Wrong with me, i shouldnt complain even though they mkae me sick and i cant eat and i cant sleep…..im still alive – i guess im just not sure why…. my dad died of alziheimers and my mother died of heart attack/cancer last May 18/2012. ~God bless~ xx diane

  • i complely agree with you kachinkie007, it dosnt sound like shes had the Unfortunate measure of hell of what the rest of us are going through and she has a mentle problem for sure of some nature, im sorry you lost everything as i have, but the thing that meant the most of a loss to me after this past 4yrs….is my independance…freedom…. I have always taken care of myself since i ran away from a bad home, never had to ask for help from anyone, i got to say it was very humbling as i could not have made it to wjere i am today without the help of others, i currently have nurses coming in daily to help with a bath or a meal or just combing and fixing my hair for me…i know this wouldnt seem like much to people of this girls caliber and stupidity – but i thank God daily for thses nurses for their time and commitment to help me when i cant help myself…they geniunely care and that makes a Very Big difference in my life. ive been told that karma comes arund 3x over…. so this (little girl) needs to take head. ~God Bless dear~ prayers <3 xx diane

  • thank you so much for your information and experience pamela, i get tired of explaining how im feeling to a person such as this who cud not give a damn anyways…ty again dear ~God Bless~ xx Diane

  • Thank You so mcuh for postin this….this is so true LG, but people like this girl and others will never even take 5 mins from their bullying, these types are only happy when they can hurt others not matter what weapon of choice they choose (antagonizing people with real health issues, shooting someone, pushing someone from their wheelchair and laughing etc etc) they just aim to cause additional misery and pain for those whom actually know and care and understand how the body is affected by these diseases, I wouldn’t wish how I feel on a daily basis on my worst enemy, when my nurses come and try to give me a gentle hug….i cry in pain it hurts so bad…. my life has been changed forever and my thoughts about whats really important and leave the rest behind, I can only do what my body will allow me to do and nothing more. ~God Bless~ xx diane

  • Hi Stephen and everyone here, thank you so muvh for explaining the aweul pain I go through on a daily basis. I Ive often tried to explain my pain with Fibromyalgia and Lupus and a broken right hip that wont heal from a bad car accident to many people… but I just give up and suffer in silence, I also have PTSD from when I was a kid from being sexuallty assaulted from my family from 4yrs to 12yrs. Ive been in a wheelchair for the past 4 yrs now, I am alone and Ive just spent the winter in my apt cause in the snow I cant get out and I cannot feel or move my right leg, is paralyzed. This analagy of the Spoon Theroy is the Best way to explain what I feel and the way I live my life, many days I Cannot get out of bed because of the pain in my joints and muscles….many many times Ive prayd to God to take me with him to finally have some relief. I have a “Belly Button Hernia” that has grown now over the past 6 yrs to the size of an Orange, but In Canada where Im at they dont operate on them anymore…the Doctors tell me that it will go away on its onw?? I am so Very Proud of all of You here for sharing your disabilitie and feelings about what others can’t Feel – many only make judgements about what They Cant Feel only what they think they see, If this Samanthe person could feel Any one of our excrsiating pains that we have to go through each day, and have to make compramises about how much energy we have or how much pain we can tolerate on any given day – Im sorry , but for people like this, I would Love for them to be able to feel what we are all going through, for 1 day (Not a lifetime…just 1 day)- and for them to try and cope …..I dont believe she or others like her could do it, but unfortunately we’re forced to live with our fates, i am like this for life it will only get worse with time…. i have to go my hans are throbbing badly, to those in military God Bless You and Everyone here, and thank you for your protection… you are true heros and wqarriors. xxxx Diane <3

  • Staci C

    People……stop replying to the “troll’s” comment! It puts it further to the top! Clearly “she” has nothing better to do with her time than be an idiot and spew that craziness (likely a mental disorder :-O) onto those who are suffering. Who cares what some moron online says anyway! You know who/what you are and “her” comments should not affect you 🙂 Peace & Pain-free days to all!!! (PS–I have Lupus and Vasculitis)

  • This “theory” is brilliant! What a great way to explain it and make it Visual.

  • Carrie’s Just Mildly Medicated

    My husband sat in doctors appointments with me and had an understanding that I was not well, after reading The Spoon Theory his understanding developed and turned into an empathy and support one could only hope for in a partner.

  • montygreen

    “The healthy have the luxury of a life without choices, a gift most people take for granted.” this is totally not true. There is no such thing as a life without choices. Granted the “healthy’ do not have to make some of the same choices as the “unhealthy” (to quote the author” ) nevertheless they have to make the same choices when it comes to family and job. as a fairly “healthy” person, if i make a choice to sit up all night and work or read or whatever, i too oversleep and struggle to get up and get ready for work; when my husband is sick and needs me to see about him i have a choice to either put him first or put my job first. if i have small children who actually need my taking care of them then i have that choice to make. whether we are “healthy” or “unhealthy” when we make commitments it is our choice as to what we do to keep ourselves able to fulfill those commitments and agreements. If we cannot honor our agreements, then we need to try to get changes to those commitments and agreements changed so we can fulfill them. “Healthy” or “unhealthy” we should do whatever is in our power to take care of ourselves so we can honor the agreements and commitments we have made to others. it is our responsibility to take care of ourselves and making the choices that need to be made to that end. again– we all have choices to make (or we can make excuses) and those choices are not always fun or what we would really like to do if we all lived in a perfect world!

  • potatoduck

    Thank you thank you thank you, I read the description and honestly thought to myself that it wouldn’t really help explain any sort of illness (negative brain sorry)..but i read it and yes…it helps..a lot. Most people shun mental illnesses but it works well for my “problems”. I get so worn out from doing things like shopping or meeting family and just want to sleep, everyday things are a chore for me more often than not and i learn to live with it..but when it comes to explaining to others why i’m not up to do things like washing up, tidying, shopping, going to the cinema etc it’s just so hard and uses up one of my spoons in attempting to do so. People don’t understand why some things are so hard for me just like i don’t understand how the same things are so easy for them..now i know it’s because they have a catering supply of spoons and i’m on a spoon budget

  • April

    This is awesome! Thank you for sharing!
    It is one of those articles you read & think… Wow, someone else totally gets it!
    I don’t have lupus. But I have a chiari malformation. I underwent brain surgery for it in August 2012 & now preparing to travel out of state to see a Dr who actually knows what it is. Thank you again for sharing. My thoughts & prayers to all who suffer!! <3

  • Tamarand

    Who cares about the spoon theory…some of us have had the little pebble theory…
    Long before you were born….we are hurting as much or more than you

  • gogreengal

    Thank you for your words of support. As a teenage sufferer of chronic migraine, it is hard for me to explain what I go through to friends. Once I explained my symptoms to somebody that asked if it was “just a bad headache” and frightened them. I feel so lonely.

  • Loo

    wow, well done article, this is for more people then you would actually know. The Spoon Theory is the best theory explained in laymans terms and can even let children understand also. I am sorry you have to live with this Lupus, and hope one day there will be a cure, but I think it has made you a genius on explaining the pains you feel and the energy lost with every decision you make on a daily basis. Hugs to you and thanks for sharing.

  • Pammie

    This is very well explained. I hope to share this with family & friends. I’ve had Crohn’s disease for 23 years nice I was 12 yrs old. I also have a very rare skin condition, anxiety, migraines & the list goes on. Thanks for sharing your spoon story!

  • Deb Drake

    I have Ehlers Danlos Syndrome which is like the opposite of scleroderma (an overproduction of collagen) but really it is more of a faulty production of collagen. What you describe, when the joints all start giving out and such body pain as fibro, which is a symptom of EDS, and that it is genetic but spurred on by events in your life, it sounds like a connective tissue disorder such as EDS or something similar.
    You may want to read up on it at ednf.org and visit http://www.inspire.com/groups/ehlers-danlos-national-foundation/

  • Einelorelei

    I totally relate to this. It is very frustrating when people accuse me of being lazy or weak. Sometimes I give them this link. If they still don’t get it, I tell them to go to hell.

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