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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  • oohdale

    “unsubscribe” “unsubscribe” “unsubscribe” “unsubscribe” “unsubscribe”

  • MimiBklyn

    If this analogy brings you comfort or makes it easier to explain your condition, so be it, but I don’t believe the scene in the diner ever actually happened. Why would the friend ask for more spoons? Why would someone on a limited supply of them be running around, collecting them from other tables? Who does that? I guess it sounded more compelling this way than to admit you came up with it alone at 2:30 AM.

    All these cutesy terms – “spoonie,” “Crohny,” etc – you are defining yourself by your illness. You are hiding behind your condition. I don’t know what it’s like to be healthy. I was diagnosed with Cystic Fibrosis when I was 11 months old and although my case is milder than most, I simply have no idea what it’s like to be a “normal person.” Still, I am not CF. I am more than an acronym and a little badge of “sick person.” I have no need to make YouTube videos about my doctor’s appointments or join web forums to whine to other people. I would rather live my life & enjoy it as best I can than wallow in my misery.

    We are not “heroes” for dealing with conditions that we did not ask for. It’s not “inspirational” to do your best and try not to die. Even animals do that. CF is my challenge in life, as some people are dealt poverty, personal loss, mental disability, and myriad other things that I cannot fathom. You take the hand you are dealt and play it the best you can.

  • Katie M

    Thank you for this. I was diagnosed recently with a rare (1:100,000) illness called idiopathic intercranial hypertension, a neurological disorder that is most days debilitating. As all the symptoms are internal (headaches, dizziness, nausea, vision changes…), someone wouldn’t know by looking that there is something wrong. But the struggle to get out of bed, stand with out falling, the headaches that don’t go away. It doesn’t stop, and it takes all of the energy you have to do things that were once never thought twice about. I haven’t been able to drive since January because my vision has been to blurry to do do safely. This article helps to bring awareness to those who feel they may not have a voice. Thank you.

  • OLIVIA DE JAVELINA

    Thank you, Barbara. The link was helpful as well. Have the best day possible.

  • Thank you, but the spoon analogy is actually Christine Miserandino’s. I am merely defending it as she doesn’t post very often.

  • Patty Huntley

    Thank you Deborah. If you Google EDS look at the Mayo Clinic site. They have it well organized and explained.

  • Patty Huntley

    Hi Olivia,

    Isn’t it interesting all the different types of issues that can use a theory like this? I love it. It is so helpful to so many people so they can help others to understand where they are coming from.

    As for looking good I also am half Japanese. So I have the Oriental skin and I really look Japanese or Hawaiian. I am 53 at the moment and has survived so far. I live in PT and use Propping pillows when I sleep or all my joints come out. With the pillows I don’t have to put in as many joints as without. 🙂

    I too work on making sure to surround myself with positive, supportive and happy people that don’t pity me. They always allow me to try first and just be there I case I need help with things.

    I hope this finds you well.

  • OLIVIA DE JAVELINA

    Another EDS’R here, with all the spin offs that come with it and also a very severe case with systemic involvement past the ligament issues, with my eyes and GI tract, and dislocate ribs and knees and shoulders in my sleep. Many spontaneous fractures from the early osteoporosis and since we don’t heal well my leg fractured 9 months ago, has yet to heal and because of another diagnosis causing extreme edema, it cannot be casted. I unfortunately had two parents with EDS, so got two types, both classical and hypermobility. My best to you, Patty, a fellow Zebra! I don’t know your age, but at 62, I had always “looked” great with that velvety skin, until 5 years ago. Now I look like a Sharpei dog with all the deep wrinkles, so savor that while it lasts! I additionally have CPRS, Complex Regional Pain Syndrome type II from a direct nerve injury for the last 25 years, which on the pain scale is 42 out of 50, surpassing amputation, and is found more likely if one has EDS. It is 24/7, so while our bodies are like a raggedy ann doll inside with faulty collagen from the EDS , the CRPS ( and yes it is pronounced like it is spelled, Craps is just what it is!) is trying to draw in and contract. As well as 15 other or so diagnoses, it is very difficult to manage and one day is never like the next or last. This spoon technique is very intriguing and inspiring. I too am very appreciative to Barbara for posting it. A very creative, upbeat way of creating a useful analogy, and not one to engender self pity, but awareness for both parties. We must first seek to understand, then to be understood. For me, it was inconceivable that one would not understand limitations, since from birth I have struggled with multiple genetic defects, none of them visible. I first had to understand that many cannot understand or accommodate without a frame of reference, and this gives that to them in a clearly definable way. If they afterwards still do not “get it”, we can then move on to more compassionate company.

  • OLIVIA DE JAVELINA

    Barbara, I thank you for the spoon analogy. I am 62 and have multiple genetic central genetic issues, mostly stemming from Ehlers-Danlos. I have tried the positive spin ala Louise Hays style of denial, didn’t work, that is about blaming the victim. Only when I equated my situation to a bank account was I successful in recognizing and accepting my situation, and giving myself permission to enforce my boundaries, both internal and external. That is not self pity. It is radical acceptance of yourself and others. One only has so much money and an overdraft can have disastrous domino effects, as can overdrawing your energy account. Now, one can live on credit cards for awhile, in an economic situation, however borrowing one spoon from peter to pay paul will not last long, when it is about health and energy. It is about finite resources and recognizing limitations, honoring one’s body and yes, expecting the world to recognize, accept and tolerate one another without self aggrandizing privilege. Your spoon analogy and exercise with your friend is similar to the one a famous nun has done for years addressing racism in classrooms separating blue eyes in one colored collar and other’s in another. The blue eyes are given all advantage, and the others are not. Only after the exercise did understanding come to those who had not ever had the experience of walking in another’s shoes and seeing how they would feel were they similarly marginalized. Another Aha moment for me was a Suze Orman talk on spending money, and how to decide if a purchase is ‘worth’ it. She suggests one keep in mind exactly how much money they make an hour, and when making a purchase, to consider how long at your salary you would have to work to buy that item. It changed the entire way I look at purchases and how hard and long I would have to work to earn that $60.00 blouse.

    Finally, I am compelled to comment on the posts made by a very few in this thread that seem to be focused on “positivity and getting over it.” For a disabled person to spew vitriol on another for graciously sharing a creative, reasonable approach they have found useful to help to bring understanding to the differently abled is divisive and unproductive, and seems a bit narcissitic and arrogant. It is bullying and shaming. One size does not fit all and this type of comparing diminishes us all.

  • Jerry Tarone

    Indeed, it’s just recognizing reality. I had friend who asked if I was putting him off. I said no, that’s just my life now, I have a few good hours a day and I have to use them to get important things done, not go out for a road trip and get wasted. I never heard from him again.

  • Margo Aries

    I have Multiple Sclerosis (MS, destruction of the myelin sheaths to my nerves in the central nervous system) and my mother gave me a similar response. She has narcissistic personality; really fun when you just need your mom to care about you. I feel for you, you’re not alone!! 🙂

  • Lisamarie f

    I have some recent posts on my blog about pain if your interested ob6-3.blogspot.com/2016/02/pain-control.html

  • Hope0297

    Amanda, I feel so badly for you! I don’t know if I’d be alive without my mother believing me. I don’t get a lot of help, and I don’t even care anymore if no one understands, but it astonishes me that after 18 years w/FMS, some people still don’t believe it (or, actually, don’t believe it’s as bad as I say it is). My sister finally believed me after about 5 years; in her words, no one would keep up the sick charade for that long especially when all it caused was loss.

    On another note, my father didn’t want to believe that my son is autistic but right before he died, he apologized. He was scared for us and wanted so much for it to be something else that could be fixed. I hope your Mom will say that she’s sorry to you very soon!

  • (I replied to this last night, but my reply does not seem to have posted.)
    Someone who is eating lying on the floor is probably NOT a person who is expected to make public appearances and carry on a somewhat regular life while also having an invisible disorder. I am NOT “focusing on the negative” when I recognize that I cannot attend an all day (and into the evening) conference in Philadelphia and then do a dramatic reading the next day on the Eastern Shore of Maryland, just dealing with a physical fact.

  • Let’s just back up a moment. The whole spoon analogy is to explain to those who don’t have any disability what it is like to have an invisible illness. If you are eating lying on the floor I doubt you have any plans to go out with others that you have to break when your illness flares. There ARE those of us trying to maintain a somewhat normal life despite whatever condition for whom the spoon analogy is useful in dealing with the able bodied. It is NOT “focusing on the negative” to admit that I do not have the energy to spend all day at a conference in Philadelphia and then do a dramatic reading the next day for a congregation on the Eastern Shore of Maryland but a recognition of physical facts.

  • Adventurer_ci

    I do not think positively, I just refuse to focus on negative- spoons for example. And you are wrong about my disability- I crawl to the bathroom and eat while lying down on floor, if I have anything to eat since I live alone. I am physically unable to leave my apartment for weeks at the time. So people who actually count spoons are in a much better shape than I am.

  • Brandie Minor

    Hmmmmm. In response to your forcing acceptance upon other people and no one owes us anything; I think that it is not necessary to have disabled parking or wheelchair ramps for those who are in wheelchairs, infirm or use walkers. Oh that’s right, you can See someone in a wheelchair or assisted device. You can’t see the physical and mental struggle of someone who has an internal disease like IBD, Depression, Cystitis and so on…etc. From someone like you we hear the same, tired cliche, “tough it up.” What a load of crap!

  • Nor do we owe others more than we can do! From your post it seems you are AT THE MOMENT able to control whatever disability you may have by positive thinking. All well and good while it lasts. But don’t SHOULD on those of us for whom all the positive thinking in the world won’t change the reality we deal with.

  • Adventurer_ci

    Who do you expect acceptance from? The whole business has been built around poor me , accept my limitations mentality. No one owes us anything. Forcing acceptance on other people? Why? It is time to rethink the whole thing .

  • There is a HUGE difference between self-pity (“poor me”) and recognizing the limitations imposed by an invisible illness. Most of us are doing the best we can and are NOT looking for pity, just acceptance that we are not teenagers with all the energy in the world.

  • charlesburchfield

    yes! there is much comfort in what you say here & thanks for the reminder. so easy to forget when symptoms are bad. lately I have discovered a possibility to ‘hover’ mentally in my imagination over my days of physical pain & anxiety that takes over and tries to tell me why nothing will change. my body may never recover much of the mobility I want to have in order to do the things I was never able to do and that requires moving through a stage of grief and loss into acceptance of something that is my reality today. I’ve been trying to discipline my mind go over a list of things I am grateful for. this seems to help to get my brain to work better. sometimes I’m able to harvest a modicum of energy and motivation to take care of & cherish myself, my environment and my relationships in this way for today. I’m an artist so when I can move into the zone where I can be creative again I know I have somehow I won a victory for one more day.

  • Adventurer_ci

    Self-pity is easily the most destructive of the non-pharmaceutical narcotics; it is addictive, gives momentary pleasure and separates the victim from reality. Don’t make it your lifetime career. As a life strategy for dealing with adversity, self-pity just doesn’t work. People trapped in self-pity sometimes live their whole lives never realizing they were addicted to feeling sorry for themselves.

  • Ellie Smith

    They still wouldn’t understand. And the main argument would be that we expect, consciously or subconsciously our limitations and what you resist persists. True. Our mental state is what determines the course of our illnesses. True. We are fixated on our symptoms because we have them, the more we are fixated, the longer we remain ill. The game we must start playing, and that is the hardest thing is to convince, yes convince our brain that we are healthy and symptoms mean nothing. After I finished reading The brain that changes itself book, I am convinced that this is the only way we can get better. We must learn not to give in to symptoms, but associate our symptoms with emotions of joy. One must say I lost my mind. But the reality is it can be done. Consistently Imagining yourself healthy is the name of the game we must play. The brain sees no difference between reality and imagination. If you can get your saliva flowing imagining lemon you can get physical changes imagining being healthy. I gave up on trying people to understand how I feel. The won’t. Don’t blame them, you wouldn’t either. Don’t waste your pressious energy on that. Focus your attention on feeling good during your worse symptom. It will take time and effort. I have POTS that literally keeps me in bed most of the time. I crawl to the bathroom and prey I won’t pass out before I finish my business. And still, the only solution is losing fear and learning to actually FEEL joy during your worse symptom. The brain will lay new pathways to health. We just have to trust and be patient and consistent. Self pity is our enemy.

  • deborah ji

    Aw… Hugs. Best wishes to you.

  • deborah ji

    Wow. I have never heard of this condition. I wish you well.

  • Sparks13

    I am not nearly so limited since medication has gotten my Interstitial Cystitis pain mostly under control, but sometimes the medication itself causes it’s own spoon issues. The constant pain has decreased, but the medicine makes me so tired. People don’t get how you can possibly be tail dragging tired when you already sleep 9-10 hours (or sometimes more) a day. I do what I can to mitigate it by using a time release formula and taking it all at bedtime (with doctor’s approval), but some days, the tank is just empty. I’m just thankful that there is something that helped me. I hope all of you can find the same help soon.

  • Sparks13

    Mom is in denial. She doesn’t want to know that her daughter is sick, especially when there is nothing she can do about it. Yes, it’s possible that she is just selfish, but the denial is far more likely. That would explain why she got so angry, instead of just laughing and making a joke out of it. Denial is a very, VERY common way of dealing with unhappy things for people. Everything from sickness, to death. But every time she hears the words, she listens a little. Every time she sees the words, she reads a little. I am going to hope that this is what’s going on in your mom’s head.

  • Happybidr

    I’ve known a church like that. Get as far away from them as you can and find another one. They’ve completely misunderstood the teachings of the New Testament. Any sickness is seen as failure or a lack of faith or a sign that you’re not being blessed, so you must not be on the right track, blah blah blah. Don’t fix them, just forget them and move on. There are plenty of other mature churches out there for you.

  • Happybidr

    Your experience with that teacher sounds like your kids go to the same school my kids did. Instead of telling them my symptoms, which they could never fully understand, I just said, I have a disability and won’t be able to participate in that way. Teachers should be well versed in disability issues given the Americans with Disabilities Act (ADA) and the accommodations they have to make for students. If she continues to be a problem, discuss it with the head of student services or the principal and let them deal with her.

  • Happybidr

    Dear Friends, I want to throw this out there for everyone, since we each have different illnesses with their own abbreviations and treatments and lingo. Instead of abbreviating your illness when you mention it, would you please spell it out at least the first time, then put the abbreviation in parenthesis after it, like this: Interstitial Cystitis (IC, inflammation of the lining of the bladder causing chronic pain). The second time you refer to it, just use the abbreviation IC. This way, we all become more informed about your condition and we understand each other a lot better. If you’re in a discussion about the condition and it’s already been referred to by a prior poster, there’s no need to do it again. Use your judgment. I can barely keep track of all the lingo for my conditions much less everyone else’s, as much as I’d like to. I think the more we fully communicate with each other, the better off we will all be, as individuals and as a community. I really appreciate it, if you can do it. (Sometimes we don’t have energy for even the extra words, I know. But when you can, it’s appreciated.)

  • Happybidr

    Wow, that makes me really sad that your mother doesn’t listen to you, doesn’t put herself in your shoes even for a few minutes. I’m so sorry you have to deal with that extra burden on top of the pain and everything else. It sounds like your Dad gets what your going through much better. I think about how hard it would be if my family didn’t understand and support me as they do every day, and it would be horrible. (I’m a Mom of two college age daughters.). Keep trying to get her to understand what you’re dealing with. You deserve her help and understanding. Hopefully for both your sakes, she will get it one day. Maybe she just doesn’t want to give up on her idea of the perfectly healthy child. Maybe she could go with you to a doctor appointment and get it straight from him/her. Best of luck to you.

  • Gwyn Paviour

    Amanda, I have a son who not only doesn’t understand, but who seems to resent me for not being fit and well now.
    Doesn’t it just take so many ‘spoons’ away each day? ……. coping with that in itself is exhausting!
    I hope you manage to regain some of your spoons from your mum …… could your dad help?

  • Patty Huntley

    I have Ehler-Danlos Syndrome or EDS. I’m type 3 where my joints always are trying to dislocate or are dislocated. My Medical Genetisist said I was the worse case she’d ever seen. She wanted to give me a 12:9 which is impossible. So I am a 9:9 or the worse she could give me. Lol.

    Your “Spoon Theory” is perfect! The first thing I have to do every morning is rotate most of my joints back in place before I can even get up to go to the bathroom or anywhere. I “look” fantastic because those of us with EDS have great skin. Inside the pain is incredible. My Ligaments do not hold me together my muscles and tendons do. Not very well of course.

    I love your theory because I now have a way to explain to others what it is like just to live. When I over do it in a day I’m wiped out for the whole next day. I’m sure you all understand though. Thank you again for this.

  • Tiffiny

    I have a lot of trouble trying to explain or get my family to understand my Avascular Necrosis. The Spoon Theory is understandable for anyone. Thank you for sharing it!!!

  • veska

    My dad used to get frustrated a lot with my depression. Have you considered going to family counselling with your parents? It helped me a lot, because my dad really didn’t understand nor want to understand my depression, he just wanted it gone.

    Perhaps your father would be open to the idea and approach your mom about it. At the very least, you may need to consider getting counselling for yourself, so you can talk to someone about the stress your family is putting you through.

  • veska

    Thank you for this. I have treatment-resistant clinical depression, so people never think I am sick. But if I could, I’d never leave my house. I’d never leave my bed some days. Often it takes twice the amount of work for me to find the motivation to do an activity as it does for a “normal” person to perform the task. The spoon theory doesn’t just help explain how I feel, it reminds me that I’m doing what I can, when I can. That I really am fighting a disease. That I don’t have to hate myself because I’m not able to do as much as a normie.

  • Fe

    oh Amanda,
    I’m sorry you’re mother is acting like an ass. Either she is one, or she can’t deal with the fact that she can’t make her daughter feel better – and she takes it out on you.
    Maybe some day she’ll get it. Or not. It looks like your dad is your your corner (?), and keep finding people who get it, who support and believe you, and are doing the work.
    Fibromyalgia sucks hard – and that’s just my perception from being friends with two people who have it.
    All good things to you.

  • Cat

    I absolutely love the Spoon Theory! I have fibromyalgia as well as degenerative disc disease, arthritis, tendonosis, bursitis, bone spurs, bulging discs and complications due to diabetes. My husband is sympathetic sometimes but I don’t think he truly understands what I go through on a daily basis. Sometimes I think he feels that I am just lazy and that makes me feel so awful. I will ask him to read the Spoon Theory today, and I hope it will help him to understand what I go through every day a little bit better. Thank you Christine for giving me a way to explain how it feels to have chronic pain in a way that people might understand. God Bless you and everyone who deals with any condition that affects their life on a daily basis.

  • •Gabi V•

    My mom’s not nearly as harsh about my condition but she doesn’t really show much interest in understanding what I go through with having Lupus. She hates her job. SO MUCH. So when I need to stay home from school or go late because I was having a flare-up in the middle of the night or for whatever reason, she is reluctant to letting me stay home because she doesn’t get to. Her and my brother both think I’m bullshitting them when I say I’m sick. My brother has never seen me in the hospital with hardly any hair, IVs sticking out of me while I’m all pale skinned and can hardly move. My whole family doesn’t want to believe that I’m sick because they can’t see it. It’s the most frustrating thing to deal with when the people who are suppose to be your back bone don’t support you the way they should. They probably wouldn’t give the Spoon Theory the time of day because they wouldn’t find it amusing. Not even for my sake. I love the Spoon Theory and I think it’s the best way to explain exhaustion and every day life for anybody with any physical condition. I use it all the time to explain to friends and even my teachers but my family? Nope. :/

  • Amanda

    So I tried doing this with my mom because she pretty much thinks my fibromyalgia is bullshit. Of course shes wondering what the hell Im doing with all these spoons. Before we even get started she say ” what is this? Something for your fibromyalgia shit again!?”. I ignore it and continue and she starts naming off what she does on a typical day.
    Her: wake up
    Me: ok give me a spoon
    Her: make and eat breakfast
    Me: ok give me another spoon
    Me: what do you do now?
    Her: make my bed, get in the shower, go to work
    She’s getting frustrated at this point
    Me: hold on hold on, ok 2 spoons. Do you do your hair and make up before work
    Her: yea
    Me: ok, hair, make up, and get dressed. Spoon.
    I gave her a break and only consider that 1 spoon for her instead of 3.
    I also didn’t take a spoon away for driving to work
    Me: ok, your at work and you’ve been there about 2 hours, you haven’t taken your lunch yet. Another Spoon.
    Her: what? No I don’t get tired until 3 o’clock
    Me: just give me a spoon
    Me: so you get to take your lunch and that helps a little bit so here you get this.
    I give her 1 of those little corn on the cob holders, I mean I needed something small, I couldn’t give her a whole spoon back just for a lunch break.
    Here’s where she loses her shit and starts yelling.
    Her: I’m not doing this! This isn’t about me, you dont use what I do in a day, your the one with fibromyalgia.
    Me: No! It’s to show you how YOUR life would be affected if YOU had fibromyalgia!! Each spoon represents the exhaustion you get just from doing the littlest things!!
    Her: whatever Amanda
    My Dad: well you just had to go and screw that game up didn’t you? (Speaking to my mom).

    Yep that how my spoon story goes, it’s a real shitty feeling when you don’t even have support from your mom.

  • norene

    I have a dd and can relate, especially now that I’m getting older.

  • Talamorgan

    Came to this through the Blogess. I suffer from depression, and this is just an amazing way to explain to people how some days you can tackle anything that comes your way, and other days (usually the day after a tackle-anything day) you can barely get out of bed. I’m hoping this will help people I know understand a little better how sometimes I just CAN’T do what you want me to do, CAN’T connect with you the way you’re trying to connect with me, CAN’T use a spoon to dig myself out of the hole I’m in because then I might not be able to dig myself out tomorrow. Thank you.

  • Alainna Robles

    Thanks! Yeah, I started taking Synthroid in 7th grade! I talk to a lot of people on a closed Facebook page with Epilepsy a lot, it helps too since right now the area where I live currently doesn’t have a support group anymore. I also take Whole Food Supplements from my aunt, who is board certified in Nutrition and a chiropractor, she actually wanted me to go on the Modified Atkins(though she told me Ketogenic Diet-so I argued that it was only for kids) Diet before I went through with my surgery in 2009, the trial was in 2008, and I had to have my Corpus Callosum split during that time because my neurons were going too fast and needed to be slowed down for an internal EEG. My last seizure was September 24 this past year. I was in my fiancée’s car and we were on our way back from a movie a couple days before he left to visit his brother in Seattle. I’ve already made it past the seizure-free mark for Wisconsin driving to get a license, but I would rather wait until I move out of my parents’ house again (as my mom doesn’t really support me driving, and I really don’t want to learn to drive a big truck that I can barely get into, like my dad’s- if I saw a sign and it got blurry, I would be able to pull over). I’m currently getting off my Levetiracetam(generic Keppra), as it was giving me a constant cold and I had to use an inhaler all the time, because I was on too high of a dose, now I am switching to Aptiom, because my neurologist wouldn’t lower the dose without me being on a different drug ?! I’ve honestly been thinking of switching to a different neurologist, but the one my primary referred me to is far out in the county for me to get to that I would rather wait until I move out with my fiancée. I like the place where the neurologist I have now is at, however, it’s a long drive up to the Medical College, and just would rather have one closer.I have had some good people in the past up there, but this one just isn’t willing to cooperate with my Aunt(board certified in Nutrition and a chiropractor). I’d really like one I can work with, especially after he put statistics in my face about how “rare” the side effects of rhinitis, sinusitis, and a host of other respiratory problems were from the Levetiracetam-and the pharmacist I called told me about the side effects-yes, I suspected it because I knew it had to be medication related since I tried different natural home remedies and nothing was working.
    One of my other aunts has tried a C-PAP machine, because of sleep apnea. I don’t fall asleep fast really, but I do a lot of praying at night before sleeping, but I think it mostly has to do with my medications, as I have had trouble falling asleep since I was a kid. I couldn’t STAY asleep, but was able to fall asleep fast when I had the Aptiom at bedtime(moves it to mornings because I kept getting up around 3,4, 5am and wasn’t able to get back to sleep), I also take Lyrica 100mg twice a day, Topiramate 100mg twice a day, and 2 Clonazepam 0.5 mg at night. Currently, my Levetiracetam is at 250mg-2 twice a day. After I see the neurologist again we’ll discuss weaning off it.

  • Laura

    As JCB said, I love that this post brings everyone together! I’ve had UC for 6 years, ostomy for 4 years and have been dating my current (and hopefully final) boyfriend for 2 years. About a year ago, he made plans for us without asking me. I started to cry and when he asked me why, the only words I could get out were “I just don’t have enough Spoons!” Of course, he had no idea what I was talking about. I pulled this up on my phone, he read the whole thing, then looked up at my with tears in his eyes and promised me he would always consider how many spoons I had before making plans. I have some amazing days and some obviously not so great days, just like every spoonie, but every day, he never forgets to ask about my spoons, so he and I know how to approach the day. Thank you for creating such a great way to explain to people without chronic illness what it’s like. It brought a whole new understanding to our relationship.

  • Eric

    Huffington Post, Urban Dictionary, Hashtags. Congrats you’re (we’re) a meme.

  • Mia

    I wholeheartedly agree. It has enriched my life to read about, and communicate with, people who deal with a variety of different diseases. It is healthy to know ‘we are in this together’. Mia ME/CFS 24 years.

  • Marcus Bumgardner

    Find a new church. Only God can judge you. What kind of person of God talks about others….noone I want to be associated with. God will bless those who ask. God bless you.

  • JCB

    What I especially like is the way that this blog has brought together people with different problems. Normally we are each shut way in our own little medical compartment. Sometimes we don’t even know people with the same medical diagnosis. It is good to see what we have in common, that we are all having to face apparently different diseases in the same way. I say to you “well done for bringing these lives to touch together for a little while so that we don’t all feel quite so alone.” Too often we are on the defensive and we even think about other people’s illnesses as not being as real or as bad as our own. It’s good to see other people here and saying we are in his together. I have read here about illnesses that I never knew had similar problems and I now understand a little better. John. ME/CFS 26 years

  • Carol G

    I am sitting here with tears streaming down my face. Being newly diagnosed with lupus, but not new to all the symptoms and issues that go along with it I have struggled to explain to family and friends why I am scared to make plans or have to cancel on plans already made, trying to explain that I am not suddenly lazy – I’m exhausted and in pain. The spoon theory puts everything in an easy for anyone to understand way and I will share it with my teen age boys when they get home today. Thank you for explaining what I have struggled to explain…..

  • Nikki Livingston Morgan

    I love this! I struggle so many times to explain it in a way that they truly grasp the entire disease. I think I leave them more confused than anything. I would love to post this on my Facebook page along with your name of course for complete credit as I doubt anyone would believe I came up with this idea. lol. I also read where without your permission you do not want anyone to reprint or publish this article. So in honoring your wishes I am requesting permission to copy & paste it on my Facebook page along with your name & website clearly listed with it? I have teachers at my kids school that I’ve been told by other teachers who over heard them that they think I’m just lazy. I had one teacher tell me when I got better I needed to volunteer a 2nd time selling baked goods for my daughters cheer squad at a ballgame. I tried to explain to her that I don’t go out in the cold winter months because I seem to catch any virus going around & I can’t change being sick with 5 kids to take care of & a husband that needs my help. I also told her the cold weather causes my joints to be stiff & extremely painful. That the cold literally hurts my bones. That’s when she told me when I was better to let her know because all the moms had to put volunteer twice. I saw I wasn’t getting thru to her so I just told her I wasn’t going to be able to the rest of the basketball season & I would be happy to have my oldest daughter to fill in for me or my mother in law or best friend said they would for me. She said due to liability reasons & just knowing that person & being able to trust them we couldn’t do that. Ugh! I also then told her I would be happy to donate the money my 2nd daughter, the cheerleader, needed to cover her part of the fund raiser that went toward cheer camp in the summer. She said that wasn’t possible because she didn’t know how much profit they would make. So I told her after the fund raiser to figure up how much each girl got by the time it’s all added together & divided by the number of cheerleaders minus my daughter & I would donate that amount for my child. She huffed & said just let me know when you are better. I just said I sure will. Sorry I guess you can tell that one is still a very sore subject. But I didn’t lie. I told her I would let her know & since there isn’t a cure she will be waiting a long time. Lol. I also get that a lot from well meaning people. I hope you get to feeling better soon or I hope you get over this soon. I don’t want to sound like a Debbie downer so I just nod & let it go. I truly think this would help even the most medically challenged when it comes medical knowledge & terminology grasp the basic idea of lupus. I really hope you will allow me to post this only with full credit to you. And thank you for putting into words, what I’ve tried & failed at so many times, so eloquently the way lupus affects most of us on a daily basis. Very creative!
    Sincerely,
    Nikki Morgan
    from MS
    I was diagnosed at age 32, 2 months after my now 7 year old twins were born. My first symptoms were extreme fatigue & wanting to sleep day & night. The 2 months after the twins were born I felt great! I probably wouldn’t have gone to the doctor just for the fatigue because your supposed to have fatigue with twins. But the bottom of my feet felt like I had walked on hot coals. It just started one morning out of the blue! No injury no warnings just got up one morning & it hasn’t stopped since. They were red & slightly swollen on bottom. And they were as soft as a baby’s bottom. It felt good to rub them but only gently. I bought new tennis shoes for work as mine were about 3 years old. It might have helped a little but not nearly enough. What really got my attention was when I woke up in the morning instead of being better I could barely stand to put my weight on them when getting out of bed. I would have to hold onto things till I got going. Taking a hot shower or bath would help. Then it would get better the more I walked. But if I overdid it I would have to get off of them & let them rest. And by the end of the day I would nearly be in tears. Luckily with my job I was standing & walking some but I usually sat at a desk for 1/2 to 3/4ths of the day. But I knew I’m a go go go type person or at least I used to be so I knew something was wrong. My grandma had lupus & I was with her when she was going thru all the testing & docs. It took 10 years before she got a positive Ana but luckily her doc knew & trusted her so he went ahead & treated her for it. I also had 2 great grear aunts to die from it & a great great uncle. A year after I was diagnosed I had a cousin to be diagnosed with it. Then at the age of 14 my oldest daughter was diagnosed with it. Thankfully for now here isn’t active so the doc decided not to put her on meds because it could cause it to become active. She only has the fatigue so when she’s tired we let her take a nap. We don’t push her too much praying it stays inactive for her entire life. My oldest son who is now 12 has had a couple of positive Ana’s but because he was having elevated liver enzymes & he only tested positive twice out of 1 & 1/2 years worth of blood tests checking his liver they said it wasn’t lupus. I’m not so sure about that because I know how lupus can be. I’m praying he stays negative but that will always be in the back of my mind. I know you can have lupus & have negative Ana’s. And it’s normal for the Ana levels to fluctuate. So with all that said lupus sees to run in our family. Being around my grandma was going thru trying to find out what was wrong with her I was familiar with the process & how she felt from the lupus. I’ve done so much like her that it was familiar. That helped a lot in knowing what was wrong with me. I just pray for a cure for my daughter & anyone else out there suffering. I hope my rant might help someone else who is struggling.

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