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.

Now you can purchase small and large poster prints of “The Spoon Theory” from our Online Store! These posters will make a perfect “get well gift, or friendship/ I understand gift.” We also think it would make a perfect addition to any doctor’s office, or support group meeting room.

The Spoon Theory Large Poster – $22.99

The Spoon Theory Small Poster – $18.99

Most importantly, get one for yourself!

©2017butyoudontlooksick.com
  • Tandi Caldwell

    Brandon, have you been tested for EDS? You describe many of the symptoms. I have the high pain tolerance too. Your story sounds so much like mine.

  • Fitness Fibro

    Yes absolutely!

  • Amaya Thompson

    Thank You! This was amazing, it’s so hard (depressing) when people get upset with me because they don’t understand when I say I can’t do things. I don’t have enough spoons, or I’m saving them in case I need them later to take care of whatever might come up with the kids…

  • Peggie Andrews

    I understand IC very well having had it most of my life. I am 66 now and wish that people would see me as a person worth knowing instead of looking at me like I am dirt.

  • Ol Grey Wolf

    Thank You for this…It really helps me to see my wife”s disabilities…

  • Marie Ward

    Thank you for this. I suffer from RA and Chronic Migraines. It isn’t easy. Some days I dont even get 1 spoon. I’m stuck in bed in a very dark silent room all day. Sometimes multiple days. I have been very fortunate in having such an understanding family and an amazing Husband who at least try and understand and who give me the patience I need.

  • Christina Yates

    I was an able bodied nurse and single mother of two until a wreck made me disabled I was very unfortunate in that what was affected was my brain I have lived with the same migraine worse than any I have every had before and it never goes away or responds to anything well a few short weeks ago I found out that not being able to turn my neck was part of having arthritis in it now when they did the X-ray at a new chiro as I was looking at more surgery and this one would be twice a year for the inforseeable future I said there has to be a better way so I went on my own meaning I didn’t have a dr tell me too where they took X-rays new ones that shows my neck is literally in my throats and my spine is impeading my head no wonder I am in pain I went back to my regular dr this has been going on 4 years with pain so intense it is all I can do to hang on and he said drs don’t look at alignment they don’t think it plays a big role so this has been mostly fixable for almost 4 years!!! Now in extreme therapy with chiropractic 3 times a week massage therapy which is a mini torture session 1-2 times a week and intense pt when the normal pt drs said they couldn’t do anything to help me now the sudden onslaught of appts draines me completely daily I am lucky to shower once a week or even get my own food if I want to focus on getting better it was my massage therapist who shared this with me like wow someone gets it no I don’t look sick but my pain has never been down to just a 10 this whole time I say awake for 5 days or more at a time due to the pain and yet no one gets it I thought I had lost all my friends turns out they needed to read this article because it helped explain that I couldn’t do the same things I was always go go go before I had to be slowing down was so hard then for the longest time I felt like I only got 3 or4 spoons a day I longed for 12 I want my unlimited back and while my condition may or may not be permanent it is still to early to tell this has helped so much to try to explain why I can’t I can’t just take a shower and go out if I take the shower I have no spoons to go out with even to eat if someone drives me if I skip the shower I feel to embarrassed to go out but I can visit with a friend in my home I just read this to my daughter so she would understand when I ask her to do or get something for me I am not being lazy I am trying to save my spoons to spend time with her and her brother it is a wonderful piece well written to help ppl understand I think more drs need educated and since becoming the pt I have been in awe of how horrible drs ers and other ppl and places treat ppl who have an invisible illness if I try to go to the we for rescue as we call it because I can’t take one more min in the pain I am in I get turned away saying I am a drug seeker or a junkie neither of which is true I was a nurse and was told to always accept what a pt tells you their pain level is for ppl who live in chronic pain can be at a 10 and still be talking laughing making jokes or on their phone because it is their life not all people can see their pain so I always did that yet when I was the pt no one treated me like that the last several times a dr wouldn’t even come in and see me idk how they can justify this when I have been diagnosed wrongly I know now but still in this much pain with multiple specialist backing it that my pain is real and I never went in laughing always sobbing and screaming and yet that’s ok I don’t get it we are taught so much in the medical field yet compassion is so lacking for what the dr can’t see as a nurse this is appalling anyway but just saying most of you have a different illness but all the same we feel invisible half the time with no energy very few spoons and at a lose for trying to get ppl in our lives to understand our limitations I can’t talk on the phone what do ppl do they call I only put down my poa number yet I get calls and get ppl refusing to deal with my poa it is horrible I have one because I can’t keep up on all of it the papers for help the deadlines I am considered to be home bound and bed bound I am not able to talk on the phone or drive yet I am expected as a disabled person to jump through all these hoops as well I got rid of my phone so I hope they have to start calling my poa but it is crazy what they expect they expect us to not be ill when we are ill to much so to have to deal with all the things they want us to deal with anyway the only way I started coping with this was talking to others in online support for migraines and all other invisible illnesses and found others like me who didn’t know relief only pain and worse pain my heart goes out to everyone who is suffering as well with ppl all around us who think we need a push we are not lazy we are sick and to sick to deal with even a fraction of what they want us to do for any kind of assistance which we need I want nothing more than to be well and working and be my own person again they act like we are lazy I wish more people would understand this therory and realize we all have a different number of spoons and something’s take more than others I would love to send posters to everyone who expects things done in less than 10 days I can have several bad months it is all I can do to make it to the bathroom let alone prove and fill out a book anyway thank you Christine I know this has touched many and will many more I wish the whole world got educated on this matter and took it seriously

  • Rochelle25

    Thank you so much for posting this. I shared your theory on my blog about my journey dealing with my illness. It is a beautiful way to explain my current daily limits. Thank you!

    https://journeybacktomytruth.com/blogs/news/the-importance-of-knowing-your-limits

  • rosiet

    This story has given a tangible/visual explanation about my daily struggles with Sjogrens and RA. It gives me something to share with those around me who just don’t get it. Thanks!

  • Jennifer Lee

    Thank you. One of the defining characteristics of Chronic Fatigue Syndrome is that exercise actually makes you more tired, instead of energized. A well-meaning friend of mine dragged me to a yoga class after spending the night at her house. I needed to shower first, so she woke me 3 hours earlier than I am used to waking, which was devastating. Then having to shower quickly sapped the last of my energy, as I usually take 30 minutes because I have to rest periodically. Then the yoga studio was FREEZING, and a fatigued body cannot heat itself so I was miserable. The first thing the instructor asked us to do was JOG around the room barefoot! I had just recovered from a year with plantar fasciitis, a painful disorder of the feet that is agonizing, so there is no way I was going to risk it. I went outside to sit in the sun and warm up. My friend and her mother were irritated that I was such a “bad sport”. That hurt more than anything else- being judged after they had just worn me out and put me through hell. I was sick for days afterward.

  • You might get a faster response if you just scroll up and order a small poster.

  • Karlota

    I have rheumatoid arthritis, and I’ve never read anything like this. Just came back from holidays with friends and family. I was invisible for them the days I had my two injections and the day after, when I usually have two small spoons to take care of myself. It hurt a lot, but from now on I will speak up and be a spoonie. Thank you!

  • Annelise Wilkie

    Hi Christine,

    I am an Autistic woman who identifies strongly with your Spoon Theory, although I usually refer to my ‘copes’ rather than my ‘spoons’. I would love to have your permission to print a copy of this for my Autistic daughters’ kindergarten teacher to help her understand all the energy that goes into just turning up each day, and the need for down time to recover ready for the next onslaught. Thank you in advance!

  • did you give a copy of the Spoon Theory to your therapist? Sounds like they need a dose of reality for those you have hidden illness/pain. People who don’t suffer such limitations have no grasp on why or how you are limited. So they think pushing you will get you moving and that will help. Not really. If I overdo it I pay for it at least 3 days with a headache and fatigue. It’s really frustrating and hard to accept in yourself that you have to be aware of your limits. I’m still trying to find a way to tell myself to STOP even tho that inner voice has told me to, I often ignore it- or it chimed in too late. I found setting an hourly chime for the day helps remind me either to move around because I’ve been sitting too much, or to stop and rest and take inventory of my physical exertion- it’s called BlipBlip and is free. You might check it out.

  • I too have IC – but control it mostly thru diet. I have other issues that cause chronic pain as well- so I keep eliminating things from my diet- I’m beginning to wonder if I’ll reach a point of not having anything I can eat. Some days are complete down days because of the entire package… a friend showed me the spoon theory years ago and I’ve referred many others to it. Families and friends without health limitations have a hard time grasping why you can’t _____ right now. This is such a helpful tool.

  • Sarah Kashmiri

    I admire your use of the descriptor, “temporarily able-bodied”!

    But for the Grace of God, anyone’s life can take a sudden turn, changing healthy high-functioning people into “Spoonies” like those of us living with chronic conditions, which can frustraringly hijack our best intentions to live functional, fulfilling, contributing lives, as most people want.

    It also boggles my mind how often those in medical and medical coverage/ claims fields do NOT understand how such chronic conditions can make it extremely difficult for us to keep up with appointments, multiple contacts, piles of documentation/ applications/ legal paperwork/ medical assessments, and deadlines! IF we COULD handle juggling ALL of that we would NOT be seeking all the interventions and supports we are forced to perpetually hoop-jump to get access to said “supports.”