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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  • 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.

  • Pengy

    This is a wonderful way to explain chronic pain/illness. I have degenerative bone disease and this can be applied to how I live also! Thank you SO MUCH for creating this for us. I want to say more, but I am so moved by this, I cannot come up with how to word it. Thank you again.

  • Scott Connenct

    Wnoh this is all beleave able____Life is good when you have your love ones around you, I am saying this because when i had issues with my lover i never seen life as a good thing but thanks to Dr. MOON TEMPLE whose details is [email protected] for helping me to cast a spell that brought my lover back to me within the space of 48 hours. I am not going to tell you more details about myself rather i will only advise those who are having issues in their relationships or marriages to contact Dr. MOON TEMPLE through his email [email protected] ////

  • Raindrops of Sapphire

    Thank you for sharing this. The spoon analogy is amazing. I have CFS/M.E and I too have to live with choices and where I want to spend my energy. I have to spend most days at home as I have a very limited amount of spoons myself, so I fully understand this entirely. I know Lupus isn’t the same, but they are similar in having limited energy and ability to do things, so I really appreciate this article so much. I hope you are doing ok!

    http://raindropsofsapphire.com/2015/06/30/a-fashion-blogger-with-m-e/

  • Octarin

    This is an excellent article. I’ve shared it on my facebook page, link, preview and all. I have R/R MS and even though I’m not needed to relinquish as many spoons as you do, I do get this entirely. You are lucky in that you have had someone who was interested enough to ask you in earnest about this, and so you came up with this wonderful and useful theory. People in my life treat my illness as an annoying disappointment, and even an excuse to get away with things. I can say this, though. If ever anyone is interested enough to ask me, I will use your spoon theory to explain things. Be well, all the best, from me. xxx