Chronic Pain, Disability, Fibromyalgia, Health, Spoonie

What is a Spoonie?

This article covers “The Spoon Theory”

This post is especially for newly diagnosed Fibromyalgia patients.

A Spoonie is a person who suffers from an invisible chronic illness, like Fibromyalgia, Lupus, Chronic Lyme Disease, etc.

The term originated from a post written by Christine Miserandino, entitled “The Spoon Theory”. This YouTube video is of her explaining the theory.

Since the article came out, people have connected via Spoonie or #Spoonie.

Transcript

The Spoon Theory

Written by and spoken by Christine Miserandino

That brings us to “The Spoon Theory”. This is very true. I did not make this up. Yes, I’m from New York, and all we do is eat at diners. This is a very true story. If you, sorry, can’t tell, I am bold. I don’t have any shame and yes, I will run around the room and go crazy and that’s not unlike me so, this is a very true story.

There we go. My best friend and I were in the diner talking as usual. It was very late and we were eating French fries with gravy. Do you guys do that here? Oh, you need to try it. It’s such a New York thing. Get brown gravy, French fries. Delish! We’ll go back to the story. Sorry, that was so, you need to do that. We’ll all go out after the conference. Where’s your local diner?

Okay, let’s start all over. 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 we spent most of our time laughing. As I went to take some of my medication 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 to be sick? I was shocked, cause not only because did she asked me 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, she even saw me 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 any of 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 me 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 for guidance, or at least to stall for time to think. I was trying to find the right words. How do I answer a question I was never able to really answer myself? How do I explain every detail of every day being affected and give the emotions a sick person goes through with clarity? I could have given up. I could have cracked a joke like I usually do and change 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 ever explain my world to anyone else? I at least had to try.

At that moment “The Spoon Theory” was born. I quickly grabbed every spoon on the table. Hell, I grabbed spoons off all the 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 a luxury of a life without choices. A gift most people take for granted. Most people start the day with an 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 use spoons to convey this point. I wanted something for her to actually hold. For me to then take them away! As most people who get sick, feel a loss of a life they once knew. If I was in control of taking 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 going through, but she thought it was a joke, and she’s always up for a good time. So, she said, what was I talking about? She knew that I usually joke when I’m talking about touchy topics. Little did she know how serious I would become. I asked her to count her spoons. She asked why? 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 you to know where you’re starting. She counted out 12 spoons. Yes, I did twelve. It’s a story. She laughed and said that 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 had wanted more spoons for years and haven’t found a way 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 said: “I’m taking away a spoon!”. You don’t jump out of your bed! I said: “You don’t just get up! You have to crack open your eyes, and then realize you’re late. You didn’t sleep well the night before, you have to crawl out of bed and then you have to make yourself 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 on all your spoons for today and tomorrow too. I quickly took away a spoon and she realized that she hadn’t even gotten dressed yet. Showering cost a 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’d give her a break. I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her again and broke down every task to show her how every detail needs to be thought about. You cannot just simply throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on. If my hand hurts that day, buttons are out of the question. If I have bruises that day and need to wear long sleeves, and if I have a fever, I need to wear 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 five minutes for feeling badly that it took you two hours to do all this.

I think she started to understand when she theoretically didn’t even get to work and she was left with six spoons. I then explained to her that she needed to choose the rest of her day wisely. Since when your spoons are gone, they’re gone. Sometimes you can borrow against tomorrow 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 might be the day that a cold comes, or an infection, or a number of things that could be very dangerous. 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 that 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 pots. If she went out to dinner, she might be too tired to drive home safely. Then I explained that I didn’t even bother to add into the scheme 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 was only 7:00 p.m. 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 the chores, but you just 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, 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 every day?” I explained that some days were worse than others and some days I have more spoons than 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’d been holding in reserve. I said simply, I’ve learned to live life with an extra spoon in my pocket in reserve. You always need to be prepared. It’s hard. The hardest thing I’ve 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 not get things done that I want to do. 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 100 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’m strategizing a war. It is in that lifestyle the difference between being sick and healthy. I miss never having to count spoons. I miss that freedom. It’s the beautiful ability to not think and just do.

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 could never 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 one spoon in my hand. I said: “Don’t worry! I see this as a blessing” I’ve been forced to think about everything I do. Do you know how many spoons people waste every day? I don’t have room for wasted time or wasted spoons and I choose to spend this time with you.

Ever since this night, I’ve used a “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 a little bit better but I also think they live their lives a little differently too. 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’ve 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.

I want to just thank all of you and for letting me spend my spoons with you. They’re worth everything, every spoon, the flight, the everything was so worth it and for welcoming me into your family

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