Christine Miserandino is no stranger to lupus. She's lived with the illness for over 18 years and has undergone chemo just like Selena. Miserandino came up with The Spoon Theory, originally published on her blog, to explain to her family and friends what it's like to live with lupus.
Every illness has different symptoms and ranges in severity, so Miserandino's experience can't speak for everyone, including Selena. But The Spoon Theory has become so popular that people living with chronic diseases call themselves "spoonies" and use it to explain their illnesses to loved ones.
"After I heard the news about Selena, I just wanted to reach out to her and hug her," Miserandino told MTV News. "We all make choices whether to reveal our lupus or not. Selfishly I'm thankful she did. ... By sharing her truth, she's brought a spotlight to a very unknown illness. This will help millions of new patients get diagnosed faster and help current patients feel so not alone. I hope she knows she has a 'spoonie' friend to talk to ... if she does need one, I am right here."
Miserandino kindly gave MTV News permission to publish her full Spoon Theory, written below, to raise awareness for chronic illness and to provide a glimpse into one person's life with lupus.
"The Spoon Theory" by Christine Miserandino
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.
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 ... 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. ... 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 affected and explain 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 between 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, be in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she's always up for a good time. 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 now have to 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 spoons along the way, but 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 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 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 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 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. 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 five minutes for feeling badly that it took you two hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work and was left with only 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 are gone. Sometimes you can borrow against tomorrow’s spoons, but just think how hard tomorrow will be with fewer spoons.
I also explained 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 don't 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 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.
She decided to make soup because it was easy. I then said it's only 7 p.m. You have the rest of the night, but maybe one [more] 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.”
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's 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 am strategizing a war. The difference between being sick and healthy is in that lifestyle. 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 The Spoon Theory is good for understanding lupus or for anyone living with any disability or illness. ... 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.