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Life is not a problem to be solved, but a reality to be experienced.
The Spoon Theory
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 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.
I looked around the table, seeking help or guidance, trying to gather my composure and buy some time to think. How do I answer a question that I've never been able to answer for myself? How do I explain the impact of every detail of every day and the emotions that a sick person goes through with clarity? I could have simply given up, cracked a joke as 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 it to my best friend, how could I explain my world to anyone else? I had to at least try.
At that instant, an interesting idea struck me - the spoon theory. I quickly gathered all the spoons I could find on the table, even those from the other tables. I handed them over to her and said, "Here, you have Lupus." Although she looked slightly bewildered, as anyone would be when handed a bunch of spoons as a gift, she listened to me carefully. The cold metal spoons made a clanging sound as I grouped them together and placed them in her hands.
I went on to explain that being sick and being healthy are two completely different things. The difference lies in the fact that when you are unwell, you have to make choices and consciously think about things while the rest of the world simply doesn't have to. The healthy take the luxury of a life without choices for granted.
At the start of the day, most people, especially young ones, have an unlimited amount of possibilities and energy to do whatever they desire. They don't need to worry about the consequences of their actions. To convey this point, I used spoons as a metaphor in my explanation. I wanted my friend to hold something that I could then take away, just as people who get sick feel a "loss" of the life they once knew. By taking away the spoons, I was demonstrating how someone or something else, in this case Fibromyalgia, has control over their life.
At first, she grabbed the spoons with excitement without understanding what I was doing. She thought I was cracking a joke as I usually do when talking about touchy topics. However, as I continued, she realized the seriousness of the situation.
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 Fibromyalgia
She listed off her daily tasks, both simple and complex. I explained to her how each task would cost her a "spoon". When she mentioned getting ready for work as her first task of the morning, I cut her off and took away a spoon. I explained that she doesn't just wake up and get ready; rather, she has to first open her eyes and realize that she's late. She might not have slept well the night before, and she'll have to crawl out of bed and make something to eat before doing anything else. This is because if she doesn't eat, she can't take her medicine, and if she doesn't take her medicine, she'll lose all her spoons for the day, as well as tomorrow. I took away another spoon, and she realized that she hadn't even gotten dressed yet.
Taking a shower was a tiring task as it consumed one of her "spoons" just for washing her hair and shaving her legs. Even reaching high and low to do these tasks in the morning could cost more than one spoon. However, I decided to go easy on her and not overwhelm her with the knowledge that it could cost more than one spoon. Getting dressed was another task that cost her a spoon. I stopped her and explained that every task needed to be broken down into smaller details. When you are sick, you cannot simply throw on clothes without thinking. I explained that I have to carefully choose what clothes I can wear based on what I can physically put on. For example, if my hands hurt, I cannot wear clothes with buttons. If I have bruises, I need to wear long sleeves, and if I have a fever, I need to wear a sweater to stay warm. If my hair is falling out, I need to spend more time to look presentable, and then I need to factor in another 5 minutes to feel bad that it took me two hours to do all of this.
She seemed to be getting the hang of it, even though she hadn't started working yet and had only six spoons left. I told her that she had to use the rest of her day wisely because once her spoons were gone, they were gone. Sometimes you could borrow from tomorrow's spoons, but it would make tomorrow harder. I also had to explain that a sick person always lives with the fear that tomorrow might bring a cold, infection, or any number of dangerous things. Therefore, it's important not to run low on spoons because you never know when you'll need them. I didn't want to make her feel down, but I had to be practical, and unfortunately, being prepared for the worst is part of my daily life.
As the day progressed, she gradually realized that any physical activity like skipping lunch, standing in a crowded train, or typing for long hours at her computer would cost her a spoon. This forced her to make mindful choices and think about things differently. For instance, she had to choose between running errands or having dinner that night.
At the end of her pretend day, she mentioned feeling hungry. I suggested that she has to eat dinner, but she only had one spoon left. I explained that if she cooked, she wouldn't have enough energy left to clean the pots, and if she went out for dinner, she might be too tired to drive back home safely. Additionally, I pointed out that she was feeling nauseous, which made cooking an even less feasible option. Finally, she decided to make soup as it was an easy choice. After making the soup, I reminded her that it was still early - only 7 pm - and that she had the rest of the night ahead of her. However, she would only have one spoon left, which meant she had to choose between fun activities, cleaning her apartment, or doing chores. It was not possible to do all of them.she had to choose between fun activities, cleaning her apartment, or doing chores. It was not possible to do all of them.
I hardly ever see my friend emotional, so when I noticed her upset, I thought perhaps I was getting through to her. I didn't want her to be upset, but at the same time, I was happy that somebody finally understood me to some extent. She had tears in her eyes and asked me quietly, "how do you do it? Do you really deal with this every day?" I explained that some days are worse than others, and on some days, I have more energy 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 then gave her a spoon that I had been holding in reserve and said simply, "I have learned to live life with an extra spoon in my pocket, ready for use in reserve. You need to be prepared all the time."
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 had an emotional conversation and talked for a little while longer, I sensed that my friend was feeling sad. Perhaps she finally understood that she could never truly and honestly say that she understands me. But at least now she might not complain as 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. As we walked out of the diner, I gave her a hug while holding the one spoon in my hand. 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 every day? I don’t have room for wasted time, or wasted ‘spoons,’ and I choose to spend this time with you.”
Ever since that night, I have been using the spoon theory to explain my life to many people. Spoons have become a code word for what I can and cannot do, and my family and friends refer to them all the time. When people understand the spoon theory, they seem to understand me better, and they also start living their life a little differently. I believe that the spoon theory can help anyone dealing with any disability or illness, not just Fibromyalgia patients. It can help them appreciate life more and not take everything for granted. I often make a joke about giving a piece of myself, in every sense of the word, when I do anything. I have become famous for telling people jokingly that they should feel special when I spend time with them because they have one of my "spoons".