Living with a chronic illness is difficult, it manages to weasel its way into pretty much every aspect of your life. No matter how positive you stay or how much you try to live a normal life, you can never truly escape the clutches of the chronic illness. One of the biggest challenges chronic illness warriors face is trying to explain to friends, family, colleagues, acquaintances etc, what they are going through.
Christine Miserandino is a woman who suffers from Lupus. One night, she was out for dinner with her best friend. This friend had been in her life for years, she had attended doctors appointments, helped Christine when she was terribly ill, she had been there for most of the difficult times. When Christine took her medication that night, her friend stopped the conversation and looked at her with an awkward stare. She then went on to ask Christine what it felt like to have Lupus and to be ill.
"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."
Christine sat for a moment trying to figure out a way to explain something she had struggled to define for years. And in that moment, the "Spoon Theory" was born.
Christine grabbed spoons from all over the restaurant, she clasped them together in her hands and then handed them to her friend, saying: "Here you go, you have Lupus." She then went on to explain that people who are healthy have an unlimited amount of energy, they go through life pretty much unconscious of the amount of energy each task in the day takes. Why would they need to worry about that when their energy supply is, for all intents and purposes, unlimited. Life is very different for people living with chronic conditions. As soon as their day starts, as their eyes open in the morning, they are given a finite number of spoons. She made her friend count the number of spoons in her hands. She counted out 12 spoons and jokingly said she wanted more - the story of a spoonie's life.
Christine then asked her friend to explain what her average day entailed, including; daily chores, work, fun activities and even menial tasks, like bathing and brushing teeth. The day started from the moment her eyes opened and ended when she went back to sleep. Each task she did would cost her a spoon, an energy currency. Her friend started going through her list but Christine immediately interrupted. "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."
Showering costs a spoon, getting dressed costs a spoon, brushing your hair costs a spoon. These tasks are not all simple and straightforward. When your joints are all inflamed making each movement difficult and painful, the amount of energy required to achieve each task is more than it is for a healthy person. "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." By the time you leave the house, you've already blown through half of your spoons.
The rest of the day has to be planned out immaculately to preserve the spoons as much as possible. When push comes to shove and you're truly stuck in a pickle, there is the possibility of using spoons from tomorrow. This should be saved for emergencies! This means that you can use the spoons from tomorrow's store, but, when your eyes open tomorrow, you will have less spoons to get through the day. So let's say you're desperate for spoons, so you dig into tomorrow's store and use 3 spoons. When you wake up the next day, you will only have 9 spoons left to get through the entire day. Spoons are precious commodities, you never know when you're really going to need them, so you need to be extremely cautious of using them all up.
"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."
Her friend was overcome with emotion, with tears in her eyes, she said, “Christine, How do you do it? Do you really do this everyday?” Christine explained that some days she is stronger and has more spoons than other days, some days are tough and she has to get through the day with less spoons than expected. "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”."
I came across this theory when I had just started Cay's Anatomy. I was scrolling through Instagram looking for other chronic illness accounts when I noticed #Spoonies appearing often. After researching this, I realised that this was the most perfect explanation for living with this disease. A chronic illness warrior is known as a Spoonie. It resonated so deeply with me that I decided to get a Spoonie tattoo as a reminder to myself of these important lessons. My spoon is abstract, it incorporates a moon for the dark days and a sun for the light days, symbolising the balance between them. This reminds me that although days can be dark, there are always light ones the balance out the darkness. It's a reminder to be kind to myself, to slow down, to use my spoons wisely and to do the best I can do with what I've been given.
If you didn't already know about this theory, I truly hope it helps you as much as it helped me. It made me realise that it is okay to feel the way you do, it's okay to slow down and take things at your own pace, it's okay to cancel plans and stay in bed if you need to. It also finally gave me a way to explain what it is like to live with this illness.
For more information on the Spoonie Theory, visit butyoudontlooksick.com and have a look around.
Sending love to all the spoonies out there!