This is something I have wanted to share for some time but am just now getting around to. "Spoon Theory" is a popular topic of conversation among people with chronic illnesses - on the internet we usually refer to ourselves as "spoonies" but I think it will be enlightening for many of you to get a better understanding of what dealing with a chronic illness is like on a daily basis.
Spoon theory was originally invented by Christine Miserandino a few years back after a friend asked her (during a lunch date) what it was REALLY like to deal with lupus? Flustered by the question at first, Christine fumbled around and grabbed a handful of spoons. She dumped the pile of spoons in her friends lap and said "Here, you have Lupus." The friend (let's call her Beth) laughed at first, thinking it was going to be an exciting game and she said "now what?!" and Christine 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 Christine's explanation, she used spoons to convey this point. She wanted
something for Beth to actually hold, so she could then take away, since most
people who get sick feel a “loss” of a life they once knew. If she was in
control of taking away the spoons, then she would know what it feels
like to have someone or something else, in Christine's case Lupus but for me PIDD, be in
control.
Christine asked Beth to count her spoons. She asked why, and Christine explained that
when you are healthy you expect to have a never-ending supply of
“spoons”. But when you 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 along the way, but at least it helps to
know where you are starting. Beth counted out 12 spoons. She laughed and
said she wanted more. Christine said no, and knew right away that her little
game would work because Beth already looked disappointed, and they hadn’t even
started yet. Christine justified her "no" because she wanted more “spoons” for years and haven’t found a way to get more, why should Beth? Christine reminded Beth to always be conscious
of how many she had, and not to drop them because she can never forget
she has Lupus.
Christine asked Beth to list off the tasks of her day, including the most simple.
As, she rattled off daily chores, or just fun things to do; Christine explained
how each one would cost her a spoon. When Beth jumped right into getting
ready for work as her first task of the morning, Christine cut her off and took
away a spoon and 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.” She quickly took away Beth's first spoon. Showering cost Beth another
spoon, just for washing her hair and shaving her legs. Getting dressed was worth another spoon. Christine broke down every task to show Beth how every little detail needs to
be thought about - "You cannot simply just throw clothes on when you are
sick." Christine explained that she had to see what clothes she could physically put
on because if her hands hurt that day buttons are out of the question and if she has
bruises that day, she needs to wear long sleeves, and if she has a fever she
needs a sweater to stay warm and so on.
Beth was starting to understand when she theoretically didn’t
even get to work, and she was left with 6 spoons. Christine then explained to
her that she needed to choose the rest of her day wisely, since when
your “spoons” run out, they are gone. Sometimes you can borrow
tomorrow’s “spoons”, but just think how hard tomorrow will be with less
“spoons”. Christine 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 do not want to run low on “spoons”, because you never
know when you will truly need more. Christine didn’t want to depress Beth, but she
needed to be realistic, and unfortunately being prepared for the worst
is part of a real day.
They went through the rest of the day, and Beth 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. By the end of their hypothetical evening Beth had to choose
not to run errands, so that she could eat dinner that night. When they got to the end of Beth's pretend day, she said she was hungry. Christine 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 but if she
went out for dinner, she might be too tired to drive home safely. So Beth decided to make soup, it was easy. Christine then said it is only
7pm, so Beth had the rest of the night but only had one spoon, so she can do something fun, or clean your apartment, or do chores but she can’t afford to do it all.
By this time Beth became very emotional and seemed to have a better understanding of what Christine was going through. Christine explained that you get used to dealing with it but you always have to be thinking about your next step and you have to learn to slow down (even if you don't want to). Christine now shares the spoon theory with other chronically ill individuals because it is a helpful way to explain to friends and family the frustration of day to day life.
Spoonies hate feeling left out,
having to choose to stay home, or to not get things done that we want to. We don't always show it but it creates a lot of frustration and isolation in our lives. When other people can simply do things, we have to
attack it and make a plan like we are 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.We miss the freedom and we miss
never having to count “spoons”.
Now, with all of that said - I hope that this does not make anyone sad - that was not my intention and I do not want your pity - I just want to bring awareness to what the reality of my life is currently like and I feel like Christine's spoon's theory is very accurate and easy to understand! I am also learning to be my own advocate because I want you all to understand that I miss being social and I miss so many things but I have to choose each part of my day ever so carefully. I am hopeful that one of these days I will learn how to balance my spoons so I have more to give away on (new and old) friends!!
