I am that person who other ask these questions of. I am the person that cannot do it all anymore and have struggled to explain in a way that others have a chance at understanding without living in my footsteps themselves. I am that person that is and has to be aware of my diseases and their current activity at all times. I plan my days, weeks and months around rheumatoid arthritis and fibromyalgia. I have planned my meals and days around my daughters celiac disease for years. We don't want our diseases to define us, but there is not necessarily a choice for the people that walk in the footsteps of autoimmune disease.
I've heard of the Spoon Theory and Spoonies. I had not however read the Spoon Theory. And I a very glad that I came across the theory last week. I found it on a rheumatoid arthritis site with this advice to a loved one of a rheumatoid arthritis patient that was seeking to truly understand what life with rheumatoid arthritis was like, "every person who knows someone with an autoimmune disease should read the Spoon Theory once a year, every year, to understand and remember what part of living with an autoimmune disease is like."
I read the Spoon Theory for the first time in my life. And it hit the nail on the head. I'll read it every month for the rest of my life to remember a good way to explain life in my shoes to those that ask or comment.
Enjoy & Share!
The
Spoon Theory by Christine Miserandino www.butyoudontlooksick.com
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. 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 effected, and give 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 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 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, being in control. She
grabbed the spoons with excitement. She didn’t understand what I was doing, but
she is always up for a good time, so 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 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 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 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 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.” 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, 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. I think she was starting
to understand when she theoretically didn’t even get to work, and she was left
with 6 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 less “spoons”. I also needed to explain 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 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 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. 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.” 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 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 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 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”.
- See more at:
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/#sthash.8ZQ5lOkw.dpuf
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