Please take the time to read Christine Miserandino’s personal story and analogy of what it is like to live with sickness or disability. Frankly as the person we are taking care of wants us to understand, we really can’t but this does a great job of helping:
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 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 neverending
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.