Spoons Theory: But You Don't Look Sick - Helping Others Understand Fatigue

[Guest guest]

I shared this in another thread but wanted to put this in a more

visable place because I think it might help others to read and share

it. It is such a good " word picture " type story that

people usually don't forget it once they've heard it.

Here's to those of us with debilitating fatigue!!

http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php

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.

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 a 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 " , 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 " .

© 2003 by Miserandino Butyoudontlooksick.com

[Guest guest]

Thank you for this post. It is really hard to explain to people. This

analogy can really help. Helped me understand it better myself!

[Guest guest]

This was a very good story. No I know I am not alone or crazy when I

feel like I can only do so much. I feel this very way like I am

missing out on a lot of things because I no longer can do the things

that I would love to do like I use to. The condition struck me when

i was 25 in my prime and at times I feel really cheated but I try to

go on and enjoy life to the best of my ability.

People, my sisters and others do not understand why I don't want to

do things with them.I just can't do it. I may look fine but at times

I feel like I am 60 years old.

That story is exactly how I feel all the time. Thank you for whoever

shared that story. It lifted my spirits. I hope that everyone will

read this. I am so grateful for this group. I will be reading from

you all daily.

Shauna

>

> I shared this in another thread but wanted to put this in a more

> visable place because I think it might help others to read and

share

> it. It is such a good " word picture " type story that

> people usually don't forget it once they've heard it.

>

> Here's to those of us with debilitating fatigue!!

>

> http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php

>

> 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.

>

> 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 a 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 " , 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 " .

>

> © 2003 by Miserandino Butyoudontlooksick.com

>