Papercut and colored pencil art by Sheryl Aronson X 5

Friday, October 1, 2010

How To Explain Your Illness To Others, Part 1

My  son, who is working on his doctorate in psychology at Boston U., (never waste a chance to brag on your kids) has a seizure disorder.  Recently, he was asked by someone with a child with a seizure disorder to explain what it was like, because her child was too young to put it into words.  He wrote a very thorough description, and shared it with us (his dad and me). He and I then had an email discussion on how people without a certain malady can't really know what it is like. That is why support groups are so important for alot of people.  They have a group of people who really understand what they are going through.
A friend and I a few years ago compared notes on how we describe our fatigue to others.  She said that she felt like someone had cut the tips of all her fingers off, and the blood had all drained out.  I said I felt like gravity had been quadrupled, the oxygen level in the air had been cut in half, and my brain was filled with marshmallow creme.  I have also heard people describe it as like having the flu all the time.  I am not sure exactly what they mean by this.  I don't think they have the feeling of sickness you get with the flu, but the wrung out achy part sure fits.
I want to share with you a couple of really good descriptions I have found of what it is like living with chronic illness.   The first one is the spoon theory, by Christine Miserandino, who has lupus, and a wonderful, fun website, www.butyoudontlooksick.com       She was in a diner with a friend, and her friend wanted to know what it felt like to always be sick.  After struggling for a bit, Christine grabbed a handful of spoons from surrounding tables, and came up with the spoon theory, which has been translated to several languages, and shared by people around the world.
She gave her friend the spoons and had her count them: there were 12.  Then told her that every task she does would cost her a spoon,.  In Christine's own words:  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. 
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”.  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 think the spoon theory is an excellent description of living with fatigue, and the way you have to think out every action, and decide whether it is important enough to spend your limited energy on.  In my next post, I will share with you a great description I found recently of living with pain.

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