As I built this website and started posting about it on Twitter I noticed I have a number of followers referring to themselves as Spoonies. It was an odd term that stuck in my mind, and I didn't understand what it meant. I googled the term and found a website called But You Don't Look Sick
The website was founded by Christine Miserandino and she suffers from Lupus. One day she was talking to a friend about what it was like to live with Lupus and was struggling to help her friend understand what it was like to live with a chronic illness. The analogy she came up with used spoons as a way of conveying the limitations that living with sickness imposes upon you.
You can read the full explanation in Christine's own words here.
Alternatively, you can listen to Christine talk about it in this Youtube video:
I'll post a brief explanation here too.
Christine and her friend were in a cafe and Christine was trying to convey not just the physical part of the illness but how being ill actually felt. She gathered up 12 spoons from the tables and gave them to her friend. Christine said:
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.
Christine asked her friend to list the tasks of the day and as her friend 'completed' them Christine would take away a spoon. This even included tasks her friend took for granted such as showering and getting dressed. She had used 6 spoons by the time she had gotten to work!
Throughout the day her friend learned to make choices in order to conserve her spoons, until she only had one left. She could only make a meal and eat it, she couldn't wash the pots, do any chores or do something fun. Her friend now understood what it was like to live with a chronic illness.
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”.
I think that is a great way of explaining disability to someone who has no experience of it and I can now understand why people refer to themselves as Spoonies.
Are you a Spoonie?