Many people with a lot of different invisible illnesses, not just Fibro,struggle to explain to the people around them just how difficult a normal day can be.
This was the problem faced by Christine Miserandino (now Christine Donato) when a close college friend asked her what it was really like to live with Lupus, when sitting in the college diner one evening. This was a friend who had seen Christine on bad days as well as good, but who knew enough to know that she didn’t really understand what it was like to have a chronic illness day in and day out.
In a moment of inspiration, Christine came up with the idea of representing her limited amount of energy in units of spoons and asked her friend to describe what she did on a normal day. Breaking down each task into its individual parts, and taking away a spoon for every task done, helped show her friend that these tasks, that healthy people take for granted as being easy, could be a huge use of limited energy for someone with a chronic illness.
Christine 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.”
The story of this explanation became known as ‘The Spoon Theory’ and is a central part of the community Christine has built up for other people with invisible illnesses at butyoudontlooksick.com. The Spoon Theory is now loved by thousands of people worldwide, not only as a way of explaining to their own friends and family how difficult normal tasks can become, but also because the essay shows that someone else truly understands what it can be like to live with a chronic invisible illness.
To read the Spoon Theory, click here.
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