It’s passed around from patient to patient, an age-old anecdote that finally helps spread the message you may have not been able to vocalize yourself. How do you explain to others what having a rare disease or chronic illness is like? You use the spoon theory.
“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.”
Written by Christine Miserandino, a well-known patient advocate, The Spoon Therapy tells the story of a girl with lupus explaining her disease to a friend using 12 metal spoons late at night in a diner. The analogy she illustrates is a perfect example of how illness can change your entire way of viewing the world and how you cope with daily life choices.
If you’ve ever struggled to impart on family or friends how life is different for you, this is the story to send them.