I first read “The Spoon Theory” by Christine Miserandino a couple of years ago. I found it again recently and put it on the list of things I wanted to discuss here on the blog. Miserandino uses spoons as an analogy of how much energy her lupus takes out of everyday activities. She starts out each day with a finite number of spoons and must decide how to use them. It might take one spoon to put on a button-down shirt instead of a pull-over; one spoon to walk to work instead of taking the subway; one spoon to go out dancing with her friends at night, etc. And once the spoons are gone, they’re gone. There’s no getting more until the next day. If she uses up her last spoon walking home from work, she can’t clean her apartment or cook dinner.
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I found the comparison very handy as a way to describe the limitations that come with a chronic, invisible illness. I’ve never been nearly as bad off as Miserandino, but I have found myself in situations where even my friends looked at me oddly for a decision I made in order to stay healthy. A few months ago an illness made any kind of exertion overwhelming, so I couldn’t climb the steep staircase to my second-floor office. A co-worker who saw me waiting for the elevator said, “Ah, come on, you can do it,” as if I was being lazy by not taking the stairs. But in that moment, I could not do it, even though I looked outwardly healthy.
When you think about it, most long-term illnesses are invisible. You can’t see food allergies, diabetes, Crohn’s disease, asthma, cancer, kidney disease and dozens of other conditions that can make everyday activities difficult. If you know someone who deals with such an illness, cut her some slack. Don’t demand more from her than she can give or grow impatient with her limitations. No one enjoys being sick and not having full control over her body. The best gift you can give is to trust her to know best how to manage her illness and give her as much support as possible.
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