Saturday, 5 February 2011

So what's all this "spoonie" business about then?

In my potted biog over on the right, I've referred to myself as a "spoonie". So I thought I should explain what that's all about.

The Spoon Theory comes from an American woman called Christine Miserandino, who has lupus. Like the condition I have, multiple sclerosis, lupus can cause dreadful fatigue. Miserandino came up with the Spoon Theory as a way of explaining to her friends how fatigue impacted on her life. Since then, many other people, with all sorts of long-term conditions, have used it in the same way.

Fatigue is a terribly difficult thing to explain. First, and perhaps most obviously to the outsider, it's very subjective. You can't measure fatigue like you can measure blood pressure or heart rate. It's also invisible. When someone has a broken leg, people know that person's not going to be able to do everything a fully able person might. When you look fine, but are deeply, cripplingly fatigued, it can be very hard to explain that you're not just being awkward. You're not being anti-social. You're not "giving in" to your illness. You'd love to go shopping, to the gig, to the pub. Your body just won't co-operate.

I've often thought that we need a new word, not "fatigue", because everyone already has their own understanding of "fatigue". When I was able-bodied, I talked about being fatigued. After I got hit with MS, I developed a completely new understanding of what fatigue was. If we called it something else - let's say "banana" - we wouldn't have everyone's meanings of the word getting mixed up. "Sorry I'm going to have to cancel on the shopping, my banana is really bad today" - how does that sound?

Anyway, back to the spoons. Christine Miserandino's idea is that when you have a long-term condition, you start off the day with a restricted number of spoons. Each action uses up a spoon, and when you run out of spoons, that's it! You may suddenly lose a spoon or (very rarely) gain one. You can "borrow" some spoons from tomorrow, but that will leave you with fewer for then - and you may have been getting fewer then anyway! Those of us who live by the Spoon Theory code are spoonies.

So if someone suddenly cancels on you because they're "too tired", please bear in mind that not all disabilities and illnesses are visible. They may be a spoonie too!

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