If you’re living with a chronic illness or disability, you often have to ration your physical and mental energy. And if that illness isn’t readily apparent to others, it can be hard to explain how debilitating that process can be. On her website But You don’t Look Sick, writer Christine Miserandino, who has lupus, illustrates that process with handful of spoons, each representing a finite amount of physical and mental energy that must be spent in order to get through a typical day. Someone without a disability or illness starts each day with an unlimited number of spoons, while others must weigh which task is worth spending a spoon for, and then making more decisions as the supply is depleted. Inspired by that metaphor, a growing community of people facing such invisible challenges call themselves spoonies. This is part of a complete episode.
Transcript of “Describing What It’s Like to Be Sick but Not Look Sick”
If you’re living with a chronic illness or an invisible disability, you start to see the world in a different way.
You have to ration your energy and plan your day in a way that you don’t if you’re just, say, a little kid who’s popping out of bed and you just have boundless energy.
And that’s led to a term that I’m seeing more and more and that term is spoonie.
Do you know this term?
I think I saw it and passed it by and did not record it.
Tell me about spoonie.
It’s really interesting.
Christine Miseradino has a website called But You Don’t Look Sick.
And on that website, she describes trying to explain to a friend of hers what it’s like to live with a couple of chronic conditions.
And she talked about how you think of each day as a collection of spoons.
And you have to plan out your day and think about how you’re going to spend your energy.
Because maybe you can do this one activity today, but maybe you can’t do another.
And the term spoonie has arisen from this.
And there’s a whole community of people online who refer to themselves as spoonies.
That is people who have to ration out their energy and find workarounds to work around those conditions, disabilities, that kind of thing.
So the metaphor about the spoons has to do with you have a certain number of spoons to use throughout the day.
And when you’re done, there’s no more scooping out the energy for yet another event or another conversation.
Right. So you have to think about how are you going to spend that limited number of spoons you have.
It’s a really interesting way, I think, to explain to other people what that is like.
And there’s this whole community that’s arising referring to themselves as Spoonies.
So if I’m a Spoonie, I’m somebody who has a hidden chronic condition that lowers my energy and my ability to lead what other people would consider to be a normal life.
Exactly.
