I’ve been chronically ill my whole life, but I’ve only been a spoonie for about two years. If you’re a healthy person, this may sound like a lot of gibberish to you, but don’t worry. There’s a perfectly reasonable explanation for my obsession with kitchenware.
You see, a spoonie is simply a person with a chronic illness or disability that identifies with The Spoon Theory, written by Christine Miserandino about her experience with lupus. Since a lot of disabled or chronically ill people have similar experiences, her way to explain being ill rung true with a lot of us.
Being a spoonie is more than just being ill though. When you take up the spoonie label, a whole new world opens up to your sick self. Spoonies are, as a friend once said, “the coolest group of people you never want to be a part of.” And it’s true. Being a spoonie means having a support group, both across the internet and many times in real life, that’s available at any time and has experienced almost everything you’re going to go through.
Other than community, being a spoonie means having an easy way to explain your chronic illness to healthy people. Because seriously, healthy people, we love you- but sometimes you just don’t get it!
When I’m searching for a way to make my husband or friends understand, I can send them a link to the spoon theory, paraphrase, or send them, phrase in hand, to the almighty internet. Sure, the spoon theory doesn’t work perfectly for all aspects of my illness, but it’s a good place to start explaining.
There’s a lot of great reasons to be a spoonie- last but not least because it’s a lot easier than typing “chronically ill” all the time- but there’s more to it than that. Being a spoonie has made me more friends than any other movement or community I’ve joined. Being a spoonie has helped me accept my illnesses, and work with them instead of constantly fighting to the brink of exhaustion. Being a spoonie has given me the drive to advocate and educate about my rare disease. I’ve been able to help newly ill and newly diagnosed people find their way into the spoonie world.
This week is Invisible Illness Awareness Week. I’m pretty aware of my illnesses, but there are a lot of people who aren’t. Awareness is great! It helps get us money and research for the illnesses we fight. It helps other people recognize their symptoms and get a correct diagnosis that otherwise could take years. This week, if you’re a spoonie, I challenge you to share your story. If you’re not, I challenge you to educate yourself about the unique challenges the chronically, invisibly ill face. And to all of you, I challenge you to be kind to yourself this week. You deserve it.