We have our own lingo in the chronic illness world; Zebras, Dazzle, Bendy, Spoonies. This jargon communicates the most common obstacles and triumphs of living with an invisible illness. So just what does it all mean? Well, as usual, there’s always a little story behind it.
When I became chronically ill, I couldn’t explain how different my energy and pain levels were. Everyone around me could see it. I went from a happy, bubbly person to one that was lethargic and miserable. When I said I was “tired,” though, people didn’t quite understand the extent of what I meant.
It wasn’t until later that I found a way to explain it better. It’s when I found out about the Spoon Theory that I was able to explain it, as well as learn to start planning and managing my days better.
What is the Spoon Theory?
“The Spoon Theory”, a personal story by Christine Miserandino, is popular among people struggling with chronic illness. It is a disability metaphor, a perfect description of this idea of reserved amounts of energy, using “spoons” as a unit of energy.
Miserandino has a chronic autoimmune disease, lupus, which causes an immune system to attack the body’s healthy cells. One day, while out dining, Miserandino’s friend asked her what living with a chronic illness was actually like.
Miserandino explains in her beautifully written story how she gathered spoons and used them to represent finite units of energy. Energy, for many of us with chronic illness, is limited and depends on many factors including stress levels, how we’re sleeping, and pain. So, she handed her friend twelve spoons and explained that the spoons symbolize all of a patient’s daily energy reserves.
Every activity, no matter how thoughtless and automatic, depletes from the energy supply. Getting out of bed, showering, getting dressed, eating, and any number of mundane tasks threaten to deplete energy at any given time.
When you run out of spoons, you can choose to borrow against the spoons of a future date, but there are consequences. When you deplete your spoons, that’s it. You are down for the count. Bedridden. Unable to manage the simple activities of daily life. Once you run out of spoons, you are left with no choice but to rest until your spoons are replenished.
Until Miserandino wrote The Spoon Theory, no one else had explained the trials of chronic illness so simply and, yet, so effectively. It’s been accepted across the world as this amazing tool to describe what life with chronic illness is really like. The Spoon Theory has done some amazing things since its provenance – one of which has paved a way for people to meet others struggling with illness.
What I am talking about here is the word, or nickname “Spoonie”. I do not call myself a “Spoonie”.
However, just key the word in on any social media and you’ll find thousands of posts from individuals who classify themselves as a “Spoonie”. It is a movement. It is THE hashtag. It is the number one name for disability social media accounts. It has become chronic illness identity to sufferers globally.
But then again, it is a term that helps explain the inexplicable.
To read Christine Miserandino’s full story of The Spoon Theory, be sure to visit her page: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/