What (the heck) is a Spoonie?

Photo by Emojipedia 

If you follow anyone on social media with a Chronic Illness you might see the silver spoon emoji in their bio. Maybe you saw it and thought, “That’s a little strange. I guess they just really like spoons. Maybe it’s because they consume so much soup.” And while we with Chronic Illnesses do like spoons for that reason, in this case the spoon symbolize much more than cutlery.
 
The spoon is a metaphor for a task that requires a certain amount of energy. People with a finite amount of spoons each day due to a chronic condition often refer to themselves as spoonies.
 

Background

The word “spoonie” derives from the blog post “The Spoon Theory,” by Christine Miserandino, a pioneer in the Chronic Illness world who gave us a collective noun to identify by. You can find her story about living with Lupus on her site: butyoudontlooksick.com. Her ability to simply define what it is like to have a Chronic Illness resonated with people who have illnesses of all kinds.

In her story, Christine recalls eating at a diner with a close friend who witnessed her experience with having Lupus up-close. Christine pulls out her usual pills to take with food, which precipitated her friend’s curiosity: What’s it like to be living with a chronic illness?

Christine starts to explain the physical effects of her illness- pills, pain, aches. But her friend wasn’t satisfied. What’s it really like for you to be living with a chronic illness?

Something ignited in Christine. 

She grabbed spoons from nearby tables and placed them in front of her friend. 12 in total. Christine then asked her friend to think of everything she did that day. For each task, Christine took away one spoon. Spoon 1- Get up. Spoon 2- Make food (so you can take medicine). Spoon 3- Shower. Spoon 4- Getting dressed. And so on.

Thus, Spoon Theory was created.

Key Themes

There are a few key themes that make this simple metaphor so effective.

• It highlights that it is possible to have a finite amount of energy
• It shows the importance of choosing how to spend your energy
• It gave people living with a chronic illness a noun to identify by

 
Finite Amount of Energy
A concerned friend once pulled my sister aside when we were out socializing. He knew about my illnesses but didn’t know what it meant or how he could support. My sister later recounted describing my illness to him.
 
“She just runs out of energy,” she said. “There are no energy reserves, no pushing herself. Once she’s done, she has to lay down and sleep.”
 
And that’s exactly it. I’m fortunate that I spent the first half of my 20s in good health. I remember what it was like to be tired at 10pm but still go out to meet friends. I remember what it was like to “catch a second wave” or to be able to push myself without having major consequences. Sure, maybe I’d be a little sluggish the next day, but that pales in comparison to the fatigue I experience now.

 

Photo by inaRow

How to Spend Energy

Having a Chronic Illness forces you to listen to your body.
 
Let’s say, as in the example above, your baseline is 10 spoons each day. You wake up tomorrow with 10 things you can do in the whole day.
 
First spoon, get up. Second spoon, shower. Third spoon, get dressed. Fourth spoon, make and eat breakfast. Fifth spoon, drive to the store. Sixth spoon, shop for groceries. Seventh spoon, drive home from the store. Eighth spoon, make and eat lunch. Ninth spoon, make and eat dinner. 10^th spoon, get ready for bed.
 
That’s it. There’s no more energy to do anything else. So, what you might do is rearrange your day so that you are able to work. Let’s say you have a full-time job. You might not be able to spare a spoon to make any of your meals or even go to the grocery store.
 
To make matters more complicated, one task does not always equal one spoon. It may differ from person-to-person, and it may even differ from day-to-day. Furthermore, you might not always wake up with the same number of spoons.
 
Let’s say you have a cold. Already you might be down to 5 spoons. Plus, doing anything at all seems like a monumental task. Your 5 spoons might be (1)get up, (2)eat breakfast, (3)eat lunch, (4)watch tv, (5)eat dinner. You might choose between watching tv and seeing a friend or taking a shower. If the number of spoons is equal to you.
 
Dysautonomia International provided this great graphic on the typical number of spoons it takes for a Spoonie to get through tasks.

Photo by Dysautonomia International

 Having a Noun

Many people with chronic illnesses are told that their symptoms are “all in their head.” They often look healthy, raising questions about the validity of their alleged illness.
 
These unfortunate truths further marginalize an already isolated community. Even if they get a diagnosis, “Patients” becomes their primary noun. But the word patient encapsulates a larger population. It doesn’t specifically point to a person who has been battling an illness for a minimum of three months. Plus “patient” has a despondent connotation.
 
It’s empowering to give this specific population an identifier because it validates their experience and provides ground for connection.
 
Besides, it’s better writing to have a word that describes a population, as opposed to a word with qualifiers.
 

• A person with a Chronic Illness asked their doctor for an appointment
• A Spoonie asked their doctor for an appointment

 
See what I mean?

 

Photo by inaRow

Takeaways

Truthfully, it is always important to choose how you spend your time and energy. Having a chronic illness exaggerates the consequences, so it becomes extremely important for those going through it.
 
PS- Another noun for spoonies is zebra. But we’ll get to that topic another day.