Why we need more terms like “spoonie” to explain chronic illness

Have you heard of the term “spoonie”? Until a few years back, I hadn’t — but now I wish everyone knew. It means a person living with chronic illness. And that’s exactly how I ended up learning what it means. Because I, too, am a person with chronic illness.

Chronic pain? Like, pain all the time?

I’d like to take a moment to describe what chronic pain is like, because it can be hard for most people to fathom. I want to elaborate on this subject because I myself am living with constant pain, and I wish that more people knew what that was like so I in turn wouldn’t feel so shameful about it or try to hide it all the time.

Pain in our society hasn’t always been acceptable. You toughen up, you shake it off, and then you get on with your day. But just within the past few decades, there’s been a change, and we’re starting to recognize that there is a very large group of individuals who live with permanent disabilities. I’m talking migraines, anxiety, depression, menstrual cramps — and a whole lot more.

Once we start to recognize these disabilities, we have to label them in order to understand them. If you can’t put a marker on it, it’s not as easy to comprehend. If your illness furthermore is invisible as well (all of the above mentioned disabilities, for example), you’re really screwed. Not only can people not understand your pain, they can’t see that you’re in pain either.

When a regular person experiences pain, it’s often tied to a specific injury. Say you cut your hand or broke your leg. You see the gash, you x-ray the bone, it’s there, period. It’s fathomable, it’s real. And it will be over at some point and you will think about it like that one time it really hurt in your hand or your leg and thank gods that’s over with.

“But you look fine”

Yeah… if you’re a chronically ill person with an invisible illness, your pain never goes away. It’s just as powerful and nauseating as if you cut your hand or broke your leg, but it never. goes. away. Ever.

What happens then is your brain focuses so much energy sending pain signals that it has to shut down other vital centres or parts of them to be able to hold up this neuro-exchange. Sleep goes bye-bye and so does your memory, good mood and other things you really, really wish you had so you could seem like a normal person.

And that’s it, really. People do see you as a normal person. You look fine, you get dressed, you might even be capable of working. So when you tell your family, friends or colleagues that you’re not alright, they ask you where it hurts. You likely can’t answer that. How, then, will they believe you?

Spoonie terminology

Here’s where we get back to “spoonie”, that odd word used to describe a sick person. Urban Dictionary explains that it originates from a girl explaining how it is living with chronic illness, and using a handful of spoons to demonstrate.

You start each day with a number of spoons and pray to gods you won’t run out of spoons come the end of the day. But every bit of activity costs you spoons, even things that aren’t regularly considered hard labor activities by normal people. Things like taking the bus, preparing food, talking to a friend — even getting dressed or getting up in the morning will exhaust your supply of spoons.

So, if you’re a chronically ill person who’s running low on spoons, then you probably have to quit any other plans you had for the day. And mind you, this might just be in the morning. Sometimes, you have many spoons left, maybe even for several days. But you always, A-L-W-A-Y-S, run out.

I like this explanation because it’s a very tangible example of how a typical day goes. Everyone knows that certain events take up more of your energy, such as Christmas get-togethers, meeting the in-laws or shopping on Black Friday. It’s relatable. For a spoonie, the bar is just set much lower.

The spoonie explanation is relevant and interesting because it describes something that is impossible to fathom in layman’s terms. Although the regular person may never actually understand what it means to be chronically ill, that person is still capable of understanding concepts such as energy, exhaustion, planning, etc.

If you’re a regular person and you ever meet a spoonie, don’t ask how they’re feeling — it’s never a positive answer if they’re being completely honest. Instead, ask them if it’s a good day for them. Acknowledge that you know that there isn’t a big enough reservoir of spoons to ever help them out of their tough situation, but that you may have an extra one to lend. Trust us, we can always use an extra helping h… erm, spoon.