A Spinoff of The Spoon Theory & Psoriatic Arthritis

You may have heard the term “spoonie” when talking about autoimmune diseases. It unites patients with chronic illnesses and helps explain fatigue and the loss of control and freedom patients often experience. But where did it start?

The spoon theory

“Spoons” comes from Christine Miserandino’s “The Spoon Theory,” where she explained to her friend – and then the world – what it is like to live with lupus.¹ She taught her friend that every decision she makes, from the time she wakes up to the time she goes to bed, affects her.

Christine gave her friend a handful of spoons. She explained that when you have lupus, you have a finite amount of spoons each day. Once they are gone, you can’t get them back. Christine took away a spoon or even a few spoons, based on the decisions she made throughout her day in the life of being sick: getting up, taking a shower, commuting to and from work, making meals, running errands, and so on.

She told her friend that you never want to be low on spoons because you don’t know what the rest of the day will bring.

From spoons to video games

I will always be a spoonie, but sometimes I explain my fatigue and loss of freedom from psoriatic arthritis by using a Pac-Man analogy. Most people are familiar with this arcade video game, and each Pac-Man symbol has a PsA reference.

The Basics

Like any game, you need to know how it is played so you can strategize on how to win. Imagine you have psoriatic arthritis and have to play the game each day you wake up.

• Pac-Man: That’s you, a little yellow character with psoriatic arthritis.
• Dots on the maze path: Those indicate everything you need to do in a day, all of the errands you need to run, family to attend to, and chores to do.
• Ghosts: That’s the disease that is always close behind and sometimes catches you. Sometimes they surprise you, and sometimes you see them coming with nowhere to go.
• Cherries: That’s your lifeline: your medicine or your afternoon nap, anything that can provide you with a short burst of energy to turn your ghosts gray.
• Gray ghosts: Your psoriatic arthritis is well-controlled and Pac-Man can eat them up.
• The goal: Chomp all of the dots before getting caught by a ghost. In other words, good luck accomplishing all you need to do before your day is done.

Strategy

The minute the game starts (when you wake up in the morning), you have to navigate a maze of dots, while those pesky ghosts are lurking and following you. You can escape by going through the portal on one side of the board to end up on the other side. You also can hide out at one of the many dead-ends of the maze, but be assured one ghost will find you at some point.

Eating a cherry is good luck! That means you did something right and turned your ghosts gray. Your medicine or treatment has allowed you to get the upper hand on your disease and chomp away the gray ghosts. It feels good to be in control, but just like the ghosts that start blinking, psoriatic arthritis makes sure your control is limited.

Even still you keep playing the game and doing your best to clear the dots and not get caught by a ghost.

How to win the game

As you clear each level, you get better at anticipating the ghosts. Eventually, you get a feel for how and when to use your cherries. But, you also know that the next level becomes more difficult.

It’s just like when you find your medication no longer works, and you’re forced to try another. Or maybe, you are going through a particularly stressful time in your life, and your disease flares.

No matter how much you practice, you cannot win the game because there is no cure for psoriatic arthritis. But this is no reason to give up. Yes, it can feel like a struggle day after day, but the strategies you learn can help you get further and keep those ghosts gray. Thanks to research, more cherries are coming your way.

Appreciate the little wins

This is not the time to give up. This is the time to lean on your friends and others in the spoonie community. It's the time to find new strategies and focus on the small – but oh so significant – little wins of each day. This is the time to get educated and see all of the possibilities coming.

There are 255 levels in Pac-Man. I think I’m on about 150. What level are you on?