Spoonies are people with chronic illness. What is a chronic illness? It’s a persistent condition; simplified it means getting sick and never being able to get better.
The term/label was coined after the Spoon Theory by Christine Miserandino to help explain what chronic illness is like to people who don’t have it. Not everyone with chronic illness uses this theory or its derivative terms. Not everyone with chronic illness finds the theory an adequate representation of their condition because as useful as spoon theory is ables can only hope to intellectualize what it’s like to have a body that functions differently from theirs.
Paradigm, perspective, whatever; our consciousness experiences the world through our bodies and we are limited through what our bodies are able to do and perceive.
Some people are born colorblind and I’m sure you’ve heard the musing “how do you describe the color of the sky to someone who is colorblind?”
But nothing is literally black-and-white. Color, or rather wavelengths of light, exist regardless of who is able to see it. Most humans have adapted a mutation for trichromatic vision which come from a retina that have over a million light sensitive cells (photoreceptors) which are either in the shape of a cone or rod. Depending on how many and what variety of these you have determine what wavelengths of light you can see.
It’s considered standard that everyone can see the basic spectrum of violet, blue, green, yellow, orange, and red but humans are rare species in their ability to see such a wide away of spectrums, especially the hues in between. If you are a netizen you probably remember the controversial dress whose colors no one could agree on. There was an erotic parody made about it.
With chronic illness we have vague descriptors like “tired” or “weak” just like we do “light yellow” and “dark yellow.” What you visualize in your head as you read those terms are your own specific perspectives from memories of past physical stimuli you’ve experienced. Dark yellow, for instance, may only be orange to you. Only those with the widest range of photoreceptors see what we consider the “visible spectrum” and yellow is the trickiest. Those with a greater ability to interpret color wavelengths tend to find the color yellow offputting whereas the general population consider it pleasant.
I’m a few cones short of a full set but I’m above average so I hate the color yellow. I never understood why people liked it but it also never really thought about it. People have favorite colors, it’s a matter of opinion.
Only, it’s not. It’s a matter of perception.
It’s probably not coincidental that one of the basic questions we ask someone who we are getting to know is what their favorite color is. Essentially what we are asking is what their reality is. They may actually be looking through rose tinted glasses.
How we see color matters. Restaurants, hotels, hospitals, casinos, etc. are all designed with specific colors to urge consumers to act in certain ways be that to relax or to over stimulate us. Carpets in casinos are purposely ugly so you’ll keep your eye sight up and drawn to the flashing colors enticing you to sit at a machine and play with your money as if your life didn’t depend on it.
We hold people accountable for the way they perceive things.
When I was a child most of my peers couldn’t see the variety of spectrums of yellow I could so when they said they liked the color they were speaking to a completely different one than I was but I had absolutely no concept of that and so I judged them for their bad taste. There are multiple TV shows on at any given time that mostly consist of people agonizing over what colors to paint their house and it’s entertaining because when we watch all we have to do is sit back and judge people arbitrarily which is super shitty but somehow relaxing.
It shouldn’t matter that yellow looks a little different to me but in this metaphor it’s like chronic illness. Everyone understands that people have different “tastes” in touching different textures, ingesting different foods, or sitting certain ways but much like the color spectrum the extent of those differences are hard to perceive when your body functions differently than others.
Intellectually people know it takes energy to make a sandwich. Physical energy to put it together, emotional energy to decide how to make it, and mental energy because as much as people like to pretend “double tasking” is a thing it isn’t; parsing out your attention can be exhausting.
All of the energy that goes into making a sandwich falls under the notice of most people and after making the sandwich you eat it which creates more energy, enough to also make up for the energy it takes to eat. Chronic illness is like having limited access to variations of energy.
Or maybe it’s having a greater perception of these variations.
You feel everything much more intensely. Every exertion of energy is more powerful than for someone who is healthy.