In our regular spot where we chat about mental health and wellbeing, a words on spoon theory, and illnesses that aren’t immediately obvious.
Hello and welcome to Wellbeing Matters, our weekly spot for a catch up, virtual hug and a chill. This week, we’re talking spoons.
Spoons? You may be wondering what on earth I’m talking about. Yep, spoons and spoon theory. A novel way that the chronically ill community use to measure their capacity to interact with life on any given day.
I have Postural Tachycardia Syndrome (a condition that affects my autonomic nervous system) and Chronic Fatigue Syndrome, triggered by a severe reaction to viral illness several years ago. Recently there has been much reporting in the mainstream news about a condition being dubbed ‘Long-Covid’, or people struggling to recover from even mild cases of Covid-19.
While the conditions are not entirely the same, I have a huge amount of sympathy for anyone finding themselves afflicted with post viral malaise of any kind. I don’t have a medical background, but I do have years of fighting to get a diagnosis and support for a condition that it feels like that some physicians (and occasionally employers and family members) would prefer to put in a locked box called ‘anxiety’.
The Twitter hashtag #MissingMillions is quite apt in describing those of us who develop chronic conditions (not all virally triggered). We are missing in action. Some people are chronically disabled by their underlying conditions. Others, such as myself, look okay on the outside but are crumbling underneath.
This is where the spoons come in. There is an excellent article over at the BBC website detailing how spoon theory was created by Christine Miserandino in 2003, when trying to explain to a friend how her chronic condition, lupus, affected her on a daily basis. Find out more at Christine’s blog, But You Don’t Look Sick?
Spoons represent energy. A healthy person has a full basket of spoons in their arsenal. A person with a chronic health condition doesn’t. Theirs are limited. Every day as a spoonie you look at how many spoons are available, and assign them to tasks. If a big event is coming up, you conserve them, building up your basket so you have enough to get you through the day. If you are me, you empty your diary the following day so you can crumple into bed and sleep a few more spoons into existence.
And by tasks, I mean the mundane things in life that you take for granted when running on a full basket of health. Going for a walk with the dog. Having a haircut. A night out with friends. Going to work. Lacking spoons really screws up the everyday. Spontaneity becomes liability.
There are common illnesses that steal our spoons. A cold. A stomach bug. Allergy season. My spoons can go missing in action for weeks, sometimes months. Fatigue is my constant companion, nipping at my heels and fogging my head. All future planning is mitigated by the need to build ample rest and recovery time into my schedule. To not over commit.
This article is not a complaint, more a recognition that we all have differing reserves of energy, and that what is a task or pleasure done without thought in a healthy person can be extremely depleting to someone with underlying health issues.
As spoonies go, I’m doing okay. I have enough spoons to do most necessary things most days. Things like washing, dressing, feeding myself, before having the odd walk. I conserve spoons for energy bursts, I plan my writing, volunteering and other obligations around my ability to rest and recuperate. I have a lot more spoons in my basket than others.
Take a trip to an art gallery. It sounds like a nice day out. Not strenuous. But to a spoonie, you have to factor in so many elements. I may start the day with twelve spoons. Washing and breakfast take two. Travel to the gallery another two.
If the weather is hot I remove another two, as my body does not like heat. Is it allergy season? That’s another four spoons gone just dealing with pollen. Will it involve walking or standing for a long time, or are there plenty of seats to rest on? Before I get to the gallery, I might have used up 10 out of 12 spoons, leaving very little in the tank to complete the visit.
Life is about adjustments, for the things we have and the things we don’t. Spoons – and energy – are no different. Some days we have an embarrassment of riches; on others we are lucky to have a cracked plastic spork.
If there’s someone with underlying health limitations in your life, give them some leeway. Talk to them about spoon theory. If nothing else, it might start a conversation that leads to mutual understanding of how someone is feeling or dealing with issues in their lives. I’m lucky. I have a husband and friends who respect my limitations, and the sudden need to sit down in the middle of Queen Victoria’s watercolours.
And to anyone reading who may be struggling with the long-term effects of Coronavirus and Long-Covid, you have my thoughts and my metaphysical hugs. Stay well, and thanks as always for reading.
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