What is spoon theory for chronic pain?

Mum: “You aren’t always sensible you know.”

Me: “Name six occasions.”

Mum: “The time you climbed all five stories of Loche chateau keep.”

Me: “That was 26 years ago.”

Mum: “It wasn’t a good idea.”

Me: “You’re going to bring up the time I climbed Richmond castle when I couldn’t walk unaided, aren’t you?”

Mum: “Well, that wasn’t sensible either.”

Chronic illness and disability often come with the need to budget physical and emotional energy. As neatly outlined in Christine Miserandino’s Spoon Theory for chronic pain, people with conditions such as myalgic encephalomyelitis, multiple sclerosis, Ehlers-Danlos syndrome, and a whole host of others have a limited amount of energy to spend on day to day life.

Activities many able-bodied people take for granted – showering or getting dressed – eat into that budget, so every single thing we do gets weighed up for cost/benefit and paced. It’s the only viable and sensible way to live with chronic pain and a chronic illness.

Christine Miserandino’s spoon theory and many articles about chronic pain cover the problems that arise when people around us don’t understand how our energy budgets work – the good old question of “how come you can’t do this if you were able to do that?”

“Why are you doing that? Aren't you in chronic pain? Don’t you have a chronic illness AND a disability?”

I want to talk about something less explored – the awkward conversations we have, not when we can’t do something, but when we decide we can. Especially if it is something other people don’t think is a good use of energy for someone who has a chronic illness and experiences chronic pain.

I’ve had a chronic illness since 1990. There have been good years and bad years. The glorious sunlit seas of 2010 when I could sail quite regularly, to the tooth-grinding annoyance of early 2018 when a giant invisible vampire sucked my energy dry.

One thing is consistent, though – every day, whether well enough to work full time or land in bed because I had a shower, a bespoke spoon budget is calculated.

Much of the spoon calculation is straightforward. Does the benefit gained from this activity outweigh the cost? If so, it gets ranked by priority, crucial stuff pushing out the nice but non-essential. When I needed to support myself, work topped the list. When there was oomph to spare, it went into friends and hobbies because no one lies on their deathbed regretting the housework they didn’t do. The sneered at the phenomenon of ready-meals tipped the budget in favor of independent living.

Just as overspending on a credit card weekly is not a great long-term plan for financial health, regularly overspending on physical energy will leave you broken.

Nonetheless, there are times when I do the cost/benefit calculation on an activity, note the probable physical cost heading my way like a freight train without brakes… and do it anyway. Understanding this is key to understanding Christine Miserandino’s spoon theory for chronic pain.

That’s where the difficult conversations occur. Frequently people who love and care for us and who understandably don’t want to see the collapsed heap on the sofa the next day can’t understand why anyone would stand in the path of that freight train to achieve something seemingly trivial. It’s just not sensible.

It’s the medical equivalent of spending your savings on a giant fibreglass dinosaur for the garden. It’s not actively irresponsible – you’ve got the money right now – but do it, and you’ll be eating bread and butter for the next month.

That’s ok; you know, ten different recipes to make bread and butter palatable.  And you really, in the truest depths of your heart, need to own that replica diplodocus. But as far as your parents are concerned, you’ve just blown the price of a car to put a diplodocus among the delphiniums and… wouldn’t it be better to be sensible?

Well, no. Sometimes it damn well wouldn’t. Sometimes, we all need our diplodocus. That’s doubly true for people with chronic pain and chronic illness who spend 95% of their lives being sensible because they have no choice. Taking a raincheck on one event isn't a big deal if you can climb a castle tower or head to the cinema anytime you fancy it.

When every single day, for decades, absolutely everything, right down to your hairstyle and how often you have a shower, is a calculation, then it is. When on the vast majority of days, you are sensible, even if it means foregoing hobbies or friends or dating because you physically can’t survive any other way, then the times you look at that calculation and say, ok, possibly bad idea. Still, I’m having that damn dinosaur; those times matter. They are precious. And this is what spoon theory is really about.

I haven’t climbed a good big tower since 2012 when I defied maternal opinion to tackle Sacre Coeur in Paris. My condition has progressed, and most times now, I look at high towers, deep caves, long flights, and loud movies and decide they are just not worth the pain. 

It’s not that I’ve grown up or evolved more common sense. It’s just that after nearly 30 years, the pain and exhaustion are starting to win. It makes me sad. It makes me less me. Nonetheless, when I spot a new diplodocus on the horizon, I have no intention whatsoever of being sensible. And this is what Christine Miserandino’s spoon theory is all about.