Chronic Illness and Energy Limits: Helping Others Understand

The average person doesn’t usually think about the amount of energy it takes to do basic things. Essential tasks such as taking a shower, preparing a meal or running an errand are so ingrained in our everyday lives that we simply do them, like breathing.

Yet when a person lives with a chronic illness, no longer can anything we taken for granted. Due to ever-present pain and exhaustion, the amount of energy you have each day is limited. Some days, thanks to flare ups – or overextending yourself the day before - that precious amount can be curbed even further. Suddenly all the things you once did easily require a great deal of planning and thought. What if you simply run out of energy before you’ve completed everything that needs doing? If you can’t delegate, then you need to prioritize.

How on earth do you make a healthy person understand this unusual way of life? Sure, you can try to explain how you feel and the kinds of choices you are forced to make each day. But while your audience may nod, saying they understand – and maybe even truly believe they understand – the truth is that no one does, not unless they live that way themselves. But what kind of metaphor can convey your reality?

The “spoon theory” was born in 2003, when Christine Miserandino wrote an essay for her website ButYouDontLookSick.com.  She recalled trying to explain life with lupus to a friend. As the two were sitting in a diner, Miserandino was inspired to use spoons in an impromptu metaphor. She held out twelve spoons, explaining to her friend that each one represented a unit of energy. Each daily task required at least one spoon, if not two or more. Once the daily allotment of silverware was used, that was it. There is no magical “store” to pick up additional spoons. And if you attempt to “borrow” spoons from the next day, that means you will be that many short come tomorrow for the next round of tasks.

By putting the situation in a simple yet more tangible example, Miserandino was able to make her friend better understand the challenges of those living with chronic illness. Suddenly the array of spoons in her hands – more than any one person would typically need for the usual purpose – seemed stark and limited. Now it was more clear why a person living with chronic illness might have to take a nap in the middle of the day or turn down a social outing. Yes, even fun things like meeting a friend for lunch or going to see a movie use up spoons! There's the stress – both physical and mental – of actually traveling to the location. Then, depending upon the particular person, there can be the stress of navigating through crowds, sitting amidst noise, climbing stairs, having to sit for too long and a myriad of other things that the average healthy person wouldn't even think about. Unfortunately, a “spoonie” doesn't have that luxury.

But ironically enough, it isn't just the healthy who can benefit from the spoon theory. We who are living with finite energy can be aided by this very simple and tangible reminder not to try overextending ourselves, that our resources are more limited than we might want or need them to be. Even those of us who have been living in this mindset for years – or perhaps all our lives – can forget when things need getting done. 

With all this in mind, you'll never look at a spoon in the same way again, will you?

Julie Gortze