Light shed on ‘Spoon Theory’
As someone who has rheumatoid disease and fibromyalgia, I took issue with Jen Gouthro’s column (‘Feeling Tired? Conserve Your Precious Spoons’, Cape Breton Post, May 1).
I heard about the column recently on Twitter from well-known chronic illness advocate Britt Johnson, who pens the blog ‘Hurt Blogger’ and who can be found on Twitter at @HurtBlogger. Soon after Britt posted about the column, #spooniegate began making the rounds in the Twitterverse.
In the column, Gouthro described to her readers the idea of ‘ The Spoon Theory,’ a concept developed by Christine Miserandino.
‘ The Spoon Theory’ is an analogy which serves as a tool for those with chronic illness to make real for others the ever-present fatigue often accompanying rheumatoid disease, lupus, fibromyalgia, and a whole host of other chronic diseases and conditions. The theory describes how those with chronic illness wake up each day with a certain number of ‘spoons.’ Each activity of the day, no matter how insignificant, takes these spoons away.
For example, one day I might wake up with 15 spoons; the next day I might wake up with five. Getting out of bed takes a spoon, showering takes another, drying my hair still another, and getting dressed yet another.
On a day I wake with 20 spoons, I still have many spoons to spend after these activities. On a day I wake with five spoons, I have one spoon left for the whole day. On days I have even fewer spoons, I use them to move from the bed to the couch and to use the bathroom. When I have spent my spoons for the day, I am done. I have nothing left. I am utterly spent.
“Energy conservation,” as Gouthro describes it, is a choice for those living without chronic illness, and indeed their fatigue can be influenced by their choices. The choice to get enough sleep, to manage stress and to limit “midweek dinners out with friends or the long chats over text or on Facebook,” can help people experiencing the fatigue of daily life.
I, however, rarely have the opportunity to “conserve” energy. My spoon availability is dependent mostly on the whims of my immune system, and rarely does it listen to what I have to say or respond to the choices I make.
Normal fatigue does not qualify for ‘ The Spoon Theory’; the fa- tigue of chronic illness is an entirely different beast. I liken Gouthro’s misuse of this analogy to someone saying, “Hey, I stubbed my toe today. I’ll think I’ll park in the handicap space.” Equating a stubbed toe to a legitimate disability is disingenuous, and the use of a tool needed by someone who is disabled by someone who isn’t disabled is inappropriate.
In a similar fashion, Gouthro’s equating everyday fatigue to the debilitating fatigue of chronic illness is inappropriate and destructive.
‘ The Spoon Theory’ is a tool which allows those with chronic illness to give insight into some of the difficulties they face each and every day. Misappropriating this tool by using it as an analogy for everyday fatigue greatly weakens its educational impact.
I am sure Gouthro wrote her column with the best intentions. I can guarantee she never intended to start #spooniegate. It is my sincere hope that Gouthro chooses to address this issue with an apology, or perhaps more significantly, with a well-informed column designed to educate her readers about the topic of chronic illness. Teresa Johnson Great Bend, Kansas USA