Light shed on ‘Spoon The­ory’

Cape Breton Post - - EDITORIAL -

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

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