“Did you do anything fun this weekend?”
It’s a common question, one that almost everyone asks or hears on Monday mornings. It’s meant to be as innocuous as, “Do you have the time?” or “How’s it going?”. But for people with chronic illness, the question can cause anxiety, shame, and a feeling that we need to explain ourselves to the poor person who asked, who may just be a coworker or a neighbor trying to make elevator conversation.
The reason this question is difficult for Lymies and patients of other chronic illness is because we often don’t have enough spoons left over for fun.
Developed by Lupus patient Christine Miserando, the Spoon Theory has become a common way of explaining life with chronic illness. It goes like this: Every morning people start out with a certain number of spoons, which represent units of energy. Everyone starts the day with roughly the same amount of spoons. Of course, this starting supply can vary; chronic illness or not, factors such as staying up all night with a sick child, working late, or being run down can affect anyone’s energy levels. But let’s say, for the sake of argument, that everyone starts the average day with 10-12 spoons.
Healthy people will lose some spoons throughout the day, but because they have a baseline of health and energy reserves, they don’t lose them as readily as sick people do. Miserando puts this in tangible terms when she explains that for patients with chronic illness, the every day tasks of showering, making breakfast, and getting dressed each cost one spoon. By mid-morning, a patient may be almost out of spoons, which means that s/he will have to ration the rest; the supply won’t get replenished until after a full night’s sleep (which can be hard to come by for many Lymies; we sometimes start the day with a spoon deficit).
With our energy supply depleted by the mere tasks of surviving, there are rarely enough spoons left over for living. What that means in terms of a Lymie’s Monday morning answer is that there often weren’t enough spoons left to spend on weekend fun. And that can be a tough concept to explain in an elevator pitch.
The hardest part for healthy people to understand is that ability and desire do not go hand-in-hand here. If I’m lying on the couch on a Friday night, it’s not because I don’t want to go out and do something fun. It’s not because I’m depressed. It’s because I’m out of spoons.
As I get older, I know that the likelihood of lying on the couch on a Friday night is high for anyone my age. Friends with full time jobs and families and houses to take care of are also exhausted by the weekend. I don’t mean to suggest that healthy people are full of vim and vigor; the difference simply is that their spoon supply can be restored more readily. If they stay in on a Friday, they’re more likely to be able to attend or play in a soccer game on Saturday morning, while a chronic illness patient is still trying to figure out if s/he has enough spoons to make breakfast.
As I’ve gotten healthier, my own spoon supply has become more stable. It still costs spoons to dry my hair and get myself to work, but it doesn’t cost all of them, as it once did. I’ve also become more discerning in how I spend my spoons. I’ve learned that “all work and no play” indeed makes any life dull, so I’ve tried to find ways to save spoons for fun. This sometimes means letting tasks fall to the wayside, or relying on outside help more than I ever would have expected to in my healthier days. It might mean letting the laundry pile up another two days, so I have the energy to go out to dinner with friends. It might mean taking a taxi instead of the subway to that dinner. It might mean having a cleaning service come in, so instead of scrubbing the shower, I can watch a movie or take a walk. I simply don’t have enough spoons to do both.
At first, I felt really guilty about these choices. How was it fair for me to save spoons for fun, when I couldn’t work a full-time job? How was it right for me to spend money on a taxi, when the subway was cheaper? It’s taken some reframing for me to understand that having a chronic illness, and being unable to live a fully independent life, doesn’t mean I need to spend every spoon I can to “earn my keep”. Everyone deserves—nay, needs—a balanced life. For those of us with chronic illness, the cost of a taxi is not nearly as high as the cost of our well-being. Being frugal in our spoon spending allows us to make longer-term investments in our health.
No matter how judicious I am with my spoons, I still sometimes run out completely. There are still weekends that I have to spend recuperating. But when I do have an extra spoon, I’m learning that it’s okay—good, even—to put it away for a rainy day. Who knows—that bonus spoon may just lead to a great Monday morning story.
Jennifer Crystal is a writer, educator and patient advocate in Boston. She earned her M.F.A. in Creative Writing from Emerson College, where she was a Dean's Fellow, and her B.A. in English and French from Middlebury College. She also completed a summer of study at the Bread Loaf School of English. Her first book, Et Voilà: One Traveler's Journey from Foreigner to Francophile, was published by Belfort and Bastion in 2014. She is working on her second book, a memoir about living with chronic tick-borne diseases.
This past January, Jennifer taught a Winter Term course called "Healing Through Writing" at her alma mater, Middlebury College. She now teaches creative writing seminars at Grub Street in Boston.
Jennifer writes a syndicated blog for lymedisease.org and tbdalliance.org, which has received mention in The New Yorker, CQ Researcher and weatherchannel.com. She has been interviewed by cbsnews.com, and was also interviewed by award-winning health writer Laurie Edwards for her book In the Kingdom of the Sick; Jennifer's story leads chapter seven of that book, and was given mention in a Wall Street Journal review. Jennifer received a grant from the Emerson Enhancement Fund to attend the September 2014 Workshop in Narrative Medicine at Columbia University Medical Center. She was a finalist for the 2012 Writers' Room of Boston Emerging Writer Fellowship and is also a member of Neuwrite Boston.
Jennifer's work has appeared in The Boston Globe, (T)here: Musings on Returnings (Martlet & Mare 2014), wbur.org, Spry Literary Journal, Transitions Abroad, Abroad View, Middlebury Magazine, and Wilton Magazine. Please click on the link to the left for a list of all of Jennifer's publications.
Jennifer enjoys skiing, boating, volunteering at Spaulding Rehabilitation Center's Adaptive Sports Program, spending time with friends, and eating chocolate.
Contact Jennifer at email@example.com.