Every day for a few years now, I’ve had to navigate my fatigue. Sometimes it’s only subtle, tugging at my consciousness as a toddler might. Sometimes it’s pervasive and insistent: clouding my thoughts, severing my understanding of words and sentences, drawing my eyelids down and holding them shut until I fall asleep again.
Initially, I thought this was because of my work schedule. I worked at Starbucks as an opening shift supervisor for over a year. I had to wake up at 4:30 a.m. five days a week. I would be done by 2 p.m., then take the hour long bus ride home, where I often had an hour to nap before my child got home and I made dinner and asked about school. It was easy to chalk up my exhaustion to my work schedule, then.
When I changed my work schedule and I still felt exhausted, I took this as some failure on my part. An iron deficiency, perhaps, or an inherent laziness that made it so I couldn’t operate the way everyone else seemed to be able to. One or two hour naps became a necessity in my life – something my family had come to accept, though I could tell it disappointed them, taking me away from playing with my child or watching movies with my husband. Taking me away from what I knew every writer feels they must do: write.
By the time I branched into freelancing, I figured that exhaustion and frequent brain fogginess were just part of my life. I tried to meet my deadlines despite my fatigue, despite the mounting depression and anxiety that crept up slowly, like they always do, submerging me so incrementally I didn’t see them until they were already drowning me. I spent an entire ten-day writing residency alternately napping, crying, having panic attacks and vomiting from stress – between my valiant attempts to look “strong” and “healthy” and “normal” with the other participants. I didn’t feel that I could share what I was dealing with because I didn’t want to look sick or weak.
What’s more, I weathered a two-month bout of bronchitis that wouldn’t go away, despite two rounds of antibiotics and three prescribed inhalers. I laughed at literary events and made jokes in emails and chugged Buckleys and tried to be “strong” and “healthy” and “normal.” I didn’t think of myself as sick. I couldn’t think of myself as sick, because then I felt I would become a dreaded sick woman – the type whose symptoms are so often [explained away] by careless doctors as an inevitable part of being a woman.
As I tried to keep moving forward in my literary and professional pursuits, I frequently found myself thinking of Virginia Woolf’s essay, “On Being Ill.” She wonders why there isn’t more literature taking up the theme of being ill. Based on what would happen when I attempted to casually bring up some of my issues with other writers, who often had little to offer than a sympathetic “me, too,” or, in one case, a series of clinical, dehumanizing questions about the effect my depression has had on my sense of self, I can understand why.
Other than hospitals, society doesn’t make space for those who are ill, and therefore doesn’t have a language outside of medical terminology with which to engage in these sorts of conversations. Discussion instead revolves around the road to health and getting “better.” But what about those who have chronic illness? What about those who must live with mental illness their whole lives? What about those who are disabled? Getting “better” might not be an option. What then? Are we to be thought of as forever broken? Are we to hide ourselves away so we don’t make others uncomfortable with our perceived brokenness?
Johanna Hedva, in her brilliant essay “Sick Woman Theory,” uses the writing of Ann Cvetkovich and Starhawk to argue that “wellness, as it is talked about in America today, is a white and wealthy idea.” Medical literature implies that everyone is white, able-bodied and middle-class, therefore the idea of “feeling bad” for any reason is a mystery in dire need of solving. Further, this notion of “wellness” supposes that bodies are meant primarily for capitalist work and production, and that anything that impedes this work should only be temporary. What, then, is left for those who are suffering from any sort of illness or condition that makes them unable to do this work? Or, as Hevda asks, “How do you throw a brick through the window of a bank if you can’t get out of bed?”
Hevda is referring specifically to the ways that protesting is difficult for those who are sick, but I think that there is a case to be made for the literary industry, as well. Just this past year, Spokane-Coeur d’Alene writer Sherman Alexie had to cancel his book tour for his highly anticipated memoir, You Don’t Have to Say You Love Me, due to depression. He wrote that he had “been sobbing many times a day” and “rebreaking my heart night after night… I couldn’t medicate my sadness – my complicated grief.”
As I was preparing to leave the aforementioned emotionally disastrous writing retreat, I found myself wondering about my own ability to do a book tour. Would I have to cancel, as Alexie did? Would I have people disappointed in my inability to speak without bursting into tears? Would I be deemed unreliable by publishers? A “bad investment”? Who would want to come hear a writer speak who had a panic attack just before leaving her room? What if I was so exhausted that I couldn’t string together intelligent responses to questions? I already have a hard enough time at the handful of literary events I’ve gone to so far – pretending to be “strong” and “healthy” and “normal” so I can half-heartedly attempt the type of schmoozing everyone else seems to do with ease. There is little acknowledgement that my experience of these types of events, my fear and anxiety around these types of events, is common. We all pretend that we are well at all times.
Recently I have received a diagnosis that has illuminated my years of fatigue: hypothyroidism. I’ve received medication that is supposed to help relieve my symptoms, including my exhaustion. I’ve also started taking a medication that is supposed to help manage my depression and anxiety. But I still worry the literary spaces we create don’t make themselves welcome to those who are not naturally extroverted and charming and neurotypical and able-bodied. Or “strong” and “healthy” and “normal.” What are we asking people to perform at these sorts of events, and why? Is there a way that we can create a space, a language, around illness, that not only robs it of its stigma, but also positions it as a fact of life instead of merely an obstacle to be overcome on some imaginary road to “wellness”? That is a space I’d like to go to. That is a language I’d like to create.
The views expressed by Open Book columnists are those held by the authors and do not necessarily reflect the views of Open Book.
Alicia Elliott is a Tuscarora writer living in Brantford, Ontario with her husband and daughter. Her literary writing has been published by The Malahat Review, Room, Grain and The New Quarterly, and her current events editorials have been published by CBC, Globe and Mail, Maclean's and Maisonneuve. She's currently Associate Nonfiction Editor at Little Fiction | Big Truths, and a consulting editor with The New Quarterly. Most recently, her essay, "A Mind Spread Out on the Ground" won a National Magazine Award.