Sara Press//
In March of 2020, a family friend contracted COVID-19. He was working as a heli-ski guide at a remote lodge in British Columbia when it happened. Dozens of tourists from across the world had congregated there because of their mutual love of the mountains. Within a two-week period, at least 50 people tested positive for COVID originating from guests at this lodge.[1] It was early in the pandemic and there was still much uncertainty about what this new virus was and what it could do to our bodies. My friend and three of his co-workers were among those for whom the COVID infection never ended.
After contracting the virus, my friend became increasingly sick. As the months wore on his symptoms worsened; he lost his ability to work, and later underwent major emergency surgeries. He has spent the last three years fighting to regain his health while navigating a healthcare system that lacks the sufficient knowledge and infrastructure to support him.[2] While their stories and symptoms differ, there are many others like my friend whose lives have been upended by long COVID.
According to the CDC, “1 in 13 adults in the U.S. (7.5%) have ‘long COVID’ symptoms.”[3] The numbers are equally concerning across the border. A recent article published in the Canadian Medical Association Journal shows that “About 1.4 million people in Canada [which has a population of 38 million] have been affected by long COVID,” and “nearly 15% of adults in Canada with suspected or confirmed SARS-CoV-2 infection had symptoms beyond 3 months” (Quinn et al. 78).[4] Recently, a federal survey conducted by the Canadian government found that “Of the adults with longer-term symptoms: 47% had symptoms for 1 year or longer; 21% reported their symptoms often or always limited their daily activities; [and] 74.1% of those who were employed or attending school missed work or school due to their symptoms.”[5] While there have been new federal initiatives to invest in the study and treatment of long COVID in Canada, [6] these efforts coincide with other public health resources being taken away. For example, in March of 2023, British Columbia transitioned all of its in-person long COVID clinics online, eliminating patients’ access to doctors at a time when the province is already struggling with a shortage of primary care providers.[7]
When I spoke with my family friend about his experiences with the Canadian healthcare system, he lamented the feeling of being left behind. His “cohort,” as he calls it, was among the first group of people in Canada to get COVID-19. At that time, there was no understanding of what long COVID might entail. Today, there are over 100 different symptoms associated with long COVID, the most common of which include breathing issues, sleeping issues, chronic fatigue, physical discomfort and pain, cognitive issues like memory loss and brain fog, and mental health issues like anxiety and depression. [8] COVID-19 has also been shown to cause “systemic damage to almost all major organs and organ systems” (Bhalerao et al. 2878).[9] And yet, although there is a growing list of symptoms associated with long COVID, as Hannah Day notes, there is still “uncertainty around long COVID’s definitions” (3).[10] Scientists’ ever-evolving understanding of COVID-19—and the lack of clarity around long COVID—shed some light on public health agencies’ struggles to create standardized diagnostic procedures for treating individuals with this ambiguous condition. Unfortunately, many people with long COVID have suffered during this period.[11]
The medical uncertainty surrounding long COVID urges us to consider the cultural implications of this condition regarding the general public’s understanding of chronic illness. How has long COVID increased our awareness of and empathy for other chronic health conditions like Lyme disease, fibromyalgia, or chronic fatigue syndrome? How has the language of “long” COVID helped people better understand the indeterminacy of other chronic health conditions? For example, an infectious disease doctor in British Columbia recently told me about a patient she treated for tuberculosis (TB) several years ago. The doctor was convinced that she had cured her patient—the patient’s tests and bloodwork indicated that the infection was no longer present—but the patient insisted that she was still infected. Eventually, the patient’s symptoms disappeared. The doctor saw the patient several months ago and told her that she had suffered from “long TB.” The patient immediately understood what the doctor meant.
The pandemic has changed the world, and it has changed the way we talk about illness. “Long TB” would not have been a coherent phrase to the lay public just three years ago. But beyond giving us a new vocabulary to articulate ambiguous medical conditions, the prevalence of long COVID has highlighted how some illnesses may not have clear narrative trajectories. Indeed, in The Wounded Storyteller: Body, Illness, and Ethics, Arthur W. Frank explores the complicated nature of illness through three narrative structures: the “restitution narrative,” the “chaos narrative,” and the “quest narrative.”[12]
According to Frank, “The plot of the restitution has the basic storyline: ‘Yesterday I was healthy, today I’m sick, but tomorrow I’ll be healthy again’” (77). The “chaos narrative,” on the other hand, “is the opposite of restitution: its plot imagines life never getting better. Stories are chaotic in their absence of narrative order” (97). Finally, “Quest stories meet suffering head on; they accept illness and seek to use it. Illness is the occasion of a journey that becomes a quest…the quest is defined by the ill person’s belief that something is to be gained through the experience” (115). Unsurprisingly, our society has a bias towards the “restitution narrative,” which showcases the “triumph of medicine” (115) and its ability to restore patients to health. Long COVID and other chronic illnesses, however, force us to contend with narratives that do not always have tidy endings.
Although illnesses may not follow linear trajectories, telling our stories can help us make sense of them. More still, sharing our stories can help us find community with others who have gone through, or are going through, similar struggles. My friend, for example, found community in online support groups.[13] Such communities can provide valuable information and emotional support, and they can also enact real institutional change through activism and political engagement. In moments of medical uncertainty, knowing that we are not alone can sometimes be the most powerful antidote.
Works Cited
[1] Despite PCR testing being scarce at the time, according to my family friend, these tests were used to confirm the 50 + cases of COVID-19 originating from guests at the lodge.
[2] Although the situation is difficult for many people with long COVID in Canada, Canadians are fortunate to have access to free healthcare. For people living in countries with privatized healthcare, like the U.S., long COVID—and almost any unexpected health issue—can be financially ruinous.
[3] “Nearly One in Five American Adults Who Have Had COVID-19 Still Have ‘Long COVID.” Centers for Disease Control and Prevention, June 22, 2022. https://www.cdc.gov/nchs/pressroom/nchs_press_releases/2022/20220622.htm
[4] Quinn, Kieran L., et al. “Diagnosing Post-COVID-19 Condition (Long COVID) in Adults.” CMAJ 195.2: 78-89. January 17, 2023.
[5] “Post COVID-19 Condition (Long COVID).” Government of Canada. 9 March, 2023. https://www.canada.ca/en/public-health/services/diseases/2019-novel-coronavirus-infection/symptoms/post-covid-19-condition.html
[6] In August 2022, the Canadian government introduced “Budget 2022,” which will provide $9 million to the Public Health Agency of Canada over the next three years to “support evidence-based guidelines” for patients, caregivers and healthcare professionals grappling with the effects of long COVID. Budget 2022 also allocated $20 million for the Canadian Institutions of Health Research. While these investments are promising, there is more work to be done. To read more about this budget plan and Canada’s statement on long COVID, see “Post COVID-19 Condition (Long Covid).” https://www.canada.ca/en/public-health/services/diseases/2019-novel-coronavirus-infection/symptoms/post-covid-19-condition.html
[7] Ballard, Joel. “B.C. is Taking its Long-COVID Clinics Online and Removing Access to Their Doctors.” CBC News, February 9, 2023. https://www.cbc.ca/news/canada/british-columbia/b-c-covid-transition-1.6742906
[8] “Post COVID-19 Condition (Long COVID).” Government of Canada. 9 March, 2023. https://www.canada.ca/en/public-health/services/diseases/2019-novel-coronavirus-infection/symptoms/post-covid-19-condition.html
[9] Bhalerao, Aditya, et al. “Molecular Mechanisms of Multi-Organ Failure in COVID-19 and Potential of Stem Cell Therapy.” Cells 10.11 (2021): 2878.
[10] Day, Hannah L S. “Exploring Online Peer Support Groups for Adults Experiencing Long COVID in the United Kingdom: Qualitative Interview Study.” Journal of Medical Internet Research 24.5 (2022): 1-33.
[11] In lieu of sufficient answers and understanding from healthcare providers, many “long haulers” (as people with long COVID are often called) have sought information and community through online support groups. My friend recommended the group “Body Politic”—see https://www.wearebodypolitic.com– and its “Long COVID” Slack channel as an excellent resource for people seeking community and information. He also spoke highly of The Long COVID Survival Guide (edited by the founder of “Body Politic,” Fiona Lowenstein), and The Long COVID Handbook, by Gez Medinger.
[12] Frank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics, Second Edition. Chicago: University of Chicago Press, 2013.
[13] See footnote 11 for long COVID resources.
Cover Image: Freepik (Creative Commons)
