On March 16, Chandra noticed a burning sensation in her ear canals and neck. She and her family were isolating at home due to the outbreak of COVID-19, but public health officials were warning only of fever and cough so she didn’t think too much of it. It wasn’t until the cough and chest pain started several days later—around the same time that her children came down with fevers, sore throats, and a cough—that she realized there was a chance she had COVID. More than ninety days later, following a roller coaster of abdominal issues, pneumonia, pleurisy, conjunctivitis, fatigue, and skin rashes, Chandra and her family are still not completely free of symptoms.
A week after Chandra first felt ill, Michele’s illness began with a low-grade fever, debilitating fatigue and neurological symptoms—tingling, dizziness, and altered taste. It progressed to include a severe sore throat, earaches and mouth sores. She has never had more than an occasional cough although she did experience some rib discomfort on exhalation, especially after exertion. Her husband presented with a sudden, and frightening constriction of his esophagus after eating that progressed to a cough, fatigue, fever and severe joint pain.
We are two labour union employees, used to thinking about work, employment standards, and labour relations. We are professional researchers, with backgrounds in health promotion, science, precarious work, and income security policies. We have also been among the first Canadians to experience COVID-19 personally. Our personal experience has led us to start thinking very carefully about the ramifications of COVID-19 for work, for workers, for public policy, and for the regulation of employment.
Which is not to say we have a lot of answers. At this point, we have a lot more questions than answers. But that doesn’t mean that we shouldn’t start thinking about these issues now and how we can ensure workers’ safety and respect for their rights in the midst of so much uncertainty. So what does all of this mean for workers?
What does COVID-19 look like? Three months ago, when the World Health Organization first declared a global pandemic and governments across the country began shutting down all non-essential activities, the list of symptoms linked to COVID was pretty short. It focused on a fever, a dry cough, and a sore throat. It might progress to pneumonia. The majority of cases were presumed to be mild and were therefore predicted to recover within two weeks.
Three months later, we know that description was woefully inadequate. COVID-19 is not just a respiratory infection. It attacks multiple organs, including the heart, the kidneys, the liver, the intestines, and the brain. It may also attack blood vessels. Blood clotting is a common concern, contributing to heart attacks, strokes, and skin rashes such as “COVID toes.” Other skin sores and mucous membrane sores are also common. For some individuals, COVID is primarily an abdominal illness, causing gastrointestinal distress, nausea, vomiting, and diarrhea. There are also reports of neurological symptoms, including headaches, hallucinations, confusion, dizziness, and brain fog. Many people report losing their sense of smell or taste. Inflammatory conditions are a common complaint, including pleurisy and costochondritis.¹ In some children, the inflammation attacks multiple organ systems, resulting in Pediatric Multi-System Inflammatory Syndrome.
Meanwhile, some of the key symptoms first identified may not be so widespread after all; a study of patients hospitalized with COVID-19 in New York City found that less than one-third had a fever when they first came to the hospital.²
This means that the advice that has been given that Canadians should stay home and self-isolate if they experience flu-like symptoms including fever and cough—is inadequate. Given the risks associated with such a highly infectious disease, everyone should be self-isolating at the first sign of any illness, rather than waiting for “classic” COVID symptoms.
Our experience certainly bears this out. In three months of illness, Chandra has never had a fever. Michele only occasionally had a cough. And everyone in our two families has had a different set of symptoms and a different presentation of the illness.
The promise and perils of diagnosis Unfortunately, Canada has not been able to follow the example of countries like South Korea and Germany, who have been able to test large numbers of citizens daily to identify who has the virus, isolate them, and trace their contacts. Instead, many provinces have been slow to roll out testing and have strictly limited access to testing.
In Ontario where we live, neither of us qualified for testing because of the insistence on international travel or exposure to a known case. In Chandra’s case, her family would have qualified on the grounds that a neighbour had tested positive except that Ottawa Public Health never informed them that they had been exposed. Michele had to spend days convincing public health officials that her symptoms merited testing. Regardless of her underlying health conditions that put her at increased risk, and regardless of telling public health that several colleagues and friends with whom she had spent time just prior to lockdown were also experiencing symptoms, the rigidity of the criteria, left her out. Interestingly, she was told that had she lived equidistant from the testing site in the opposite direction, she would have qualified, as different health units had different criteria. Only once her husband, also in a risk category, experienced an unusual and severe symptom, did they agree to test her as well.
International studies using blood tests to determine who has antibodies show that on average, only one in 20 COVID infections is actually being diagnosed through testing.³ Experts in Canada believe the same thing is occurring here, with thousands of cases being missed due to extreme rationing of tests.⁴ The lack of access to testing means that many people have struggled with uncertainty about their diagnosis—especially before public health officials expanded the list of known symptoms. People may not have been as quick to self-isolate as they should have been, believing that if there was really any chance their symptoms were COVID, officials would prioritize them for testing. Others may have struggled to get recognition from their employer or from their doctor that their symptoms were related to COVID-19.
For those who have been able to access testing, however, there are also concerns about the reliability of the tests. Depending on the test, the rate of false negatives may be as high as 30% to 50%. In addition to the sensitivity of the test kits used, and the possibility of a collection or testing error, the likelihood of obtaining a positive test seems to depend on how many days have passed since the onset of symptoms.⁵ A German study conducted on patients hospitalized in January and February suggests that timing also varies according to the location of the swab and the presentation of symptoms, with nasal and throat swabs likely to test negative several days before sputum and stool samples begin to test negative.⁶ A Chinese study from February backs this up, reporting that throat swabs had an increasingly low positive rate after eight days, while nasal and sputum swabs were more likely to test positive even after fifteen days.⁷ Anecdotal evidence from doctors points to cases where patients who are hospitalized have tested negative on throat swabs despite the virus being present in the lungs.⁸ Having a negative swab is therefore no guarantee of not having the coronavirus.
Michele and her husband were both tested more than three weeks after symptom onset. The tests were negative, but they received conflicting information from different medical professionals about what that result meant—whether they were actually negative or whether their symptoms meant that they should presumed positive despite a negative test and should still be quarantining. They followed precautionary principles, and quarantined until the symptoms were gone for more than 72 hours. In Chandra’s case, she and her daughter were both tested at 31 days and 46 days respectively. But the negative test results meant that her doctor insisted their ongoing symptoms could no longer be related to the coronavirus.
Unfortunately, antibody testing—which is being held out as a means of determining after the fact who has been exposed to the coronavirus—also suffers from false negatives and false positives. At the population level, these false tests may be negligible, but for an individual struggling to determine a diagnosis, false tests are a significant problem particularly if employer accommodations, government supports, or medical treatment are dependent upon a medical diagnosis.
What does recovery look like? Initial guidance from the World Health Organization suggested that the majority of patients diagnosed with COVID-19 would recover within two weeks, with patients who were hospitalized taking up to six weeks or longer to recover. However, reports are now emerging from Italy, France, the UK, and the United States about long recoveries of six to ten weeks for even mild cases.⁹ There are also concerns about whether the illness—or the damage that it wreaks—could be chronic.¹⁰
False recoveries are common. Patients feel better and start to resume normal levels of activity, only to relapse and have their symptoms return. Patients in online survivor support groups report multiple relapses. For some, the relapses get milder each time the symptoms return. For others, the relapses can be more severe and result in serious complications. Chandra’s husband and daughter, both of whom had comparatively mild symptoms, have had several relapses, some of which came after more than two weeks of being symptom-free. Michele and her husband have also experienced brief respite from symptoms, with the periods in-between symptoms becoming longer. Still, every relapse is a discouraging reminder that they are still not free from this virus. While Michele is largely symptom-free now, her sense of taste is still altered and her fatigue returns sporadically and without warning.
In other cases, symptoms are constant and unrelenting, with no relief. Two of Chandra’s children have been coughing for eight weeks straight. And still others experience the development of new symptoms, even weeks after exposure. In Chandra’s case, for eight weeks, Chandra had new symptoms crop up every 3-6 days, from inflammation, to skin rashes, to secondary infections.
Because there has been very little attention paid to mild cases so far, we don’t have a good sense of how many people experience prolonged symptoms. A Swedish phone survey conducted in mid-April found that one-third of randomly sampled Swedes reported experiencing at least one symptom of COVID-19 for five weeks or more. A similar survey conducted in early May found that nearly one-third reported experiencing symptoms for at least ten weeks.¹¹ A report by the South Korean public health authority noted that 29% of patients in non-hospital treatment centres and 37% of patients in hospitals received treatment for COVID for four weeks or longer before being discharged.¹² But without a more systematic attempt to track who has the virus and to follow them through the process of recovery, there is no way to identify what proportion of survivors will experience prolonged recoveries. In fact, public health authorities in Canada and the United States have still not acknowledged that recovery for mild cases may take much longer than two weeks. In our experience, doctors and medical professionals have also been slow to acknowledge this reality.
It is also not at all clear how long someone remains infectious and when it is safe for them to be around others. With early cases, patients needed to have two negative swabs in a row to be considered recovered and to exit self-isolation or be discharged from care. Because of the limits of testing, however, Ontario moved to a standard of fourteen days or twenty-four hours after your symptoms disappear. But if your symptoms reappear, are you still infectious?
Evidence from South Korea, where more than 350 COVID-19 patients re-tested positive for the disease after having tested negative, with some experiencing a relapse in symptoms, suggests that these individuals are not infectious. Public health authorities there were unable to culture virus cells from these swabs, suggesting that the tests were capturing the RNA of dead virus cells.¹³ However, studies from early patients in China suggests that some patients shed the virus for as long as 37 days.¹⁴ We don’t know yet how long patients might be infectious for, nor whether a short recovery followed by a relapse means that patients are no longer infectious.
If we are embracing a precautionary principle to prevent the spread of this virus, should workers be allowed back if they have tested negative but are still showing symptoms? What if they return to work after a set number of days being symptom-free only to have their symptoms recur? How do we support workers through a long isolation period if such isolation is necessary?
With new discoveries every day about the nature of this virus and what recovery might look like, should we be rushing workers back to work as fast as we can? And how do we ensure workers have access to medical care and other therapies, such as physiotherapy, that they might need to fully recover? Expecting someone to recover on their own with no medical assistance for months is not reasonable or humane.
Among those who have recovered from the myriad symptoms associated with COVID-19, stories of lingering fatigue and brain fog are common. We know that after the first SARS epidemic in 2003, a substantial portion of survivors developed chronic fatigue syndrome.¹⁵ It is possible that some COVID-19 patients will develop post-viral fatigue or chronic fatigue syndrome as well. We also know that a significant number of SARS survivors experienced ongoing lung damage that persisted at least three years after recovering from that virus.¹⁶
While it may not be clear for years whether some COVID-19 survivors will experience chronic or persistent health conditions, there are some who have already been permanently disabled by strokes or heart attacks.¹⁷ These individuals will most definitely need ongoing care or accommodations.
It’s not just the physical manifestations of the disease that linger either. Doctors are warning that survivors may experience PTSD—especially if they have been intubated or in the ICU.¹⁸ Health care workers and family members, barred from being near their loved ones in hospitals, may also develop PTSD. Even though neither of us experienced life-threatening symptoms or needed to seek urgent medical care, we have ongoing anxiety about relapses, managing symptoms, and what our long-term health will look like. This can manifest itself in voluntarily restricting activities to avoid any chance of a relapse, distractedness while trying to engage in work or leisure, and mood swings.
In survivor forums, many individuals report that their doctors are telling them their lingering symptoms are due to stress or anxiety, rather than the persistent symptoms of the virus or the body’s immune response. Not being believed and feeling like they are on their own to address health challenges actually creates anxiety and stress. Especially in a situation where everything is new, survivors should not be accused of exaggerating symptoms or of creating symptoms with their own behaviours. Survivors reports should be believed and taken seriously.
There are also very real concerns among COVID survivors about stigma. There are participants in COVID survivor support groups who do not want to share their real names or any identifying information for fear that they will be stigmatized and shunned for having been ill. They are worried about being blamed for getting sick, blamed for having pre-existing conditions, or blamed for not getting better faster.
Part two of Michele and Chandra's piece examining what this means for public health, employment, and governments will be published on Thursday, June 25.
Footnotes
¹ Lenny Bernstein and Ariana Eunjung Cha. Doctors Keep Discovering New Ways the Coronavirus Attacks the Body. The Washington Post. May 10, 2020. https://www.washingtonpost.com/health/2020/05/10/coronavirus-attacks-body-symptoms/?arc404=true
² Richardson S, Hirsch JS, Narasimhan M, et al. Presenting Characteristics, Comorbidities, and Outcomes Among 5700 Patients Hospitalized With COVID-19 in the New York City Area. JAMA. Published online April 22, 2020. doi:10.1001/jama.2020.6775
³ David Fisman, Tweet, May 17, 2020, https://twitter.com/DFisman/status/1262141885986082817?s=20.
⁴ Andrew Russell, “Canada May Be Missing Thousands of Coronavirus Cases, Experts Say,” Global News, April 2, 2020, https://globalnews.ca/news/6768573/coronavirus-canada-missing-covid-19-cases/.
⁵ Lauren M. Kucirka, Stephen A. Lauer, Oliver Laeyendecker, Denali Boon, and Justin Lessler, Variation in False-Negative Rate of Reverse Transcriptase Polymerase Chain Reaction–Based SARS-CoV-2 Tests by Time Since Exposure. Annals of Internal Medicine (2020). https://doi.org/10.7326/M20-1495
⁶ Wölfel, R., Corman, V.M., Guggemos, W. et al. Virological assessment of hospitalized patients with COVID-2019. Nature (2020). https://doi.org/10.1038/s41586-020-2196-x
⁷ Yang Yang, Minghui Yang, Chenguang Shen, et al. Evaluating the accuracy of different respiratory specimens in the laboratory diagnosis and monitoring the viral shedding of 2019-nCoV infections. medRxiv (2020). doi: https://doi.org/10.1101/2020.02.11.20021493
⁸ Rick Westhead, Tweet, May 12, 2020, https://twitter.com/rwesthead/status/1260179765190963200?s=20.
⁹ Jason Horowitz, “Surviving Covid-19 May Not Feel Like Recovery for Some,” The New York Times, May 10, 2020, https://www.nytimes.com/2020/05/10/world/europe/coronavirus-italy-recovery.html; Nicola Davis, “Lingering and Painful: The Long and Unclear Road to Coronavirus Recovery,” The Guardian, May 1, 2020, https://www.theguardian.com/world/2020/may/01/lingering-and-painful-long-and-unclear-road-to-coronavirus-recovery-long-lasting-symptoms; Erika Edwards, “Fever, Fatigue, Fear: For Some Recovering COVID-19 Patients, Weeks of Illness, Uncertainty,” NBC News, May 4, 2020, https://www.nbcnews.com/health/health-news/fever-fatigue-fear-some-recovering-covid-19-patients-weeks-illness-n1197806?fbclid=IwAR3nDFEA2-P_zX-bSegM0OPGxZER1ZNR1fr9eNBOH6-v9UK1Jld84pRo_es.
¹⁰ Camilla Hodgson, “Mystery of Prolonged Covid-19 Symptoms Adds to Unknowns,” Financial Times, May 17, 2020, https://www.ft.com/content/91e4482e-d120-49ab-93e3-d314d99b5336.
¹¹ Novus, Coronastatus 0417, https://novus.se/coronastatus-0417/; Novus, Coronastatus 0511, https://novus.se/coronastatus-0511/.
¹² Dong-A Ilbo, “Experts Warn of High Chance for COVID-19’s Resurgence,” April 27, 2020, http://www.donga.com/en/home/article/all/20200427/2048329/1/Experts-warn-of-high-chance-for-COVID-19-s-resurgence.
¹³ Sangmi Cha and Josh Smith, “Explainer: South Korean Findings Suggest 'Reinfected' Coronavirus Cases are False Positives,” Reuters, May 7, 2020, https://www.reuters.com/article/us-health-coronavirus-southkorea-explain/explainer-south-korean-findings-suggest-reinfected-coronavirus-cases-are-false-positives-idUSKBN22J0HR.
¹⁴ Fei Zhou, Ting Yu, and Ronghui Du, et al. “Clinical course and risk factors for mortality of adult inpatients with COVID-19 in Wuhan, China: a retrospective cohort study,” The Lancet, Vol. 395(10229), March 28, 2020, doi: https://doi.org/10.1016/S0140-6736(20)30566-3
¹⁵ Lam MH, Wing YK, Yu MW, et al. “Mental morbidities and chronic fatigue in severe acute respiratory syndrome survivors: long-term follow-up.” Archives of Internal Medicine. (2009). doi: 10.1001/archinternmed.2009.384.
¹⁶ Zhang, P., Li, J., Liu, H. et al. “Long-Term Bone and Lung Consequences Associated with Hospital-Acquired Severe Acute Respiratory Syndrome: A 15-Year Follow-up From a Prospective Cohort Study.” Bone Research 8, 8 (2020). https://doi.org/10.1038/s41413-020-0084-5.
¹⁷ Brit Long et al, Cardiovascular complications in COVID-19, The American Journal of Emergency Medicine (2020). DOI: 10.1016/j.ajem.2020.04.048.
¹⁸ Rawal G, Yadav S, Kumar R. Post-intensive Care Syndrome: an Overview. J Transl Int Med. 2017;5(2):90‐92. Published 2017 Jun 30. doi:10.1515/jtim-2016-0016.
Chandra Pasma is a labour researcher and policy analyst specializing in issues of work and income security. She and her family live in Ottawa. You can find her on twitter at @ChandraPasma.
Michele Girash is an activist, organizer and labour campaign officer. She has education and experience in basic science research, health promotion and women's wellness. Her current focus is on precarious work. Michele works in Ottawa but calls Northern Ontario home. Connect with her on twitter at @MGirash.
