We are four women battling COVID-19, from our homes in Montreal and Gatineau, Quebec and in Caen, France. We are artists and feminists bound together through our shared experiences of embodying a disease that has baffled the world. We were drawn together first through mutual acquaintances in the art world, and then became more tightly bound by providing each other with essential support — through constant presence, witchy knowledge and unconventional care practices, in response to medical communities that have not been able to meet our needs.
We are Amélie Deschamps, Becca Blackwood, Krista Muir and WhiteFeather Hunter. We share an eerie similarity of atypical symptoms not talked about in mainstream media, such as pericarditis and whole body neurological damage, along with the complications surrounding these serious ailments caused by COVID-19. One of the biggest challenges we’ve faced has been fighting for our lives while being disbelieved or dismissed by doctors, family members and humanity at large. As feminists, we know that this is a pervasive problem for women navigating the medical landscape. We have believed in each other, and that has truly helped us survive and work towards recovery from this disease.
What has also helped a great deal, has been an invaluable resource facilitated by a queer, feminist network based in NYC: The Body Politic COVID-19 Recovery Support Group. This group has gained over 5000 members just through word of mouth, including many medical professionals infected on the front lines, and has provided us with a wellspring of information, free resources and the kinds of validation we’ve needed. It has not escaped us that the most cutting edge, respectful and caring information about the disease has been made accessible through an intersectional, queer, feminist network.
This whole thing has been dramatically life altering. We hope that the four of us can continue to heal together and also pave the way to help others who get sick after us. We hope to help others navigate the failures of the health care systems globally, all the while prioritizing mental health during these extremely unprecedented, scary times.
Our stories:
Becca Blackwood: I was in NYC starting up a community arts centre/ shop/ gallery with a friend in Brooklyn. I had moved to New York on March 1st, before anyone started paying attention too heavily to Coronavirus. I started feeling ‘off’ around March 10th. After the first event in our new gallery, NYC mayor, Bill De Blasio announced a state of emergency and Canadian PM, Justin Trudeau made an announcement telling Canadians to “come home”. I found my way back to Canada and went straight into isolation, while my symptoms continued to get worse. I had a fever, chills, splitting headaches, my body felt as if I had been hit by a truck and I couldn’t get out of bed for days. Then I started coughing and having trouble breathing. I also got a positive coronavirus test. The next 3 months were a rollercoaster: I was diagnosed with pericarditis, costochondritis, POTS, bradycardia (alternating), pleurisy, nodules on my lungs and liquid in my right lung. At around 4 weeks, my condition began rapidly declining and I experienced numerous other critical symptoms. One doctor said, “Let’s just hope you don’t have acute respiratory failure. I’m going to prescribe you an Oxymeter, and a blood pressure monitor for at home.” Another said, “We all think that you should be on low dose steroids right now because you are having a cytokine storm… but we are too afraid to give them to you. We are worried that if it triggers the covid in your body again, you might not make it. You need to look at this like you are being tortured, and meditate through it”. I felt that no one knew what was happening, no one wanted to intervene out of fear it would kill me, and I was being left completely alone at home to just ride it out and hopefully not die. There is nothing quite like having fear of the ‘plague’, then getting it and being the first coronavirus patient to most doctors you see, who all say, “We have no idea what to do. This is new territory, you are a guinea pig. Anything we do to treat you at this point IS experimental.” I now have multiple doctors for every organ, and my healing journey is a full time job.
Krista Muir: I was in San Antonio, Texas, in the midst of touring my latest album. But when SXSW was cancelled and I heard tell of borders closing, I flew home early on March 14th and quarantined. A few days prior to leaving, I had a food poisoning feeling accompanied by mild fever, but it was hot in Texas and no one had yet started talking about the gastro-intestinal part of C19. Back in Montréal, I had a persistent pain in my chest, but it was reminiscent of the one I’d had back in December 2019 (when I had all the classic C19 symptoms, interestingly). It worsened, so I consulted with my family doctor and had a CT scan to rule out lung issues. At this point, I was diagnosed with “possible” pericarditis. There was liquid around my heart, indicating inflammation and that I may be fighting a virus. I wanted to be tested for C19 but was refused because I had no classic symptoms and didn’t qualify. After being referred to a cardiologist, I had a barrage of tests – all “normal”. He offered no theories as to why it felt like there was painful burning glass dust in my chest, a sensation of my heart being constrained and random palpitations that were so strong it felt like my whole body was “thunking” (sometimes after a gentle walk, but also sometimes just sitting doing no activity), and tingling in my left hand and arm. Symptom-shifting was bizarre – one week it felt like icy liquid was swirling around my heart, the next, I’d have severe growing pain type aches in my legs. Sometimes my legs would just get flushed and red hot. All the while the glass chest “dust” remained. When I was finally eligible for a C-test it was negative. Thankfully after 90 days, I’m feeling good.
WhiteFeather Hunter: I was in Perth, Australia working on a PhD. My partner, who was with me, traveled overseas for his father’s funeral and returned to Perth on March 8. Four days later, we were both sick. His symptoms were barely noticeable, while I had sore throat, dry cough and difficulty breathing, among other things. He had flown Emirates to Australia via Dubai, and we found out days later that the same flights immediately before and after his had confirmed COVID cases, though no one contacted us about his specific flight. Australian authorities refused to test us since neither of us had fever, nor had we been in contact with a “confirmed” case. We were forced to return to Canada at the beginning of April, and then after suffering crushing chest pain and a new cough, I was finally tested. This was almost a full month after the onset of my initial symptoms, and of course, the test was negative! I was diagnosed with pericarditis. But then began a months-long hell, including a close brush with death followed by a steady onslaught of medical poking and prodding to try to figure out what was wrong with me. Doctors were perplexed, claiming my symptoms couldn’t all possibly be related, because they didn’t fit the narrow set of symptoms in the COVID-19 model. I suffered deep inner tremors, shooting nerve pain, accelerated heart rate and palpitations, stabbing chest pain, body temperature deregulation, inflammation in multiple areas of my body, lung constriction and difficulty breathing, blood clots, intestinal agony, rapid weight loss and numerous other bizarre things. I only really started to improve after day 90, but some of my symptoms still remain. I have never had a fever.
Circulated by a group on the Body Politic COVID Recovery Support Group:
https://drive.google.com/file/d/1Es3HoRIldVZ9H2_2Xrcz5gqTKEIyIhyY/view
OPEN LETTER:
Dr. Theresa Tam Dr. Robert Strang
Chief Public Health Officer Chief Public Health Officer
of Canada Nova Scotia
Dr. Bonnie Henry Dr. Jennifer Wylie-Russell
Provincial Health Officer Chief Medical Officer of Health
British Columbia New Brunswick
Dr. Deena Hinshaw Dr. Heather Morrison
Chief Medical Officer of Health Chief Health Officer
Alberta Prince Edward Island
Dr. Saqib Shahab Dr. Janice Fitzgerald
Chief Medical Health Officer Chief Medical Officer of Health
Saskatchewan Newfoundland and Labrador
Dr. Brent Roussin Dr. Brendan Hanley
Chief Provincial Public Health Officer Chief Medical Officer of Health
Manitoba Yukon
Dr. David Williams Dr. Kami Kandola
Chief Medical Officer of Health Chief Public Health Officer
Ontario Northwest Territories
Dr. Horacio Arruda Dr. Michael Patterson
National Director of Public Health Chief Public Health Officer
Quebec Nunavut
June 30, 2020
Dear Doctors,
We are a group of Canadians and permanent residents who have all experienced, or are still
experiencing, symptoms of COVID-19 for months. Without any medical answers or insight into our
condition, we are left living in limbo, unable to access treatment and therapies, and filled with
uncertainty about our futures.
We are calling on you as the leaders of Canada’s public health response to COVID-19 to establish and
coordinate research into long-term illness caused by COVID-19, to ensure that medical support and care
is provided to those who are experiencing COVID-19 symptoms for many weeks and months, and to
implement effective standards for a presumptive diagnosis of COVID-19 for patients without a positive
test.
We also call for greater public awareness of the potential for prolonged symptoms and for public health
guidelines to be updated to ensure that physicians, policy makers, and employers are aware that some
individuals experience long COVID-19 illnesses.
Research
Initial guidelines provided by the World Health Organization and various Centers for Disease Control
around the world all stated that recovery for mild cases would take two weeks. However, many of us
have had cases that did not require hospitalization and yet we are having persistent symptoms three,
four, even five months after symptom onset.
We are not alone. Reports have emerged from Italy, France, the Netherlands, the United Kingdom, and
the United States of patients with similar patterns of prolonged illness. Some of us have experienced
periods of being asymptomatic followed by the return of symptoms. Others have had new symptoms
develop over time, and still others have experienced symptoms consistently without a break since the
onset of our illness.
COVID-19 is a new illness. Not only are the actual national or regional infection rates unknown, but
there is no solid data on prolonged cases of COVID-19 illness. However, there is reason to believe that
the number of people experiencing prolonged symptoms is not a tiny minority of COVID-19 cases. Data
collected by the COVID Symptom Study app in the UK, which asked people to voluntarily enter their
symptoms into an online app, suggests that 1 in 10 cases of individuals with COVID-19 symptoms
experience those symptoms for three weeks or longer.1 A Swedish phone survey conducted in early May
found that nearly one-third of randomly sampled Swedes who reported experiencing at least one
symptom of COVID-19 had been experiencing those symptoms for ten weeks or more.2
Public health guidance in Canada has directed people who are not critical to manage their symptoms at
home to ease the burden on the medical system. As a result, many Canadians have not contacted their
doctors despite experiencing ongoing symptoms. Others have tried to seek medical care and been
dismissed, either for not having a positive test or because they are told COVID-19 does not last beyond
two weeks. It is therefore impossible to say how many Canadians are experiencing a lingering COVID-19
illness or longer-term, possibly permanent, disability as a result of the illness.
The symptoms that we are experiencing affect every part of the body, and include:
• Fever and profuse sweating;
• A sore or scratchy throat; sneezing; runny, dry, or stuffed up nose; and sinus pain;
• Persistent cough, shortness of breath, and lung pain;
• Chest pain and pressure, including a bubbling or burning sensation in the chest, a stabbing
sensation in the chest, costochondritis, and pleurisy;
• Heart issues including pericarditis, myocarditis, tachycardia, bradycardia, and arrhythmia;
• Neurological issues, including headaches, dizziness, brain fog, orthostatic intolerance, vasovagal
syncope, loss of taste and smell, metallic taste, sore tongue, tinnitus, and light and sound
sensitivity;
• Swollen glands and lymph nodes;
• Skin rashes and sores, random bruising, mucosal membrane sores, and esophageal burning;
• Tingling and numbness in face, hands and feet, or neuropathy;
• Muscle aches and soreness, muscle weakness, and severe muscle and joint pain;
1 COVID Symptom Study, “How Long Does COVID-19 Last?” June 8, 2020, https://covid.joinzoe.com/post/covid-
long-term.
2 Novus, Coronastatus 0511, https://novus.se/coronastatus-0511/.
• Conjunctivitis, dry eyes, and vision issues;
• Extreme fatigue, and insomnia or difficulty sleeping;
• Gastrointestinal pain, nausea, diarrhea, and bloating.
Secondary infections such as thrush, strep, urinary tract infections, and skin infections are also common.
There are many theories as to what might be causing our ongoing symptoms, including persistent viral
infection, an immune overreaction to dead viral RNA, molecular mimicry, dysautonomia, post-viral
fatigue, the reactivation of dormant viruses within the body by COVID-19, and the onset of new illnesses
such as diabetes. However, these are all very different conditions that require differing therapeutic
approaches. Patients and doctors can’t know what the best treatment to pursue is without an adequate
understanding of the cause.
We also don’t know when it is safe for us to be around others. Medical advice in some provinces has
been to self-isolate for either fourteen days or until 24 hours or 72 hours after symptoms have resolved.
Some of us have been having symptoms without a break for months, afraid to be around our own family
members for fear of transmitting the virus to them. Others have had symptoms go away for days or
even weeks only to have them reappear again. When this happens, we don’t know whether we need to
self-isolate again to protect people around us. It is difficult mentally, emotionally, and physically to self-
isolate for months with no end in sight. We are also deeply worried about transmitting the illness to our
loved ones or our communities.
There also needs to be research into the average duration of COVID-19 symptoms in order to better
understand what recovery looks like and provide appropriate guidance to physicians, employers, and
public officials. In addition to understanding what therapeutic needs COVID-19 survivors have,
policymakers and employers need to understand how much sick time might be required to fully recover
or what kinds of accommodations and supports might need to accompany a return-to-work. Public
screening guidelines need to account for the fact that an individual might have symptoms for months,
which creates challenges for accessing medical care and other essential services.
Medical support
To ask someone to self-isolate at home and manage their own symptoms without medical support for
two weeks and for five months are two very different prospects. It is not reasonable to ask people with
such extensive physical symptoms and such a prolonged illness to go without medical support. We need
family doctors and emergency room physicians alike to have a greater awareness of the havoc this virus
is causing throughout our bodies. We need access to medical tests, in addition to symptom
management and care.
We have been trying, for months, to deal with symptoms that are often severe and scary, and that
significantly affect quality of life. Some of us continue to visit the Emergency Department with heart
issues, neurological issues, or shortness of breath months after the onset of symptoms. Some of us are
formerly fit athletes who are still unable to walk around the block or up stairs due to stabbing chest
pain, shortness of breath, and postural tachycardia months after initial illness.
Seeking medical care from personal care physicians has been challenging as many are only offering
telephone consultations. Some of us have received supportive care, but many of us have had the
experience of being told by our family doctor or a specialist that there’s nothing they can do for us
despite persistent coughing, shortness of breath, chest pain, or chronic gastrointestinal issues. As a
result, some of us have spent hundreds of dollars on supplements and alternative care practitioners
such as naturopaths to try to gain some symptom relief.
Often doctors and specialists are compassionate but admit that they simply don’t know why COVID-19
affects the body the way it does and are unable to offer any assistance.
However, many of us have also had the experience of being dismissed as having anxiety rather than
having our symptoms taken seriously. We have been told that our symptoms can’t possibly be related to
COVID-19 because:
• We didn’t meet the restrictive criteria for testing that was in place in March and April;
• We haven’t traveled internationally or been exposed to a known case;
• Some doctors don’t believe that COVID-19 illnesses persist beyond 2-6 weeks; or
• We had a negative COVID-19 test (despite the fact that the rate of false negatives is known to be
high and the risk of having a false negative increases with the amount of time that has passed
after symptom onset).
This lack of support from the medical community causes great psychological harm and stress, which can
exacerbate our physical symptoms.
Furthermore, many of us fall into a gray area of not having a positive test or a recent exposure but still
having COVID-19 symptoms. This means that many medical services and other health and wellness
appointments are not available to us. We can’t go to the dentist or get a massage. We can’t have in-
person appointments with our primary care physicians. We are in limbo, unsure if we are infectious but
unable to pass a screening questionnaire. Physicians and health care facilities, meanwhile, are struggling
to decide on a case-by-case basis whether to allow individuals with symptoms to access their services.
Presumptive diagnosis
For many reasons, access to testing was extremely limited across Canada during the early phase of the
pandemic. Many of us did not qualify for early testing. Some of us had doctors confirm that we likely
had COVID-19 but were told to stay home and manage our symptoms rather than seeking testing. Some
had to fight for several weeks to access a test, arguing that our symptoms merited a diagnosis. As a
result, many of us have never been tested.
Some of us were tested but only weeks after symptom onset. Research has shown that the timing of the
test can significantly affect the results, with the likelihood of receiving a false negative dramatically
increasing nine days after symptom onset. By Day 21, the likelihood of a false negative is 66%.3 A throat
or nasal swab also cannot determine whether the virus might be present elsewhere in the body. Despite
these limitations, doctors continue to be influenced by negative tests results in spite of the swabs having
been done weeks after symptom onset to either tell us that we never had COVID-19 or that our ongoing
symptoms can’t possibly be COVID-19 related any longer.
Similar questions are being raised about the accuracy of COVID-19 antibody tests. There is also early
research emerging which suggests that not everyone who had a COVID-19 infection develops
3
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.
antibodies.4 We are very concerned about reports from France, the UK, and the US that COVID-19
antibody tests are also being used to deny diagnosis and medical treatment to COVID-19 patients.
The accuracy of tests and the newness of the virus both argue in favour of also using a presumptive
diagnosis, rather than just testing, to identify COVID-19 patients. However, the extreme limitations that
were placed on testing in the early months of the pandemic demand that a presumptive diagnosis be
adopted. Otherwise, too many Canadians in need of medical care will be and are being excluded.
Although there is limited data so far, evidence from a comprehensive survey of long-term COVID-19
illnesses conducted by patients themselves suggests that there is no difference in the pattern of
symptoms between those who tested positive and those who tested negative or were not able to access
a test.5 Adopting a standard but comprehensive list of symptoms, in combination with factors such as a
pattern of relapse/recovery, exposure to known cases, and timing of illness onset, could result in a
presumptive diagnosis that will allow individuals to participate in research and access medical care.
In addition to access to medical care, we are concerned about the implications of not using a
presumptive diagnosis for access to sick leave and income security programs such as the Canada
Emergency Response Benefit. When employers don’t understand that COVID-19 can be a very lengthy
illness and demand a medical note; when public programs such as the CERB and Employment Insurance
require a medical note for sick leave; and when penalties are being implemented for fraud and
misrepresentation, we are very concerned that some of us can’t access a diagnosis and appropriate
medical care. This will force people back to work before they are ready, putting their long-term health at
risk and potentially putting the health and safety of others at risk.
There also needs to be acknowledgement of how many people became ill in the early weeks of the
pandemic when access to testing was extremely limited and the struggle we have waged since to obtain
a diagnosis and official recognition that our illness and ongoing symptoms are COVID-19.
Our experience
We are different ages and ethnicities, coming from different regions across the country, with different
career fields. Some of us were extremely healthy before getting sick; others had chronic health
conditions. Our symptoms have varied; some of us have been and still are seriously ill, while others are
dealing with lingering or occasional symptoms. Some of us have children and family members with
similar symptoms and ongoing health issues; others have experienced this journey alone. What we all
share in common is an extremely prolonged experience of COVID-19 symptoms and a need for answers
and medical support.
4
Payne DC, Smith-Jeffcoat SE, Nowak G, et al. SARS-CoV-2 Infections and Serologic Responses from a Sample of
U.S. Navy Service Members — USS Theodore Roosevelt, April 2020. MMWR Morb Mortal Wkly Rep 2020;69:714–
- DOI: http://dx.doi.org/10.15585/mmwr.mm6923e4
5
Patient-Led Research for COVID-19, Report: What Does COVID-19 Recovery Actually Look Like?, May 11, 2020,
https://patientresearchcovid19.com/research/report-1/.
Name Date of
Symptom
Onset
Date of
Test
(If
Applicable)
Test
Outcome
Has
Sought
Medical
Care
Received
Supportive
Medical
Care
Referred
to
Specialist
Number of
Weeks of
Symptoms
Scott H.F. December 26 May 26 Negative Yes No No 26
Donna I. February 15 March 17 Negative Yes No No 18
Michelle T. March 1 n/a n/a Yes No No 17
Kate G. March 6 n/a n/a Yes Yes/No No 16
Elisa H. March 10 May 22 Negative Yes Yes Yes 16
Ken B. March 11 n/a n/a Yes No No 16
Lianne C. March 11 March 19 Negative Yes Yes No 16
Maryam P. March 12 March 20 Negative Yes Yes/No No 16
WhiteFeather H. March 12 April 9 Negative Yes Yes/No Yes 16
Craig T. March 13 March 16 Negative Yes Yes/No Yes 16
Laurence B. March 13 April 14 Negative Yes Yes Yes 16
Jaymie F. March 15 May 3/
June 9 Negative Yes No/Yes Yes 15
Tracey T. March 15 March 18 Negative Yes No No 15
Chandra P. March 16 April 15 Negative Yes Yes Yes 15
David H. March 16 March 30/
April 20 Negative Yes No No 15
Libby K. March 16 n/a n/a Yes No No 15
Brent W. March 17 April 2 Negative Yes Yes Yes 15
Sean H. March 17 March 21 Positive Yes Yes Yes 15
Emily S. March 18 May 22 Negative Yes No/Yes No 15
Matt H. March 18 n/a n/a No No No 15
Jenn H. March 19 March 25 Positive Yes Yes Yes 15
Louise K. March 19 May 4 Negative yes No No 15
Sara H. March 19 March 25 Positive Yes Yes No 15
Stephanie Ann H. March 19 n/a n/a Yes No No 15
Renee R. March 20 April 20 Negative Yes Yes/No Yes 15
Heather H. March 21 May 21 Negative Yes Yes No 15
Karen K. March 21 n/a n/a Yes Yes Yes 15
Robertino C. March 21 March 31 Negative Yes Yes No 15
Susie G. March 21 June 2 Negative Yes No Yes 15
Emily B. March 24 March 30 Positive Yes Yes Yes 14
Michele G. March 24 April 21 Negative No No No 14
Heather W. March 25 April 21 Negative Yes Yes Yes 14
Helen A. March 26 June 5 Negative Yes Yes No 14
John B. March 27 April 10 Negative Yes No/Yes No 14
Julie M. March 28
April 7/
April 11/
May 4
Negative Yes Yes Yes 14
Nada F. March 15 March 29 Negative Yes Yes Yes 13
Adrien R. March 21 n/a n/a Yes No Yes 13
Erwin N. March 29 May 6 Negative Yes Yes Yes 13
Name Date of
Symptom
Onset
Date of
Test
(If
Applicable)
Test
Outcome
Has
Sought
Medical
Care
Received
Supportive
Medical
Care
Referred
to
Specialist
Number of
Weeks of
Symptoms
Elaine M. April 4 May 29 Negative Yes Yes Yes – 5! 13
Deanna G. March 16 April 7 Negative Yes Yes No 12
Nicolas B. March 27 June 6 Negative Yes Yes/No No 12
Chantal R. April 15 April 21 Negative Yes Yes Yes 11
Cheryl C. April 19 April 23 Positive Yes Yes No 10
Jade D. April 23 April 25 Positive Yes Yes No 10
Helen F. April 30 May 1 Positive No No No 8
Michele P. May 1 May 4 Negative Yes No No 8
We ask you to urgently address these concerns: to commence research into long-term COVID-19
illnesses, to ensure that medical support and care are provided to those who are experiencing COVID-19
symptoms for many weeks, and to implement standards for a presumptive diagnosis of COVID-19 for
patients without a positive test.
Thank you for your attention and support, as well as all of the hard work you are doing to guide Canada
through this unprecedented public health situation. If we can assist you in any way, please know that we
are ready and willing to do so. You can contact us at LongHaulCovidCanada@gmail.com.
Sincerely,
Adrien Robertson Heather Howey Louise Kelaher
Amanda MacKay Heather Welch Maryam Patel
Amy Bronson Helen Abbott Matt Helleman
Brenda Peters Helen Feng Michele Girash
Brent Williams Jade Dominica Clark Michele Pomerant
Chandra Pasma Jaymie Firkus Michelle Taylor
Chantal Renaud Jenn Hart Nada Forbes
Cheryl Clark John Baker Nicholas Bean
Craig Tomkow Julie Mathieu Renee Reusz
David Hardisty Julie Skuse Robertino Cosentini
Deanna Garton Karen Kilba Sara Handrigan
Donna Ingratta Kate Gilmour Scott Harrison Ferrari
Dwayne Pereira Ken Borg Sean Hoskin
Elaine McCartney Laurence Boccaccio Stephanie Ann Hayne
Elisa Harvey-LaPlante Lianne Chu Susie Goulding
Emily Bodechon Libby Kennedy Tracey Thompson
Emily Shepard Lorraine Knourek WhiteFeather Hunter
