For almost a year, I have shared the daily life of my partner who has long-term COVID. I had COVID-19 twice, but without developing this syndrome. However, I was directly affected as a caregiver.
My life as a couple has been transformed. Our relationship deepened. I admire and love my partner more than ever for her courage and resilience, but it is difficult not to feel isolated from the rest of the population, who continue to live as if COVID-19 were nothing more than a simple cold with no consequences for healthy people.
Earlier this year, I was limited in my movement following minor surgery. I was then placed in a position of vulnerability which allowed me to better understand the devastating effects of long-term COVID on my partner. A year after infection, she is very far from returning to work, even if her situation is improving very slowly. Considering the new wave of COVID-19, I live in fear of catching it again, giving it to him and making his already precarious condition worse. I fear more than anything of developing, like her, a post-COVID syndrome.
I have the impression of living with my partner in a parallel world. I walk everywhere with my N95 surgical mask to avoid catching COVID-19. I also teach with this one. I have no choice: almost no one wears a mask anymore, whether at the grocery store or at the theater. I therefore tend to go out as little as possible and focus on myself and my partner.
What is long-term COVID? According to the National Institute of Public Health of Quebec (INSPQ), it consists of the persistence of symptoms more than three months after infection. The most common symptoms include persistent fatigue, cognitive difficulties (“brain fog”), and an intensification of symptoms after previously well-tolerated exercise. This post-COVID syndrome is associated with around 200 symptoms affecting at least 10 organs, including the brain, heart, lungs and blood vessels.
For my partner, long-term COVID means being in bed for more than 16 hours a day, being unable to cook, listen to television, radio or walk to the corner. She also has great difficulty reading and writing. She is not able to attend family dinners and many other things. The bad news is that there is no effective treatment to cure this syndrome and many people with long-term COVID may never regain quality of life and adequate functioning.
She is not a unique case. The prevalence of long-term COVID is higher than people might imagine.
The DD Sara Carazo, from the INSPQ, carried out a large epidemiological study (23,000 people) on the effects of this syndrome on health workers in Quebec. In the study, 10% of them still had symptoms 12 weeks after infection, and 5% more than a year after infection. Note also that approximately 3% had severe symptoms which generally made them unfit to hold a full-time job. Comparable results exist for the general population. Note also that a significant proportion of these people, including my partner, were in very good physical shape and did not have risk factors that predisposed them to developing this syndrome.
A real risk
Long-term COVID, people say it’s for others. However, during each new wave of contamination, we can expect that around 10% of infected people will develop it.
Can we blame the carelessness of the population? Who talks about this syndrome? For example, the Dr Luc Boileau, Quebec’s national director of public health, made no mention of it during his press conference on September 28. What’s more, he did not recommend that healthy people, who can carry the virus without being symptomatic, wear a mask preventively in order to reduce the number of infections.
Today, the risk of developing long-term COVID is much higher than the risk of being hospitalized with COVID-19 infection before the arrival of vaccines, in a generally younger population and in health. The Dr Boileau insisted, rightly, that vulnerable people be vaccinated again. Why not take advantage of the moment to also discuss the risk of post-COVID syndrome in order to encourage the entire population to update their vaccination? According to the DD Emilia Falcone, researcher specializing in long-term COVID, some studies mention that up-to-date vaccination reduces the risk.
The best way to avoid it, however, is not to catch COVID-19 and to wear a mask regularly. Can we, as a society, find ways to slow the number of new people who develop long-term COVID? When will there be a universal program for people without insurance? We should also ensure that complete teams of professionals, including doctors, are present in all long-term COVID clinics in Quebec, which is not currently the case.
It is time for our decision-makers to come out of denial about post-COVID syndrome, for all those who suffer from it.