In October 2021, I began working as a COVID tester in a college in Toronto. I tested students who were immunologically compromised or who had refused the vaccine. Sometimes, while we waited the 15 minutes to pass for results, students made conversation with me.
One young woman told me she believed that Canada was becoming a dictatorship for requiring COVID vaccines to enter schools, planes or workplaces. She knew someone who got pericarditis after receiving the vaccine, and to expect citizens to get the COVID vaccine was essentially fascistic, she said.
“Wouldn’t you agree?” she asked me.
What I also tried to explain was the inevitable fact that getting a treatable pericarditis is significantly safer than infection with the COVID virus, which can devastate a person’s cardiovascular system, causing reduced blood flow, arrhythmia, cardiomyopathy, myocardial infarction (otherwise known as a heart attack), heart failure, cardiogenic shock and even cardiac arrest.
The student responded by telling me that she had never heard of anyone getting such a heart condition and that the virus was actually similar to the flu.
Such conversations were not out of the ordinary, and perfectly demonstrate the mentality that continues to perpetuate the behind-the-scenes suffering of those with long COVID. Unfortunately, many people simply still do not fully comprehend the ramifications and extent to which COVID has devastated public health.
The Reality of Long-Hauling
Not only has the sheer volume of the COVID cases in the pandemic been far worse than most people expected, but the infection’s symptoms have been devastating, often lingering and causing debilitating long-term effects. Long COVID or “postacute sequelae of COVID-19” (PASC) is the long-term persistence of COVID symptoms for months or even years. There have been over 765 million confirmed COVID cases worldwide, according to the World Health Organization; based on estimates from a 237 million-person sample, the WHO estimated around 100 million long COVID cases – a rate of about 43%, though 2022 reports calculated the percentage of long COVID as closer to 30% of cases. In December 2022, the Lancet pooled results from 194 studies, looking at a total of over 735,000 studies, and determined the global prevalence of PASC at 4 months to be approximately 45%.
According to a 2022 Statistics Canada report, about 15% of COVID patients, or 1.4 million Canadians, indicated that they developed long COVID, of which 47% had symptoms lasting over 1 year and 74% missed significant periods of work or school. A Public Health Ontario (PHO) study released in 2022 found a prevalence of long COVID ranging from 51-80% in the province.
In the US, the numbers may vary slightly but remain alarming; for example, in a 2023 peer-reviewed study, researchers at a Washington, D.C. university followed 1,338 students with COVID and found that about 36% developed PASC. As of August 2022, about 16 million working Americans had long COVID, of which approximately 2–4 million had to leave the workforce. Despite these alarming numbers, many long-haulers throughout the world believe that their governments are failing them. In Canada, approximately 60% of long-haulers believe that the federal government has ignored the persisting syndrome. This sentiment persists globally; in an organization called Long COVID Switzerland, activists stated that they have been “left to rot.” Advocates in the US have also called long COVID a “mass-disabling event.” In Wuhan, China, where approximately 55% of COVID patients still have symptoms 2 years later, scientists are urging government officials to offer support and avoid a “national crisis.”
In reality, long COVID should worry you. Long COVID patients face many uncertainties; almost anyone can get it and there is no standard set of symptoms – instead, “long COVID” is a medical umbrella term, similar to cancer. Long COVID is therefore branched into several different subtypes of multi-organ conditions that often leave some people fatigued and vulnerable to other illnesses or infections.
On the other hand, we are left with a few questions.
How can the people who suffer from long COVID hope to recover?
Why are governments and many workplaces ignoring the global onset of a health phenomenon that many scientists still don’t fully understand?
How can long-haulers continue to live a fulfilling life when they are unable to perform many everyday activities including schooling and working?
What Is It Like to Live With Long COVID?
In a past article, I delved into the biological mechanisms that are hypothesized to contribute to and cause long COVID. Here, I further explore what it means to live with long COVID through an interview with an artist named Joey Borrelli, who has been living with long COVID since 2020. His comics published online garnered thousands of retweets and messages of support.
For those who have not seen your art, what is your story?
As a first-year college student in a big city, I got COVID as soon as it hit the U.S. in February 2020. When I was sick, it felt like a normal fever or stomach bug, but it did not go away for four weeks (and, of course, many things never went away). I experienced muted taste and smell (which I attributed to a stuffy nose, as no one knew I had had COVID). I had continuous extreme diarrhea afterwards, and the fatigue of sickness never left. On May 15th, 2020, I tried to eat a pizza, and it was repulsive. The last three years have been the same for all foods, as my olfactory nerves grew back wrong after being destroyed by COVID. Everything smells and tastes unbearably awful – a condition called parosmia. I am indescribably fatigued and have fainting spells and issues with a racing heart. There does not seem to be a solution for my condition.
The SARS-CoV-2 virus can enter multiple different types of tissues including cells in the nasal lining, causing inflammatory responses to the surrounding cells including olfactory nerves. This can destroy one’s sense of smell for several months – and although the olfactory nerves can regrow, the process isn’t exactly accurate. The human sense of smell relies on a combination of 350 smell receptor types, which, if wired incorrectly or incompletely, could distort the chemical signals that the brain perceives, leading to a disgusting and nauseating sensation.
The prevalence of parosmia in long COVID has been variable. One study reports that it occurs in about 10% of cases while the University of Utah states that it may be as high as 25–75%. Another 2020 peer-reviewed study found that its prevalence ranges from 33.9–68%, and a more recent 2022 peer-reviewed study observed parosmia in 65.7% of COVID patients up to 4 months after infection. Another 2022 study found that amongst 148 long COVID patients, parosmia emerged over 1 month after initial infection, with parosmic patients reporting a significantly decreased quality of life. Thus, olfactory dysfunction is strongly linked with COVID infection and has debilitating effects on a person’s everyday living.
What was the journey like when you first got COVID? You mention in your comic that doctors initially were dismissive of your illness. How were you finally able to obtain that diagnosis of COVID?
I ended up going to doctors in three different states before one took me seriously. First, the doctor at my school dismissed me, said it was the flu, and told me to go home (even though COVID had been reported on campus and the school was shutting down). I was sent back to my home city in a Republican-controlled state, where my primary care provider wondered if I was experiencing post-COVID symptoms, but told me that I would never be able to receive the care I needed in-state (or even an antibody test, as fake clinics were popping up everywhere). In summer 2020, I ended up moving cross-country with my partner to receive the medical care I needed, and for the first time, a doctor tested me for COVID antibodies (which came back positive). It took months to see subsequent specialists, who confirmed my symptoms were due to COVID, but they could not offer any help in alleviating them.
When you were finally diagnosed, how did doctors approach your treatment? Did their approach appear to change with time?
There has never been a treatment plan, and doctors did not and do not know how to treat me. As the years go on, doctors at least have become slightly more aware of the existence of long COVID, but they by and large do not know what to do for me. I am typing this in a hotel room after traveling cross-country to a long COVID specialist, who is the first person in three years to help and hope to craft a plan to alleviate my most pressing symptoms.
Can you tell us a bit more about your journey with long COVID? Have the symptoms worsened or remained relatively stable?
As far as my smell and taste issues, the symptoms have remained relatively stable, which is extremely difficult to deal with. I would love to be able to enjoy food again. Other things, such as my fatigue and heart issues, have worsened. Even after knowing I had had COVID, no doctor told me to rest or not push my body, which resulted in worsened fatigue.
Many long COVID patients describe needing a longer time to recover from the fatigue of doing regular activities like exercise or tasks that require attention. Do you experience this effect as well? Do you feel that there is enough clinical support for patients who suffer from this?
Yes, I absolutely suffer from fatigue and post-exertional malaise. No, there is not enough clinical support for patients who suffer from this. As a young person (I am currently 22 and contracted COVID at 19), doctors do not believe that I am suffering and largely think I am not trying hard enough. I have also recently gained weight, which doctors have pointed to as the cause of my fatigue, which just is not true. I’m so thankful that I have been able to gain back 15 pounds after losing so much weight due to not being able to eat due to parosmia. I continue to be a skinny person, but the fatphobia in medical spaces is unbelievable and affects us all. I can’t ride a bike without blacking out, and they are telling me it is because I gained 15 pounds.
You have mentioned trying smell therapy. How has it influenced your experience with parosmia? What other suggestions have doctors made from a medical standpoint to treat your long COVID symptoms?
I did smell therapy twice a day every day for two years before giving up because it was not working. From my understanding, smell therapy is more targeted towards anosmia — a complete lack of taste and smell. While it can be helpful for parosmia, it is not as optimal as it is for anosmia. Smell therapy has unfortunately not helped me whatsoever. Just yesterday, however, I received a stellate ganglion block from a specialist that I flew cross-country for. This block — a shot of anesthetic to the stellate nerves on either side of my neck — resets the nervous system, and has been the only helpful thing for many sufferers of parosmia (which is a result of nervous system dysfunction). On day two, I can tolerate smells that used to be unbearable, which is the most progress I’ve had in three years. I will now have to continue a sort of smell therapy — and other exercises to stimulate my nervous system — to try to work towards some recovery with my smell and taste.
Update (May, 2023): Joey reached out adding, “the stellate ganglion block I received at the beginning of March (and my subsequent exercises) still have not alleviated parosmia.”
The presence of the SARS-CoV-2 virus produces a systemic inflammation in the body which increases our sympathetic nervous system, otherwise known as the fight-or-flight response, in a positive feedback loop which can disrupt the autonomous nervous system. Doctors can target the sympathetic response through the stellate ganglion, which is a collection of nerve bodies near the neck and first rib that typically control the face and arm. Doctors locate it typically through an ultrasound, and inject a stellate ganglion block which will subsequently reset the olfactory system. This technique shows great promise for long COVID patients and there are currently clinical trials investigating it further.
You have also experienced a significant impact on your personal life; in your comic, you describe being unable to leave home because you are constantly experiencing sickness. Understandably, many long COVID patients may also feel hesitant to leave their home because they are at a higher risk of reinfection and experiencing more severe adverse effects and health complications if they are reinfected. How much does the pressure to stay home affect your day-to-day life, including your work, study, hobbies and personal life?
Having long COVID has completely uprooted my life from both a health and social point of view. As far as health, I really struggle to walk or be upright for long periods of time, and I have almost constant diarrhea, all of which makes leaving the house quite difficult.
From a social perspective, I’m basically confined to my apartment because I cannot risk re-infection in my state. I am finishing my last semester of college online, much to the displeasure of my university, because they removed all COVID precautions, and also because of my recent fainting spells. I cannot go anywhere safely because of mask mandate removals, lack of vaccination requirements, etc. Everyone is pretending COVID is over, which it objectively is not as hundreds of Americans continue to be infected every day, and people like me have lost their whole lives due to the long-term symptoms. Even my family members and many loved ones who have intimately seen the depth of my suffering no longer care. It really weighs on my mental health. I was so excited for college, but I have completely lost all of it (my first year was the 2019-2020 school year — I literally had one semester before everything fell apart). I do not have any friends in my city or at school because of my isolation. I can’t join clubs or social groups because they do not care about protecting disabled and immunocompromised people like me. My depression is through the roof. I’m living in a bizarre world where I am directly feeling the horrible consequences of others’ actions while they pretend as though it does not exist.
I was actually re-infected with COVID in summer 2022, and that is what caused my heart issues and fainting spells. I was completely isolating at the time other than getting groceries, which I unfortunately [needed]. This virus will mess you up in ways the average person does not even know is possible, which is a complete failure in public health messaging.
You received a massive supportive response when you shared your comic online. What types of responses did you see?
I have received thousands of responses from other long COVID sufferers or loved ones of sufferers. Each and every one is a valuable and impactful story, and even reading just one person’s experience should be enough for people to care about us. All of these thousands of responses together, though, creates an archive of grief that is so deep and profound it is almost unbearable. There are millions of us suffering right now while the world pretends we do not exist. It’s heartbreaking.
What are some nonmedical changes you’d like to see in terms of how our society views COVID and treats COVID patients?
Governmental recognition is a necessity. People need to know that long COVID exists, and that COVID is not a virus that you want to get — especially not multiple times. We have had a complete public health failure when it comes to COVID. We should not be letting people be re-infected over and over again and become more and more disabled until they die. If we want to “learn to live with” COVID, that means implementing the proper protections and making sure we all stay healthy and safe. Similarly, we need to approach COVID differently at a social level. The PAN in PANdemic means that we are all affected, so this is not a “I choose my own risk” sort of thing. I would love to see people care about their community by practicing safety for those who will never be safe. There also needs to be a complete overhaul of the U.S. medical system to properly treat long COVID.
What are some of the biggest things you’ve learned or observed throughout your journey?
I think all of this has revealed how deeply nonfunctional the U.S. is, and how we really cannot continue in the way that we are. It is vital to care about those around you, but I see now that many people do not.
Have you ever spoken with any newspapers, sites, or other media about your experience with long COVID before? How would you describe that experience?
Yes! Last year I was interviewed by the podcast ReplyAll, which was not a good experience. They seemed really interested in the performance aspect of my long COVID treatments. They didn’t end up using my clip because they said it didn’t fit the theme because it was too sad and I didn’t recover. They told me to reach out to them when I got better. I wrote back telling them that most people with long COVID and other chronic illnesses would never recover, and they never responded. That is not truthful journalism.
How do you envision long COVID affecting you in the future?
I do not know what my future looks like right now, and that is because of COVID. I do not see acute COVID infections or my long COVID going away any time soon.
How do you stay resilient and hopeful while you experience uncertainty and struggle with long COVID?
I do not know. I want to live, so that is why I keep going. We have the ability to create a world that is accessible and wonderful for all people, and I want to see that happen.
News personalities like Tucker Carlson have called for news media to stop talking about COVID-19 because it’s too “boring.” However, scientists and healthcare providers are urging everyone to continue vigilantly monitoring our health and potential exposures. And we should continue to empower, treat and support our friends, loved ones and acquaintances who have long COVID. Now more than ever, it is important to show compassion to our community members, especially as this infectious virus continues to spread, whether we like it or not.