This the second installment of a three part series.
Since the end of 2019, when COVID-19 was first designated a pandemic by the World Health Organization (WHO) as a disease with global impact, there have been 84 million cases of COVID-19 in the U.S. and 988 thousand deaths.
According to all available data thus far, at least 20% of people who get the virus will get Long COVID, but most studies put the numbers higher — at closer to 30%. That means between 17 and 25 million Americans are now suffering from Long COVID, and the numbers are only going to get higher.
Long COVID is a mass disabling event — people with the illness wish that it made more headlines.
As COVID is a pandemic, Long COVID is a secondary, shadow pandemic, but also one which has yet to make the kind of news or create the kind of action from research scientists, healthcare leaders, Dr. Anthony Fauci, CDC Director Dr. Rochelle Walensky, U.S. Surgeon General Dr. Vivek Murthy, HHS Secretary Xavier Becerra or the Biden White House that the Long COVID numbers demand.
Long COVID is a post-COVID syndrome with many of the characteristics of the initial illness as well as others. Long COVID is defined by debilitating fatigue, disorienting brain fog and often crushing pain. Shortness of breath, a lingering cough, chest pain, joint pain and heart palpitations are common.
These long-haul symptoms can last for months and longer, even if the patient had a mild case, according to recent studies.
New research shows that more and more young people who had mild cases of COVID-19 are getting long COVID. “Everyone is at risk for chronic long-haul syndrome,” said Dr. Lisa Merritt, Executive Director of the Multicultural Health Institute, told ABC Action News.
Philadelphia Health Commissioner Dr. Cheryl Bettigole told PGN, “While we know that most people in Philadelphia have been vaccinated against COVID-19, lower rates of vaccination and lower booster rates among Black city residents mean that some members of our community are not yet fully protected, not only against severe complications, but also against Long COVID.”
Bettigole, who has gotten flak for reinstating the indoor mask mandate in the city as new cases have begun to climb, said, “While Long COVID is not yet fully understood, we do know that COVID-19 vaccinations protect against the prolonged fatigue, shortness of breath, brain fog and other symptoms that can linger for months after even a mild COVID-19 infection.”
She urged Philadelphians to get vaccinated and tested.
When Congresswoman Alexandria Ocasio-Cortez got COVID in January, despite being vaccinated and boosted, she posted about her illness on Instagram and Twitter to her 12.9 million followers. She detailed her mild symptoms, but added, “For a while, I’ve noted the term ‘mild’ is misleading when the bar is hospitalization and death. Even ‘mild’ cases can result in Long COVID, which includes a range of conditions like cognitive impairment, POTS [postural orthostatic tachycardia syndrome] and chronic fatigue.”
A patient’s age, prior health or severity of their COVID-19 case does not appear to be a factor in who gets the disease. Women and people 20 to 50 seem hardest hit, although Queen Elizabeth II, who just turned 96. has revealed her own Long COVID symptoms. Prince Charles, 73, who initially said he’d only had a mild case, also has now revealed his Long COVID symptoms.
If people like Queen Elizabeth (who has every treatment option at her disposal) aren’t protected from Long COVID, who is?
Not Tariq Scott, 25, an artist who works as a waiter in Old City; Taryn Talley, 44, a design engineer; or Michael Thomas Ford, 53, a writer. All of these people fell ill with COVID and then lapsed into Long COVID. They were eager to share their experiences for this series to highlight the illness and how it has altered their lives.
All these people got COVID despite their best efforts at prevention. Talley said she spent the first half of 2020 “meticulously masking” and avoiding situations where she might get COVID. But during a trip to Texas with her mother to see her elderly grandfather in June 2020, she got sick. A family member who had not been masking, unknowingly infected the family. Talley’s grandfather died of the virus within weeks.
Flying home from Texas, Talley said, “I thought I got a cold. By the time I got home, I was like the guy in the Outbreak movie. I got sicker and sicker.”
That was in July 2020. She never got better. Talley developed Long COVID and her wife, Erika, who caught COVID from her, has also had lingering illness. Long COVID has, said Talley, “Made me a non-participant in my own life.”
Talley, who has had a headache or migraine ever since she got sick said Long COVID is like “the worst hangover, 24/7.”
She is being treated for the migraines, for vertigo, and for post-viral asthma. “I don’t feel any better. But I can walk across the room now without coughing.”
This, Talley says, was not the life she expected to have at only 44. And it’s not the life she wanted for Erika, or for them as a couple. “I have the best wife,” she says. It’s a statement full of pain and longing for the life the two had before Long COVID derailed the full, active, and vibrant life that used to be there.
Michael Thomas Ford is one of those writers who is so prolific, he makes other writers wonder if they are doing something wrong. The author of over 75 books, Ford is known for both his gay adult work, like the “Trials of My Queer Life” series and his young adult and children’s books, like “Suicide Notes, Z” and “Love & Other Curses.”
In an interview with PGN, Ford said, “My partner works in healthcare with a very at-risk population, so we knew we’d get it at some point, and got vaccinated as early as we could. I think that helped prevent it from being worse.”
In November 2021 Ford says, “I had what felt like a bad flu for about a week. But the ongoing effects have lasted for almost five months now.”
Like Talley and Scott, Ford said, “At first the general symptom was complete exhaustion. I would wake up feeling more or less okay, but by noon I would be so tired I couldn’t do anything. Everything was a struggle. Even something simple like doing laundry or taking a shower felt like a monumental chore.”
But for Ford the writer, “The worst, though, was the brain fog. It was virtually impossible to concentrate. Then I started forgetting things, like appointments and deadlines, which I have never done. I couldn’t remember what day it was. Also, remembering people’s names was a challenge. When writing emails, I often had to stop and think, ‘Okay. I know this person. I write to them regularly. But is it Anne? Anna? Andrea?’”
Ford said the brain fog was very unnerving. “My mother had Alzheimer’s, and at first I worried that I was experiencing early symptoms of that. But I eventually came to suspect it was all related to COVID, especially as I read more and more accounts of people with similar experiences.”
These experiences, along with the concomitant anxiety and depression, can be devastating. Judy Morrissey, Director of Behavioral Health for the Mazzoni Center, said, “Chronic illness affects not only a person’s physical health but their mental health too, with higher rates of depression and anxiety.”
She said, “Health-related anxiety, especially about the unknown — what’s happening to one’s body and where it will lead — are quite common concerns for people with chronic illness. The emotional drain of constant worry can make it exponentially more difficult to manage and cope.”
Dr. Jill Roberts, Associate Professor for the USF College of Public Health, has concerns about those who think they are immune from serious illness and that Long COVID won’t impact them. Roberts said, “I want people to know it’s real. These are young people. People in their 20s who are reporting brain fog. They’re showing cognitive decline that you see in people who are 70.”
Roberts continued, “So it’s not something to mess around with. You don’t just get COVID and get over it. That’s an incredibly dangerous course to attempt.”
As Tariq Scott said, “No one expects to put their life on hold like this, to wake up every morning wondering if you will ever be the person you were pre-COVID. That’s a half-life, not a life. That’s hard to get your head around. What if this is how it is forever?”
Next week: How people with Long COVID are coping and creating activist communities to find treatment and cures for the disease.
For information on COVID-19 testing sites in Philadelphia as well as free vaccines: https://www.phila.gov/covid-testing-sites/