In the summer of 2020, Tariq Scott was in the streets of Philadelphia protesting the killing of George Floyd. The winter and spring had been hard; the restaurant in Old City where he’d been a server was shuttered due to the pandemic and his income, supplemented by the graphic design career he’d been nurturing, had dwindled to almost nothing.
“I actually felt energized for the first time when I was in those protests,” said Scott, who had attended with a group of college friends. “As terrible as the circumstances were, it felt like I was re-entering my life. This was who I was — a Black gay man defending all my communities against white supremacist extrajudicial killing of and disrespect for Black bodies and Black lives.”
By autumn 2020, Scott was back at work and was dating someone new. He was doing some collaborative design work with friends. “Life was back to normal,” he said. “It was a good time for me.”
But in early January 2021, after the New Year, Scott was suddenly sick with what he thought was the same flu his boyfriend had. “I was a strict masker. My mom has diabetes and my grandma, who lives with her, has asthma and diabetes. I was there checking on them all the time; I needed to keep them safe.”
COVID landed Scott in Jefferson Hospital for several days on supplemental oxygen and other treatments. When he was released, he was weak and shaky. His boyfriend and others took care of him at his apartment, but “I wasn’t getting better. It was a whole month after I got out of the hospital when my boyfriend took me back to the ER because my heart was just racing. I was admitted for tests, and that’s when they explained to me that I had this syndrome — Long COVID.”
Dr. Tom Frieden was Director of the Centers for Disease Control and Prevention (CDC) during the Obama administration and was also the former health commissioner of New York City. Frieden has sounded the alarm on Long COVID, noting on Twitter, “Estimates suggest 10-30% or more of people who get infected with Covid develop long-term symptoms. We’re continuing to learn more about Long COVID, but there’s still a lot we don’t know about the condition and how to help people who are suffering.”
Long COVID (also known as post-COVID conditions) is a wide range of new, returning or ongoing health problems people may experience more than four weeks after being first infected. Even people who did not have any symptoms can experience Long COVID, which can present as different types and combinations of health problems and can range in lengths of time, according to the CDC. Last month the American Medical Association (AMA) published “What doctors wish patients knew about Long COVID.”
Scott is still sick. So are Taryn Talley, a design engineer, and Michael Thomas Ford, a well-known gay writer and young adult novelist.
Nia Diamond, 37, is the stay-at-home mother of three and a consultant for small businesses. The Mount Airy native contracted COVID “sometime around the holidays. I wasn’t really sick until the day after New Year’s when I literally collapsed in the bathroom.”
Diamond’s doctor said she had “skipped right past COVID to Long COVID. I never had COVID symptoms. I didn’t even know I was asymptomatically infected.”
Both Diamond and her partner Aliyah were fully vaccinated, as are their nine and six year old sons. But their youngest, who is four and in pre-school, got sick right before the holidays. “She had a temperature and a cough. We all tested and everyone was negative but her, so we put her in her room, sent the other kids to my mom’s over the school break and stayed quarantined until she was better, which was only a few days.”
There was a lag of about 10 days between her daughter’s illness and Diamond’s sudden collapse. She has not recovered. She has heart palpitations, shortness of breath, fatigue, pain and brain fog. She hasn’t been able to work at all this year. Diamond said, “I used to be the at-home mom while Ali went out to work. I was here working at home and here for our kids. Now I am like a ghost. I am not the mom I was or want to be. I am just that sick person laying on the couch barely able to read a bedtime story.”
Diamond’s mother has been helping the couple care for the kids and the house so Aliyah can continue to work. “But they can’t tell me when I will be better. Or even if I will be better. I cry a lot,” said Diamond.
Scott, who had to give up his apartment and move into his mother’s home in Nicetown, said, “I was never that guy who got depressed. I was just lucky that way. Now, I can’t believe this has happened to me. I am seeing a therapist through telehealth because right now I can’t travel on my own; I am too weak. It’s just unreal, you know? Like how did I get here?”
Dr. Jennie Goldenberg is a therapist and social worker who specializes in trauma. She told PGN that the pandemic “has affected almost all of us with high levels of stress and anxiety. The grief from the loss of loved ones and community members, the isolation, long separations from friends and family, and the loss of income have taken a huge toll.”
She said that in her own clinical practice she’s seen anxiety and depression levels increase and become “exacerbated by the isolation and the financial stress and uncertainty the pandemic has caused. In addition, the symptoms in people already struggling with OCD, PTSD, complex PTSD, and the dissociative disorders have increased significantly.”
Goldenberg explained that “For those people who actually contract COVID, and in particular the percentage of folks who then struggle with the sequelae of Long COVID, their sense of personal vulnerability and stigmatization is reinforced. Unable to work, function, or even think the way they used to in their personal and work lives, their often already compromised sense of self-esteem is undermined as they wonder when they will ever get back to ‘normal.’”
Goldenberg advises people with Long COVID to be gentle with themselves. “For my clients who berate themselves for not being able to function as well as they used to before COVID, I stress this mantra: “No one is doing stellar work now. Every little task you are able to accomplish in a day needs to be reframed as a big win. Try to direct compassion and love towards yourself, your mind and body, just as you would to a dear friend or loved one.”
Dr. Abdul El-Sayed is the former executive director of the Detroit Health Department and Health Officer for the City of Detroit and an assistant professor in the Department of Epidemiology at Columbia University. On April 26, El-Sayed wrote a piece on Substack: “COVID isn’t over. At least not for me… or thousands of other people. I tested positive on Sunday — it hit me like a truck. Here’s what it taught me about this moment in the pandemic.”
El-Sayed, who also does health commentary for CNN, said, “I worry right now that the Zeitgeist of this moment has lulled too many of us into a false sense of security… What we’re left with is a self-reinforcing set of beliefs and behaviors that have interpreted the pandemic risks right down to zero.”
For people with Long COVID, like Diamond, Ford, Scott and Talley, the future is a question mark with no corresponding sense of security.
Ford said that he thinks there will be more Long COVID. “I don’t think it helps that the official messages we’re getting are so unclear and constantly changing. I get that we all want this to be over, but I don’t think it will ever be completely over. And I think we’re just starting to discover how the long-term effects will impact some of us physically and mentally.”
Dr. Esther Choo, an emergency physician, has reported from the COVID front on Twitter throughout the pandemic. In a piece for The BMJ, she wrote, “The single worst stressor on healthcare workers is the gap between what their patients need and what they can deliver. The COVID-19 pandemic is making this divide wider than ever.”
Choo has reason to be concerned. On PBS NewsHour on April 26, Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases and the Chief Medical Advisor to the President, told anchor Judy Woodruff that “the U.S. is out of the pandemic phase” right now, with cases and hospitalizations exponentially lower than even a month ago.
These comments don’t just signal Fauci’s opinion as an infectious disease specialist — they reflect the political position of the Biden administration which has, despite Vice President Harris testing positive for COVID on April 26, adopted a post-pandemic attitude in all things.
The Public Health Emergency (PHE) declaration is set to expire on July 15. If the Biden administration allows that to happen, it could lead to a massive wave of Medicaid disenrollments, which would impact millions with Long COVID. There has been no discussion about renewing that, and Biden has put the task of designating more money for COVID on Congress.
Talley said it’s essential that people with Long COVID talk publicly as much as they can about their experience and the need for protocols and research. She said, “This is a fight for me. Talking to you is like saving my own life.”
She added, “We’re bringing light into a dark area, light at the end of the tunnel. Maybe we have to make our own light.”
For information on treatment for Long COVID and post-COVID care in the Philadelphia area, contact the Post-COVID Assessment and Recovery Clinic at Penn Medicine at 215-893-2668. You can download the Post-COVID Assessment and Recovery Clinic information sheet (PDF) on their website.