This article has been updated since it first appeared in print.
Illustration via Getty Images
My name is Kari, and I’m a COVID-19 long-hauler. If that phrase means nothing to you, I can explain. It means that COVID-19 has affected my daily life drastically. It means that recovering from the disease sometimes feels like a part-time job. It means that questions about my health often have no good answers. And I am not alone.
COVID-19 has dominated household conversation, the news media and our lives in general since early 2020. According to the Virginia Department of Health, as of Jan. 3 there have been more than 1.16 million cases of COVID-19 in the commonwealth, resulting in 42,835 hospitalizations and claiming 15,615 lives.
Since numbers were first released on the VDH website in February 2020, there have been two surges — one around January 2021 and another (caused by the delta variant) that peaked in September 2021. The omicron variant that emerged in November has fueled fears of another potential wave, but for many, life has slowly returned to normal, though few are completely unscathed.
However, for one group, life has definitely not returned to normal — or at least the way it was pre-pandemic. Those still battling ongoing issues months after testing positive for COVID-19 may feel like it never will. This condition is called long COVID-19, or acute post-COVID syndrome, and patients who suffer this condition are often called “long-haulers.”
According to the U.S. Centers for Disease Control and Prevention, long COVID-19 is a term used to describe the long-term symptoms that might be experienced weeks to months after primary infection with the virus that causes COVID-19. The World Health Organization says it may occur three months after initial infection; symptoms may last two or more months and “cannot be explained by an alternative diagnosis. Common long COVID-19 symptoms include fatigue, shortness of breath and cognitive dysfunction (brain fog).
Cherud Wilkerson (Photo by Jay Paul)
Glen Allen resident Cherud Wilkerson shared his experience with COVID-19 in Richmond magazine’s October 2020 issue. After testing positive in March 2020, the Glen Allen resident was admitted to Bon Secours St. Mary’s Hospital with a temperature of 105 degrees. Put on a ventilator within 24 hours of being admitted, he was in the hospital for three weeks. He says he has recovered fully. “I didn’t have any lingering physical effects — not even shortness of breath,” he says. “I was riding my bike by June. I’m able to do everything I want to do.”
But long-term COVID-19 effects are not just physical.
Wilkerson says that his experience with COVID-19 has impacted him emotionally even more than his time as a combat veteran. “It’s definitely the mental part that at times will break me down,” he shares.
There are serious emotional and mental impacts from COVID-19. Many who dealt with the infection feel anxiety as restrictions are lifted and life awkwardly returns to “normal.” Depression may creep in, and some fear that they will be unable to work or maintain their standards of living.
Lara Sharp Finnie, a Richmond-based counselor and therapist, says that COVID-19 led to an influx of teen and adult patients suffering from anxiety, depression and even suicidal ideation. She also points out that one additional emotional response to the disease and its ongoing effects is anger. “Since we don’t know why some have a more difficult strain or a longer-lasting case than others, anger is an understandable response,” she says. This resonates with those who have long COVID-19, as many express frustration when hearing of patients who “didn’t even know they were sick” or who downplay the disease and its outcomes.
“Not one week goes by that I don’t think about what has happened and the things we take for granted.” —Cherud Wilkerson
National Public Radio in late September reported on a study led by researchers at the United Kingdom’s University of Oxford that found about 36% of people diagnosed with COVID-19 continued to experience symptoms three months to half a year after their initial diagnosis.
“As we start to get more information and become more aware of long COVID-19, we will probably see that number increase,” says Dr. Jessica Hupe, medical director of multispecialty rehabilitation at Sheltering Arms Institute and associate program director for physical medicine at VCU School of Medicine.
Millions of patients seeking treatment for these new conditions translates into a national crisis that impacts an already overwhelmed medical system. If you have tried to make an appointment with a specialist, you may have experienced extensive delays or limited availability of appointment times.
For me, the journey has already lasted a year. Before having COVID-19, I was a busy homesteader, managing a farm while raising two children. After two months of being bedridden from my initial diagnosis, I began to function again on a limited basis. Now my heart races after just five minutes of walking. My VO2 max (the maximum oxygen your body can utilize during exercise) is nearly half of what it should be — despite a 60-day exercise therapy program to improve it. I suffer from heart palpitations, difficulty and pain breathing, issues with swallowing, a struggle to focus and extreme fatigue.
Recent tests revealed numbers that indicate a high rheumatoid factor, but I am still awaiting a new-patient rheumatology appointment. My medical appointments involve a maddening litany of “we’re not sure,” “the data just isn’t there yet” and the ever-popular “acute post-COVID syndrome” diagnosis from pulmonologists, cardiologists, neurologists, ER doctors, sleep specialists and primary care.
Every post-COVID-19 experience is unique. New Kent resident Corrine Townsend, who also was profiled in Richmond magazine in October 2020, tested positive in June of that year. She spent the next two months in the hospital and inpatient rehabilitation. Although she endured a month on a ventilator, she says that she is now living a “normal life.”
In September 2021, VCU began to monitor and study the effects of the disease in its patients. Townsend says that her doctors there are perplexed by the quality of her current health and progress, given the extreme severity of her case. Their five-year study will continue to monitor the scarring on her lungs, as well as her body’s ability to effectively use oxygen.
For those with long COVID-19, the focus is getting through each day and learning to adjust to new limitations. For so many, the future is not at all clear. Even for those with great insurance benefits, copays and extra medications add to the financial burden, along with the inability to work the same way they could before limits income.
Having COVID-19 “put life in perspective of what is truly important,” Wilkerson says. “Not one week goes by that I don’t think about what has happened and the things we take for granted.”
Although the stress of daily life causes a lot of changes for those with long COVID-19, Hupe says that “it’s not going to disappear as thought. It’s a marathon, not a sprint. Take pride in the little victories along the way.”
Help for Long COVID-19
VCU in June announced a new COVID-19 clinic for VCU Health patients suffering from lung, heart and neurological issues for at least 84 days (approximately three months) after COVID-19 diagnosis. The clinic, located in VCU’s Stony Point campus (9000 Stony Point Parkway), was conceived by Dr. Peter Jackson, a pulmonary specialist. Existing VCU Health patients should contact their physician’s office for information.
Sheltering Arms (8226 Meadowbridge Road, Mechanicsville, and 206 Twinridge Lane, Chesterfield) also offers a rehabilitation program for those struggling with mobility, cognition, shortness of breath or fatigue. Their individualized programs focus on physical and occupational therapies both for patients who have experienced long-term hospitalizations and for those who are struggling with daily tasks after having COVID-19.
If you are suffering from job-related limitations due to long COVID-19, the U.S. Department of Labor has an extensive list of resources on its website. Although the Biden administration has released resources on long COVID-19 disability, qualifying for such benefits can be a difficult and lengthy process, so apply early. Long-haulers are not automatically entitled to benefits; they must have medical proof that their symptoms substantially limit a major life activity.
