In December 2019, Marjorie Roberts was ready to take on the world. She’d just received her life coaching certification and started what was supposed to be a short-term job managing a gift shop at an Atlanta hospital to earn money to launch her new business.
By late February 2020, however, the hospital was warning its workers about rising Covid-19 cases across the United States. But Roberts said the gift shop, run by an independent contractor, remained open even as Covid-positive patients began arriving for treatment.
The shop would finally close March 17, 2020, when the hospital went into lockdown. Days later, Roberts lost her balance and fell while getting the mail. She wasn’t feeling well, and decided to go to bed early.
“Once the sun went down that night, my life forever changed,” Roberts said. “I woke up the next morning feeling like a vacuum had sucked the life out of me. I couldn’t sleep, I couldn’t eat and I couldn’t breathe.”
More than two years later, Roberts is still struggling with the after-effects of her Covid infection, which resulted in three emergency room trips and a visit with a lung specialist. Lung damage has left her needing an inhaler to manage her shortness of breath, and she has frequent “Netflix and Hulu days,” as she calls them, because of fatigue.
Roberts also lost seven teeth and will have to have her remaining teeth removed because of gum decay. And she can no longer eat or drink certain foods she once enjoyed because they upset her stomach.
“I can’t even describe what has happened to me in the last two years,” Roberts said. “When I look in the mirror, my missing teeth are a constant reminder of what I’ve been through. I used to have a beautiful smile. A lot of people have moved on from Covid, but for those of us with long Covid, we’re still here and we still suffer.”
Life with long Covid
While long Covid, also referred to as post-Covid conditions, isn’t an official diagnosis, it’s become the umbrella term for the ongoing symptoms some people have after recovering from a Covid infection, whether it was mild or severe.
“We’re still learning a lot about Covid,” said Michael Myint, M.D., associate professor of infectious diseases for UW Medicine and chief population health officer for the department of medicine at the University of Washington. “We’re trying to figure out if something is different about Covid-19 that creates [ongoing] inflammation or an inflammatory condition, because that’s often what happens with infections that cause longer-term symptoms. It creates what we call a viral reservoir, and our immune system can't completely get rid of it.”
The viral material lingering in the body can contribute to the symptoms most commonly reported by patients with long Covid: fatigue, shortness of breath, chest discomfort, persistent cough and cognitive impairment.
Studies have also found a connection between the severity of a patient’s Covid infection and the likelihood they will experience long Covid symptoms. Pregnancy and cardiovascular conditions can make Covid symptoms worse. And people with four risk factors — high levels of coronavirus in the blood, the presence of certain autoantibodies, reactivation of Epstein-Barr virus (the virus that causes mono) and Type 2 diabetes — were also more likely to have longer-lasting symptoms after their infection.
While there’s no magic bullet treatment for long Covid, Myint said researchers are hoping that as more people receive layers of protection from Covid, either through vaccination, previous infection or a combination of both, infections and later symptoms will become less severe. For now, however, the standard treatment for long Covid is managing cases on a symptom-by-symptom basis based on each patient’s unique health profile.
People can lower their risk of long Covid by completing the Covid vaccine series according to current Centers for Disease Control (CDC) guidance. Vaccines have been found to lower the risk of developing severe symptoms from a Covid infection and persistent symptoms after infection. While some studies and anecdotal reports from patients have shown a decrease in long Covid symptoms after vaccination, Myint said vaccines should be considered a preventive measure, and not a treatment for long Covid.
Some small studies have found that patients who took antivirals while having Covid were less likely to have long Covid symptoms.
“As we learn more about Covid, we'll probably learn what interventions are more or less effective,” Myint said. “A lot of small studies also indicate that the basic interventions of diet, exercise and sleep are the longer-term way to address all of these symptoms and improve overall wellness, no matter what else you do.”
Her new normal
The best support that family, friends, colleagues and healthcare providers can offer those with long Covid is acknowledging that their symptoms are real, even if they aren’t always visible (such as cognitive impairment) or are undetectable through blood work or other tests. Offering accommodations, such as rest time for fatigue or a modified workload, can help people’s longer-term physical and mental recovery.
Roberts said she’s thankful to have had that support from her husband and daughter throughout her illness. She also said that prayer and seeing a therapist have been vital to her mental health, as has advocacy. As a result of her illness, Roberts became active in groups for long Covid survivors, including Covid Survivors for Change. She regularly contacts local, state and national officials to raise awareness of long Covid, and she’s proud that U.S. Rep. Lucy McBath (D-Georgia) recognized her work in the Congressional Record.
Roberts also joined the RECOVER Initiative, a National Institutes of Health study looking at the long-term effects of Covid. She knows there’s no pill she can take to eliminate her long Covid symptoms or reset her life back to 2019, but she vows to keep fighting for herself and for the many friends she lost.
“God spared me,” Roberts said. “I’m one of the lucky ones because I did survive.”
This resource was created with support from Pfizer.