June 2021 – Thoughts of getting sick were furthest away for Paul Garner when symptoms of COVID-19 turned his life upside down. “I was blown away,” says Garner, a health doctor who specializes in infectious diseases. He says he never dreamed of becoming a high profile COVID-19 case documenting his battle for a medical journal and speaking about it on television.
Garner figured he would likely feel sick for a couple of weeks and then recover. But 8 weeks later, he still felt hit by a bat, with pain, muscle twitching, racing heart and diarrhea. “It was like hell,” he says.
In a series of blog posts for the British Medical Journal, he began recording his painful illness from COVID. In one of his posts he shared how embarrassed he was to have infected the employees at his workplace for more than 20 years. “I imagined that her vulnerable relatives would die and never forgive myself. My mind was a mess, ”he wrote.
Garner could no longer do most of the things he used to enjoy and reduced his working hours at the Liverpool School of Tropical Medicine in the UK. For the first 6 months of his illness, he struggled with cycles where he felt better, did too much, and then collapsed again. He found the disease difficult to manage. He tried everything: use his smartwatch to track his activities, measure his sleep time, check whether the food he ate affected the sudden worsening of symptoms but did nothing.
The cyclical illness turned into weeks of exhaustion when Garner couldn’t even read and had difficulty speaking. At 7 months old, he wondered if he would ever recover. “I thought the virus caused a biomedical change in my body and somehow paralyzed my metabolism,” he says. “I felt insecure and afraid of the future.”
The change came when someone in his professional network who was recovering from Chronic Fatigue Syndrome offered help. “I learned how the brain and body’s stress response to infections can sometimes be disrupted,” he explains, “and the symptoms I was experiencing were actually false drowsiness alarms.
“Those explanations that made sense, along with empathetic coaching to change my beliefs about my illness, really helped.”
He realized that there was likely no physical damage to his tissues, so he had to stop constantly monitoring his symptoms, find distractions when he felt uncomfortable, and look forward to his recovery and life.
COVID marginalized Garner and dangled him over a chasm of horrific strangers, but he has regained his balance. “There is life after COVID. People find their own way, but they get better. There is hope, ”he says.
Life after COVID
Garner is not alone on his coronavirus journey. At least 33 million Americans have contracted COVID-19, and some still have symptoms more than 4 weeks later, according to the CDC.
A preprint study of half a million people in the UK, where Garner lives, reports that 1 in 20 people with COVID-19 struggle with persistent symptoms. About 6% of people in the study – who have not yet been peer-reviewed – said their recovery was delayed by at least one symptom that lasted 12 weeks or more.
Shortness of breath and fatigue are among the most commonly reported problems after COVID-19. Even people who did not show any symptoms when they were infected for the first time may feel uncomfortable afterwards.
Congress is allocating $ 1.15 billion to the National Institutes of Health (NIH) to fund research into symptoms that persist after COVID-19.
“Given the number of people of all ages who have been or will be infected, the public health implications could be profound,” NIH Director Francis Collins, MD, said in a statement when funding was announced in February. “Our hearts go out to individuals and families who not only have had the difficult experience of acute COVID-19 but are now still struggling with persistent and debilitating symptoms.”
With Delta Plus now a variant of the interest, this will make the return to the classroom in the fall very interesting. I want my children to return to the classroom unvaccinated because my ex doesn’t trust the vaccinations. One of my children has Covid and has long-term symptoms. 🤦
– Kelly Rein (@ KellyRein5) June 29, 2021
A wide variety of physical and mental health outcomes are associated with COVID-19, and people report various combinations of many symptoms, according to the CDC.
Although most people infected with COVID-19 are never hospitalized, many have life-threatening symptoms and traumatic events without medical assistance.
COVID-19 disproportionately affects color communities, and it stands to reason that so will post-COVID illnesses, says Sabrina Assoumou, MD, of Boston University School of Medicine.
Addressing health inequalities will be crucial as post-COVID cases increase. Diversifying the workforce is critical, she explains, because diagnoses can depend on how well a doctor listens to patients describing their symptoms.
The ongoing symptoms can be vague, Assoumou says, and some people who for some reason never received a diagnosis are now experiencing post-COVID effects.
“Long COVID will force us to go back to basics like really listening,” she says. “We definitely have to be more empathetic.”
Why is this happening?
Scientists are studying the many people who continue to have symptoms or develop new ones after being infected. They look for the cause of prolonged illness, try to understand why some people are more prone to long-term COVID than others, and evaluate whether COVID-19 triggers changes in the body that increase the risk of other conditions such as heart or brain disease.
The best defense, according to the CDC, is to get vaccinated and not get COVID-19. However, when people report persistent illness, doctors are asked to consider measures of wellbeing in addition to objective laboratory results and focus treatment on specific symptoms.
COVID rehabilitation clinics are opening in medical centers in the United States. But are efforts to help hampered by the lack of a clear explanation for symptoms that will not go away? And will people not be believed by a health system that is unwilling to address something it cannot really measure?
The first signs of this are pointing to Greg Vanichkachorn, MD, family doctor and founder of the COVID-19 activity rehab program at Mayo Clinic in Rochester, MN.
“If there is one universal truth among all the patients I have interviewed, it is that they are often pushed aside, pigeon-holed or, frankly, abandoned,” he says.
Some experts believe doctors should screen patients for mental symptoms after the initial stages of COVID and provide early and continuous care.
Early psychological help with therapy could “play an important role,” says Mauricio Castaldelli-Maia, MD, of the epidemiology department at Columbia University’s Mailman School of Public Health in New York City.
“It’s important that we acknowledge that the symptoms are real, imagined, or the result of stress,” says Garner. “And too much brooding about the disease and constantly looking for a biomedical cause can be harmful.
“The fear that I would not recover was a major obstacle in dealing with the symptoms. Talking to others about their symptoms is also a simple reminder of them and can strengthen an identity as a sick person. Just let it be. Finding good things in life – positive thoughts really helped me – but it takes time, there can be setbacks. It is not easy.”
Garner says he found his way by listening to others who had recovered.
“I couldn’t do it alone,” he says. “I had a lot of friends, people recovering from fatigue syndromes and viral infections, and help from professional colleagues.”
Garner dusted off his bike and started cycling through his favorite parks in Liverpool. And now he’s running again, leaving COVID behind.
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Paul Garner, MBBS, Liverpool School of Tropical Medicine, United Kingdom.
thebmjopinion: “Paul Garner: about his recovery from long Covid”, “Paul Garner: For 7 weeks I have been going through a roller coaster ride of illness, extreme emotions and total exhaustion.”
CDC: “Post-COVID Conditions,” “United States COVID-19 Cases, Deaths, and Laboratory Tests (NAATs) by State, Territory, and Jurisdiction,” “Assessment and Care of Patients With Post-COVID Disease: Preliminary Guide”.
Imperial College London: “Persistent symptoms after a SARS-CoV-2 infection in a random community sample of 508,707 people.”
JAMA: “Persistent symptoms in patients after acute COVID-19.”
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