Long COVID is Creating Tension between Doctors and Patients
Frustrated Patients Scramble to Find Doctors Who Will Listen and Help
It’s been four years since Jennifer Hooper, 56, has been able to work or drive. On bad days, she can’t make herself dinner. Her career as a senior marketing director with a software startup came to a shuddering halt in July of 2020, when she fell sick and tested positive for COVID. Her initial fever and cough contorted into crushing fatigue, brain fog, blurred vision, dizziness, chest pain and more — and the debilitating symptoms never left.
Largely confined to her home in Portola Valley, Hooper has struggled to find doctors who take her symptoms seriously.
“I had one doctor look at me in a way that said, ‘Yeah, right,’” she said in a hoarse, gravelly voice.
Long COVID: A Growing Problem with No Clear Solutions
An estimated 17 million adults in the United States have long COVID, according to the CDC — which defines the condition as COVID symptoms that persist for at least three months — but it is poorly understood, and there are no FDA-approved drugs to treat it.
Research into long COVID is still at an early stage. One major difficulty is that it probably isn’t one condition but a constellation of overlapping consequences of infection with the coronavirus. These may include the virus persisting in parts of the body, long-lasting disruption of the immune system, clotting in microscopic blood vessels, or changes to the bacteria and viruses that naturally inhabit our bodies.
Doctors in Short Supply
Dr. Hector Bonilla, co-director of the Stanford Post-Acute COVID-19 Syndrome Clinic, sees 15 to 20 long COVID patients a week. He said the clinic has been hiring more doctors and is working on cutting wait times. But hiring remains a challenge, he said, because too few providers want to focus on long COVID.
“Either they lack knowledge of long COVID, or they feel these patients are hypochondriacs — people with health anxiety with numerous, complicated complaints,” Bonilla said.
Frustrated Patients Turn to Online Communities for Support
Charlie McCone, 35, used to work in marketing, communications and advocacy at a nonprofit in San Francisco. Before he contracted COVID in the pandemic’s first wave in March 2020, he was cycling 10 miles a day, on average. He now needs to rest after just half an hour of listening to music or ten minutes of reading — both former passions of his.
Researching his condition, he discovered that microscopic clots in his lungs might be to blame, and saw accounts from other patients suggesting that blood-thinning drugs could help.
Finding a doctor who would try this approach was hard — he approached more than 30 who were unwilling to help, he said. After some experimentation, McCone is now on Plavix, which prevents blood clots from forming. He is now housebound, rather than bedbound.
Patients Feel Gaslighted and Frustrated
Paige Morrisey, 27, was working at a Trader Joe’s in San Francisco when she tested positive for COVID in December 2020. She went from someone who loved dancing and running to someone who got winded just after walking one block.
These symptoms were bad enough, but her neurological symptoms — including anxiety, depression, short-term memory loss, panic attacks, and confusion — were worse. Morrisey was given powerful antipsychotic drugs and felt that one neurologist was more interested in her as a research subject than in helping her as a patient.
“The only time he responded to my emails was to ask for consent to use my results for his research,” she said.
Calls for Change
Dr. Bonilla believes that doctors need to make a greater effort to educate themselves about long COVID.
“If providers took even two hours out of their week to study this condition, it would be a huge help in fighting the sheer lack of knowledge there is currently,” he said.
Conclusion
The tension between frustrated patients and medical professionals is palpable. As the number of long COVID cases continues to rise, it is crucial that doctors and patients work together to find solutions. More research is needed, and more clinics specializing in long COVID must be established. Furthermore, education for general practitioners on how to help long COVID patients is essential.
FAQs
* What is long COVID?
+ Long COVID refers to COVID-19 symptoms that persist for at least three months.
* How many people have long COVID?
+ An estimated 17 million adults in the United States have long COVID.
* What are the symptoms of long COVID?
+ Symptoms of long COVID can include fatigue, brain fog, blurred vision, dizziness, chest pain, and more.
* What is being done to treat long COVID?
+ There are no FDA-approved drugs to treat long COVID, and research is still in its early stages.
* How can doctors help long COVID patients?
+ Doctors can educate themselves about long COVID, provide emotional support, and work with patients to develop a treatment plan.
