As millions of Americans face another year of long COVID, some are finding they are unable to return to work or cannot work as they did before they got sick and are turning to doctors for help with documenting their disability.
For those who can return to work, a doctor’s diagnosis of long COVID is key to gaining access to workplace accommodations, such as working flex hours or remotely. For those who cannot work, a note from the doctor is the first step to collecting disability payments.
With no definitive blood tests or scans for long COVID that could confirm a diagnosis, some say doctors may feel uncomfortable in this role, which puts them in a tough spot, said Wes Ely, MD, MPH, codirector of the critical illness, brain dysfunction and survivorship center at Vanderbilt University, Nashville, Tenn.
Doctors typically are not taught to deal with vagueness in diagnostics.
“Long COVID falls straight into the gray zone,” he said. There are no tests and a long list of common symptoms. “It makes a lot of doctors feel super insecure,” he said.
Now, patients and their advocates are calling for doctors to be more open-minded about how they assess those with long COVID and other chronic illnesses. Although their disability may not be visible, many with long COVID struggle to function. If they need help, they say, they need a doctor to confirm their limitations – test results or no test results.
Better documentation of patient-reported symptoms would go a long way, according to a perspective published in The New England Journal of Medicine.
“There’s a long history of people with disabilities being forced to ask doctors to legitimize their symptoms,” said study author Zackary Berger, MD, PhD, Johns Hopkins University, Baltimore, Md. Dr. Berger believes doctors should learn to listen more closely to patients, turn their narratives into patient notes, and use the new International Classification of Diseases 10 (ICD-10) code, a worldwide system for identifying and generating data on diseases, when they diagnose long COVID. He also thinks doctors should become advocates for their patients.
The Americans With Disabilities Act allows employers to request medical proof of disability, “and thereby assigns physicians the gate-keeping role of determining patients’ eligibility for reasonable accommodations,” according to the analysis. Those accommodations may mean a handicapped parking space or extra days working remotely.
Without a definitive diagnostic test, long COVID joins fibromyalgia and ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), which lack biomarkers or imaging tests to support a diagnosis, they write.
“These diagnoses are therefore contentious, and government agencies, employers, and many physicians do not accept these conditions as real,” they write.
Physicians make a good faith effort in trying to understand long COVID, but both doctors and the courts like to see evidence, said Michael Ashley Stein, JD, PHD, director of the Harvard Law School Project on Disability. Dr. Stein and others say that doctors should listen closely to their patients’ descriptions of their symptoms.
“In the absence of agreed-upon biomarkers, doctors need to listen to their patients and look for other [indications] and other consistent evidence of conditions, and then work from there rather than dismiss the existence of these conditions,” he said.
Dr. Ely said he and others were taught in medical school that if it doesn’t come up on a diagnostic test, there’s no problem. “I am absolutely complicit,” he said. “I’m part of the community that did that for so many years.”
Dr. Ely agreed that the demand for clinical test results does not work for long COVID and chronic diseases such as ME/CFS. People come in with complaints and they get a typical medical workup with labs, he said, and the labs look normal on paper.
“And [the doctor is] thinking: ‘I don’t know what is wrong with this person and there’s nothing on paper I can treat. I don’t know if I even believe in long COVID.’ ”
At the same time, patients might need support from a doctor to get accommodations at work under the ADA, such as flexible hours. Or doctors’ notes may be required if a patient is trying to collect private disability insurance, workers compensation, or federal disability payments through Social Security.
The U.S. Centers for Disease Control and Prevention guidelines on diagnosing long COVID, updated last December, point out that normal laboratory or imaging findings do not rule out long COVID.
In addition, 12 key symptoms of long COVID were identified in May by scientists working with the RECOVER Initiative, the federal government’s long COVID research program. These symptoms include fatigue, brain fog, dizziness, gastrointestinal symptoms, loss of or change in smell or taste, chest pain, and abnormal movements.
Still, patients with long COVID seeking help also face the “disability con,” a term coined by the second author of the NEJM article, Doron Dorfman, a professor at Seton Hall Law School in Newark, N.J.
“Nowadays, when people think disability, they immediately think fraud,” he said.
Prof. Dorfman thinks the perception that many people are faking disabilities to gain an unfair advantage is the biggest barrier for anyone seeking help. The disability system is “preventing people who deserve legal rights from actually obtaining them,” he said.
He urged doctors to believe their patients. One way is to try to “translate the person’s narrative into medical language.”
His coauthor Dr. Berger did not agree with the argument that doctors cannot diagnose without tests.
“Any clinician knows that lab tests are not everything,” he said. “There are conditions that don’t have specific biomarkers that we diagnose all the time.” He cited acquired pneumonia and urinary tract infections as examples.
Benefits lawyers have taken note of the complexities for people with long COVID who seek help through the ADA and federal disability program.
One law firm noted: “The government safety net is not designed to help an emerging disease with no clear diagnosis or treatment plans. Insurance carriers are denying claims, and long-term disability benefits are being denied.”
About 16 million working-age Americans have long COVID, according to an update of a 2022 report by the Brookings Institute. Up to 4 million of these people are out of work because of the condition, the study found. The research is based on newly collected U.S. Census Bureau data that show 24% of those with long COVID report “significant activity limitations.”
Dr. Ely said he sees progress in this area. Many of these issues have come up at the committee convened by the National Academy of Science to look at the working definition of long COVID. NAS, a Washington research group, held a public meeting on their findings on June 22.
A version of this article first appeared on.