Medical experts believe there are at least 750,000-1.3 million people living with long-term effects of COVID that prevent them from working. Of the nation’s nearly 11 million job vacancies, the Brookings Institution has suggested that 15% could be from long COVID-related disability. For a growing number of Americans living with long COVID who are unable to work, this is where a new set of difficulties has emerged as they fight to obtain disability benefits.

Difficult to Prove

The Social Security Administration (SSA) controls federal disability benefits, while private insurers manage employer-provided disability benefits. These agencies must distinguish illegitimate or questionable disability claims from genuine ones. But this task has become exponentially more challenging with an influx of claims for an illness we still don’t fully understand and can’t always measure.

Long-COVID patients often experience extreme fatigue with only slight exertion, brain fog, and rapid heartbeat. Yet, common medical tests for these conditions (chest X-rays, EKG, neurological tests, etc.) often come up negative. Physicians say their patients are clearly unable to work yet can’t provide enough evidence to meet insurers’ strict requirements.

Monica Verduzco-Gutierrez, chief of the long-covid clinic at the University of Texas Health Science Center at San Antonio, believes some of the denials are without merit and is working hard on behalf of her patients. “Almost every day, I’m filling out disability paperwork, writing letters of appeal, and talking with people from disability companies.”

A big problem is that while there are tests to measure some long-COVID symptoms, such as dysautonomia (a central nervous system disorder in which the body has difficulty self-regulating), these tests often have long waitlists.

Their experience is a much larger-scale version of what people with chronic fatigue syndrome frequently go through, prompting Mount Sinai Hospital neurologist Benjamin Natelson to state, “We are seeing a mini epidemic of chronic fatigue syndrome.”

While the percentage of COVID-related disability claim denials is unknown, the SSA disclosed it had received roughly 23,000 virus-related applications since the pandemic began, which is less than 1% of their total yearly applications.

Assumption Versus Reality

Some long-COVID patients have managed to receive disability benefits, especially after severe infection. However, most long-haulers develop symptoms after just mild COVID-19, and these symptoms are often not visibly debilitating.

This leads to another issue long-haulers face in their struggle for benefits. Rather than focus on a person’s diagnosis of long COVID, insurers often award benefits based on physical ability to perform a particular job. If the job is sedentary, it is assumed that nothing will interfere with performance. “But you have to think; you have to analyze, you have to plan, you have to use judgment. If you are not able to fully exercise those faculties, you can’t work at that job,” explains Mark D. DeBofsky, a Chicago benefits attorney.

In its official guidelines, even the Centers for Disease Control and Prevention cautions doctors against such assumptions: “Lack of laboratory or imaging abnormalities does not invalidate the existence, severity, or importance of a patient’s symptoms or conditions.”

Deepa Singh’s Story

A former project manager for a Fortune 100 firm, 30-year-old Deepa Singh of Louisville, has been suffering from long COVID since 2020 before there was even a diagnosis code for the condition. She has been unable to work and obtain steady disability payments.

Singh tested positive for the virus in August 2020. Yet despite probable cause for her long COVID, her doctor dismissed her symptoms of extreme tiredness, brain fog, and rapid heartbeat as psychosomatic—a common experience among long-COVID patients.

Illustrating Debofsky’s point, Singh’s managerial performance began to deteriorate (forgetfulness, inability to multitask, etc.), and her employer took notice. “It just got to the point where I couldn’t function anymore, and people were noticing more and more that I was slipping.”

Her company contracts with Unum, a multinational provider of disability insurance. She was denied temporary benefits after applying in late 2020, and it was a stressful and dispiriting ordeal. Singh describes one conversation in which an Unum representative expressed disbelief that a “young thing” could be disabled by the virus.

Singh eventually obtained temporary benefits in February 2021 after appealing her case and being sick for a year. However, they expired in June 2021. Still unable to work despite consistent therapy, she again encountered stiff resistance from Unum when trying to obtain long-term benefits. She was denied twice, in September and November 2021. In their first denial, Unum cited Singh’s negative February 2021 COVID test results while ignoring her positive August 2020 results. In the second denial, Unum said Singh’s inability to work hadn’t been determined since her new primary care provider had just begun treating her.

Despite her provider’s updated case notes in October 2021, Unum stated in their November denial that Singh’s test results didn’t prove functional impairment, such as a negative test for cognitive dysfunction. By this time, her qualification window for continued benefits had also expired, Unum noted. 

Singh is now appealing the second denial and awaiting feedback.

The Case of Eve Efron

Like Singh, 32-year-old Eve Efron of Virginia was stunned at her denial of temporary disability.

A senior account director for a public relations firm, Efron has been living with long-COVID symptoms of total exhaustion, headaches, disturbed sleep, and the accompanying emotional stress since contracting COVID in January 2021. 

Though she had used her sick time and reduced her work schedule, by April of that year, her symptoms had progressed to where a respite from work was the only sensible option. However, Mutual of Omaha, her employer’s benefits provider, rejected Efron’s disability claim that August, worth $7,500 for five weeks. 

All of Efron’s appeals have been dismissed, even with her medical provider’s input. The insurer cited a promotion Efron received in September 2021, which she posted to her LinkedIn account, as evidence of satisfactory job performance. Her well-written appeal letters were also cited as evidence of her cognitive function, as was the lack of any objective medical tests. 

Efron explains that her attorney uncle helped her draft the appeal letters and that her leave of absence in May-early June 2021 had no bearing on her September promotion. She’s taken aback that Mutual of Omaha, which brought in $11 billion in 2020, would undercut her healthcare providers’ judgment.

Efron continues to work, but still suffers headaches and tiredness. She’s concerned she’ll never again be her normal self. At this point, she doesn’t think she’ll ever receive compensation for her missed work.

Laurie Bedell’s Predicament

In greater Pittsburgh, Laurie Bedell and her family all contracted COVID during Thanksgiving 2020. Her father died from the illness, while Bedell still deals with multiple lingering symptoms, including constant fatigue. She left her post as a nursing supervisor and six-figure salary, but learned in February 2022 that her claim for long-term disability had been rejected by the SSA. Bedell had already been rejected for state unemployment benefits since she was too sick to actively pursue another job.

In her SSA application, Bedell says she sent thousands of pages of records from Cleveland Clinic and Pennsylvania doctors, with test results that she said indicated lung and cognitive dysfunction. She then provided additional test results that she said proved a dozen different conditions, ranging from post-exertion malaise, chronic fatigue syndrome, dysautonomia, small fiber neuropathy, and irritable bowel syndrome to anxiety and depression. The SSA even sent Bedell to an independent clinician for assessment, whom Bedell thought recognized how severe her condition was.

But the agency bases its disability decisions on function and not diagnosis, explained SSA spokeswoman Nicole Tiggemann. The agency wrote in its denial to Bedell, “You experience pain, but the evidence shows that you are still able to stand, walk, lift, carry, and bend. At times you are depressed. However, this would not prevent you from performing routine work in a low-stress environment. You have some limitations on your activities. However, the severity of your condition does not totally disable you.”

Bedell has been forced to liquidate her retirement savings to pay bills. Instead of buying the house she and her husband were renting, they may now be forced to move.

*Rowland, C. (2022, March 8). Covid long-haulers face grueling fights for disability benefits. The Washington Post. https://www.washingtonpost.com/business/2022/03/08/long-covid-disability-benefits