Long COVID may qualify as a disability — if only we could define it

WASHINGTON, DC - JULY 26: U.S. President Joe Biden delivers remarks during an event in the Rose Gard...
Anna Moneymaker/Getty Images News/Getty Images

For over a year, Americans have dreamed about the end of the coronavirus pandemic. But even when the country finally contains the spread of the disease, many will be left dealing with lingering side effects. In a White House event on Monday, President Biden said that “long COVID” might qualify as a disability under federal law, shedding light on how the government will respond to people’s continued needs post-pandemic.

The exact number of people with long COVID, where symptoms continue after an initial bout of the virus, is unknown. In February, Stephanie LaVergne, a researcher at Colorado State University, wrote that 1 in 3 people with the coronavirus have symptoms that last longer than the usual two weeks. Earlier this month, a study of nearly 3,800 people from 56 countries found that long COVID can have over 200 symptoms. The long-term illness includes common symptoms like fatigue and brain fog, but some people have reported experiencing visual hallucinations, tremors, itchy skin, and even memory loss. NPR reported that doctors are worried memory problems associated with the coronavirus may leave people vulnerable to Alzheimer’s.

Those with long COVID cannot be left to linger in uncertainty. During the White House event to commemorate the 31st anniversary of the Americans with Disabilities Act, President Biden acknowledged that some of long COVID’s symptoms “can sometimes rise to the level of a disability.”

We’re bringing agencies together to make sure Americans with long Covid who have a disability have access to the rights and resources that are due under the disability law, which includes accommodations and services in the workplace, school, and our health care system so they can live their lives in dignity.

The impact of long COVID on people’s lives cannot be understated. Morgan Stephens, a production assistant for CNN, recently detailed her experience with the disease, which included a “shaky, electric feeling” in her stomach, tremors, and vertigo for more than eight months after contracting the virus.

One of the most sinister things about long Covid-19 is its ability to hide from testing. The very nature of our syndrome compels us to question ourselves ad nauseam until we capitulate in exhaustion. OK, then why can't I walk without panting? Why can't I follow along in conversations even though listening is what I do for a living?

The same day as Biden’s speech, the departments of Health and Human Services, Justice, Education, and Labor released a set of guidelines to help people navigate federal benefits for long Covid. However, the government doesn’t consider long COVID itself to be a disability. Per HHS guidelines, an “individualized assessment is necessary to determine whether a person’s long Covid condition or any of its symptoms substantially limits a major life activity.”

Of course, there are lingering questions that come with Biden’s announcement and the following guidelines. For example, what happens to a person with long COVID symptoms but whose quality of life may not be considered “substantially limited” by the federal government? President Biden’s announcement once again raises the need to tune into conversations on the coronavirus and disability.