When Does COVID-19 Become A Disability? ‘Long-Haulers’ Push For Answers, and Benefits

When COVID-19 first arrived in the U.S., Jodee Pineau-Chaisson was working as the director of social services for a nursing home in western Massachusetts called Center for Extended Care in Amherst. By the middle of April, residents were getting sick.

In early May, Pineau-Chaisson was tapped for a particular duty: “I was asked to go on to the COVID-19 units to do FaceTime calls, so they could say goodbye to their family members,” she recalls. “I was very scared.”

She was worried about contracting the virus, but also felt like she owed it to her residents. So, at 55 years old and with no pre-existing conditions, Pineau-Chaisson put on an N95 mask, a white jumpsuit, and she entered the units to help. Three days later, she had COVID-19.

She says she’s certain she was exposed at the nursing home since, at the time, she wasn’t seeing anyone outside of work or shopping in stores, and she’d even moved out of her house and into an apartment to avoid bringing the virus home to her wife. Thinking back, Pineau-Chaisson wonders if she was sweating too much, which made it harder for her mask to work well. Or, perhaps, she got too close while trying to facilitate the FaceTime calls.

It’s now been almost ten months since Pineau-Chaisson got sick, yet she is still dealing with a series of devastating ailments. She says she has memory problems, body pain, heart palpitations, depression and chronic fatigue.

“Sometimes it can even be hard to walk up the stairs to my bedroom,” she says.

Pineau-Chaisson’s wife has become her primary caregiver. She said her wife has always been supportive and encouraging, even when she needed help getting in and out of the shower.

“She’s a nurse, so I lucked out,” Pineau-Chaisson says.

Pineau-Chaisson is a so-called long-hauler. These are people who survive COVID-19 but have symptoms – sometimes debilitating symptoms – many months later. As scientists scramble to explain what is going on and figure out how to help, disability advocates are also scrambling: They are trying to figure out whether long-haulers will qualify for disability benefits.

Disability advocates and lawmakers are calling on the Social Security Administration or SSA to study the issue, update their policies and offer guidance for applicants.

“If we end up with a million people with ongoing symptoms that are debilitating, that is a tremendous burden for each of those individuals, but also for our healthcare system and our society,” says Dr. Steven Martin, a physician and professor of family medicine and community health at UMass Medical School.

“We know what’s coming. So, we have to make sure that we’re on top of this,” says U.S. Rep John Larson, a Democrat from Connecticut, who joined with another member of Congress to write a letter asking the SSA to work with scientists to understand what support long-haulers might need.

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