When COVID first arrived in the U.S., Jodee Pineau-Chaisson was working as the director of social services for a nursing home near where she lives in Chicopee, in western Massachusetts. By April and May, residents at her nursing home were getting sick.

“I was asked to go on to the COVID units to do FaceTime calls, so they could say goodbye to their family members,” she recalled. “I was very scared.”

But she felt like she owed it to the residents. So, at 55 years old and with no pre-existing conditions, Pineau-Chaisson put on a mask and white jumpsuit. Three days later, she had COVID-19. A few days after that, she was in the emergency room and gravely ill.

A week or two later, when things started to improve, Pineau-Chaisson remembers thinking to herself, “Within a couple of weeks I'll be back to work.”

That didn’t happen. Pineau-Chaisson is a so-called “long-hauler.” These are people who got COVID and, months later, still have symptoms despite testing negative for the virus. Experts are still figuring out exactly what’s causing the long-term symptoms and how many people now fall into this category.

However, one thing is certain: Even after the worst of the pandemic has subsided, society will have a new group of people dealing with long-term medical challenges and, experts say, the scale of the impact in areas like disability insurance is hard to predict.

“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 health care system and our society,” said Dr. Steven Martin, a professor of family medicine and community health at UMass Medical School.

The Medical Questions

Eight months after being released from the hospital, Pineau-Chaisson still has a long list of symptoms: brain fog and memory issues; body pain and heart palpitations; depression and chronic fatigue.

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

“Why do we have long haulers? This is the very big question. We do not know,” said Dr. Zeina Chemali, director of the neuropsychiatry clinics at Mass General Hospital. Recently, she’s been running a clinic focused specifically on long-haulers.

She said it’s hard to know exactly how many COVID long-haulers there are since research is still being done. While some believe as many as 10 percent of COVID survivors will have persistent symptoms, Chemali said early studies from Europe suggest it may be between three and five percent.

“This is not the first time in history that we see those neuropsychiatric, neurocognitive complications,” she said. “So, we put it under this bigger rubric of a post-viral syndrome.”

She said it’s akin to the long-lasting consequences that can come from lyme disease or encephalitis. Chemali’s clinic is looking into whether COVID puts your brain at risk over the long-term for things like strokes and neuro-degenerative disease. She says they don’t yet know the answer.

Despite such major possible consequences, Martin predicted much of the care for long-haulers will fall to primary care physicians.

“It really will make zero sense to refer someone to 17 different specialists to address their concerns,” he said.

He argued that primary care providers will need new training and tools to help this growing group of people facing an array of challenges.

At Chemali’s clinic they are trying treatments such as cognitive rehabilitation and medications — like stimulants — and, she said, that seems to help. But for some, it’s not enough for them to be able to work.

The Disability Questions

“We are really pushing to get the system to help us by placing accommodations for people when they want to go back to work,” Chemali said. “[Long-haulers] might need to have less hours, better shifts, have more assistance at work.”

When needed, Chemali’s team also helps their patients get the documentation needed to apply for disability benefits through the Social Security Administration. But experts aren’t certain what the process will be like to actually get those benefits.

“It's still an open question. It's still a little iffy whether people will be able to qualify,” said Linda Landry, an attorney at the Disability Law Center in Massachusetts.

Whether or not long haulers can access disability benefits is a hot topic in the advocacy community. It seems clear that long-haulers qualify for protections under the Americans with Disability Act, Landry and her colleague Rick Glassman said. This would afford them accommodations for things like housing and accessing government services. What is less clear is if they can access benefits through Social Security Disability Insurance.

Landry said there are three big things you need to qualify: First, a medical diagnosis. Second, evidence that the condition affects your ability to work. And third, the disability has to last for a while.

The requirement is that “you have to have had — or are likely to have — a condition that affects your ability to work for 12 consecutive months,” Landry said.

Since COVID hasn’t been in the U.S. that long, she said, this may be hard to prove. She’d like to see the Social Security Administration (SSA) put out some guidance on how to think about COVID-19 long-haulers — similar to what the SSA has done for headaches and fibromyalgia.

“It's really important that the Social Security Administration get ahead of this and start studying it now,” said Kathleen Romig, a senior policy analyst at the Center on Budget and Policy Priorities. “As far as I know, there's been no public word from the Social Security Administration.”

The SSA didn’t respond to requests for comment.

Romig is hoping SSA experts are conferring with medical experts at the National Academy of Sciences to understand the latest research and treatment options. But, she said, with no word from the SSA and scientists still learning about long-haulers, it is impossible to predict what this will mean for how many long-haulers will qualify for benefits and what it means for finances of the program.

“We really don't know, and we just can't know right now,” said Romig.

But Pineau-Chaisson in Chicopee isn’t waiting for the official word. After running through her short-term disability insurance, the nursing home where she worked and contracted COVID-19 fired her, she said, for having debilitating long-term symptoms.

So, Pineau-Chaisson got a neuro evaluation and sent in her application for disability benefits. “They said it could take two weeks to 10 months and many times they'll deny you the first time,” she said.

But she said if denied, she’ll just keep appealing the decision and hope for the best. She said she knows she’s not alone. She said the person who did her neuro evaluation had just done evaluations for four other COVID-19 long-haulers.