COVID-19 could be the largest disabling event since polio, according to some disability rights advocates.

They’re referring to people who suffer from “long COVID-19,” also known as long-haulers. These are people who experience symptoms of the virus weeks after their diagnosis. The symptoms range from “brain fog” to shortness of breath to depression. 

Dr. Charles Davidson, who oversees the Northwestern Medicine Comprehensive COVID-19 Center, estimates that about 20% to 30% of COVID-19 patients are impacted by the phenomenon.

Patrick Malia, of Elgin, got sick with COVID-19 in March 2020. Over a year later, the 38-year-old is still experiencing symptoms like fatigue, muscle aches and shortness of breath. It’s led to him feeling physically drained from a day of work and even taking breaks during his 10-minute drive home from work.

“I take it one day at a time,” Malia said. “I had a talk with my son last night, he was worried what was going to happen today and I told him, I’m not worried about tomorrow, I’m worried about getting through today.”

Malia, like many others dealing with long COVID-19, has considered signing up for disability benefits to ease some of his stress and exhaustion. However, it’s not always a simple process.

“Just talking to other people that are experiencing the same thing, the information’s not out there—there’s a lot of people struggling to get on disability,” Malia said. “There’s a Facebook group I’m in and numerous people have reported they’re not very successful in getting on disability because what we’re experiencing is not really acknowledged and at the forefront yet.”

Martina Sherman, a shareholder at the law firm DeBofsky Sherman Casciari Reynolds P.C., has been working with clients with long COVID-19 who are trying to navigate disability benefits. She expects the questions surrounding long-haulers to be problematic. The Social Security Administration requires that the disabling impairment is expected to last at least 12 months or result in death. 

For many people experiencing long COVID, that timeframe is not known.

“This could be the single largest mass disabling event in our lifetime,” Sherman said. “The disease has only been around for so long, we’re unsure how long it lasts. So we’re unsure how disability benefits will change to fit a different time frame.”

In a statement, Doug Nguyen, the regional communications director for the Social Security Administration’s Chicago region, said: 

“A person who has limitations resulting from COVID, which have met or are expected to meet our duration requirement, could be found disabled if their limitations equal a medical listing or if the combination of those limitations and vocational factors prevent them from working.  Social Security’s current disability policy rules are able to evaluate COVID-19 cases.”

Another potential issue is with the age of long-haulers. Initially, many patients with long COVID-19 seemed to be older or had pre-existing conditions like chronic lung disease, Davidson said. But now the average patient is 49 years old.

Sherman said getting on disability under age 50 can be difficult. For somebody with long COVID, unless they’re near retirement, it’s unlikely they’ll get benefits right after they apply.

“You’re looking at a very long process without guaranteed income,” Sherman said. “I anticipate we’re going to see a lot of people going to have to move back in with their parents, fall onto a support system or force themselves to work through it because they don’t have the luxury of waiting.”

For those who are curious about getting disability benefits, Sherman says it’s a good idea to ask your employer for a copy of their long-term and short-term disability plans to see what’s covered. Beyond that, she said to keep a diary of symptoms, which can be used to substantiate the benefits application, she added.

Malia said he hopes long COVID-19 becomes more recognized as a health crisis.

“There’s still a mindset that it’s a 99% survival rate and you’re good to go back to work in two weeks,” Malia said. “People like me are overlooked, and there’s thousands of people like me.”