The Biden administration announced in July that some people with long-term symptoms of COVID-19 could qualify as disabled under the Americans with Disabilities Act — extending the landmark federal civil rights law to sufferers of so-called “long COVID” and affording them protection against discrimination in employment, housing, schools, and other areas.
“Many Americans seemingly recovered from the virus still face lingering challenges like breathing problems, brain fog, chronic pain and fatigue,” President Joe Biden said, speaking at a Rose Garden ceremony in July to commemorate the 31st anniversary of the ADA’S passage. “These conditions can sometimes rise to the level of a disability,” he added.
The move was cheered by many Americans who have suffered from chronic, lingering symptoms of COVID-19.
Biden's announcement came at a critical time: current estimates suggest that anywhere from 3 to 10 million Americans may be suffering from long COVID, creating the largest new influx to the disability community in modern history.
But six months after Biden’s announcement, many COVID “long haulers” have described the process of applying for such benefits as an uphill battle, made all the more challenging by a dearth of specialized doctors and a brand-new illness that often presents as a complex combination of symptoms, each as unique as the patients themselves.
Even before the start of the pandemic, the Social Security disability application process was notoriously difficult, and individuals hoping to obtain modest benefits were required to first navigate a notoriously bureaucratic, complex application process.
But experts say that for COVID “long haulers," proving eligibility for disability benefits may be especially challenging.
“People with chronic COVID long haul symptoms actually have symptoms that are difficult to confirm with diagnostic tests,” said Rebecca Vallas, a senior fellow at The Century Foundation, a think tank that focuses in part on issues of economic and health policy.
Diagnosing long COVID is complex “because it can require the coordination of various specialists who have specific knowledge of the condition,” Vallas said. These specialists, already in short supply, “are overbooked,” she said. “They have waiting lists with, you know, six, eight month waits. And this can especially be the case for patients who don't have great health insurance.”
Other doctors may not even know what to look for. An August study published by the medical research journal The Lancet identified more than 200 symptoms associated with long COVID. Researchers found that a single long COVID patient experiences an average of 55 symptoms across an average of 9 different organ systems.
"What complicates things is there's no straight kind of cookie-cutter way to approach treatment," Dr. Alba Azola, the co-director of John Hopkins’ Post-Acute COVID Team Clinic, told NPR last month. "There's certainly patterns emerging in terms of clinical presentation, but every patient is different."
But in the meantime, millions of Americans with long COVID are struggling — some, with completing simple tasks such as folding laundry or even getting out of bed in the morning.
For Samantha McConnell, a 30-year-old “long hauler” who first contracted COVID-19 in January, the virus has robbed her of the life she once knew.
“The lingering symptoms, honestly have been more debilitating than the actual infection itself,” she told Spectrum News.
Eleven months after her infection, McConnell, a single mother of two, says she continues to experience flu-like symptoms, low-grade fevers, muscle aches, and dizziness that make it difficult to get through the day. “[I also] get a very high and erratic heart rate … Even sometimes if I’m just sitting, my heart rate will go to like 150 beats per minute, [when] I didn't even move,” she said.
The symptoms were so severe and persistent that she was forced to leave her job as a preschool teacher earlier this year.
Now, McConnell says, “If I try to do anything normal, everything comes back with a vengeance. So trying to even be a mom— simple things, like doing the dishes, I have to lay down after, or I have to really strategically plan if I'm going to even like, make my bed.”
Finances remain a major stressor for McConnell, especially since many of the pandemic-era programs intended to help supplant incomes or assist with rent have expired.
“I guess they figured oh, things are going back to normal for everyone else. But for long haul, it's not normal yet. Like, I'm not well enough to take care of myself,” McConnell said. “It’s very scary. Sometimes I wonder if we are going to end up homeless [and] I’m going to have to find somewhere to go.”
According to the Social Security Administration, 16,000 applicants were able to prove COVID-19 caused a medical impairment this year. But the agency declined to say how many of these applicants were also deemed unable to work for one or more years—the threshold for obtaining Social Security disability benefits.
“We make people jump through a maze of byzantine hoops and fill out a mountain of paperwork that’s complex even for lawyers, all to access incredibly modest benefits, which for many people only replace a portion of their lost income,” Vallas said of the disability application process.
“And these are folks who, in many cases, don't have a lot to fall back on to stay afloat while they're waiting — five months, a year, multiple years — to finally get that disability determination that says, ‘here is the lifeline you’ve been waiting for.’”
For McConnell, every day is a struggle. She’s been draining her savings to keep her family afloat — but even so, she says, the hardest part of it all might be the uncertainty she wakes up with every single morning.
“Not being able to work or provide for my kids, and not knowing if I ever will — it's hard,” McConnell said. “It's hard when you don't have a light at the end of the tunnel.”