Although she was diagnosed with COVID-19 more than 10 months ago, Jodee Pineau-Chaisson, who works in the nursing home industry, has suffered from incessant and debilitating symptoms. Known as COVID-19 long-haul syndrome or long COVID, she herself is considered a COVID-19 “long-hauler.” 

Symptoms vary from person to person, but Pineau-Chaisson has been dealing with 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 explained to NPR.*

Although long COVID patients can now receive disability benefits, patients are struggling to prove their level of illness to get approved for coverage. These long-term symptoms, however, also put a new burden on the healthcare system, with more people needing care even after their initial diagnosis.

Extreme consequences of long COVID

Pineau-Chaisson has been hospitalized twice and took 12 weeks off work under the Family and Medical Leave Act. Even after these experiences, she continued to feel exhausted and had substantial memory loss. Since she wasn’t feeling well enough to get back to work, the nursing home fired her.

She sought a neurological evaluation and sent in her application for Social Security Disability Insurance (SSDI), which is the federal disability fund that allows people to continue receiving a monthly paycheck. Eligibility criteria for SSDI are very strict, and it’s unclear if COVID-19 survivors will be considered eligible. 

Linda Landry, an attorney at the Disability Law Center in Boston explains that there are three things one needs to qualify for benefits:

• Official medical diagnosis
• Evidence that the condition affects your ability to work
• That you “have had or are likely to have a condition that affects your ability to work for 12 consecutive months,” Landry explained

As new research emerges and teaches us more about the effects of the virus, policies, and guidance from the Social Security Administration (SSA) must come to fruition to both treat—and protect—COVID-19 long-haulers.

Research on long-term side effects of COVID-19

Research must continue to examine:

• The most common symptoms in long-haulers
• How many long-haulers there are
• How many long-haulers experience debilitating symptoms

Some estimate that 10-20% of COVID-19 survivors have long-term symptoms, whereas Dr. Zeina Chemali at Massachusetts General Hospital found that it may be between 3-5%. With more than 31 million Americans who have tested positive, the number of those individuals who become COVID-19 long-haulers is likely to be significant.

Dr. Chemali explains that she has been spending a lot of time helping patients return to work and advocating that employers accommodate their employees who are struggling to go back to work full-time while dealing with bothersome symptoms. “[Long-haulers] might need to have less hours, better shifts, have more assistance at work,” she shared.

She has even helped her patients fill out disability applications. It is then up to the SSA to make the final decision. “That’s why it’s important that the SSA pays attention to long-haulers,” said Congressman John B. Larson (CT-01), who wrote a letter asking the SSA to work with scientists to understand what support long-haulers might need.

*Emanuel, G. (2021, Feb. 22). When Does COVID-19 Become A Disability? “Long-Haulers” Push For Answers And Benefits. NPR. https://www.npr.org/sections/health-shots/2021/02/22/966291447/when-does-covid-19-become-a-disability-long-haulers-push-for-answers-and-benefit

Much about the novel coronavirus, i.e., COVID-19, is still not fully understood. As research progresses and our knowledge of the virus increases, information can change rapidly. We strive to update all of our articles as quickly as possible, but there may occasionally be some lag between scientific developments and our revisions.