Long COVID-19: 5 facts about the legally protected, chronic illness

Available in Spanish

Since the beginning of the COVID-19 pandemic, millions of people across the United States and the world have experienced lingering or new symptoms in the weeks and months after recovering from a COVID-19 infection. Although not fully understood yet, this condition is known as long COVID-19.

Now three years in, researchers are beginning to understand what long COVID does to the body and are finding ways to combat its effects.

In an Oct. 5 webinar, three experts representing the medical and advocacy aspects of long COVID gave presentations and answered questions from viewers. Experts included Dr. Aluko Hope, associate professor of pulmonary and critical care at Oregon Health & Science University (OHSU) and director of the OHSU’s Long Covid program; Dylan Morgan, manager for employer assistance at the Bureau of Labor and Industries (BOLI); and Emily Cooper, legal director for Disability Rights Oregon (DRO).

You can watch the complete webinar here.

Here are five takeaways from the webinar:

  1. Long COVID can present indifferent ways. Most people living with long COVID have certain symptoms in common, such as fatigue. Particularly, many people experience “post exertional malaise,” which refers to the onset of extreme fatigue after a person does any physical activity, even activity as minor as getting out of bed or walking across a room.

    Beyond fatigue, long COVID can manifest in many areas of the body.

    “When we talk about long COVID, we are really talking about a syndrome of multiple symptoms and systems impaired after having COVID-19,” Dr. Hope said.

    Some people may feel fatigued and sick all the time. Some people might have periodic flare-ups. Some people may experience gastrointestinal issues, joint and nerve pain or rapid heart palpitations rather than fatigue. Others develop a condition known as “brain fog” that can severely affect cognitive function. One person with brain fog could have difficulty focusing on work tasks but is otherwise able to live normally day to day, while another person could become confused so they can no longer drive.

  2. Whether your COVID-19 illness was mild or severe, you can still develop long COVID. If someone was hospitalized for severe COVID-19 illness, their chances of experiencing lingering symptoms, such as fatigue, increase. But even people with mild symptoms can develop new or more severe symptoms in the weeks following recovery from a COVID-19 infection. Although there is some evidence that being vaccinated against COVID-19 slightly lowers the likelihood of experiencing long COVID, those who are vaccinated can still develop the condition.

  3. Under Oregon law, employees may be entitled to 12 weeks of leave under the Oregon Family Leave Act (OFLA). The law applies only to employers with at least 25 employees, and employees must be on the payroll for at least 180 days (6 months) to be eligible for this leave. If an employee has long COVID symptoms and is therefore unable to work, or if they are taking care of a family member with long COVID, they may be able to take up to 12 weeks of protected leave.

    “You should not have to choose between your job and getting healthy, or helping your immediate family member to get healthy,” said BOLI’s Dylan Morgan.

    An employee can take those weeks all at once or spread out. In the case of long COVID, some people go through low periods when they might not be able to work, as well as periods when they feel OK. OFLA allows people to take protected leave when they need it most.

    Employees who wish to receive OFLA leave must meet a “qualifying need,” such as a chronic or other significant health condition. The law does not require that the employee be paid during these 12 weeks, but it protects the employee’s job for when they are able to return to work.

    Read more about OFLA on BOLI’s website.

  4. People living with long COVID are protected by the Americans with Disabilities Act (ADA). Under the ADA, a disability is defined as a medical condition that impacts one or more major life activities. These life activities can include (but aren’t limited to) breathing, walking, talking, sleeping and working. Anyone experiencing symptoms that disrupt any of these major life activities can request work accommodations under the ADA, and the employer must reasonably comply.

    “If you notice that you have a hard time doing things like thinking, breathing, standing, those are all protected under state and federal law,” said DRO’s Emily Cooper.

    Long COVID can cause shortness of breath and fatigue, as well as a condition called “brain fog” that makes thinking and focusing difficult. The condition can also cause gastrointestinal issues, which can limit one’s ability to work or do other day-to-day activities. Because of long COVID’s effects on major life activities like breathing and thinking, someone experiencing these symptoms can request work accommodations under the ADA.

    Check out DRO’s website for more resources on the ADA, and check out OHA’s blog post about long COVID and the ADA.

  5. Long COVID is a chronic condition that will take time and patience to understand.

    “Just the fact that you are going to struggle with this is something you have to prepare for,” Dr. Hope said. “Thinking of long COVID as a chronic illness allows you to be empowered to recognize the triggers [for things such as post-exertional malaise].” Dr. Hope’s goal at OHSU’s long COVID program is to empower patients to understand their limits and what might cause symptoms to flare up, be it stress, physical movement or something else.

    Dr. Hope said many physicians aren’t fully educated on long COVID at this time, and that can make it difficult for patients seeking care.  

    “Part of your job is to be a good advocate for yourself,” Dr. Hope said. “And that might mean bringing in a family member along with you, and that might mean keeping track of your symptoms enough so that when you do get a doctor who is ready to try something, you are able to follow along with that doctor,” to track your symptoms and improvements.

Although we don’t yet know if long COVID will have a cure, awareness and treatment can help people control their symptoms and have confidence to advocate for their needs.