Though research has shown that people with long COVID are more likely to be unemployed, the statistics don't reveal what patients go through before they cut their hours, stop working or lose their jobs.
In a new study involving interviews of people with long COVID, researchers from The Ohio State University describe how the prolonged illness has affected not only patients' job status, but also their overall well-being.
On top of symptoms including brain fog, fatigue, weakness and headaches, study participants reported lacking enough energy to do anything after work, loss of income and added insurance expenses when employment ended or changed, and emotional distress that comes with managing a misunderstood illness.
"For many individuals we talked to, their lives have been completely changed because of this chronic condition. And that's really changed how they see themselves, how they experience life, how they interact with their families, how they provide for their families," said lead author Sarah MacEwan, assistant professor of general internal medicine in Ohio State's College of Medicine.
"In some cases, incredible financial instability has upended their lives. They're facing extremely difficult choices and also trying to take care of themselves. It's so important that we hear from them so we can improve the ways we can support them."
Awareness of these employment-related challenges may help clinicians provide more holistic care to people with long COVID, researchers say. Examples include connecting patients to financial assistance, referring them to mental health practitioners or expediting requests for workplace accommodations.
The research was published recently in the Journal of General Internal Medicine.
MacEwan and colleagues conducted one-on-one interviews in late summer 2022 with 21 adult patients receiving treatment in the post-COVID recovery clinic at Ohio State Wexner Medical Center. Participants reported they had been doing well in daily life before having COVID-19 and were struggling with the effects of lingering symptoms for three or more months after an acute infection. They ranged in age from 19 to 68, three-fourths were women, and most were first infected with the SARS-CoV-2 virus in 2020.
Participants reported the illness interfered with both their work responsibilities and efforts to maintain work-life balance.
"Some quit their jobs because they just couldn't handle working anymore. Some reduced their hours. And then some were involuntarily terminated from their jobs because of their symptoms," said MacEwan, an investigator in Ohio State's Center for the Advancement of Team Science, Analytics and Systems Thinking in Health Services and Implementation Science Research.
There were both financial and emotional repercussions. Loss of income followed either being unable to work, changing to a job with lower pay or having to reduce work hours. Those whose insurance status changed often had to spend more on policies that provided less coverage - all in the context of needing more care because they were chronically ill.
Participants also described feelings of loss of identity related to their professional and home lives and fear of judgment and stigma at work and among friends and family. In an earlier paper, the research team noted some patients faced skepticism in health care settings.
"One thing we've uncovered through this work is people not being believed by their providers about their symptoms or being brushed off or pushed into other diagnoses that they feel don't reflect their experience," MacEwan said. "It's a real question of whether they are getting what they need from the providers they're able to reach where they are."
The current article focused in part on how patients made adjustments to get through the day - developing coping strategies they created or that were recommended by their care team, and accessing employer disability benefits and workplace accommodations.
"Some came up with solutions on their own, but it was wonderful to hear that great suggestions also came from additional specialists or therapists that these individuals were seeing," MacEwan said.
Respondents reported taking frequent rest breaks, eliminating distractions, making lists, emailing themselves a daily report of completed projects, using visual prompts on whiteboards or talking themselves through tasks. Some patients were encouraged by health care providers to seek short- or long-term disability benefits or workplace accommodations such as remote work and flex time. Many participants said initial support from employers eventually waned.
Long COVID is federally recognized as a potential disability, which provides some employment protection to patients. The study authors noted that clinicians recommending established interventions such as rest and pacing may need to anticipate how such treatment strategies affect employment, financial status and mental health - and be ready to connect patients with resources to address the strains linked to making complex life choices.
"It's important that we use lived experience to understand the needs of the population and not make assumptions. There are a lot of good ideas already out there, and people with other chronic conditions have solutions for some of these problems," MacEwan said. "So maybe we don't need to reinvent the wheel, but we certainly need to identify the needs and take steps to fill those gaps."
This work was supported by a grant from the National Cancer Institute.
Co-authors, all from Ohio State, were Saurabh Rahurkar, Willi Tarver, Leanna Perez Eiterman, Halia Melnyk, Ramona Olvera, Jennifer Eramo, Lauren Teuschler, Alice Gaughan, Laura Rush, Stacy Stanwick, Susan Bowman Burpee, Erin McConnell, Andrew Schamess and Ann Scheck McAlearney.
