Invisible Illness in the Pandemic Era American Workplace

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“Invisible illness” is an umbrella term that includes different forms of chronic pain, chronic fatigue, and mental illness. Some of the most common examples include depression, chronic migraines, and autoimmune diseases. Approximately 10% of Americans have what is considered to be an “invisible” illness or disability. These invisible illnesses make up about 96% of all chronic medical conditions. You likely would not realize someone had an invisible illness unless they disclosed it to you, but despite the lack of external signs of pain and exhaustion, invisible conditions can significantly affect one’s day-to-day function. Considering the fact that invisible conditions are more likely to be overlooked and brushed off by medical professionals, it can be particularly difficult to find appropriate treatment and accommodations.   

In America, the dominant cultural expectation in the workplace is that people should push through all obstacles using their sheer willpower to achieve tangible accomplishments. Workers are often expected to push their personal limits for the sake of profit and productivity. This is already an unreasonable expectation for a perfectly healthy person, but it places an inordinate burden on employees with chronic health conditions. Those with invisible illnesses are put in situations that are particularly difficult to navigate. Because of how rigid workplaces can be with expectations, acquiring accommodations may necessitate revealing deeply personal medical information to employers in a way that those with evident conditions don’t need to prove to the same degree. Even then, accommodations are not always guaranteed, as the workplace is driven by standards of productivity over standards of worker wellbeing.

Despite the dangers the COVID-19 pandemic has posed to those with forgotten invisible conditions, the conversation it has sparked around workplace structure and culture for both healthy and unhealthy workers may help move America towards more reasonable workplace expectations for all.

The Pre-Pandemic Workplace

The traditional structure of the workplace is not conducive to many people’s workstyles, especially those who need added flexibility in their schedules to take care of themselves. Those with chronic conditions, physical or mental, may need to follow care regimens that do not align with the typical work schedule. Hannah Olson, a worker with chronic Lyme disease, writes that her IV and 28 daily pills “were not compatible with having to go in and out of meetings all day and keep up with the demands of a 9-to-5.”  This leads chronically ill employees to a difficult decision: do you risk your wellbeing or your work performance?

The American workplace culture pushes workers to choose the latter. While this pressure to sacrifice most aspects of your life for the sake of higher productivity is by no means unique to the United States, there are a couple of key factors that distinguish American “hustle culture” from other societies. Traces of the Puritan work ethic pervade American society. These American founders renounced frivolity, leading lives dictated by work rather than pleasure and personal wellbeing. The precise original religious connotations may have been diffused over time, but the ultimate idea that working hard is a “sign of one’s value as a human,” remains. This concept of the hard worker being superior to less productive members of society relates to the American belief in meritocracy: those who work harder and achieve more are more deserving than those who achieve less. By that logic, those who achieve less are simply less deserving. 

The United States is also one of the most individualistic nations in the world. American ideology preaches self-reliance over interdependence among community members. Geert Hofstede, a Dutch social psychologist, studied this notion in his research on nations’ degree of “individualism” vs “collectivism.” He defined individualism as the social concept that “individuals are expected to take care of only themselves and their immediate families.” According to his work, the median American selected individualistic choices over collectivist choices 91% of the time, placing America as the highest-scoring individualistic nation in the world. In the workplace, this individualist standard can make workers more hesitant to lean on other members of their team. They may feel like a failure if they are unable to complete a task independently. This belief extends to the mainstream American understanding of welfare programs. According to a 2012 study, 59.7% of American respondents agree that “many poor people receiving aid from the government are just looking for a free handout.” In 2019, the CATO Institute found that about 25% of Americans supported cutting food stamp benefits and 33% wanted to keep them at the same low level. This negative attitude towards welfare programs is evident in our public policy. Compared to European nations in particular, the United States spends far less on social safety net programs like unemployment benefits, disability benefits, and health insurance. This focus on American individualism is not meant to discount the pressures those in collectivist societies face to work and support others. That could introduce another type of social pressure to work harder altogether; however, when looking specifically at American workers with health issues, the concept of self-reliance over interdependence is one that can frequently pressure people to push their limits without necessary community support.

The Pandemic Lights a Spark

When the pandemic struck America in 2020, businesses had to take their employees’ health into account like never before and rapidly restructure to accommodate the unexpected global catastrophe by moving many operations to a virtual space. Overnight, businesses went from operating on a rigid 9-5 schedule to a flexible, online, and sometimes even asynchronous model. The execution of telework was at first largely unorganized and ineffective, as many did not understand the logistics of the practice. Workers had to familiarize themselves with new technology and employers had to learn how to use telework in a way that wasn’t a mere band-aid solution. If a pre-pandemic job entailed sitting in an office cubicle from 9 AM to 5 PM, it didn’t necessarily make sense to copy and paste that task into a telework format, having employees sit in a virtual workspace from 9 AM to 5 PM. 

As employees and employers grew accustomed to telework, some came to realize its potential. The most obvious plus was the ability to safely isolate from COVID-19. Additionally, in a well-executed telework model, invisibly ill employees in most white-collar professions could now work from the comfort and safety of their homes with 24/7 access to their at-home treatments and more flexibility in their working hours. If you were having a flare-up in the morning, you could complete your work in the afternoon instead. You wouldn’t have to budget your limited energy to include a lengthy commute. The pandemic showed the world that, in many industries, telework is possible and can allow workers to be both productive and healthy at the same time.

Alongside these structural workplace shifts, many Americans began to emphasize their wellbeing in their career amidst the Great Resignation. In 2021, millions left their jobs in a record-breaking movement, citing dissatisfaction in areas like disrespectful workplace culture, inflexible scheduling, and low advancement and compensation opportunities in exchange for high expectations. Around 19% of American adults voluntarily quit their job at some point that year.  Many of them used their resignation as an opportunity to seek out a workplace where they felt more respected. Most of these workers who quit are now employed elsewhere, with approximately half of them reporting better conditions in their new job, including higher pay, opportunities for advancement, work-life balance, and scheduling flexibility. American workers are prioritizing their value in a way they haven’t previously – and they are actually getting some tangible benefits.

This movement was a direct response to manifestations of the distinct American workplace culture that values productivity over employee wellbeing. The traditional individualist American view clearly still dominates our social and political landscape – but these rejections of the mainstream productivity-over-wellbeing ideal open the door to future cultural and legislative shifts. Because of the blatant health risks the pandemic posed, health is now part of the conversation in a way it simply hasn’t been before. Telework is an option. Amidst the present high demand for labor, the worker has more power, as evidenced by their gains following the Great Resignation, allowing them to fight for positions which do not prioritize their output over their health. This could be beneficial for everybody and is particularly significant for the invisibly ill. 

Moving Forward

The pandemic has evidently catalyzed workplace progress that may not have happened otherwise, but the struggle is far from over. Many of the telework policies were temporary and haphazardly put into place. Now, more than two years into the pandemic, there is still confusion and mystery surrounding the future of remote work. Some workplaces are mandating returns to the office, while others have maintained their full flexibility. Workplaces that are able to use telework in some capacity should institute official telework policies as a long-term option rather than forcing unnecessary in-office work full time. The level of telework possible will vary from position to position and industry to industry, but these past few years have shown that it is more possible than we previously imagined. Those in the education, information, and finance sectors were able to work largely via telework over the pandemic. Some medical and social work was also able to be moved online. State or federal policy legitimizing and protecting the use of telework in these white-collar professions could reduce the vast variability between workplace policies, ensuring a future where those with invisible illnesses are still able to easily work in this more accessible form when necessary.  

While remote work has been a game changer for many white-collar industries, it is simply not an option for those working in blue-collar industries. Invisibly ill workers who spend their time doing physically taxing labor are even more desperately in need of flexibility and support, but they have seen far fewer improvements in the past couple of years than white-collar workers. While they may not be able to complete their work online, a flexible schedule is just as reasonable and necessary an accommodation, and is listed by the Americans with Disabilities Act as a way to make the workplace more accessible. Any future legislative action on workplace flexibility should address both online and in-person schedule adaptability to include workers from all sectors.   

Schedule flexibility is essential, but it is not the catch-all solution. Olson, the aforementioned worker with Lyme disease, notes that, even though she loves her telework position, she is also still “endlessly exhausted by the balance of a 40-hour work week and managing my chronic illness — even while working remotely.” Further accommodations tailored to individual’s specific needs are evidently necessary. This would include sweeping reform in areas like expanding paid sick leave and paid family-care leave, making healthcare more accessible, and generally bolstering the American welfare system. 

Continuing the cultural shift towards valuing the worker over their work is another key component to a healthier and happier population. The happiest nations in the world emphasize “work-life balance, rather than simply work.” One’s work output should not define them. Everybody deserves a sustainable and enjoyable quality of life, regardless of their ability to adhere to traditional American standards of work. 

These reforms would be most immediately significant to currently ill individuals who are overlooked by the workplace, but they would help every worker. Any perfectly healthy person can also develop health issues at any moment. Even healthy people should not place their productivity over their wellbeing. A just society prioritizes each individuals’ humanity and health over profit and productivity.

References

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Ekins, Emily. “What Americans Think about Poverty, Wealth, and Work,” CATO Institute (CATO Institute, September 24, 2019), https://www.cato.org/publications/survey-reports/what-americans-think-about-poverty-wealth-work.

Malinsky, Gili. “'Work Is the Single Most Important Way of Proving Your Worth' in the U.S., Says Professor-Why It's Making Us Miserable.” CNBC. CNBC, July 21, 2022. https://www.cnbc.com/2021/03/02/why-americas-obsession-with-work-is-making-us-miserable-psychology-professors.html. 

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UMass. “Invisible Disabilities: List & Information - Umass.” Invisible Disabilities: List & Information, March 14, 2015. https://www.umass.edu/studentlife/sites/default/files/documents/pdf/Invisible%20Disabilities%20List%20%26%20Information.pdf.