Survey: How People Experience Chronic Illness at Work

Tens of millions of people worldwide have long Covid, a multisystem illness that can arise after a bout of Covid-19. It’s one of several complex chronic medical conditions with symptoms like fatigue, post-exertional malaise, cognitive impairment, pain, and neurological and sleep issues. (Myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS; postural orthostatic tachycardia syndrome, or POTS; and Ehlers-Danlos syndrome, or EDS, are others, to name a few.) What is it like to work while experiencing one of these conditions? And how much do people’s colleagues and managers know about how to accommodate employees who have them?

Our new Big Idea feature article, “Long Covid at Work: A Manager’s Guide,” shares a framework for flexible work options that organizations can use to ensure that people with chronic illnesses can contribute and thrive. But we also wanted to hear directly from HBR readers and people from the chronic illness community to get a sense of how their work lives have been impacted — and specifically, whether employers were missing the mark.

So, we invited people to share their perspectives on chronic illness in the workplace via an online survey. More than 200 people responded, almost equally divided between people who identified as having a chronic illness that impacted their day-to-day activities and people who did not (whom we call “non-ill respondents” throughout this article).

After reviewing responses to our questions, a few key findings stood out. (Note that the below represents only the views of the 200-plus respondents, not the broader population.)

Most non-ill people who responded said that their organizations were supportive of chronically ill workers, but those directly affected disagreed.

When asked if their employers were understanding of employees with health issues, 60% of non-ill respondents agreed. Only 36% of people who identified as having chronic illnesses agreed that “my employer is understanding of my illness.”

As one chronically ill respondent said, “Long Covid is not yet understood as a chronic illness…My boss was understanding for the first year, but then told me she’d been ‘patient’ while I ‘recovered’ and now it’s time for me to get back to work.” Another wrote, “Not enough people understand the toll of it, or the extent of it, and it is exhausting to have to fight the disease and educate people at the same time.”

“My company has not communicated with me since taking leave. It’s like being thrown in the trash when your usefulness is less than their productivity ratio,” shared a third respondent. “I have more than 20 years of experience with this firm, but I’m only 45…I’m angry and frustrated and sad.”

A fourth put it succinctly: “Most employers aren’t gonna believe you.”

Part of the problem, according to some, is that long Covid symptoms — and how “ill” someone appears — can vary day-to-day. “Long Covid means that one day I can work at almost full capacity and the next I can barely get out of bed. Because of the unpredictable nature of the illness, it is supremely difficult to manage not only your own but the expectations of managers and co-workers,” said one person. “You want that report Friday? Sure thing! [I’ll] get off to a great start and then Wednesday through Friday the brain fog hits and you can’t remember the last sentence you read and you have a migraine from staring at a screen too much. Your cortisol level shot through the roof because you were excited…to be working on something fun and important again, but now you’ve got a raised heart rate of over 140 whilst sitting down. By Thursday you slept 11 hours and woke up tired and [felt] like you’re getting the flu. You can barely move. You call in sick. You feel like s—. You’re not going to finish the report. You let people down, you feel guilty for being sick, [and] people don’t understand how you were perfectly fine Monday and Tuesday but now you’re not.”

Three-quarters of chronically ill people who took the survey are still working, but many had to make significant changes and sacrifices to do so.

We asked people with chronic illnesses how their medical conditions impacted their work. At some point during their illness:

• 30% had to reduce the hours they worked.
• 27% had to take a medical leave of absence.
• 13% had to find a new job.
• 17% had to stop working altogether.

Currently, 75% of respondents say they still work but that they had to cut back on other activities in order to do so. “It really stinks when every break and lunch is spent resting, so all your awake, productive time is spent at work. [There’s] no free time to manage the rest of your life,” one respondent said. “It’s not sustainable long-term unless someone else in your life is…cooking, doing the dishes, taking out the trash, doing the laundry, etc.” Another noted, “The little things take so much energy it takes everything out of you, and any personal time is just spent recovering.”

A quarter of chronically ill respondents had disability accommodations, but many others reported barriers to access.

Twenty-seven percent of chronically ill respondents said that they had disability accommodations for their medical conditions. The most common were the flexibility to work from home and flexibility around working hours (total hours worked, specific times worked, and the like).

Examples included:

• “Work[ing] from home, accessible training, a special keyboard, extra days to recover from work travel, [closed] captions.”
• “WFH during flare, virtual option (hybrid), chair for sitting available, HEPA [high-efficiency particulate air filter] in room.”
• “More time to complete projects. Shifting deadlines when appropriate. Time off work when symptoms flare. Work from home is #1.”
• “Later start time due to sleep disorders and fatigue.”

Some respondents said they didn’t need formal accommodations due to the nature of their job (for example, a job that is already remote) or because they had informal agreements with their managers (such as keeping their camera off during meetings).

However, other respondents cited barriers to accessing accommodation. The most common was fear of disclosing health status due to stigma or concern about repercussions. “It’s too embarrassing to ask and I think the management team will think less of me if they know how sick I am,” said one respondent. Another wrote, “Bringing this up to an employer is risky due to not knowing how they might react to having an employee that might be ill…Most working professionals have a reputation at stake, and to let our employer know about our condition might put us in a bad spot and potentially not have opportunities for professional growth and promotions.”

One employee talked about the tension between needing support and wanting to appear “well”: “Because long Covid is an invisible disability, I am often stuck between wanting to pass as non-disabled so I am not excluded from various activities, projects, etc., and needing people to understand that I can’t function the way I used to. I end up feeling like I need to read as simultaneously sick and well.”

These concerns may not be unfounded. Some respondents who had disclosed their condition shared that they had experienced challenges. “Once people get wind of my disabling condition, they begin to infantilize me and really put more focus on what they think my limitations are rather than what I actually state as my limitations,” noted one person. And from another: “When my employer learned about my illness, I was trusted less and given fewer opportunities for development. Nothing about my performance changed other than needing time off to recover.”

An additional barrier to accommodation access was the challenge of getting a diagnosis or confirmation of disability. As one person said, “Few doctors know anything about long Covid. Getting one to even acknowledge that you have it is at best months of irrelevant tests to ‘rule out’ everything else under the sun.” A second shared, “My employer didn’t recognize long Covid and expected that I was fit to work on my return,” while a third wrote, “Employers do not understand the impact of my disability on my day-to-day life, and they are not willing to trust my word either.”

Some non-ill people who took the survey also shared their thoughts on the best approaches to accommodation. Many focused on organizational culture and communication.

In addition to highlighting specific accommodation practices (for example, remote or hybrid work and allowing flexibility around hours worked, schedules, and time off) — which generally aligned with the accommodations that chronically ill respondents pointed to — many non-ill respondents spoke about the importance of an organization’s culture, approach to inclusivity, and openness of communication.

Next In

Working with Chronic Illness

Long Covid at Work: A Manager’s Guide

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It’s time for organizations to be inclusive of employees with chronic illnesses. Here’s how.

](/2024/05/long-covid-at-work-a-managers-guide)

“I think companies should create environments where employees feel safe enough to be honest about their capacity and where they might need help,” said one person. Another stressed that “a cookie-cutter approach or policy may not achieve the objective of accommodating health condition and results. Compassion and a shared interest in achieving results should be the way.”

“I think the most important is culture: manager [sensitivity] and psychological safety,” reported a different respondent. “People with chronic illnesses may just need ecosystems that are supportive, where they feel safe and heard by managers and peers and that they will not be reprimanded for calling out their needs, which may be different for each individual.”

Other non-ill respondents spoke about the need to think more inclusively about how to deliver against organizational priorities.

“There should be space for individuals to choose how they do their work and deliver results,” said one person. “If the role allows, performance should not be linked to aspects like hours worked, breaks taken, and check-in and checkout timing and rather to actual deliverables.” Another noted the importance of job tailoring as an option, “by first listening to and understanding the needs of the employee’s illness and then co-creating a plan with the employee and a third-party expert in the particular condition. From the organization’s perspective, the goal should be what can that person deliver particularly well, how much of it, and in what way and then putting in place a system that can support and supplement this delivery for required results.”

Several chronically ill respondents left us with a final thought: They can still achieve as much at work as they did before they became ill — just not in the same way they did before.

“[It’s] possible to achieve the same results even with my health limitations,” noted one person. “However, the way I work and number of hours I work must change to within my energy capacity (e.g., working from home instead of the office, flexible time of day, fewer meetings, time for rest periods at home during day, etc.).” Another emphasized the importance of pacing, or “the ability to move forward when I’m doing all right and scale back activity or stop when I’m feeling worse. This allows me to maintain my productivity long-term, and many of my healthy friends say I get more done in the average day than they do. This requires employers to be understanding of my health limitations and not make workplace attendance into a lever of control, but make semi-flexible deadlines to reach particular goals and objectives or finalize products instead.”

A third person perhaps said it best: “I just work differently now.”