Long Covid at Work: A Manager’s Guide

Before the pandemic, Dara was a research engineer, thriving in a job that involved complex technical design and problem-solving. (Names in this article have been changed for privacy.) She was also an avid baker and a voracious reader. Then in March 2020, she got Covid-19. Even after the acute illness had passed, many symptoms remained: Dara struggled to sit up for more than half an hour, was too breathless and lightheaded to walk even short distances, and had severe brain fog that left her unable to hold a conversation or write an email. She used all of her paid and unpaid leave to rest and try to recover. Eventually she improved enough to return to work — but she knew her job needed to change.

Collaborating with her managers and the HR team, Dara found a set of accommodations that fit her needs. They gave her the option to work from home whenever she wanted — up to 100% of the time and at a reduced schedule. For days when she wanted to go in to the office, they secured a mobility scooter to help her get around the building. She also received additional unpaid leave to manage symptom flares. “I wouldn’t still have a job without [that] support,” Dara says.

As her health has improved, she’s been working with her managers and HR to resume her career growth. She was recently promoted to a role with more managerial responsibilities.

Dara’s story, for all its challenges, is a hopeful one. However, many other people’s experiences of trying to work with long Covid are not.

Annette was a researcher at a large university prior to the crisis. She worked long hours and felt well respected in her department, which she’d been in for seven years. She commuted nine miles a day on a bike and was a mountain climber outside of work.

Then at age 30, during the height of the pandemic, Annette was left with debilitating symptoms, possibly due to asymptomatic Covid. She struggled with basic mobility and overwhelming exhaustion, and was eventually diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and postural orthostatic tachycardia syndrome (POTS): chronic illnesses that people with long Covid commonly develop.

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Once Annette’s department returned to the office, management required her to come in four days a week, even though the three days that were standard for her colleagues would have been sufficient for her particular job tasks. When she approached her supervisor, she explains, “I asked for nothing but two days a week at home like everyone else had, because I desperately needed…the bandwidth to figure out what was happening to me.” Her boss referred her to HR, who sent her back to her boss. “I went around in circles like that for a while,” Annette says.

Eventually her request was denied. She was told to use sick days if she couldn’t come in. But after speaking with HR, Annette was left with the impression that she might be penalized if she took too many days off, even though the department had a policy of unlimited sick time. Annette told HR that she was going to raise her concerns with the university’s disabilities office, and HR made it clear that they would contest her account.

Just as Annette was getting desperate, another university offered her a more administrative-based job. It was a step down in terms of responsibility and pay and meant leaving the research field she loved, but it came with a truly hybrid schedule. With more flexibility, Annette could focus on improving her health, though she still grieves the loss of her previous career.

Unfortunately, for most people with chronic illnesses, and especially for long Covid patients, Annette’s experience is more common than Dara’s. One of us, Katie, recently surveyed more than 850 people with long Covid to understand their experiences at work. While many respondents cited accommodations as the reason they could keep working, others said they were scared to ask for any or weren’t given an opportunity to. Comments included:

• “I was on short-term disability when I was let go.”
• “I was still in the hospital when I was fired, still trying to recover from Covid.”
• “As it was 2020, no one believed me about long Covid, and I was treated like it was all in my head.”
• “Due to the stigma, I was scared to pursue accommodations.”

Dr. Ilene Ruhoy, a neurologist specializing in long Covid and complex chronic illness at the Mount Sinai Health System in New York, is familiar with such stories. She says that many of her patients have lost their careers due to their employers’ failure to accommodate chronic illness and that it has left many of them feeling hopeless.

On the flip side, as stories like Dara’s show, the right workplace support can be transformative. Employers must not only help these individual employees but also build disability inclusion into their cultures and talent practices.

Companies Have a Long Covid Problem

As of March 2024, 6.9% of U.S. adults — 17.8 million people — have long Covid, a multisystem illness that sometimes appears after bouts of Covid-19. Its wide range of symptoms vary from person to person, range from mild to severe, and can wax and wane over time. The most common include severe fatigue, post-exertional malaise (PEM, a worsening of symptoms after physical or cognitive exertion), cognitive impairment (such as problems with memory, focus, or comprehension), pain, and neurological and sleep issues. Long Covid disproportionately impacts women — about 63% of patients are female. There are no official treatments for the illness; while some people see their symptoms resolve, others remain chronically ill.

In January 2022 Katie was one of the first researchers to link long Covid disability with a worsening labor shortage. Later that year she and David Cutler, a professor of applied economics at Harvard University, estimated that long Covid costs the U.S. economy between $160 billion and $200 billion per year in lost wages and increased medical costs. In May 2023 the Brookings Institution reported that 700,000 people were absent from the U.S. labor force due to the illness. Some of these people may be too sick to work, even with accommodations.

Yet 65% of adults with the illness are still working — in some cases for fewer hours, or while struggling with tasks that used to be easy for them, or both. Even if they don’t realize it, many employers have a long Covid problem, making it more challenging to hire and retain employees and to support their productivity.

While the focus of this article is long Covid, the recommendations here can help organizations manage the growing number of people with complex chronic illnesses. These include not only ones associated with long Covid, such as ME/CFS and POTS, but also other illnesses that share some symptoms with long Covid — for example, post-concussion syndrome, cancer, and multiple sclerosis.

As employers consider how to provide and customize accommodations, they need to be aware that it is often challenging for employees with these illnesses to get medical documentation or even a diagnosis. There are too few clinicians who specialize in them, nonspecialists may be less familiar with them, and underdiagnosis is common. For example, pre-pandemic it was estimated that 84% to 91% of people with ME/CFS weren’t diagnosed. Dara, from our first example, saw five doctors over four months during her early stages of long Covid but couldn’t get one to provide documentation to her employer. Thankfully, her HR department recognized how ill she was and was willing and able to accommodate her needs; Annette can attest that’s not always the case.

Accommodations Must Deliver Flexibility

For your organization to start supporting people with long Covid and associated conditions, it’s important to first understand how people experience the different symptoms.

The fatigue that people with long Covid and similar conditions experience has little in common with normal, day-to-day tiredness or weariness. This fatigue is physically crushing. As one respondent from Katie’s survey said, echoing a sentiment shared by many: “[I] am now a shadow of myself. I’m completely isolated due to the fatigue.”

Their fatigue is severe, multifaceted, and persistent, and it happens at a cellular level. In people with ME/CFS and also many with long Covid, the function of the mitochondria — the cell powerhouses that create energy — is impaired, and there are physiological changes in these patients after exertion.

When people with long Covid exceed their energy capacity, symptoms can often worsen, sometimes severely, as with PEM. Those in chronic illness communities often describe this phenomenon using the “spoon theory.” Imagine that every exertion costs you a spoon of energy. Taking the subway to work? Fifteen spoons. Sitting upright at your desk or attending a meeting? Ten spoons. While a healthy person may have unlimited spoons to use, people with complex chronic illnesses often have a finite number. Importantly, patients with severe illness may have very few to almost no spoons, whereas patients with mild illness have more. However, if they exceed their allotment, their symptoms flare.

Flares can be significant, leaving some people bedbound for days or weeks. What makes these illnesses even more confusing is that energy capacities vary, as does the extent to which specific activities are draining, even for the same person. For example, someone with long Covid might have five spoons one day and 15 the next, or 10 spoons in the morning and only three in the afternoon.

Because long Covid and similar conditions are complex and dynamic, we recommend that accommodations be customizable and designed for flexibility. There is no one-size-fits-all approach — sometimes not even for the same employee over time, which can be challenging for employers to understand and manage. The good news is that by adjusting how, where, and when people do their work, it’s possible to respond to the symptoms that are most problematic (and “spoon-draining”) for any given worker.

We advise starting with a menu of options and then customizing from there. For example, if an employee experiences extreme fatigue, energy fluctuations, or post-exertional malaise, accommodations might include flexible work hours, part-time options, opportunities for daytime rest, remote or hybrid work, and the ability to organize work priorities around energy windows (i.e., “spoon planning”). For cognitive difficulties or brain fog — other common symptoms — employees may benefit from accommodations such as task reminders, written instructions, quieter workspaces to reduce distractions, asynchronous work opportunities, flexible hours, and recordings and transcripts of meetings they can reference. (A list of 10 common symptoms and potential accommodations can be found at the end of this article.)

Supporting people with these conditions also means reviewing and potentially adjusting the work they are asked to do. Is there room to reassign tasks that are particularly challenging for an individual and to add in tasks better aligned with their current capacity?

Consider recruiters, who may do a combination of on-site work (such as job fairs and hiring days at specific locations) and remote work that can fit schedule needs (such as reviewing résumés, screening candidates over the phone, and talking to colleagues across departments to understand hiring needs). If a recruiter with long Covid has significantly more cognitive energy than physical stamina, for example, could they take on additional remote work in lieu of on-site tasks?

Inclusion Must Be Built In

A menu of accommodations along with individual job redesign efforts will help employers retain employees with long Covid and other chronic illnesses and enable these workers to contribute more than they could otherwise. But organizations that take a more comprehensive approach — building inclusion into the entire talent cycle, as explained in Ludmila’s book, The Canary Code — will have the true advantage in hiring, retention, and productivity across their workforces.

Here are some recommendations. Many are best suited to office jobs, but some can also be used to support frontline workers (e.g., food and beverage services, retail, nursing, etc.). Employers that need to find accommodations for frontline workers may want to focus on providing robust short- and long-term disability coverage and flexible leave-of-absence policies. In addition, consider retraining those employees for less physically demanding roles, if possible.

Recruitment.

Make sure job descriptions focus on essential job functions. Do not include physical requirements for tasks that may need to be performed only on rare occasions. For example, requiring someone to lift 20 pounds “just in case it’s ever needed” is both unnecessary and potentially discriminatory.

Candidate assessment.

Exclude demands from the hiring process that aren’t essential to the position. For example, don’t make an interview day an endurance test unless that mimics the conditions of the job.

Onboarding and team-building activities.

Avoid bonding exercises that are physically or mentally taxing in favor of inclusive options. Try swapping the obstacle course or the group yoga class with an icebreaker that works for everyone, like asking people in advance to come up with a six-word title for their autobiography and to be ready to share with the group.

Work organization.

This is crucial to providing flexibility. Most flexibility-focused interventions are free and provide a great benefit to all employees — but they’re critical for allowing disabled, chronically ill, and neurodivergent talent to participate in the workforce. Consider:

• Remote-work options. When roles can be performed remotely, even partially — for example, among call-center employees — this option can be a significant accommodation.
• Flexible hours and/or scheduling. Be open to different employees working different hours, with mutually agreed overlap. This can pay off for everyone: Employees with long Covid or similar chronic illnesses can work at the times of day when they’re most alert, and their peers get more flexibility for things like childcare and other day-to-day responsibilities. Even in roles with fixed hours, employers can offer more flexible scheduling options. This could include allowing for later start times, longer breaks, or part-time hours to accommodate energy fluctuations and medical appointments, or enabling employees to swap shifts with their colleagues (a practice that workers resoundingly appreciate).
• Efficient work processes and tools. Let employees align their work with their energy levels by providing asynchronous collaboration tools and minimizing unnecessary meetings. Ask people what would make work easier for them — for example, having access to work-related phone apps that can be used while lying down.

Workplace design.

Inexpensive adjustments to the physical workspace can make a significant difference. These could include:

• Improving indoor air quality. Better filtration or windows that can be opened are useful here.
• Providing seating for roles typically performed standing. Cashiers, for instance, do not need to stand. In an office or a factory, you might have a room with a couch, pillows, and/or a yoga mat that employees can easily reserve for breaks.
• Offering basic resources. Ensure easy access to hydration, restrooms, and quiet rest areas.
• Accommodating limited “uptime.” Some people with long Covid struggle with uptime: They’re able to stand or sit for a limited number of hours (or even minutes in some cases) but may be able to work for hours lying down. When it’s possible to offer in-office supine workstations or rooms where employees can meditate or nap, that may be an effective accommodation; when it’s not, companies should consider allowing partial or total remote work.

Skill development and training.

Provide training options that accommodate energy and symptom fluctuations. Lengthy in-person sessions can be exhausting, but so can ones that require sitting for hours or progressing at a set pace. Flexible learning will include options for in-person, video, or text-based work, allowing participants to control the length and speed of sessions. Do not use “time spent” or “pace” as a proxy for success. Instead, test skill acquisition or information comprehension directly.

Inclusive norms.

Leaders should establish and role-model flexible and accommodating behaviors. For example, in hybrid meetings, while in-person employees might be sitting upright on camera, make sure those who are sick and working from home feel comfortable lying down on camera or not being on camera at all. Use the raise-hand feature to ensure that everyone can speak.

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Employee inclusion training.

Train managers and HR on nonapparent disability inclusion. Complex chronic illnesses are frequently misunderstood, so one option is to invite speakers with lived experience to educate others.

Job redesign or task modification.

Where possible, adjust the duties of a role to fit the current capabilities of an employee with long Covid — such as by shifting them from a physically demanding task to a less strenuous one.

. . .

There is encouraging clinical and research momentum for long Covid and related conditions. In a congressional meeting in January, U.S. senators on both sides of the aisle called for more funding to support medical research. Advocates from multiple organizations associated with chronic illnesses, including long Covid and ME/CFS, are lobbying to create a new government office to support a coordinated approach to researching these illnesses. And scientists are actively studying long Covid mechanisms and trying to identify potential treatments. (Among those scientists is one of us, Beth, who studies shared features of complex chronic illnesses and is working on a clinical study of long Covid and chronic illness at MIT.)

The Job Accommodation Network reports that workplace accommodations cost nothing for more than half of employers, and when there is a cost it tends to be onetime and around $300. Yet stories from the many people whose careers and lives have been derailed by long Covid and associated chronic conditions — and in some cases by a lack of understanding from managers, HR, and coworkers — show that our society has a long way to go in helping people with complex chronic illnesses.

When we fail to offer sufficient support, we’re not just failing people with these illnesses — we’re failing society, all of us. We’re depriving our economy of the expertise, experience, and perspectives of millions, and we’re failing to create systems where all talent can thrive. Providing the right accommodations for people with chronic illnesses is a human and economic imperative.

10 Common Symptoms of Long Covid and Associated Chronic Illnesses

And potential workplace accommodations for each.

Symptom

Accommodations

Extreme fatigue, energy fluctuations, and post-exertional malaise

• Flexible work hours
• Part-time work options
• Opportunities for daytime rest
• Remote or hybrid work
• Letting people organize work priorities around their personal energy windows (“spoon planning”)

Cognitive difficulties, cognitive fatigue, and brain fog

• Task reminders
• Written instructions
• Quiet workspaces to reduce distractions
• Asynchronous work
• Flexible hours to enable work in higher-energy periods
• Project assignments that avoid urgent deadlines
• Recording meetings and/or getting transcripts for future reference

Challenges being upright (such as dizziness, loss of balance, and fainting)

• Remote-work options
• Options and equipment to work while sitting (e.g., a chair for a cashier) or supine (e.g., a work phone with access to email and internal systems, a zero-gravity chair, or a computer stand that allows the computer to be positioned over someone who is lying down)

Sleep issues (insomnia, unrefreshing and poor-quality sleep, sleep apnea, and circadian rhythm problems)

• Flexible work hours
• Asynchronous work
• Allowing individual employees to join meetings or schedule shifts within preferred windows

Mobility limitations and neuromuscular dysfunction

• Providing mobility aids and assistive devices (e.g., tools that help someone reach and grip items, joint and back supports, wheeled bags, walkers, canes, and scooters)
• Ensuring that workspaces allow for mobility aids and assistive devices

Gastrointestinal and urinary symptoms

• Frequent bathroom breaks
• Allergy- and sensitivity-friendly food options at group events
• Accessible bathrooms
• Remote work

Reproductive health issues

• Flexible work times, in particular around the menstrual cycle and during pregnancy and menopause, when chronic illness symptoms can be exacerbated

Chronic pain (including but not limited to headaches and joint, muscle, and chest pain)

• For photosensitivity, allowing employees to wear sunglasses or blue-light-blocking glasses; providing screen-glare reduction tools such as software or screen protectors; keeping overhead lighting lower and adjustable; allowing cameras to be off in meetings
• For sound sensitivity, offering quiet workspaces or providing earplugs or noise-canceling headphones
• Talk-to-text software to replace typing
• Ergonomic workstation setups
• Mobility devices to use in the office
• Letting employees work in the physical position most comfortable to them (e.g., reclining, supine, or sitting up, with supports like pillows or braces)

Respiratory issues, increased allergies, and environmental sensitivities

• Improved office ventilation and air filtration (e.g., open windows, HEPA filters, air quality sensors)
• Allowing employees to wear a mask of their choosing at work
• Using unscented, nontoxic, and zero-fragrance cleaning products
• Creating no-fragrance office policies, or asking employees not to wear scented products
• Inspecting the office for mold or water damage
• Using no-VOC (volatile organic compound) paints and materials in the office

The need to avoid infectious illness (Covid or otherwise)

• Offering remote-work options for immunocompromised or vulnerable employees
• Allowing employees to wear a mask of their choosing at work
• Improving office ventilation and air filtration (e.g., open windows, HEPA filters)