Like many office workers, Heather Phillips, a public health programming manager, grew accustomed to the convenience of working from home during the COVID-19 pandemic. But when the health organization she worked for asked employees to return to the office in September 2021, she complied. A few weeks in, however, she realized that the environment was worsening her chronic migraine. The combination of frequent visual interruptions, bright lights, and limits on taking breaks contributed to an increase in dizziness, blurred vision, fatigue, and pain. “I didn't realize how well I felt while working at home until I had to go back into the office again,” says 51-year-old Phillips, who lives in North Conway, NH.
After more than two years of walking from their bedrooms to home work spaces and opening their laptops, employees are gradually making their way back to their cubicles. In April 2022, office occupancy in 10 cities across the United States went up to 43 percent of pre-COVID levels, according to one survey. Returning to the office can present unique challenges for people with neurologic conditions, who may be able to manage their health better working from home.
At home, people with chronic migraine may have more flexibility to take a break if they experience an attack, and those with epilepsy might find it easier to adjust to triggers such as lights, inadequate sleep, or even a missed dose of medication. In the office, those with immobility related to multiple sclerosis (MS) or Parkinson's disease may find it more difficult to schedule physical therapy. And for people who are immunocompromised, being around co-workers again could feel unsafe.
These concerns are shared by many employees, according to Robin Jones, MPA, director of the Great Lakes ADA Center—which provides resources and services related to compliance with the Americans with Disabilities Act (ADA)—who says her Chicago office gets three to five calls a day about returning to in-person work. Some callers are worried about their risk of contracting COVID-19, while others feel they've been able to manage their disability better while at home. “Just going through the routine of getting dressed and ready for in-person work and then commuting can be exhausting for some people,” says Jones.
The National Multiple Sclerosis Society has seen an increase in calls over the past few months from people seeking advice on how to ask to work from home permanently, says Christina Forster, a manager at the organization. She says that for many people with MS, being able to work around their energy levels is essential to a productive workday.
“Some people work better in the morning, and if they don't have to commute, they can start earlier, when they are most alert and energetic,” Forster says. “Other people may prefer to work later. A flexible schedule and work-from-home combination allows people to take breaks and work when they can.”
People who want to continue working from home should ask if their companies have telework policies, Forster says. If the policy is limited—it allows working from home two days a week, for example, and you want five days a week due to a medical condition—employees need to submit (verbally or in writing) official accommodations requests, which are governed under the ADA.
The ADA, which applies to employers, including state and local governments, with more than 14 employees, defines a person with a disability as someone “with a physical or mental impairment that substantially limits one or more major life activities; has a record of such an impairment; or is regarded as having such an impairment.”
“It's about being maximally productive,” says Jennifer Frontera, MD, a neurocritical care specialist at NYU Langone Health in New York. “If you go to your clinician for a disorder that requires you to lie down for a few minutes every day or see a physical therapist a couple of times a week, you can ask for time to do those things.”
Once an employee discloses a disability, the employer is required to make a “reasonable accommodation.” The ADA leaves it up to the employer to decide the nature of that accommodation, explains Wendy Strobel Gower, MS, program director of the K. Lisa Yang and Hock E. Tan Institute on Employment and Disability at Cornell University in Ithaca, NY. “It doesn't have to be the optimal solution; it only has to be effective,” Gower says.
“There may be negative consequences to disclosing a disability at work,” adds Gower. Employers may change their expectations of those employees and not give them the same responsibilities, or co-workers may perceive them differently, she says.
Human resources managers cannot disclose the specifics of an employee's medical information to a supervisor or co-workers. They may communicate only that the person has a medical condition that requires an accommodation, says Gower.
Smaller companies that don't have a human resources department may require employees to disclose the reason to a supervisor. Even then, the information need not be comprehensive, says Gower. An employee might request a desk in a certain location because his or her medical condition affects mobility but not state what the condition is.
It is possible, though, that an employer will request additional documentation, such as a doctor's note, to confirm that the impairment is covered under the ADA. That request may be made verbally first, but it should be followed up in writing, says Forster.
Know Your Needs
Before initiating a request for accommodation, people should assess what they specifically would require, says Pamela Capraro, MS, a research consultant with the Shirley Ryan AbilityLab in Chicago and a former vocational counselor. She recalls a client, a college professor with MS, requesting daytime classes and a stool to sit on while giving lectures.
“It's decided case by case,” says Jones, who has helped employers come up with solutions, such as purchasing a recliner for rest periods.
Hourly workers may have a harder time getting flexibility than salaried ones. But Jones says they could negotiate for unpaid time in the middle of the shift. Rather than working from 9 to 5, an employee might work from 8 to 6 and take a longer break during the day.
An altered work schedule helped Amethyst Blow, 33, manage her epilepsy. At the time she was diagnosed four years ago, Blow was working toward a promotion to district leader at a large department store chain, where she was working 60 hours a week. After she had a seizure at work, she gave up her promotion for a position with a fixed schedule and less demanding hours. She has since taken a new job at a bank where she has more flexibility. She can call her doctor during the day and sit in a dark room if she feels a seizure coming on. “I know management will work with me every step of the way,” says Blow, who lives in Springville, AL.
Accommodations have helped Jim McNasby, a 51-year-old attorney who has Parkinson's disease, be more productive in several senior-level jobs. When his symptoms made it difficult to type, he asked for and received a special keyboard with extra-large keys as well as voice recognition software. One company hired a full-time assistant to transcribe his thoughts. Now, as general counsel for the Michael J. Fox Foundation in New York City, McNasby works from the office five days a week, a setup he prefers to working from home. His staff is understanding when fatigue kicks in, and he arrives at the office later in the day.
Gower recommends that employees focus on accomplishments rather than their medical conditions when submitting requests. Those wanting to continue working from home should summarize how productive they've been over the past couple of years. “You don't owe anyone a full explanation of why you work the way you do,” she says. “It's about equality. It's making room for people to be productive in a way that works for them.”
The important thing is to request an accommodation before it becomes difficult to perform the job, Capraro says. People with progressive neurologic disorders should maintain good communication with human resources, because they may need other accommodations in the future, she says.
Be Persistent
In some cases, employers may not be willing or able to make any accommodation—if, for instance, the cost is too high or it would negatively affect the building or business, says Capraro. The ADA states that employers are not required to make accommodations if providing them would impose “undue hardship” on their businesses.
For employees who are immunocompromised and concerned about exposure to the coronavirus, employers are obligated to take steps to protect them, which could involve reassigning them to positions that require less person-to-person interaction. The accommodation, however, may not be permanent.
“An employer has no obligation under the ADA to refrain from restoring all of an employee's essential duties after it determines that the threat of COVID-19 is over,” Capraro says. “Your employer can decide to revert to prepandemic work arrangements and require that you return to work.”
Employees who feel that their employers haven't done their best to accommodate them can consider legal action on the grounds of discrimination, says Jones. Legal assistance programs like the National Disability Rights Network will represent people in ADA-related cases. The American Civil Liberties Union also has a network of pro bono attorneys who may take these types of cases. Employees must file a charge of discrimination with the Equal Employment Opportunity Commission, typically within 180 days of the alleged discrimination, or with their state's fair employment practices agency. (Many states have employment laws that protect against discrimination and often mirror the ADA.) “Sometimes the bureaucracy involved in filing complaints at the state level is less onerous than at the federal level,” Jones says.
Consider Another Job
When Heather Phillips returned to the office in September 2021, she was able to get an accommodation: a partition placed around her desk to block visual disturbances that could trigger migraine attacks. (She had to fill out paperwork and provide documentation from her primary care doctor and neurologist.) Eventually she moved to a private office, where she could use lamps instead of overhead lighting.
Although the changes helped, Phillips concluded that she preferred working from home, so she found a new remote position as a program manager with the American Migraine Foundation. Since working from home can be socially isolating, on days off Phillips goes out to take walks with friends or meet up for tea or coffee with former colleagues. Her new job does involve some travel, but Phillips enjoys it and says it doesn't really affect her health if she prepares ahead of time and schedules a day to recoup.
“What employers have realized over the past few years is that when people work from home, they really do work,” she says. “They do the job, and they do it well—often better.”
How to Make Work Healthier
People with neurologic disorders often experience mobility problems, stress, fatigue, and trouble concentrating, or “brain fog.” To keep these symptoms from interfering with work, neurologists offer this advice.
Mention mobility problems. “Discuss your symptoms with your neurologist, who may suggest medications or adjustments to ones you already take,” says Rachel Dolhun, MD, senior vice president of medical communications at the Michael J. Fox Foundation in New York City. He or she may refer you to a physical or occupational therapist, who might suggest adaptive solutions such as exercises to improve fine motor skills or special keyboard dictation software to help with typing.
De-stress with mini-breaks. When stress piles up, go for a 10-minute walk or sit in another room and meditate for five minutes. “Build in something that works for you,” Dr. Dolhun says. “Just be sure to step away from devices throughout the day and refocus on the present.”
Ease fatigue with a firm schedule. Working from home is convenient, but it can easily turn into working around the clock, which can exacerbate fatigue. To avoid that, set specific work hours and stick to them, says David Duncan, MD, FAAN, director of the Multiple Sclerosis Center at the Jersey Shore University Medical Center in Neptune. He also recommends creating a designated space at home just for work. “And make sure you're disconnecting from the digital world at a defined time and avoiding screens with blue light close to bedtime, since blue light can interfere with sleep.”
Try these concentration strategies. Constant interruptions can make brain fog worse, says Dr. Dolhun, who advises blocking time off in your calendar to focus on important tasks. “You might have to say, ‘I'm not going to be available for the next three hours.’ Sometimes you just have to turn off your email.” If you have problems with short-term memory or multitasking, your neurologist might refer you to a cognitive therapist, who may brainstorm effective ways to plan your day and use your time.
Icon credits: Disability by Aficons from the Noun Project; Breaks by Lagot Design from the Noun Project; Schedule by Rian Maulana from the Noun Project; Focus by Zky Icon from the Noun Project
Resources for Requesting Accommodations
