Amy Michelle Wiley was just a teenager when she began to experience digestive problems and pain, but it wasn't until she turned 30 that she discovered why. After visits with many different specialists, she was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (whose symptoms include extreme tiredness and problems with memory and sleep) and Ehlers-Danlos syndrome, which affects the connective tissues, causing pain, overly flexible joints, and digestive difficulties such as heartburn and constipation.
Her symptoms continued for years and disrupted her college education, but her school's disability service worked with her to find accommodations. She received extra time to complete tests, was granted homework extensions, got help with note-taking, and was given a disability parking spot. Her teachers also were informed that she might need to stand or shift positions often, and her parents hired a private tutor.
“It took me six years to get my associate degree in college, but I finished,” says Wiley, now 41 and living in Vancouver, WA. At the time of her diagnoses, she was working part-time as a sign language interpreter for a local college. Her boss, who was head of disability services, made adjustments for Wiley, such as sending her to classes closer to her home and at more convenient times so she could continue working for as long as possible. But her health kept declining, and she eventually had to quit.
“By the end, I was working only three hours a week, and I was struggling,” says Wiley, who experienced brain fog and exhaustion that made it hard to stay awake while driving home. The decision to quit was an emotional one because she loved her work and felt she was helping others, she says. But she worried that she couldn't do the job as well as she wanted to. “It was important to me to stop before I started making a whole bunch of mistakes,” Wiley says. “And then I was concerned about the toll it would take on my health since [Ehlers-Danlos syndrome is] degenerative, and I felt like the longer I pushed through, the worse my health would be for the rest of my life.”
Still, not working has been tough. “I feel society equates our worth as human beings with what we do rather than who we are,” Wiley says. “It took a long time to stop feeling like I was worthwhile only if I accomplished lots of useful tasks in a day. Now I try to find value in being kind and thoughtful rather than in what I do physically.”
Asking for Accommodations
Wiley is just one of many people with neurologic diseases who have to decide whether to quit working as their symptoms worsen or interfere with their jobs. A 2015 study in the American Journal of Industrial Medicine found that employees who had chronic illnesses were much more likely to miss work than healthy employees. A Swedish study published in npj Parkinson's Disease in 2023 found that people with Parkinson's disease stayed in the workforce for approximately two fewer years than those without the condition. In addition, over a decade, 33.5 percent of people with Parkinson's disease stopped working when they received their diagnoses, 76.7 percent stopped within five years, and 90.9 percent stopped within 10 years.
Neurodegenerative conditions that lead to cognitive decline, such as Alzheimer's disease and Lewy body dementia, may affect people's abilities to do their jobs, says Jason Karlawish, MD, FAAN, director of the Penn Healthy Brain Research Center. Other disorders can cause physical problems—such as poor balance, weakness, or vision impairment—or interfere with sleep, all of which can make working a challenge, says Kirk R. Daffner, MD, director of the Alzheimer Center at Brigham and Women's Hospital in Boston, who helps patients assess whether they should continue working. “One of our jobs [as neurologists] is to assist our patients in determining what they are able to do and what they no longer can do, as well as whether that inability is temporary, likely to be permanent, or unknown at that point,” he says.
He encourages people with cognitive difficulties to consider the nature of their jobs and how much executive function plays a role in them. This may be especially important for people who have jobs where mistakes could harm others’ well-being, such as physicians, lawyers, bus drivers, and financial advisers. He recommends that patients talk to their families or caregivers about whether the time is right to stop working. Their input can help inform that choice, as they may see things the person contemplating quitting may not see.
Rosalind Joffe, a career coach in the Boston area, works with people who have chronic illnesses such as Parkinson's disease, multiple sclerosis (which she's had for more than 45 years), and other conditions such as head injuries to help them do their jobs as well as possible. “Acknowledging and coming to terms with what you can and can't do” is the first step, she says. “Once you've identified that, you can find ways to perform at your best.”
People with neurologic conditions can ask their employers for accommodations—for example, switching from full-time to part-time, working remotely, adjusting computers so employees can speak into them instead of typing—to keep working. Under the Americans with Disabilities Act (ADA), companies with at least 15 employees must provide such accommodations unless doing so would be an undue hardship for them, says Sarah DeCosse, assistant legal counsel for ADA and the Genetic Information Nondiscrimination Act at the U.S. Equal Employment Opportunity Commission (EEOC). She advises checking the Job Accommodation Network), funded by the U.S. Department of Labor, which has many examples of accommodations for a wide range of disabilities, including many neurologic diseases.
“There are no strict rules or magic words for how to ask for a reasonable accommodation,” says DeCosse. And documentation isn't necessarily required. Simply alerting a supervisor about a required modification is enough to start the process, she says.
“Many people with disabilities can continue to work given the right circumstances and the right level of support,” says Sara Shahid Salles, DO, director of the spinal cord injury program at Cardinal Hill Rehabilitation Hospital in Lexington, KY. She guides patients through the process of seeking accommodations and other help, such as disability insurance.
Bob Dumas of Cary, NC, was a few weeks into his planned eight-week leave of absence to recover from surgery for brain cancer when he decided to return to work, and the radio station where he hosted the morning show accommodated his needs. He started out hosting an hour of his usual four-hour show and worked his way up to the full four hours over a few weeks. The station also went above and beyond the requirements and gave him a driver to help him get to work.
“It was almost therapeutic for him to go to work,” says his wife, Lu. “It kept him very independent.”
Not all employers will provide accommodations, especially if the employer claims it would be difficult or expensive to do so. People who feel they're not getting what they need from their employers can contact the EEOC for help, DeCosse says.
Sometimes changing jobs is a better option. Last year, Cheryl Taxel, a hospital mental health counselor in Post Falls, ID, who was diagnosed with essential tremor in 2011, started working fewer hours to deal with increased tremors and other conditions such as pain, cervical dystonia, and a heart problem. Taxel recently took more than a month off for medical leave, and although she loves her job, she says a virtual position could be in her future. “Working remotely might be more lucrative … and I could probably do more hours at home,” says Taxel, who worried about paying rent and affording groceries after going from full- to part-time work.
Deciding to Stop Working
Quitting can have “a tremendous impact” on a person's self-worth, says Dr. Karlawish. “For many, work is part of their identity, and to have to stop because of a disability can be damaging. I've had patients who've mourned the fact that they had to leave their jobs.”
Now that Wiley is no longer working, she has more time to focus on resting and taking care of her body, but she misses being employed. Adjusting to being out of the workforce has “been a process, and I feel pretty good now, but there are definitely times I feel depressed.”
During her temporary break from work, Taxel says, she lazed around, but that increased her depression. “At work, I feel useful,” she says. “I missed the feeling of doing a good job.”
In addition to an emotional toll, leaving the workforce can be financially straining. Bob and Lu Dumas were lucky, though. Their savings, her salary, and some entrepreneurial ventures they'd had over the years made it possible for Bob to retire after losing his job at the radio station in 2019. Since undergoing a resection, chemotherapy, and radiation for the cancer, he's had several strokes and seizures, and as a result now has aphasia, a neurologic condition that affects language. “We weren't quite ready for him to retire, but the decision was made for us,” says Lu, noting that Bob, now 57, had been their primary breadwinner.
When Wiley quit, she applied for Social Security Disability Insurance, which included Medicare and a monthly payment based on her work history. Although it required documentation from her doctor about her diagnoses and how they affected her ability to function and took several years to get approved, the wait was worth it, she says. “I have both Medicare and Medicaid, which cover most of my medical needs. I feel more settled and content.” People also can request Supplemental Security Income, which provides a monthly payment of up to $943 for an individual and $1,415 for an eligible individual with an eligible spouse. (Policies regarding health benefits may vary from state to state.)
People also may be eligible for short- and long-term disability insurance from their employers, which covers some conditions, such as cancer, and may provide income.
Quitting can be a relief for some people, especially if they no longer can perform their jobs as well as they once did. Feeling inadequate at work can be demoralizing, says Dr. Daffner. “The increased effort needed to continue working also can be depleting, which can undermine relationships with friends and family.”
For Bob Dumas, retirement seems to have been the right decision. “He loves retirement now,” his wife says. “I'm sure he wishes he were healthier, but he really enjoys not working.”
Read More
