Just as every person experiences the symptoms and progression of MS differently, the way the disease impacts work can vary widely from person to person. New research, published September 14, 2019, in Journal of Health Psychology, explored how the factors that drive a person with MS out of the workplace differ by age. Among people with MS considering leaving their employment, symptoms of the disease were the primary driver for people in their thirties and fifties, whereas psychological reasons were the dominant force for people in their forties. These results are somewhat surprising, according to Lauren Strober, PhD, a senior research scientist in the Center for Neuropsychology and Neuroscience Research at the Kessler Foundation in East Hanover, New Jersey. “Just knowing the course that MS typically takes, I actually thought some of the younger individuals who were considering leaving the workforce relatively early in their illness would have more of the psychological factors rather than the physical,” says Dr. Strober. Instead, the results indicated that pain was the top reason cited by people ages 30 to 39 for why they were considering leaving work, says Strober.
Staying in the Workforce Has Benefits Beyond a Paycheck
There are several reasons staying employed is important for people with MS, according to Strober. “We know that MS affects women more than men, and when we just study women — not just women with MS — who are in the workforce, they value their work less because of prestige and the financial gain. For them, it’s more about their self-esteem and identity — even their main social support,” she says. These factors also hold true for women with MS, she says, which makes work an important aspect of a healthy life. For individuals of both genders, within six months of becoming unemployed, there are drastic declines in mental and physical health, according to Strober. “There’s an increase in cardiovascular disease, more fatigue, more sleep problems, and more depression — and this is in healthy people,” says Strober. Because those same symptoms are already commonly found in people with MS, the thought is that they may even become sicker once leaving the workforce, and that may be a barrier to getting them back in, Strober says. “It’s not necessarily about the financial gain or financial loss of leaving your job; we know that there are very significant mental and physical health outcomes that come with being unemployed, particularly at an age when your peers and the majority of people in your stage of life are still working,” says Strober. “That’s why it’s really imperative to try to keep people employed. Even when I have older patients planning to retire, I suggest they think about what they’re going to do after this to ward off getting unhealthy,” she says.
Multiple Factors Contribute to People With MS Leaving the Workforce
To find out if the issues that lead to unemployment change according to the stage of life a person is in, investigators divided 221 study participants into two groups. A total of 59 people (27 percent) were considering reducing their hours or leaving the workplace; they were called the “considering group.” The remaining 162 people didn’t express any intention to leave work; they were the “staying group.” The subjects were also divided into four groups according to age: 20 to 29, 30 to 39, 40 to 49, and 50 to 59. The 20 to 29-year-old group was excluded because the sample size was considered too small. There were 63 people in their thirties, 93 people in their forties, and 65 people in their fifties. Everyone in the study had a confirmed diagnosis of MS and was currently employed. The number of people in the considering group increased with age, with 22 percent of the 30 to 39-year-olds considering leaving the workforce, 26 percent of the 40 to 49-year-olds considering leaving, and 32 percent of the 50 to 59-year-olds. The researchers looked at a variety of potential reasons for considering retirement from work, including disease duration, disease course, fatigue, sleep disturbance, pain, anxiety, general self-efficacy, personality, and coping style. When examining the group, investigators found the following:
There were no differences in regard to age, sex, education, or disease duration between those considering leaving and those staying in their job; more people of all ages with progressive MS were in the considering group.Disease symptoms, particularly pain and fatigue, psychological factors like depression and anxiety, and person-specific traits, such as level of self-efficacy, personality, and coping style, were all associated with the considering group.Physical symptoms were significantly associated with the considering group for people in the youngest and oldest groups, with pain being more prevalent in the 30 to 39-year-old group and fatigue cited more often in the 50 to 59-year-old group.Psychological reasons were most common in the 40 to 49-year-old group, with anxiety the most commonly mentioned factor.
Should Pain Be Addressed Earlier in MS?
It’s interesting that pain was such an important factor in the younger considering group, says Strober. “Pain often is unrecognized and untreated in MS in general, despite it being prevalent in upward of 90 percent of people with MS,” she says. “That may be especially true early in the illness, when we don’t necessarily think about pain being such a factor.” It’s hard to know with certainty, but it could be that practitioners don’t always address pain early on, says Strober. “It may point to the idea that pain should be asked about more often, particularly early on in the illness,” she says.
Psychological Problems Not Surprising in Those at Midlife
It’s not surprising that people in middle age are having psychological issues, says Strober. “It’s not just MS that this group is contending with. Many people have children and elderly parents to care for,” she says. It may be that psychological factors would play a larger role in determining life decisions at this age even for people without MS, according to Strober. That generation is known as the “sandwich generation,” says Meghan L. Beier, PhD, a rehabilitation psychologist and assistant professor of physical medicine and rehabilitation at the Johns Hopkins University School of Medicine in Baltimore. “This group not only has to deal with their physical symptoms but also the added stress of taking care of everyone else, too,” says Dr. Beier. Supporting this group may mean helping them discuss and find ways to improve the other stressors that are going on in their lives right now, says Strober. “How can we reduce some of those so you can focus your energy on this and manage this more effectively? Maybe they don’t need ‘disease management’ as much as they need social and psychological input,” says Strober.
How Fear and Negative Thinking Can Lead People to Leave Employment Early
There is a significant portion of people with MS who leave work within the first three to five years of diagnosis, and then there’s another wave that happens at around 10 years, says Strober. “People are leaving the workforce early on in the disease course where we think the disease hasn’t really ‘caught up with them,’ that much to account for it,” she says. When people are first diagnosed or in the early stages of MS, they are often looking to reduce their work hours or need accommodations or are even considering leaving the work force, says Beier. “There might be a lot of fear associated the diagnosis and the symptoms they are having, which sometimes leads people to ‘jump the gun.’” This can be the result of a heightened arousal after a person is first diagnosed, according to Strober. “They wonder, ‘How I am going to handle all this?’ People can feel like they need to disengage, and that’s when they leave work, but that can be a reaction to some of the stress and anxiety they’re feeling,” she says. If people can get support addressing those fears and help coping, that could help them stay in the workforce, according to Strober. “That’s the ultimate goal,” she says. People can sometimes have an emotional reaction to the cognitive issues that can be a symptom of MS, according to Beier. “If they aren’t getting things done at work as quickly as they used to, they can begin to worry that they’re not as good of an employee,” she says. That can start a cascade of negative thinking and emotions that could lead someone to consider leaving work early, she says. Sometimes it’s a person’s neurologist who first suggests that they might consider leaving their job, says Beier. The conversation that practitioners have with their patients about work can make a big difference, agrees Strober. “Sometimes we’ll hear patients say, ‘My neurologist told me that if I can’t control my stress or if I can’t afford to take naps at work that maybe I shouldn’t be working,’” she says. There can also be the perception that working may be “bad for your MS,” but we try not to give that message anymore, adds Strober.
A Need to Educate Employers and the Newly Diagnosed
“I think it’s really helpful to start the conversation early about employment with your medical team,” says Beier. This would include conversations about what kind of work accommodations you may need, and whether or not to disclose your MS to your employer, she adds. Having those early discussions and doing research can also might lessen the feelings of stress and anxiety over time, says Beier. One good resource is the Job Accommodation Network, a service provided by the U.S. Department of Labor’s Office of Disability Employment Policy, says Beier. “They have somebody on staff who specifically works with people with MS, and it’s a free resource. The network works with people to help them understand what their rights are with this diagnosis and being at work with a disability,” she says. They can also offer advice on how to ask for accommodations in the best way to minimize repercussions or misunderstandings, she says.
Accommodations That Can Help
The most common kinds of accommodations for MS are around fatigue, says Beier. “Fatigue is one of the number one reasons that people with MS leave the workplace, and so having flexible hours or the ability to work from home can be important so that a person can rest or take mini-naps throughout the day,” she says. Having your supervisor or coworkers communicate in writing rather than in person can help people with MS, because sometimes slow processing speed can be a problem, according to Beier. “For example, it would be better to send someone with MS an email with instructions rather than stopping by that person’s office and verbally instructing them,” she suggests. Having a quiet space where that person can work uninterrupted so they don’t get distracted can help people with MS function better at work, says Beier. It can be difficult when someone discloses their MS and their employer is not very supportive or great with accommodations, says Beier. “Sometimes these people can almost feel forced out of their jobs, which can lead to stress and a lot of anxiety,” she says. One important change that could help people with MS stay employed is if human resource departments were more educated, says Beier. “People sometimes get push-back from their HR departments on what are often very simple accommodation requests. If those accommodations were made, that company could have a fully functioning and valuable employee,” she says.
