Mild MS disability causes hidden workplace challenges, study finds
More support at work might improve job retention among patients
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- Mild MS symptoms, such as fatigue, can accumulate, creating difficulties for employees in performing their jobs.
- Despite disclosing their diagnosis, patients worry about how workplace colleagues will respond.
- More workplace support, proactive communication, and individualized accommodations are crucial, the researchers say.
People with multiple sclerosis (MS) who have mild disability still experience several disease-related difficulties at work — challenges that can lead employees to shift to part-time or possibly quit their jobs — even after their condition is disclosed, a new study in Norway highlights.
In particular, there are three key ways that even mild MS disability affects patients at work: unspoken issues that are often dismissed or ignored, the cumulative impact of MS symptoms that causes increasing challenges over time, and complications with how disability affects patients’ sense of their own identity at work.
Particularly targeting “health professionals and employers,” the researchers wrote that “this knowledge can potentially contribute to reducing work challenges, increasing positive work experiences, and ultimately improving job retention for [people with] MS when the disability level is still low.”
The team called for “an integrated and multifaceted approach to facilitate sustained employment for [people with] MS with low levels of disability,” adding that “further research is needed to determine how to approach, communicate about, and reasonably accommodate work challenges while maintaining employees’ desired self-perception and presentation at work.”
Their study, “Mild multiple sclerosis challenges shape work experiences, affect self-concept, and are often trivialized despite disclosure,” was published in the journal Frontiers in Rehabilitation Sciences.
MS can cause a range of disabling symptoms, including movement difficulties, mental health challenges, and cognitive issues. The disease can make it difficult to work, and studies have shown that people with MS are increasingly likely to drop out of the workforce as the disease progresses.
Researchers ID 3 key work difficulties in early stages of MS
Now, scientists in Norway sought to better understand the challenges that arise in the early stages of MS, when many patients are still working.
“It is important to understand work challenges and possibilities perceived by employed and mildly disabled [people with MS] to potentially facilitate sustained employment,” the team wrote.
The researchers conducted in-depth interviews with 26 MS patients who were actively employed and had mild to moderate disability, with scores on the Expanded Disability Status Scale (EDSS) of 3.5 or lower.
Half of the participants held full-time positions, while the other half worked part-time. The majority had limited work participation at the time of the interview and received some type of financial support, such as sick pay, work assessment allowance, or disability pension.
The first major theme that emerged from the interviews is that people with MS who have mild disability often experience challenges at work that they don’t talk about or dismiss. While all had disclosed their diagnosis at work, these individuals still expressed feelings of worry about how colleagues would respond if they spoke up about their challenges.
“I think openness is generally important, but at the same time, you kind of get those looks, like, ‘Oh my God, poor you.’ And you don’t want that (…). We all want to appear as our best selves, in a way, when we’re around others,” said one patient.
Working tied to identity for many patients in study
A second theme from the interviews is that individually mild MS symptoms such as fatigue or coordination issues can build upon each other, causing increasing difficulty as time goes on. Eventually, these accumulated symptoms can make it hard for patients to keep up with their responsibilities.
“It’s not that I want to stop working by any means, but I’m so tired, and I’m bothered so much in everyday life with, well, the cognitive and physical challenges. MS causes a lot of pain, nerve pain around the body,” said another patient.
The third major theme the researchers highlighted is that MS can affect patients’ sense of self at work.
“I used to be a good [employee], but I’m not today. (….) I don’t jump in anymore. I don’t take it on straight away. I’m reluctant. Because of the challenges I have, the whole situation slows down. I’m a bit afraid of taking responsibility and jumping in. Before, that wasn’t a problem,” one patient said.
Who am I without my job? What am I worth then? (…) Then I kind of lose a lot of my identity.
Another patient noted that the impacts of MS aren’t limited only to the workplace because people’s jobs are often a key aspect of their overall identity.
“Who am I without my job? What am I worth then? (…) Then I kind of lose a lot of my identity,” one person said.
According to the researchers, these findings overall highlight the need to provide support for people with early-stage MS who are still working. The team suggested that providing more support for people in this situation could make it easier for them to stay employed and maintain a positive sense of their identity.
“Health professionals and employers should be aware of the vulnerable situation that [people with MS] may face at work and therefore discuss and address work challenges in a manner that [people with MS] maintain their desired self-perception and presentation,” the scientists concluded.
“One approach can be to offer a proactive and understanding communication, offering work situations individualized to promote experiences of capability, as well as a supportive and accepting psychosocial work environment,” the team added.
