Multiple Sclerosis and Employment: Understanding the Definition of “Reasonable Accommodations”

In 2016, an MS International Federation survey of more than 12,000 people with multiple sclerosis (MS) found that 3 years after diagnosis, 43% of those surveyed were not working, and after 10 years, 70% were no longer working.¹ These data are supported by results of a 2019 study from Canada where 47.8% of survey respondents were not working and a 2024 study from France.^2,3 Leray et al wrote, “Their [employment] situation was fairly favorable before MS (88.1% in employment, resources higher than the median for the general population), but MS had strong and continuous negative effects. Indeed, at 10 years, the employment rate fell by 28.6 percentage points….”³ Even with the advancements in treating MS and its symptoms in recent years, people with MS still find it difficult to stay employed.

And yet, researchers and clinicians know that work can be beneficial for people with MS. As researcher Blanca De Dios Perez, PhD, said in an interview with the International Journal of MS Care, “The reason work is important…is because work is good for health. We [also] know that work is good for economic reasons, as it allows the person to be independent for longer, have access to resources and services, engage in society with coworkers.... It’s also good for our emotional well-being. It helps give us a sense of purpose and identity. For people with neurological conditions, those who are unemployed experience the highest levels of anxiety and depression and a reduced quality of life.”⁴

Unemployment can lead to more social isolation, less exercise, and less access to resources. A reduction in income can lead to poorer health choices, loss of insurance coverage, or the need to find other clinicians on a new health plan. For people with MS, this can translate into worsening fatigue, cognitive ability, and mobility. Results of a 2016 study showed that cognitive test scores could be used to distinguish between employed people with MS, people with MS having difficulty with work responsibilities, and unemployed people with MS.⁵ This was supported by results of a 2024 study that noted, “Unemployment is a potentially modifiable risk factor for cognitive decline in [people with MS]….. Being employed may be beneficial to preserving cognition and cognitive reserve.”⁶ No longer working may lead to a diminishment in overall circumstances that indicates the start of a period of decline and disease progression. In a 2020 systematic review, researchers found that unemployment was the “leading sociodemographic factor influencing” quality of life for adults with MS.⁷

Two Possible Areas of Focus

Lack of Awareness

Results of 2 studies from the United Kingdom and Italy may indicate an area for intervention. Both found that employers and employees alike lack an understanding of the basic definition of reasonable accommodations,as well as the requirements and opportunities afforded by law.

The participants in the PRISMA study from Italy admitted that the term reasonable accommodations was not familiar “or associated it with the idea of having to ‘make do’ or ‘compromise,’ and therefore with the idea of having to give up or forfeit something.”⁸

Researchers in the study from the UK wrote, “Generally, people with multiple sclerosis and their employers lack awareness about multiple sclerosis, legal rights, and how to manage their condition in the workplace. It is common for people with multiple sclerosis not to seek support at work until the problems are too difficult to manage.”⁹

But whose job is it to help employers and employees navigate the system of workplace and disability laws and workplace culture and politics? Researchers in a study on cognitive impairment commented that people with MS may have concerns about “how their cognitive symptoms may be misunderstood in the workplace and may affect some aspects of their work, [which highlights] the importance of communication in the workplace, with or without disclosure of cognitive symptoms. MS care teams can help by equipping people affected by MS with the right knowledge and guidance to navigate these sensitive conversations in the workplace.” Is this another area where clinicians should step in?

Ford et al found that self-efficacy was vital for continuing employment.¹⁰ A person’s strong belief that they can advocate for themselves could address many workplace issues related to a “company’s attitudes and policies[, including a] lack of knowledge and understanding of disability and workplace rules, of the workplace rights of workers with disabilities, of national disability laws, and of the disease and its symptoms in the workplace….”¹¹ Perhaps people with MS should learn to advocate for themselves in the workplace.

Lack of Accommodations

The 2016 global survey results noted, “Stable MS and treatments (disease modifying and symptomatic) were the most important factors for enabling people with MS to stay in work. Among work-related factors, seated work (38%) and flexible working hours (35%) were the two most common.”¹ This was supported by the findings of the 2024 Italian study where the problems related to work were “lack of flexibility in working hours, having to work shifts or frequently work overtime, and difficulty securing a part-time role, taking breaks during working hours, getting paid leave, modifying tasks, role or working hours, or obtaining the possibility to work at home/remotely.”¹¹

At the start and height of the COVID-19 pandemic, many of these problems were addressed by the restrictions governments put in place to protect people. Though employers previously rejected requests to work from home or have flexible hours, these were the working conditions during the pandemic.¹² As study author De Dios Perez said in an interview, “I think the key finding that I would like to highlight from this study…is that because a lot of people were allowed to work from home during the pandemic, they didn’t have the rigid context of work that limited them in terms of when they can take breaks or how they should do their work. They were able to organize their workload according to how their symptoms fluctuated…. This workplace flexibility really…helped them to manage their symptoms.”⁴

Two surveys of managers in the UK, one with data collected in July and August 2020 and one with data collected in May and June 2021, found that opinions about flexible work were changing. In the 2021 survey, 71% of participants agreed that flexible working increased productivity, and 62.9% thought it enhanced performance.¹³ One notable change was that in the 2020 survey, 57.3% of managers believed that employees needed to be physically in an office; in the 2021 survey, that dropped to 48.0%.¹³ Whether these attitude changes are permanent remains in question.

One Possible Avenue for Progress

Vocational rehabilitation is a possible meeting point where clinicians and people with MS can work together to retain the skills needed to maintain employment. This is because “vocational rehabilitation, through a multidisciplinary team composed of occupational therapists, physiotherapists, neuropsychologists, physicians, and nurses, is able to manage the interaction between the impairments caused by MS, the physical environment, and the demands imposed by the work,” Ponzio et al wrote.¹¹

Two areas that would need to be addressed are the high dropout rates in vocational rehabilitation and the need for interventions tailored to the individual, their specific job needs, and their MS symptoms at the time.¹⁴ As with developments in other areas of MS care, time is of the essence. Once a diagnosis is made, or even suspected, rehabilitation should begin to maintain the person’s abilities in all areas, including their physical and mental needs at work. In the scheme of a life-changing diagnosis, it may seem to be a low priority, but research shows that it enhances many facets and the quality of life for a person with MS.

Work is a part of the large picture of life with MS and MS care. For people with MS and their care teams, there are many areas of concern, and the focus on those areas can shift depending on symptoms and the needs of the person with MS. A complicating factor is the international nature of some of the issues surrounding work and employment. De Dios Perez summed it up this way: “It is complex. The way different countries are structured and how their health care services work play a significant role in how many people will remain employed. [There is also] the welfare system. In some places, the welfare system is very well-funded, so people will be able to be off work for a longer time and secure adequate recovery before getting back to work. In other places, the welfare system is not so good, and it makes it more challenging for the person to recover properly. But in terms of the core support needed and employers understanding MS, accommodating workplace support, managing fatigue, cognition, and pain—the context of pain in the context of work is the same, regardless of the country.”⁴

REFERENCES
1. MS International Federation. Global MS employment report 2016. Accessed December 16, 2024. https://www.msif.org/wp-content/uploads/2016/05/Global-MS-Employment-Report-2016.pdf
2. Hategeka C, Traboulsee AL, McMullen K, Lynd LD. Association of unemployment and informal care with stigma in multiple sclerosis: evidence from the survey on living with neurological conditions in Canada. Int J MS Care. 2019;21(5):214-225. doi:10.7224/1537-2073.2017-108
3. Leray E, Regaert C, Duguet E, Guillaume S, Pichetti S, Espagnacq M. Impact of multiple sclerosis on employment and income: Insights from a random sample representative of private sector employees in France using longitudinal administrative data. Rev Neurol (Paris). 2024;180(8):754-765. doi:10.1016/j.neurol.2024.02.389
4. Gyomber EE. IJMSC insights: Blanca De Dios Perez on employment and multiple sclerosis. Neurology Live. December 19, 2024. Accessed December 19, 2024. https://www.neurologylive.com/view/ijmsc-insights-blanca-de-dios-perez
5. Benedict RH, Drake AS, Irwin LN, et al. Benchmarks of meaningful impairment on the MSFC and BICAMS. Mult Scler. 2016;22(14):1874-1882. doi:10.1177/1352458516633517
6. Espiritu AI, Soliman Y, Blair M, et al. Self-reported cognitive function mediates the relationship between employment status and cognitive functioning in persons with multiple sclerosis. Mult Scler Relat Disord. 2024;87:105645. doi:10.1016/j.msard.2024.105645
7. Gil-González I, Martín-Rodríguez A, Conrad R, Pérez-San-Gregorio MÁ. Quality of life in adults with multiple sclerosis: a systematic review. BMJ Open. 2020;10(11):e041249. doi:10.1136/bmjopen-2020-041249
8. Ponzio M, Pignattelli E, Verri A, et al. Job retention by people with disabilities: a qualitative study of the perspectives of people with multiple sclerosis. Med Lav. 2024;115(3):e2024018. doi:10.23749/mdl.v115i3.15947
9. De Dios Pérez B, das Nair R, Radford K. Development of a job retention vocational rehabilitation intervention for people with multiple sclerosis following the person-based approach. Clin Rehabil. 2024;38(7):965-978. doi:10.1177/02692155241235956
10. Ford HL, Wicks CR, Stroud A, Tennant A. Psychological determinants of job retention in multiple sclerosis. Mult Scler. 2019;25(3):419-426. doi:10.1177/1352458518754362
11. Ponzio M, Podda J, Pignattelli E, et al. Work difficulties in people with multiple sclerosis. J Occup Rehabil. 2024;34(3):606-617. doi:10.1007/s10926-023-10149-9
12. De Dios Perez B, Pritchard C, Powers K, et al. The impact of COVID-19 on the employment of people with multiple sclerosis: a multiple methods study. Int J MS Care. 2024;26(Q3):174-186. doi:10.7224/1537-2073.2023-049
13. Birkett H, Forbes S, Evans L, Chung H. Managing employees during COVID-19: flexible working and the future of work (phase two). University of Birmingham. 2021. Accessed December 17, 2024. https://www.birmingham.ac.uk/documents/college-social-sciences/business/research/responsible-business/managing-employees-during-covid19.pdf
14. De Dios Pérez B, das Nair R, Radford K. Development of a job retention vocational rehabilitation intervention for people with multiple sclerosis following the person-based approach. Clin Rehabil. 2024;38(7):965-978. doi:10.1177/02692155241235956