A multiple sclerosis diagnosis can arrive just as a career is taking off.
With the average age of diagnosis being 32 [1], questions about work, employment and the future can quickly become part of life with MS.
But an MS diagnosis does not necessarily mean giving up work. With the right support, adjustments and information, many people can continue to build fulfilling careers.
A 2022 review of more than 150 studies from 29 countries found that more than a third, 36%, of working age people living with the condition are unemployed, and 17% have taken early retirement.[2]
The same review, which looked at studies published before 2021, also found that the numbers have been going down over the years.[2] But they still point to a significiant challenge. Because people living with MS often say they want to stay in work for all kinds of reasons, from financial security to their own sense of worth.
ECTRIMS Community Voices spoke to Professor Monique Gignac of the Dalla Lana School of Public Health at the University of Toronto and scientific director and senior scientist at the Institute for Work and Health, and Nicola Bitossi, general manager at Multiple Sclerosis Auckland.
They told us the reasons careers are all-too-often cut short, the impact this has on individuals and society at large, and what people and organisations can do to create more supportive working lives.
How can MS affect your working life?
MS usually develops at a point in life when people are building their careers. Such a diagnosis brings huge uncertainty, and one of the first questions people have, said Nicola, is ‘will I still be able to work?’.
“MS does not have a predictable trajectory,” she said. “We are lucky with the advances we have had in recent years; things are more optimistic than they were, but people still do not know what things will look like for them in five or 10 years.”
Symptoms such as cognition, fatigue, toilet urgency and poor mental health, particularly depression and anxiety, can all have a profound impact on someone’s ability to do their job.
This is compounded by the fact that “no two days are the same”, added Nicola. “One day you may be fine, then the next day wake up feeling very fatigued,” she said. “That is really difficult to cope with in a working environment.”
In 2025, the UK’s MS Society published a report with Lancaster University’s Work Foundation. As part of that work, it surveyed 1,125 people with MS and found that 95% said MS had impacted on their ability to do their job.[3]
“Participants reported that the symptoms of MS can make commuting, navigating workplace environments and completing certain tasks challenging,” said the authors. “Managing the symptoms of MS such as cognitive changes and restricted mobility can itself lead to anxiety and depression, which can affect work patterns and the ability to concentrate.”
For nearly a quarter of respondents, 24%, MS had such a severe effect that they felt unable to work at all.
Yet difficult does not necessarily mean impossible. For some people, leaving work may ultimately be the right decision. For others, adjustments or additional support can make it possible to stay in work
“The disability is not MS. The disability is the interaction between the condition and the environment,” said Monique. “For some people, there is no disability because, even though they have MS, they are able to do everything they need to do.”
For others, some changes or modifications would be helpful to get them to that stage.
Why staying in work with MS matters
No matter the reason for people living with MS leaving the workforce, the impact is clear. People need work not just for money, but for their sense of identity, to give them purpose, and to participate in society. Studies have found that employed people with MS have a better quality of life and mood than those who are not.[4],[5]
“People want to work and to be seen as a good worker,” said Monique. “Doing good work and having career plans matters to people’s sense of well being.” Nicola agreed, adding that everybody needs purpose in life. “When you look at mental well being, being able to stay in work is so important for so many of our members,” she said.
The impact on employers is no less significant, said Monique. People diagnosed with long-term conditions like MS, particularly at a younger age, often seek out additional education and training to secure jobs with better benefits and flexibility. If they leave the workforce, employers no longer have access to this reservoir of skills and talent.
On an operational level, replacing staff is often disruptive, expensive, and time consuming, particularly at a time when many countries are facing workforce shortages.
Nicola added that one in three people in her native New Zealand lives with some form of disability. “That is a massive pool of talent,” she said, “and we would be really holding the country back if we did not include, and get the best out, everybody.”
Why getting support at work can be difficult
While laws and regulations on inclusivity vary from country-to-country, there is a growing trend towards more supportive work cultures. Yet many people still feel forced to give up work or retire early.
The problem isn’t necessarily unsympathetic employers, but businesses not knowing how to help someone to remain in their career, said Monique. She cited an example of a woman with MS whose workplace was very supportive, but that support consisted of helping her to take early leave. “Looking back, she wished that she had stayed.”
The fear of disclosure can also be an important barrier to getting help, said Nicola. “People are worried that it might be career limiting: that they wouldn’t get the promotion or might be viewed in a different light.” Monique has heard many of the same concerns in the course of her work.
“People feel that they need to say something because they need help,” she said. “But at the same time, they do not know what the outcome will be. They have concerns about gossip, about reputational damage, and even concerns that they may lose their job.”
What’s more, people do not always know what support would be available even if they did tell their employer about their MS. This all adds to the uncertainty people face, Monique added.
Tips and tools to get the support you need at work
Monique said there were two big employment-related questions facing people with MS. The first is ‘should I tell my employer?’.
“If I had a spinal cord injury, my condition would be visible,” she said. “But you do not know someone has MS unless they tell you. It means there are lots of issues about whether to share that information about your health.”
It is a very personal decision, she went on, explaining the considerations tended to include the person’s needs, goals, and preferences. While some people are very private, others are more willing to share, she said. Things like company culture and policies will also play a role.
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The second question is ‘what can I do’, as many people are not aware of what they might need or the support that might be available.
“We hear this all the time. For example, one person told us that they shared their health challenges with their supervisor, who was very supportive. The supervisor asked what they could do, but the person had no idea,” explained Monique. “They wanted to work together, but they did not really know how.”
The first step, she went on, is understanding the specifics of what you are struggling with. Once you know that, she went on, you can then think about adjustments that might help.
What workplace adjustments can help with MS?
Importantly, there are things people can do that do not necessarily involve disclosure, said Nicola. They might include rearranging work schedules to tackle demanding tasks in the mornings, when people tend to have more energy, and completing easier tasks in the afternoons, when fatigue may be higher. Parking closer to the building, or asking for a chair with armrests and good back support are small changes that might make a big difference.
Bigger adjustments, such as training to enable a shift in role or even reconfiguring heating to better deal with symptoms, may require disclosure. But this is still a personal decision.
In some cases, a career pivot may be the best option. When this is the case it is important to look at transferable skills, and for each person to reflect on what matters to them, said Nicola.
“We ran a careers programme last year,” she explained. “It helped people look at their own drivers and transferable skills; at different strengths that they may have.”
The programme encouraged people to think about what they actually need from work, rather than being restricted to their existing occupation. “For some people, it might be contact with people, producing something, or solving complex problems. It is about thinking outside the box, and about the kind of jobs that might fulfil those things.”
Building a working life that works for you
MS may bring uncertainty, changing symptoms and difficult decisions about disclosure and career direction. But leaving work does not have to be the inevitable outcome.
Sometimes the answer may be a small adjustment. Sometimes it may be a more significant change to someone’s role, and sometimes a career pivot may be the right choice. What matters is that people are supported to explore those options.
That responsibility does not rest solely with the person living with MS. Employers and organisations also have a role to play in creating flexible, supportive workplaces where people can talk about what they need, access appropriate adjustments and continue to use their skills and experience.
As Monique explained: “A person with MS’s life is not confined to the four walls of the clinic or their homes. They want to be able to fully participate, and we should, as a society, be trying to make that happen.”
Need support or advice on how to stay in work?Find your local patient advocacy group in our list of supporting partners and get in touch. |
Footnotes
[1] Walton, C., King, R. et al. (2020). Rising prevalence of multiple sclerosis worldwide: Insights from the Atlas of MS. Multiple Sclerosis Journal, 26(14),1816-1821.
[2] Vitturi, B. K., Rahmani, A., et al. (2022). Spatial and temporal distribution of the prevalence of unemployment and early retirement in people with multiple sclerosis: a systematic review with meta-analysis. PLoS One, 17(7), e0272156.
[3] MS Society and Work Foundation. (2025). No Compromises: Supporting people with MS to thrive in and out of work. Available at: https://www.lancaster.ac.uk/work-foundation/publications/no-compromises/ Last accessed: 4th September 2026.
[4] Dorstyn, D. S., Roberts, et al. (2019). Employment and multiple sclerosis: a meta-analytic review of psychological correlates. Journal of Health Psychology, 24(1), 38-51.
[5] Pack, T. G., Szirony, G. M., et al. (2014). Quality of life and employment in persons with multiple sclerosis. Work, 49(2), 281-287.