People with primary progressive multiple sclerosis (PPMS) may face challenges at work, but the right support and adjustments in the workplace can make a significant difference.
PPMS can cause symptoms such as difficulty walking, vision changes, or difficulty staying focused, which may affect your ability to work in the same way you did before.
According to the National MS Society, people with PPMS are more likely to face challenges staying in the workforce. But that doesn’t mean you have to stop working right away or at all.
Many people with PPMS continue to work by making adjustments that help them manage their symptoms while at work. Newer treatments that help slow the progression of the condition can also make staying in employment possible.
This article answers some of the most common questions about working with PPMS, including how to ask for support and when it might be time to make a change.
Not necessarily. Many people do think about stepping away from work after receiving a diagnosis of PPMS. However, the National MS Society indicates that with the right accommodations and support, people with MS can continue working.
Research shows that while many people with MS may find holding down a job challenging, especially as the condition progresses over time, some remain in employment for years after diagnosis.
A 2023 cross-sectional study in Italy reports that 90% of people with MS were working when they received a diagnosis, and 20% to 40% continued to work afterward. The study noted that reducing hours, changing roles, or getting help managing symptoms like fatigue or mood changes helped them continue working productively.
Your doctor can help you determine whether your current job is safe or manageable as your symptoms change. They may also connect you with physical or occupational therapy, mental health support, or workplace accommodations to help you stay in your role longer.
Start by taking an honest look at how your symptoms affect your work.
Start by making two lists. On the first one, note down your job’s key responsibilities, and list the symptoms you’re experiencing on the second one. Then ask yourself whether these symptoms affect how you carry out those tasks.
If the answer is yes, it doesn’t automatically mean you can no longer do your job. It is possible to remain employed with PPMS.
However, it may be time to consider adjustments. You could talk with your manager about modifying your duties, switching to a more flexible schedule, or exploring reasonable accommodations to help you manage your workday successfully.
If your symptoms continue progressing or changes at work aren’t helping, you might consider exploring other roles that better match your abilities and needs.
You’re not legally required to tell your employer that you have PPMS. And if you’ve just received a diagnosis, it’s completely natural to feel unsure about sharing that information.
However, letting your employer know could lead to helpful accommodations that make your job more manageable. Under the Americans with Disabilities Act (ADA), it’s against the law for an employer to fire or discriminate against someone because of a disability — this includes PPMS.
It’s a personal decision, so take your time. Talk with your doctor, and consider what kind of support you might need at work before deciding how to proceed.
Under Title I of the ADA, your employer must provide reasonable accommodations if you have a disability like PPMS unless doing so would cause undue hardship for the business.
To get accommodations, you’ll need to tell your employer or someone in the human resources department about your condition. You don’t have to share every detail, but it is important to be honest about how your symptoms affect your work and what support you might need.
Accommodations can include a more flexible schedule, extra breaks, assistive technology, or changes to your workspace. Your doctor can also help by writing a letter that outlines your medical needs.
If you’re not sure where to start, the Job Accommodation Network offers free advice and resources.
Reasonable accommodations are changes that help you do your job without causing hardship to your employer. These can vary depending on your needs and the nature of your work.
Some examples of workplace accommodations that may help people with PPMS include:
- the option to work from home
- switching to part-time or flexible hours
- assistive technologies, like voice-to-text software
- reserved or closer parking spaces
- office changes to make room for a wheelchair or mobility aid
- restroom modifications, such as grab bars or automatic hand dryers
The ADA doesn’t require an employer to make changes that would cause hardship, meaning they have no obligation to create a new role or provide personal mobility devices, like a wheelchair or scooter. However, most accommodations are simple, affordable, and can help people with PPMS stay productive at work.
PPMS symptoms like severe fatigue, depression, and difficulty thinking clearly can sometimes make it harder to stick to your work schedule. You might need to take more breaks, come in late, or take whole days out when symptoms flare.
You may also need time off for doctor’s appointments, physical therapy, or occupational therapy. These changes can impact your schedule. However, with the right support and accommodations, many people with PPMS are able to keep working in a way that fits their needs.
PPMS tends to affect the spinal cord more than the brain, which can lead to walking difficulties as the condition progresses. However, when and how that happens varies significantly from person to person.
Not everyone with PPMS will have difficulty walking at work. And if walking becomes harder, physical therapy and mobility aids can help you stay active and independent in the workplace.
If your role involves a lot of moving around, talk with your doctor and your employer about ways to adapt your workspace or duties so you can stay safe and comfortable at work.
PPMS is a progressive condition, which means symptoms usually worsen over time rather than in sudden relapses like other forms of MS. By the time you receive a diagnosis, you may have already been managing symptoms at work without realizing it.
How quickly MS affects your ability to do your job effectively depends on several factors, including the kind of work you do and how your symptoms present. Some people experience walking or thinking difficulties early on, while others may notice more gradual changes.
There’s no one-size-fits-all career path for people with PPMS. The best job for you is the one that fits your interests, strengths, and current abilities. It’s also one that you feel safe and confident doing.
Many people with PPMS thrive in fields like business, education, tech, customer service, or creative work. Some prefer remote or flexible jobs that allow them more control over their schedule and environment. Others stay in hands-on roles by making adjustments or shifting responsibilities.
Technically, no job is off-limits to people with PPMS. The key is finding a role that works for you and being open to changes or accommodations that support your success.
Deciding to stop working because of PPMS isn’t easy. For many, it’s a last resort after trying accommodations and other adjustments.
If symptoms make it too difficult to keep working, you may qualify for Social Security Disability Insurance (SSDI) benefits. These benefits can help pay for basic living expenses if you’re unable to work due to your condition.
Your doctor can support your application with medical documentation and may also connect you with other helpful resources, like vocational rehab or financial assistance programs.
If you need to step away from work, it can take time to adjust, especially if your job is a significant part of your identity. But there are still meaningful ways to stay engaged, supported, and active. You might consider:
- focusing more on self-care and symptom management
- keeping in touch with friends or colleagues from work
- exploring volunteer opportunities that match your skills but come with fewer demands
- rediscovering hobbies or interests you may have set aside
Leaving work doesn’t mean losing your sense of purpose. This new chapter in your life may look different, but it can still offer connection, balance, and fulfillment.
A diagnosis of PPMS can bring changes to your work life, but it doesn’t mean your career is over. Many people with PPMS continue working with the help of accommodations, flexible schedules, and supportive care.
It’s OK if your needs shift over time. Whether you stay in your current job, change roles, or eventually step away from work, you have options and rights to help guide your next steps.
Talk with your doctor, explore workplace accommodations, and don’t hesitate to reach out for support. You don’t have to navigate PPMS and work alone.