Having primary progressive multiple sclerosis (PPMS) can warrant adjustments to various aspects of your life, including your job. In severe cases, PPMS can make it challenging to work. According to an article in the International Journal of MS Care, PPMS causes a higher likelihood of not being able to work compared with other forms of MS.
However, this doesn’t necessarily mean you have to stop working altogether. Here are the answers to some of the most common work-related questions about PPMS.
Do I need to quit my job after my diagnosis?
No. In fact, the National MS Society suggests this is one of the most common mistakes made by those who’ve just received a diagnosis. Symptoms can progressively worsen with this type of MS, but this doesn’t necessarily mean you have to leave your job right away.
Your doctor will offer guidance when it comes to your career and PPMS. If they feel that your job is unsafe for any reason, they will provide advice ahead of time.
How do I know if I will need to switch jobs?
A self-assessment can be invaluable in making this decision. First list your job requirements along with what you bring to the table. Then make a list of your symptoms. See if any of your symptoms directly affect your ability to perform any of the work-related tasks you do on a regular basis. If you think PPMS symptoms are starting to interfere with your job, you might consider talking to your boss about modifying your role before leaving your career altogether.
Do I need to disclose my condition to my employer?
There is no legal requirement to disclose a PPMS diagnosis to your employer. You might be hesitant about disclosing, especially if you’ve just received a diagnosis.
However, you could find that disclosing your condition will lead to accommodations you may need on the job. It’s against the law for an employer to discriminate or fire someone because of a disability — this includes PPMS.
Weigh this decision carefully, and ask your doctor for advice.
How do I request workplace accommodations?
Title I of the Americans with Disabilities Act (ADA) not only prohibits discrimination based on disability, but also requires that employers provide reasonable accommodations. To gain accommodations, you’ll need to speak with your employer or a human resources representative at work.
What are considered reasonable accommodations?
Some examples of workplace accommodations that may be helpful with PPMS include:
- work-from-home options
- option to work part time
- assistive technologies
- parking space changes
- office modifications to accommodate wheelchairs
- add-ons to restrooms, such as grab bars and automatic dryers
However, the ADA doesn’t require an employer to make changes that would cause any hardships. Examples include new job creation and providing a personal mobility device.
How else might my job be affected?
Symptoms of PPMS such as severe fatigue, depression, and cognitive impairment may cause absenteeism. You may also need to miss part of your workday due to doctor’s appointments, physical therapy, and occupational therapy.
Will I be able to walk at work?
PPMS causes more lesions on the spine than the brain compared to other forms of MS. This could mean you may be prone to more walking difficulties as the disease progresses. However, the precise timing of this varies, and not everyone will face walking difficulties. Physical therapy can help you maintain your ability to walk. So you may not face any challenges with work-related walking.
How quickly can PPMS affect my job?
Given the fact that PPMS can take a few years to accurately diagnose and that it’s progressive, you have likely already experienced symptoms while on the job. The rate of disability is higher with this form of MS, but early intervention may help slow an early onset. All in all, the effects on your job ultimately depend on the type of work you do, as well as the severity of your symptoms.
A 2013 study of MS patients in Norway found that about 45 percent still worked two decades after initially being diagnosed. Due to disability, the percentage of PPMS patients working was smaller, at about 15 percent.
What are the best career options for people with PPMS?
There are no particular careers best for people with PPMS. Your ideal career is one that you enjoy, have the skill sets for, and can perform comfortably. These can include a range of careers, from business to hospitality, service, and academia. Technically, no job is off-limits. The key is choosing a career you enjoy and that you feel safe doing.
What if I can’t work anymore?
Quitting your job because of PPMS is a difficult decision, and is often a last resort after accommodations no longer help.
People with PPMS commonly need social security disability insurance (SSDI) benefits. SSDI may help pay for basic living expenses if you can no longer work.
Talk to your doctor about other resources that may be available to you if you can no longer work.