If living with multiple sclerosis (MS) makes it hard for you to keep up with the demands of a full-time job, you’re not alone. For some people, taking a short-term sick leave during MS flare-ups — as well as requesting workplace accommodations like changes to duties or work hours — can help. Others find it best to stop working entirely.

Changing your employment status can be a tough decision. Your health and well-being should come first, but it’s also normal to worry about money, health insurance, and the social aspects of having a job.

“I’m currently on an unpaid leave of absence from work,” one MyMSTeam member wrote. “Despite the financial strain, it has been amazing to sleep when I need to and eliminate the stress of my job from the MS mix.”

Here are some factors to consider if you’re thinking about making a work-related change.

Can You Still Work With MS?

Some MS symptoms can affect your ability to work. These include:

• Fatigue
• Muscle weakness
• Vision impairment
• Cognitive (thinking) problems

According to some studies, people with MS miss twice as many workdays as those without MS. Nonetheless, researchers have found that 41 percent to 48 percent of people in the United States with MS are employed at any given time. Employment rates are lower (under 7 percent) among people with severe and progressive MS compared with those who have very mild symptoms (76 percent).

Taking Time Off for MS

In the United States, no federal laws require employers to provide paid time off for sick leave. It’s important to understand what options your employer offers. Your employment contract should outline the process for requesting time off and explain if it’s paid.

If anything isn’t clear, ask your human resources department or supervisor up front. Getting this information when you’re feeling well will help you avoid scrambling during a flare-up.

What Is Family Medical Leave?

If your job doesn’t include paid time off, you should read up on the Family and Medical Leave Act (FMLA). This federal law protects your job and employer-provided health coverage for up to 12 weeks a year. However, your boss isn’t required to pay you for this time.

Most people associate FMLA with having a baby. However, it’s also available for caregivers and people who need time off because of a medical condition.

To qualify for FMLA, you need to have worked for your current employer for at least 1,250 hours (around 32 40-hour workweeks) over the past 12 months. You also need to work at a location where your job has at least 50 other employees within 75 miles. Although FMLA is unpaid leave, it can help guarantee that you won’t lose your job or insurance if you need time off.

Requesting Accommodations, Including Shorter Hours

Communicating with your employer can help you be more productive and successful at work. Under the Americans With Disabilities Act (ADA), employers are required to make “reasonable accommodations” for workers with disabilities. These accommodations may include:

• Modifying your work hours
• Changing some of your job functions
• Providing or modifying office equipment or devices — or allowing you to provide your own

You can help by offering specific suggestions for work accommodations so your employer understands what you need.

Based on a large review of studies, including more than 30,000 people with MS, the most commonly required accommodation was related to workload management. Many people with MS need accommodations beyond the physical aspects of the job. They may benefit from schedule flexibility or the opportunity to work from home.

You may also want to consider reducing your hours or switching to part-time work, but keep in mind that this change may affect your pay and access to health insurance.

What Members Say About Working With MS

Some members of MyMSTeam have found solutions with their employer’s support. “I was with this company for two years when I was diagnosed with MS. I was open about my MS from the beginning. They offered me telework back in 1974 and provided me a desktop computer,” one member shared. “A few years later, they built a six-building campus. Human resources and the Office of Civil Rights had me go through the entire new campus to ensure that everything was disability-accessible. I worked there for a total of 40 years, retiring in December 2012 with a full retirement.”

However, not everyone described a positive experience. “I’ve been out of work for almost two years now. My job decided to let me go while I was on FMLA,” another member said. “I wasn’t called or told by management. Instead, I received an email on a Friday evening when everyone left for the weekend that I was, as they call it, ‘terminal administratively fired.’ Then, when I went to return the building keys and card, they acted surprised that I was let go due to my health condition.”

Should People With MS Work?

Only you and your MS care team can decide if working is best for you. You’re more likely to stay employed if you focus on problem-solving and what you can do (versus what you can’t).

There may come a time when taking a step back is the best option for your physical or mental health. If you’re not satisfied with your current work environment and don’t believe changing careers is doable, you can prepare to leave the workforce.

Deciding To Leave Your Job

People with MS may choose to quit a job or retire early for various reasons, especially as the disease progresses. “I had to leave work because it was dangerous to continue. I could hardly walk,” one member shared.

A study on job retention found that people with MS were more likely to leave physically demanding jobs — those that fall into the category of “production/transportation/materials moving” — than “professional/managerial” jobs. For example, an employer may not be able to accommodate a physical disability if the job requires lifting heavy objects or climbing a ladder.

Is Working Too Stressful?

It’s important to manage your stress levels when living with MS. Stress is known to trigger MS relapses and worsen symptoms.

Mental stress plus MS-related physical symptoms can sometimes push people out of the workforce. “I left my job and went on Social Security disability 17 years ago,” one member said. “It was a fight to get it. I used to be a telephone rep in a very busy call center for a utility company. It was over an hour away, and we answered emergency calls and billing and service. People were mean and nasty. I was always stressed. I was in pain all the time, exhausted from traveling, blind in my left eye, and my speech was messed up (still is). It was not good.”

Making the Right Decision for You

If your MS makes it difficult for you to work, talk with your healthcare team. They may be able to offer solutions to help you stay at your job. They can also help connect you with resources to transition to unemployment.

Finding Financial Support

You’ll need to keep medical and employment records organized when you have MS. If you stop working and want to apply for disability benefits such as Social Security Disability Income (SSDI) or Supplemental Security Income (SSI), you’ll need documentation.

“I recommend having all of your medical reports in order when applying for SSDI,” one MyMSTeam member advised. “Go back in time and collect everything. After filing, you will get a letter within 30 to 45 days stating something about requesting reports from your doctors. Do not wait. You should have collected all your records by now, so call Social Security and request an appointment to drop off your reports.”

Adjusting to Life Without Work

Unemployment can affect quality of life for people living with MS, increasing the risk of low self-esteem and depression. Staying socially connected — through volunteering, joining an MS support group, or starting a new hobby — can help.

This is also a good time to focus on your well-being by keeping a regular sleep schedule, eating a balanced diet, and staying physically active when possible. Not working may offer a chance to reset priorities and put your health first.

Join the Conversation

On MyMSTeam, people share their experiences with multiple sclerosis, get advice, and find support from others who understand.

Has your MS diagnosis affected your type of work, work schedule, or decision to work full-time? Let others know in the comments below.