If multiple sclerosis (MS) symptoms are making it difficult 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.
Taking sick leave, cutting back hours, or leaving the workforce are all major decisions. On the one hand, you need to take care of your health and well-being. On the other hand, you may have worries about the financial implications and access to health care if your insurance is tied to full-time employment. Leaving your career may also affect your self-esteem and well-being.
“I’m currently on an unpaid leave of absence from work,” wrote one MyMSTeam member. “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.”
In this article, we’ll look at some factors to consider as you weigh whether it’s time to reduce your work hours or leave your job entirely.
Working full time with a chronic disease like MS can be difficult with symptoms including fatigue, physical challenges such as weakness and vision impairment, and cognitive problems like memory or processing information.
Researchers have found that 41 percent to 48 percent of people in the United States with MS are employed at any given time — and employment rates are particularly low among people with severe and progressive MS (under 7 percent) compared to those with very mild symptoms (76 percent).
People with MS tend to miss more workdays than people without the condition, with some studies from the journal Research in Social and Administrative Pharmacy indicating they miss work twice as often. In addition, one small-scale study found that about half of people with MS reported feeling that their condition negatively affected aspects of their work life, making it more difficult to change jobs or find a new job.
In the United States, there are no federal laws requiring your employer to provide paid time off if you’re sick, so it’s important to understand what options your employer offers. Your employment contract should outline the process for requesting time off and explain whether you can expect to be paid. If anything is unclear, it’s a good idea to talk to someone in your human resources department or ask your supervisor right away. Getting this information when you’re feeling well will prevent you from scrambling during a flare-up.
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 per year, although your employer isn’t required to pay you. Most people associate FMLA with having a baby, but it’s also available for caregivers and individuals who require time off because of a medical condition.
To qualify for FMLA, you’ll 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’ll 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.
If you’re preparing to return to work after taking time off, you may want to discuss changes your employer can make to 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:
Coming up with suggestions for work accommodations to share with your employer can help them understand what you need.
Based on a review of studies from the Journal of Occupational Rehabilitation, which involved more than 30,000 individuals living with MS, it was found that the most commonly required accommodation among the participants was related to workload management. Many people with MS require accommodations beyond the physical aspects of the job, including 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.
One MyMSTeam member had a great experience collaborating with their company to find ways to remain working for decades with MS: “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,” they 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.”
Other MyMSTeam members have had less positive experiences. “I’ve been out of work for almost two years now. My job decided to let me go while I was on FMLA. 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.”
Focusing on your abilities rather than disabilities and trying to maintain a problem-solving mindset can increase your likelihood of staying employed. Nonetheless, 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 a viable alternative, you can prepare to leave the workforce.
People with MS may choose to retire early or quit their jobs for various reasons. As the disease progresses, people are more likely to cut back or stop working. One member shared, “I had to leave work because it was dangerous to continue. I could hardly walk.”
A 2022 study from the journal Archives of Physical Medicine and Rehabilitation looked at job retention among people with MS living in the southeast region of the United States. The study 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.
It’s important to manage your stress levels when living with MS. “Studies show that negatively experiencing stress can affect MS relapses and worsen MS symptoms,” according to the website Overcoming MS.
Sometimes, a person may need to leave a job because of psychological stress as well as MS-related physical symptoms, such as fatigue and vision problems. “I left my job and went on Social Security disability 17 years ago,” shared one member. “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.”
Deciding to leave your job is a big decision. It’s a good idea to discuss your concerns with your neurologist for feedback and support. Your health care team may be able to offer solutions to help you stay at your current job or resources to help you make the transition to unemployment.
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,” wrote one MyMSTeam member. “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.”
Unemployment may reduce the quality of life for people with MS and increase their risk of depression. Finding fulfilling opportunities to stay connected to others and do things you enjoy can help ward off the blues. You can try volunteering, getting involved with an MS support group, or picking up a new hobby. Be sure to maintain a regular sleep schedule, eat a healthy diet, and try to get physical activity when possible.
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 196,000 members come together to ask questions, give advice, and share their stories with others who understand life with multiple sclerosis.
Has your MS diagnosis affected your type of work, work schedule, or decision to work full time? Do you have experience asking for workplace accommodations or applying for disability benefits? Share in the comments below, or start a conversation by posting on MyMSTeam.