Multiple sclerosis (MS) can get in the way of a person’s ability to live their day-to-day life, including doing their job in the same way they once did. The impact and symptoms of MS can affect a person mentally, physically, and emotionally. All of these elements can make navigating employment more challenging. Sometimes, MS can make employment virtually impossible.
MS is an inflammatory chronic disease and an autoimmune neurological disorder that affects the central nervous system (CNS). It most often affects people aged 20 to 40 years — typically the time in life when we find our societal footing and experience the greatest career progression.
Some people have mild symptoms that affect their careers minimally, if at all. “I was diagnosed with relapsing-remitting MS (RRMS) in 1974. Other than five days in the hospital being diagnosed, I did not take any time off work,” one member of MyMSTeam shared. “I worked in an IT environment with the same company for the next 38 years and retired in 2012.” Other people’s symptoms are so severe they can hardly make it through the workday — or even make it to work. Most people cite a combination of the many physical, cognitive, and emotional symptoms of MS as the reasons for leaving their jobs.
Cognitive symptoms such as poor concentration, forgetfulness, and “MS brain fog” are common among people living with MS. Cognitive deficits can affect verbal fluency and short-term memory. These symptoms can both compound and be exacerbated by fatigue, muscle spasticity, and depression.
Fatigue, which affects 90 percent of people with MS, is the single, most frequently cited MS symptom that causes work difficulties and unemployment. Fatigue not only has a large impact on a person’s ability to do their job, but on their general quality of life and their MS symptoms overall. The constant, chronic extreme tiredness often leads to an inability to endure work requirements such as physical demands and long work hours. “I expended all my energy levels having a shower and getting dressed for work. Now that I am at work, it has been hell,” explained a MyMSTeam member of her struggles with MS-related fatigue. “No energy + meds not working = EXHAUSTED.”
Studies estimate that between 50 percent and 70 percent of people with MS report falls within the past several months. About 30 percent of those people reported falling multiple times, with injuries sustained from those falls. “I work full-time and I have a diagnosis of multiple sclerosis. Because of numbness and weak legs, I was falling on my face at work — it was driving the security team crazy,” a member shared about her mobility challenges at work. “Finally, I got a walker — it helps so much! Makes me feel old before my time, but it helps with the pain and my balance.”
Symptom management is an important factor in determining how long or how well a person with MS can continue to work. Symptom severity directly affects one’s capacity and ability to perform their job. Vocational rehabilitation counselors are trained to provide resources and techniques that can help people with MS adapt to performing jobs. These tips can help you manage your MS symptoms and your work:
MS commonly requires changes to or limits on one’s abilities to consistently do the same tasks or the same amount of work. A survey asked 11,515 people living with MS about their employment experiences with the condition. Nearly 3,000 (39 percent) of respondents were unemployed. Of those, 21 percent became unemployed due to MS within the first three years of their diagnosis and 34 percent were unemployed within 10 years. Other studies have estimated that between 43 percent and 67 percent of people were unemployed due to MS-related factors within 12 to 15 years from diagnosis.
See what MS specialist Dr. Aaron Boster says about navigating employment with MS.
Not only do your symptoms factor into your work capacity and the type of work you can do, where and how the work is done can affect your symptoms. Your workplace — the nature, culture, and environment of work (such as unpredictable workloads, lack of rest time, and physical temperature or exposures) — can also affect your MS symptoms and disease progression. Work can also be a big source of stress, a likely MS trigger and a factor that can worsen MS symptoms. Make sure you assess whether your workplace is as good for your physical health as working is good for your mental health.
The unpredictability of MS and the many factors at play can make it hard to evaluate and forecast your capacity to work. Many different factors and dependencies in every individual MS case affect one’s ability to work. For instance, age at diagnosis, duration of illness, type of MS, gender, and severity and extent of symptoms can all play a role.
There is plenty of data that show substantial positive results associated with maintaining work when you have an MS diagnosis. A member of MyMSTeam shared, “I have to continue to work, it keeps me sane!” People with MS who were employed, when surveyed, described work as a “positive life event” — including not encountering many barriers in the workplace (accessibility, workplace support, and self-esteem). They also reported being engaged in life activities and community participation in comparison with peers who were not employed.
Not every person with MS experiences the condition the same way or has the same symptoms. MS can be an unpredictable disease and can even affect the same person differently from relapse to relapse or even day to day. Vocational rehabilitation therapists may be able to help you explore career options or positions that better accommodate a person living with various MS symptoms. “I have moderate MS, but it’s debilitating enough that continuing full-time work was no longer a possibility,” a MyMSTeam member said about how MS had an impact on his career. “I am blessed though, I can function in a more relaxed unstructured environment. It’s ideal for volunteer work!”
Read more about career options for those with MS here.
“MS and work is hard,” a MyMSTeam member said frankly. When MS forces a change to such an important facet of one’s life, such as one’s career, it is important to develop and use strategies to adjust to the major changes that MS can bring. A study of a small sample of 68 women found that those who left work for MS-related reasons adopted maladaptive coping strategies, such as substance abuse and engaging less in their day-to-day lives, than their employed counterparts.
Being diagnosed with and managing a chronic illness such as MS is stressful. “MS is a full-time job,” said a MyMSTeam member. Work can add to that stress with detrimental effects. Stress is believed to be a trigger for MS flares and can exacerbate one’s existing MS symptoms. Stress can add to the risk of mental and emotional illness, of which people with MS are at greater risk. Mental health issues can exacerbate MS symptoms (especially fatigue) and greatly affect quality of life. People with MS are said to be three times more likely to experience clinical depression. A study found that people with MS who followed a stress management program experienced fewer symptoms of depression.
Finding effective strategies to reduce and manage stress at work is even more vital when you are living with MS. Some stress management and mental health tools to consider include:
There may come a time when you need to have a conversation with your employer. These resources about discussing MS may be helpful:
People with MS have legal protections from discrimination by the Americans With Disabilities Act (ADA), the Family and Medical Leave Act (FMLA), and other government legislation. Your employer has a legal obligation to provide reasonable workplace accommodations for you and your medical condition.
Reasonable job accommodations are the adjustments and equipment an employer is obligated to implement to enable a person with a disability to continue their employment. A MyMSTeam member wrote, “Tomorrow, an organization will come in, assess my workstation, and provide me with more suitable items that will make it easier for me to work.” Reasonable accommodations can include ensuring workplace accessibility, providing adaptive workstation equipment, and modifying schedules. They can also include assigning a person to another role within the same organization.
You do not have to disclose your health status, diagnosis of MS, or any other medical information (1) until you are ready and decide to do so or (2) unless you are requesting reasonable accommodations.
Try to assess your employer’s willingness and ability to accommodate the workplace needs of a person living with MS. Research suggests there could be a relationship between having the support of one’s employer and colleagues and disclosing one’s MS diagnosis earlier rather than later in your disease course. Every situation is different.
Before you decide to discuss your MS with your employer, educate and inform yourself of your rights in the workplace. The Job Accommodation Network (JAN) is a great resource for navigating employment with MS. You should be prepared to talk with your employer or human resources (HR) representative about:
Regardless of how MS has an impact on your ability to do your job, you have a right to the same opportunities as staff without disabilities.
It is hard to know what to expect or when it is time to adjust your employment. Your health care team is experienced and can likely advise you well. Work closely with your neurologist and other doctors involved in your MS treatment to help you prepare for a chat with folks at work. A MyMSTeam member who has been living with MS for decades offered some sage advice: “Whatever your choice, evaluate your true physical and psychological capacity. Having strong strategies in place will help with all your ambitious goals.”
Read more about workplace accommodations for those with MS.
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 167,000 members come together to ask questions, give advice, and share their stories with others who understand life with multiple sclerosis.
Are you living with multiple sclerosis and dealing with employment issues? Share your experience in the comments below, or start a conversation by posting on your Activities page.