05 Employment

Multiple sclerosis (MS) can cause a wide range of symptoms that may impact a person’s activities in the workplace, including fatigue, changes in thinking and memory, mood changes, visual problems, reduced mobility, balance, and strength, and bladder or bowel difficulties. Depending on the severity of the symptoms and type of work one does, a person’s ability to work may be unaffected or severely limited. And given the variability of MS symptoms, work activities may be affected more on some days than others.

For all these reasons, it is to your benefit to think proactively about the ways in which your MS symptoms are impacting your current employment or may impact it in the future. Whenever possible, you want to stay one step ahead of your manager – in recognizing the ways in which your productivity on the job is being affected by your symptoms, taking steps to optimize your performance, and requesting job accommodations that can help you be a productive and successful employee. This will not only help you to stay in the workforce as long as you want to and are able, but will also contribute to your self-confidence, self-esteem, financial wellbeing, and your health benefits. The work we do is a core part of our identity and a major source of satisfaction in our lives.

Three MS symptoms, in particular, have a major impact on a person’s ability to remain in the workforce – fatigue, changes in thinking and memory, and mood changes.

Fatigue

  • Fatigue is the most common symptom of MS (75-83%) and is reported by many people to be the most disabling of their symptoms.
  • In MS, there are many sources of fatigue:
    • Primary fatigue – also called lassitude – is thought to result from demyelination in the central nervous system.
    • Secondary fatigue can have a variety of causes:
      • Disrupted sleep
      • Depression
      • Physical deconditioning from reduced exercise and physical activity
      • Medication side effects
  • Treatment involves identifying and addressing all of the sources of a person’s fatigue. Medications are available to help with primary fatigue, but exercise and physical activity are an essential part of treatment.

Cognitive Changes

  • At least 65% of people with MS experience cognitive changes
    • Slowed information processing, impaired learning and memory, problems with attention and concentration, impaired “executive functions" (planning, prioritizing, problem-solving, decision-making, judgment.)
  • Cognitive changes are unrelated to a person’s level of physical disability; they can even appear as a first symptom of MS. However, these changes are most common in progressive MS.
  • Cognitive changes generally progress slowly, which allows ample time for learning compensatory strategies.
  • Screening at the time of diagnosis and yearly thereafter can help to identify cognitive changes.
  • A full neuropsychology test battery is essential for any person who is applying for Social Security Disability on the basis of cognitive impairment.
  • The optimal treatment for cognitive changes is cognitive rehabilitation, which provides direct retraining of affected cognitive functions as well as compensatory strategies to enhance everyday functioning.

Mood Changes

  • More than 50 percent of people will experience major depression, which has multiple causes in MS – including changes in the brain and the immune system, as well as the psychosocial challenges of the disease.
  • Depression makes other MS symptoms feel worse, including fatigue, pain, cognitive problems.
  • Depression can appear as irritability or moodiness, which can make the diagnosis more challenging.
  • In MS, depression is under-recognized and under-treated, which increases the risk of suicide in people with MS. Depression is also under-recognized and under-treated in support partners.
  • Anxiety is equally common in people with MS and support partners.
  • Screening is recommended at the time of diagnosis and periodically thereafter.
  • The treatment options for mood changes include talk therapy, medication, and exercise – which are best when used in combination.

Recognizing the Impact of MS Symptoms on Your Work Performance

It is in your best interest to think proactively about the impact of your symptoms on your work performance.  Use this form to list your symptoms and rate the degree you think each symptom affects your daily work activities: Analyzing the Effects of MS on Work. Revisit the form periodically to assess changes in your performance.

Become familiar with and get educated about your rights and responsibilities under the Americans with Disabilities Act (ADA).  This civil rights legislation protects against discrimination of people with disabilities in a variety of settings, including employment.  Key components of the ADA pertain to disclosure and the right to request reasonable accommodations. 

Requesting Reasonable Accommodations in the Workplace

  • The purposes of accommodations is to allow an otherwise qualified person to enter or continue in employment by removing or reducing significant disability-related work limitation(s). Accommodations increase productivity.
  • Employers only have to provide accommodations for known disabilities, and they are only required to provide “reasonable accommodations” that do not place too much of a burden on the employer/company.
  • No two situations are exactly the same and a person’s needs may change over time as symptoms evolve or a person is having an exacerbation.

Here are examples of reasonable accommodations for the three most common, invisible symptoms of MS:

It is important to remember that the responsibility for coming up with accommodations falls on the employee.  However, it is supposed to be an interactive process between employee and employer.  Plan ahead and have back-ups in mind.  Make the request a “win-win” for both you and your employer. 

Making the Decision to Disclose to One’s Employer

Disclosure decisions are very personal. One person may choose to disclose to her/his employer while someone else does not. Keep in mind, however, that in order to request an accommodation from your employer or request short-term medical and/or disability leave (for example, for an exacerbation) you must disclose that you have a disability. And at some point, you may need to explain that you have MS.

There are several resources available to help you make disclosure decisions and to make requests for reasonable accommodations.