The following post was authored by Steven Nissen, M.S., CRC and is being shared with permission from our partner, National Multiple Sclerosis Society.
MS affects more than 2.3 million worldwide.
If you have met one person with multiple sclerosis (MS), then you have met one person with MS — as no two people’s experiences are the same. MS is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms vary from person to person and range from numbness and tingling, to walking difficulties, fatigue, dizziness, pain, depression, blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted.
Most people with MS are diagnosed between the ages of 20 and 50 — prime career years! — with at least two to three times more women than men being diagnosed with the disease. At this age, many people have already completed their advanced training/education, have been working and moving up the career ladder = they bring a wealth of experience.
Best practice: Foster an environment of openness and support
Disclosure can be very stressful for someone with MS, especially considering the symptoms listed above — oftentimes “invisible.” The reality is that hidden symptoms cause just as many — even more — limitations as visible ones. Employees may grapple with the legal reasons for disclosing: primarily to ask for an accommodation. But they may also consider the practical reasons for disclosure/not, including but not limited to:
- Perception by others “But you look so good” prevents acceptance of hidden disabilities as real
- Being seen as different or getting preferential treatment
- Am I being dishonest? Feeling the stress of not telling others
Disclosure can be positive:
- Reduces stress
- Educate others about MS and adult-onset disabilities
- Allows individual the opportunity to ask for accommodations now or in the future
- May be freer to examine health insurance and other benefits
- May simply feel more comfortable
Or negative:
- Stress: who do I tell? When? Will they tell others or keep my disclosure confidential?
- Fear of rejection…ultimate fear of losing job
- May fear being pigeonholed at work
- Don’t want to be seen as different or weak by others
- Might want to maintain privacy
Disclosure is a personal decision. If your employee comes to you with this personal disclosure, be sensitive and understanding.
Best practice: Keep the disclosure confidential and determine who needs to know that information
Now that you know, how can you best support people living with MS in the workplace? Many people living with MS want to work and continue to work despite their symptoms; many symptoms can be managed on the job with accommodations (including computer and other forms of assistive technology, proper ergonomic work station set-up, arrangement of workspace by task frequency and priority, flexible work schedule such as telecommuting or altered hours, elimination of distractions/clutter that might impair attention and other cognitive functioning). Type of and need for accommodations may change over time as symptoms change, or when person experiences an exacerbation, or when the job situation changes. Variability of symptoms may require accommodations to change from time to time.
Best practice: Be supportive if employee discloses but requests no accommodations at present time
Employees with MS are looking for employers who are receptive to disability and diversity. Even though self-identification and self-disclosure may be done for different reasons, employees are looking for forward thinking and inclusive employers.
Best practice: Be open to questions about employer-sponsored benefits and protections including the ADA, FMLA and disability
Understand that employees with MS may need to utilize the Family and Medical Leave Act (FMLA) and tap into the Americans with Disabilities Act (ADA) more often than employees without disabilities. FMLA can ease missed work during the diagnosis process, an exacerbation, a difficult new treatment and more. ADA provides support for disclosure and accommodations. There are many resources available — use them and share them:
- Job Accommodation Network, http://askjan.org, 1-800-526-7234
- ADA National Network, http://www.adata.org, 1-800-949-4232
- Employee resource groups; centralized accommodation fund
- National MS Society Accommodations Publication
Connect with National MS Society resources to help you attract, hire, support and retain people with MS:
- nationalMSsociety.org, 1-800-344-4867
- nationalMSsociety.org/employment
- National MS Society employment-related brochures and publications
Steve Nissen is Senior Director, Benefits and Employment with National Multiple Sclerosis Society. In that role, he leads the nationwide work in ensuring people affected by MS throughout the country connect with health insurance, benefits and employment information and resources. Steve has been with the National MS Society since 1998, originally with the National Capital Chapter in Washington, DC where he oversaw the chapter’s comprehensive employment and benefit assistance program. Prior to joining the National MS Society, he worked for the Virginia Department of Rehabilitative Services (DRS), the state vocational rehabilitation agency, and also worked for a private vocational rehabilitation and case management company where he provided job development and placement assistance to individuals with physical disabilities. Steve has a Bachelor’s degree in psychology from James Madison University, a Master’s degree in rehabilitation counseling from Virginia Commonwealth University – Medical College of Virginia, and is a Certified Rehabilitation Counselor (CRC). Steve co-authored Employment Issues and Multiple Sclerosis, 2nd edition.
