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| MS in focus Issue
16
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2010
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Phillip D Rumrill, Jr PhD CRC, Professor
and Director, Center for Disability Studies,
Kent State University, Kent, Ohio, USA |
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Arnold is a 44-year-old man who works as an academic advisor at a community college. He works with students in person, over the telephone and online to help them to select major courses of study, choosing classes pursuant to those majors and preparing for their careers after graduation.
Arnold works full-time, 40 hours a week, on a 12-month basis. His job requires periodic car travel to meetings and conferences in the community, and airplane travel to conferences once or twice a year.
Arnold was diagnosed with MS at the age of 32.
His symptoms are periods of extreme fatigue, numbness and tingling in his left hand, gait problems and problems with short and longterm memory. During exacerbations, Arnold uses accrued sick leave when he is unable to work, a quad-cane for mobility, and a hand-held electronic planner to combat his problems with memory. In fact, he has taken to using the hand-held device at all times. Arnold also asks his employer to make minor scheduling modifications on days when he is working and experiencing fatigue. One such modification involves an extended lunch break so he can go home to have a one-hour nap, returning to work in the afternoon and staying after hours to make up the time.
Arnold has disclosed his MS to his employer, and his supervisor is very supportive. He has chosen not to disclose his MS to his co-workers, although they express concern for his well-being when he takes sick leave. One colleague asked him if everything was okay when he came to work with his quad-cane, to which Arnold casually replied,
“It’s a nerve thing, the cane helps me walk straight.”
Like the vast majority of people with MS across the globe, Arnold is an experienced and welltrained worker who has much to contribute to the labour force. He hopes to work through to retirement age, and he consults his neurologist regularly and adheres strictly to his medication regimen. Thanks to advances in medicine, technology, and laws in his country protecting workers with disabilities and entitling them to reasonable accommodations at work, Arnold’s long-term career prospects are good.
Many people with MS have a successful employment history, just like Arnold. Around 90-95 percent have worked at some time in their lives. Some two-thirds of people with MS were still working at the time of diagnosis. However, as time and the illness progress, there emerges a precipitous decline in labour force participation.
In the US, only about 40 percent of people with MS are currently employed for pay, and estimates indicate that only 20-25 percent will continue working until age 65. Some of the reasons that have been cited for this seeming “mass exodus” from employment include negative attitudes on the part of employers, difficulties in arranging transportation to and from work, functional limitations associated with MS symptoms, the availability of disability benefits, and lack of access to assistive technology and other onthejob accommodations that could enhance productivity and reduce turnover. Studies also show that women, people with lower levels of education, those with more severe and persistent symptoms (such as people with progressive forms of MS), and workers whose jobs require significant physical exertion are more likely than other individuals to disengage from the work force following a diagnosis of MS.
By their own reports, people with MS are gravely concerned about their long-term employment prospects. Surveys of people with MS in a number of countries repeatedly document concerns related to workplace discrimination, the need for information regarding home-based employment, interest in learning more about legal protections and employment-related resources, issues surrounding health insurance coverage and MS speciality care, the need for more widespread availability of assistive technology in the workplace, and the desire for more effective self-advocacy strategies to aid in continuing one’s career.
For specifics about the laws and customs in one’s own country, it is best to contact the MS society and ask for legal and vocational help. Support from other people with MS who have found ways to stay at work could be the most important element, no matter what the local situation is.
Taken in aggregate, the articles in this issue of MS in focus address virtually every employment concern voiced by people with MS as they attempt to resume or maintain their careers while coping with such an intrusive and unpredictable chronic illness. Given the extensive work history that many people with MS can claim to their credit, issues of job retention often arise in vocational services for people with MS. Perhaps the single most common employment-related question posed by people with MS is “What do I have to tell my employer about my condition?” The decision whether to stop working or to continue one’s job as long as possible is an extremely complex one for people with MS and their families. And, considering how MS might affect avocational pursuits, volunteer work or community activities is a critically important part of the effort to live well with MS.
Therefore, articles in this issue related to job retention, disclosure of disability, the decision to stop working, and avocational concerns are especially timely. Experts on these subjects have been commissioned to share their knowledge, and all stakeholders in the employment and quality of life of people with MS are heartily encouraged to thoroughly examine the many and complex work-related issues that accompany an MS diagnosis. Seamless coordination of services among medical, social service and vocational rehabilitation professionals is the ultimate end goal for this journal’s interdisciplinary readership, and people with MS and their families stand to benefit greatly from the enhanced awareness of employment issues that can be gleaned from this issue of MS in focus.
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