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| MS in focus Issue
16
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2010
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Deanna Groetzinger, Vice-President,
Government Relation and Policy, Multiple
Sclerosis Society of Canada |
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“Will I be able to keep working?” This is a commonly asked question after being told “you have multiple sclerosis”. The answer for most people with MS is “yes”. But this raises the question of whether or not to tell employers and colleagues.
Reasons for disclosing
There may come a time when a person with MS requires a number of changes in the workplace to be able to continue to do the job and therefore needs to disclose their MS. It may also mean the person is covered by insurance if an accident were to happen at work.
Points to consider before disclosing are: - l Know the legal rights in your country concerning amendments in the workplace for people with disabilities;
- l Think about what workplace changes would make it easier to do the job;
- l Seek advice from the local MS society or from others who have had similar experiences.
In many countries and for most jobs, people are not legally required to disclose the diagnosis or discuss their medical condition in order to be able to make amendments to their workplace. There are some occupations for which a medical exam is required as a condition of employment, for example an airline pilot or firefighter. Otherwise, the only questions an employer can legally ask about an illness or disability are those relating to the ability of the employee to perform the essential duties of the job.
A good strategy for disclosure is to rehearse the main points in advance, and to consider the questions an employer might ask. This way, a disclosure can be prepared, positive and confident, not apologetic.
When requesting workplace amendments, a person with MS could describe the current limitations of the job and make suggestions as to how those limitations could be minimised by appropriate changes. For example, if fatigue is a problem, asking to be able to work from home one day a week or have flexible work hours to avoid traffic congestion are practical solutions with little or no cost.
It is positive that in many countries, there are laws to protect from on-the-job discrimination after disclosure. In addition, employers are beginning to appreciate the skills that people with MS bring to the job and are not just focusing on the disease or the disability.
When to disclose
The best time for a disclosure of MS is before the employer becomes aware that workplace changes might be necessary and before there is any concern about job performance. Lapses at work are more often noticed than not. Being proactive and positive should assist in preventing negative reactions and emotional stress.
Reasons for not disclosing
There are good reasons, as well, for not disclosing a diagnosis for MS. In most cases, these would apply to people whose MS symptoms are not visible. If MS does not affect job performance and no changes to the workplace are required, there is often no reason to share information.
In some cases, people with MS may be concerned their employer and co-workers will react negatively, and fear that disclosing their MS might jeopardise their job or adversely affect work relationships, even if they are protected by legislation.
Being a job candidate
It is far easier, in most cases, to continue in a job than to find a new one, but the issues facing a person with MS who is looking for a job are similar to those of other employees. For someone with invisible symptoms, there is no requirement to disclose the MS diagnosis, unless a medical examination is mandatory. For someone with visible symptoms, it is not necessary to disclose the diagnosis; discussion should focus instead on positive aspects including the skills the person would bring to the job. Accommodating any disability can also be broached in a positive manner.
Examples of disclosure issues
Carol has worked for a government agency all of her career. Diagnosed when she was 35, she disclosed immediately that she had MS as she had to take a month off work.
“I’m lucky because my workplace is covered by an Employment Equity Act. They have to accommodate you,” she said. “Some of the people in my MS support group don’t have that.
They worry about disclosing because they fear they could lose their jobs.”
Carol’s MS symptoms are invisible and most of the time she needs few adaptations. However, she did request and receive amendments when she was competing for another job within the organisation.
Because she couldn’t write with a pen, she was allowed to take the three-hour test separately and to use a computer. Carol obtained the promotion and now heads an eight-person team.
Sharon (pictured below) had her first MS attack at age 18 while working at a summer job. “I had to quit that job, and no, I didn’t tell them why,” she said. Sharon’s approach has been not to disclose throughout her career, although she didn’t hide the fact she has MS. To her, it was not relevant to the kind of work she did. She decided that selfemployment and part-time jobs were best, especially after she became a single mother of three daughters.
“I taught part-time at colleges and did freelance writing and editing for many years. Even after I started using a cane, I didn’t tell people it was because of MS,” she said. Her most recent job was with an MS society where she had been a volunteer. “My symptoms were progressing, and I needed a steady job with benefits.
They welcomed the fact that I had MS so itworked well.”
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