More MS news articles for Mar 2002

Should MS patients tell employers?

Published Mar 5, 2002
Paul Levy
Star Tribune
Bob Overturf was between jobs 20 years ago when he sent 85 potential employers his resume, along with a cover letter which noted that he had multiple sclerosis. Several jobs were available. He felt well qualified. But only two companies asked to interview him. The others never responded.

"Would it have been different had I not sent out that cover letter disclosing my problems with MS?" he asked last week. "Should people with MS tell their employers?"

It's a question MS patients, doctors and employers have wrestled with for years, but now, with Sen. Paul Wellstone's disclosure that he has the disease, the debate has spread not only to watercoolers throughout the state, but to the Minnesota Legislature.

"It's none of anybody's business unless it affects your job," said Dr. Randall Schapiro, a University of Minnesota neurologist and director of Fairview Hospitals' multiple sclerosis center.

"When you have an obvious disease, you have to be honest and open and forthright about it. But by sharing it you may create more havoc than you do by not sharing it. In our competitive society, people go after weaknesses -- and by telling the world that you have MS, you become vulnerable in a new way."

But just as every employer is different, so is nearly every case of MS -- and there are 7,500 known MS patients in Minnesota and an estimated 350,000 nationally. It's the variety of MS symptoms and disabilities that make the subject of disclosure so complicated, Schapiro said.

For instance, Overturf, 59, now relies on a cane to walk. But long before he began working for the state in 1990 -- he serves as a liaison between the Minnesota Department of Revenue's petroleum division and other state agencies -- he spent four years in a wheelchair.

Other MS cases may involve slight numbness or dizziness and are less noticeable.

Asking for help

"I still think you should tell your employer," said Overturf, whose MS was diagnosed 28 years ago. "If something happens, you can ask for reasonable accommodation to help you work."

A bill outlining employers' responsibilities concerning employees who disclose that they have MS passed through Senate committees recently before dying -- for this year -- in the House.

Employees have the legal right to "reasonable accommodation" only if their disabilities and needs are made known -- documented, when possible -- to employers, according to the National MS Society. An employer that does not know about an MS case is not legally obligated to provide any type of support or assistance concerning the MS disability.

Other reasons to disclose having MS include the disease's effect on the ability to do a job and the need for assistance and emotional support.

But when Jeanne Voigt, 52, disclosed her "mild" case of MS to her boss at what was then First Bank, she was shocked at the response.

"It was an extremely stressful time at First Bank, with a lot of changeover, and I could feel physically that I was probably going to [have problems]," said Voigt, who experiences occasional dizziness and numbness on one side of her body.

As the stress mounted, she considered taking medical leave -- "which was like admitting a problem." Before leaving, she told her supervisor that she had MS. Her boss responded by challenging her and asking, "How do I know you're telling the truth?"

"It wasn't the kind of response I expected," said Voigt, who left First Bank in 1989 and created MindWare, a local company that sells "brainy toys for kids of all ages."

Full-blown attack

But responses can be as unpredictable as MS, which is not contagious or fatal. MS results when the myelin, a protective cover on nerves in the brain and spinal cord, becomes damaged and scars form. "Multiple sclerosis" means "many scars."

Voigt, who lives in St. Paul, learned she has MS in 1983 after a "full-blown attack." Although she continued to experience blurred vision and numbness to a lesser degree, she went five years before having her second major attack.

Between the episodes, Voigt never missed work. But the occasional blurriness and fatigue made it difficult to focus, she said.

"Incredibly, even with my symptoms, I could manage my life," she said. "And if I couldn't do anything else, I could do my job. At least, I was convinced I could."

There was no reason to tell anyone at work about her MS, other than a few close friends. But when she "felt the symptoms starting" after taking a leave of absence, she resigned from First Bank. The stress of a corporate job no longer was a good fit, she said.

"You should tell people who need to know, but it helps to know the nature of your employer," said Dr. Gary Birnbaum, director of the MS treatment and research center at the Minneapolis Clinic of Neurology in Golden Valley.

"But what about your neighbors, your children?" Birnbaum asked. "Do you tell them?"

Inspired, in part, by Wellstone's disclosure, Dan Marcotte revealed in late February that he, too, has a "mild" case of MS -- after hiding the disease for 25 years. Among those who saw Marcotte being interviewed about MS on TV nine days ago, were his two children, ages 7 and 9. They had no idea their father had any illness.

"What was the benefit of telling anybody?" asked Marcotte, 42, national director for investment practices for the RSM McGladrey company in Bloomington. "For me, it was a need-to-know basis and the circle for that was very small . . . before I was on TV.

"It was important to explain to the kids. Whether it's at work or at home, you don't want to hold back secrets."

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