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  Place in the Workforce
Disclosure or NOT?
by Katherine Shaw

worried manI have MS and I didn’t tell anybody,” President Josiah Bartlet announced in the season finale of NBC’s “The West Wing”. For this, Bartlet, the fictional U.S. President played by actor Martin Sheen, is facing a flood of questions. His attorney is concerned that the President—and the family members, aides, and advisors who knew—will be charged with fraud. The friends and staffers who didn’t know are feeling misled and uncertain. The President’s ability to be reelected is in question, and a confidential survey indicates that had he disclosed his MS, he wouldn’t have been elected in the first place.

Of course this is TV, but the issues are very real. Many individuals with MS don’t have the option of not disclosing, but for those who do, the choice is a difficult one because it involves significant risk. There are personal and professional issues. There are issues of privacy, trust, and integrity.

From a career standpoint, disclosure may mean the fast train off the fast track. If you disclose to only a select few, someone might slip up and leak information unintentionally. But if you don’t disclose and you have a bad day at work, maybe slurring words or losing your balance, alcohol and drugs could be suspected, even if your overall job performance hasn’t been affected. Further, if a person who needs an accommodation waits too long, an employer may already have seen productivity decline. This poisons the climate for obtaining accommodations that work.

For Cheryl Woods, a 43-year-old nurse in Houston, Texas, the choice to disclose her MS was a nightmare. In 2000, she was fired after openly discussing her diagnosis. “It was a devastating situation,” she recalled. “I had four glowing evaluations. The one following the disclosure of my diagnosis was horrible.” Woods proceeded to write a rebuttal to this last evaluation, and was subsequently asked to resign. Her attorney advised her not to quit, or she wouldn’t have a case. So she began keeping a daily journal of the events that eventually led to her being fired. Woods has now filed suit under the ADA, but points out, “taking the matter up in court is time consuming, expensive, and stressful.”

She was open about her MS when she started searching for a new position. “The HR person at one hospital explained that she didn’t have a problem with my MS. She was very positive and told me she’d check my references, but I never heard back.”

Woods was promptly hired at the next hospital she tried. “I’m paid $10,000 less than I was at my previous position, but I needed the job,” she said. The hiring procedure involved her undergoing a physical exam and providing a list of all her medications. She listed Avonex and discussed with the nurse practitioner that she intended to keep her condition private. She was told that the information would not leave the office. So far it hasn’t.

To protect her privacy, Woods has decided not to use her cane until her 90-day probationary period is over. She also has a handicap-parking sticker that she’s not using, and she’s trying to decide if she’ll use it later. “It’s hard to keep a secret, especially since I think there are people who are suspicious,” Woods said. “There are days when I’ve had to park at the back of the lot and I’m on my feet all day. When I get home, I’m physically exhausted. Still, I would advise people not to tell if they don’t have to tell.”

According to Deborah Miller, PhD, LISW, director of Comprehensive Care at the Mellon MS Center, Cleveland Clinical Foundation, “There’s no legal obligation to discuss a medical condition with a potential employer. However, it is important to describe any special accommodations that are required or conditions that affect job performance. It is also essential that accurate information be disclosed on health insurance review forms.” worried man

Miller also points out that it is very important that people make adaptive changes if necessary. Otherwise the result may be an on-the-job injury that is not the fault of the employer—and that could result in a disputed workers’ compensation claim.

For Aiden McKenna of New Orleans, disclosure was not an option. Now 44, McKenna was diagnosed with relapsing-remitting MS in 1982. Following an exacerbation in 1990, he began using an electric scooter. After a 12-year career with the federal government, McKenna began law school in 1990, passing the bar in 1994.

Following law school, one of McKenna’s professors hired him as an assistant district attorney. “He knew when he hired me that I was in a chair,” McKenna said. “I wanted to be as up-front as possible, so I told him that I didn’t know if I could handle a full day.” As a result, his boss made arrangements for him to be on a flex-time schedule.

McKenna described three types of reactions to MS that he’s experienced in the workplace. There are those who don’t care at all. There are those who try to learn and deal with it. And there are those who care too much. The latter group, while certainly thoughtful, can go too far in terms of coddling.

“They are so overprotective that they keep you from opportunities,” explained McKenna. “They’re concerned. They don’t want to overburden you, so they don’t offer you the opportunity for a new project or a promotion. It’s better if the individual is offered the opportunity and then allowed to make the decision.

“I’m extremely fortunate,” continued McKenna. “We have unlimited sick days here, but it’s a badge of honor that I’ve only used eight!”

Sally Unger, a 36-year-old advertising executive from Boston, has had relatively benign MS since she was 25. She has a slight limp and stiff legs after she’s been sitting in a chair for a period of time. “After a two-hour meeting, I’m a bit shaky when I first get up,” Unger said. “When my coworkers ask about my limp, I tell them I have a bad back.”

She is happy with her decision, but she’s not worry-free. While her company has several hundred employees, minor health insurance claims are administered through the company’s benefits department. “I’m never quite sure who knows what,” Unger said. “If our benefits coordinator talks to my supervisor, I could easily be found out.”

Unger is careful about her insurance claims. “My doctors have been great about stating my symptoms, such as urgency or UTIs, rather than stating the MS diagnosis,” she explained. “I know if someone did some digging, it wouldn’t be hard to trace because of my MRIs, but I figure the less my file stands out, the better.”

“There isn’t any black-and-white advice on the disclosure issue,” observed the Mellon Center’s Deborah Miller. “I am aware of situations where employees have been dismissed within two months of revealing a diagnosis (never, according to the employer, for MS-related reasons), and I’ve seen situations where employers have shown enormous sensitivity in making special accommodations. To the extent that an employee can show he/she is valuable and wants to keep working, employers are often fair and reasonable. man smiling

“It’s more important to stay employed than it is to do the same job you’ve always done,” Miller concluded. “The benefits of work are multidimensional, including the community aspects, physical functioning, and the need to protect future Social Security and disability benefits.”

While the ADA does provide some protection, it does not eliminate discrimination and ignorance. Thorough planning is key to making a sound disclosure decision. It is not a decision to be made alone, or immediately after diagnosis when one is under severe emotional stress. Friends, family, social workers—as well as the National MS Society—are all valuable resources in planning an effective disclosure strategy.
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  The author writes under the name Katherine Shaw to avoid public disclosure of her MS. She has been living and working with MS for 11 years.  
  Last updated March 2007