Aching to know
Should people with chronic illnesses share that news with employers?Monday, March 31, 2008 3:07 AM
By Lisa Belkin
NEW YORK TIMES NEWS SERVICE
* Strong at the Broken Places, (Harper, 352 pages, $24.95) by Richard M. Cohen
One of the first decisions someone makes in the emotional hours after a scary diagnosis is whether to tell others.
Many of us share the news with our loved ones, but what of the circles beyond, particularly those at work? Your boss?
At first, Richard M. Cohen, whose multiple sclerosis was diagnosed when he was 25, did not tell. Cohen -- whose latest book, Strong at the Broken Places, recounts the stories of five patients with chronic illnesses -- was starting what would become a hard-charging career as a TV news producer when he learned of his condition. He feared he would be considered unfit. He kept his secret for years, despite failing vision and shaky balance.
Marlene Kahan, however, disclosed her condition right away. Four years ago, when she learned she had Parkinson's disease, she had been the executive director of the American Society of Magazine Editors for more than a decade. With longevity came security, she hoped.
Kahan was also afraid that the mix of symptoms and side effects from treatments would leave her at "less than 100 percent," she said, making her seem as if she was either slacking or sicker than she was.
"I didn't want people to wonder and jump to other conclusions," she said.
Gayle Backstrom -- whose fibromyalgia, a chronic pain condition, was diagnosed decades ago -- understands both paths. Still, she advises to keep a condition
private for as long as possible because that's safer.
The Americans with Disabilities Act prohibits an employer from dismissing or failing to hire a chronically ill employee on the basis of that disability "if they are able to do the job with reasonable accommodation," she said. But in many cases, "reasonable," "able" and even "job" all become open to interpretation, said Backstrom, the author of I'd Rather Be Working.
An excellent resource for workers facing this choice, she said, is the Job Accommodation Network, a service of the U.S. Labor Department. Most questions on its Web site, she said, come from workers, and "They are looking for suggestions on how to adjust their work without bringing it to the attention of their bosses."
They buy themselves custom footstools and wrist rests. They sneak off to restrooms to take medications. To hide their condition on the worst days, they call in sick, giving a reason other than their chronic illness.
Cohen did that for almost 10 years. In Blindsided: Lifting a Life Above Illness, he recalled an interview for a job as a producer on CBS Evening News With Walter Cronkite. Cohen asked a friend, Robert MacNeil, whether to mention his MS. Recalling the answer, he wrote: "Say nothing. Your silence is an honorable dishonesty."
Cohen got the job and was able to keep his secret with scrupulous attention to logistics, quietly using public transportation to conceal that he could not see well enough to drive. Years later, the executive who hired him agreed that he had been wise to stay mum.
"I am not proud to say this," Cohen quoted the man as saying, "but I don't think I would have hired you if I had known."
Celeste Lee also chose to keep details of her life from her employers for years. An autoimmune disease she developed in high school 25 years ago led to kidney failure. A transplant was successful, but eventually her body rejected the organ. That left her dependent on regular dialysis.
At first, she managed it on her own with a saline bag and an IV needle. She then worked as an administrator at a Boston law firm, and because the process took 15 minutes behind her closed office door, "It was something they didn't really need to know," she said of her employers and co-workers.
The timing was sometimes tricky, but life went on. She earned a master's degree, was promoted, married and had a son.
But after she moved to take a job at Duke University in North Carolina, the simpler form of treatment became insufficient. She switched to hemodialysis, which required that she be hooked to a machine that cleaned her blood for three hours, three days a week.
Shortly after, she was offered her "dream job" as chief of staff to the chief executive of the Duke University Health System. The high-paced work would require 12- to 15-hour days. For the first time, she wondered whether her illness would hold her back.
She raised the issue in her interview.
"At first they were uncomfortable because they thought that if they didn't hire me, I would accuse them of discrimination," she said. "But I said, 'No, we have to talk about this.' "
She got the job. Now she is at the outpatient dialysis clinic at Duke by 7 a.m. on Tuesdays, Thursdays and Saturdays. On workdays, she is at her desk by 10 a.m., respectable by most standards, but hours later than her arrival on non- dialysis days. She also arrives feeling "hung over" from the treatment, she said, another reason why she thought she had to be upfront.
Cohen also revealed all once he had proved himself. He then went on to squint his way through the Solidarity protests in Poland and the violence in Lebanon, once staring down Palestine Liberation Organization guards because he couldn't see the guns pointed at his head. Eventually, he opted out of breaking news for the slower pace of documentaries.
Now, even writing books is increasingly difficult because of his worsening condition. He wrote most of Strong at the Broken Places with his left hand because his right side doesn't function well.
Yet he commutes daily to his office in New York from Westchester County, N.Y., where he lives with his wife, Today co-host Meredith Vieira, and their children.
In recent weeks, Lee's doctors have confirmed that she faces a new challenge: nephrogenic systemic fibrosing. It is essentially a thickening of the tissue or subcutaneous skin that can affect muscle and organ functions.
"At some point I have to consider whether I will have to bow out of this position," she said. "But I want that to be my decision, and I won't make it until I have to."
http://www.columbusdispatch.com/live/content/life/stories/2008/03/31/1_CHRONIC_ILL_BOOK.ART_ART_03-31-08_D1_J49P2KS.html?sid=101
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