"I'm Ill, but who really needs to know?"

I'm Ill, But Who Really Needs to Know? By Lisa Belkin The New York Times February 21, 2008 ONE of the first decisions you make in the emotional hours after a scary diagnosis is whether to tell others. Most 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 at 25, did not tell. Mr. 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 television 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, in turn, 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 that longevity came security, she hoped. Ms. Kahan was also afraid that the mix of symptoms and side effects from the treatments would leave her at "less than 100 percent," she said, making it seem as if she was either slacking or even 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 your condition to yourself for as long as possible, because that is 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" and "able" and even "job" all become open to interpretation, said Ms. Backstrom, the author of "I'd Rather Be Working" (Amacom, 2002). An excellent resource for workers facing this choice, she said, is the Job Accommodation Network, a service of the federal Department of Labor. Most questions on its site, she said, come from workers, not management, and "they are looking for suggestions on how to do adjust their work without bringing it to the attention of their bosses," she said. They buy themselves custom footstools and wrist-rests, and 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. Mr. Cohen did that for nearly 10 years. In "Blindsided: Lifting a Life Above Illness," he recalled an interview for a job as a producer on the "CBS Evening News with Walter Cronkite." He asked a friend, Robert MacNeil, whether he should mention his multiple sclerosis. Recalling Mr. MacNeil's answer, he wrote: "Say nothing. Your silence is an honorable dishonesty." Mr. 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 first hired him agreed that he had been wise to stay mum. "I am not proud to say this," Mr. 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 the 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 initially 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 got her master's degree, was promoted, married and had a son. But after she moved to take a job at Duke University, the simpler form of treatment began to prove insufficient. She had to switch 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. It needs to be on the table.' " She got the job. Now she is on the dialysis machine 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 nondialysis days. She also arrives feeling "hung over" from the six-pound weight loss post-treatment, she said, another reason why she felt she had to be upfront. "On Tuesdays and Thursdays, everyone knows that I can't always be accountable for my personality, " she said. Mr. Cohen eventually 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 Beirut, once staring down Palestine Liberation Organization guards because he could not see the guns pointed at his head. Eventually he left breaking news for the slower pace of documentary television. 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. The patients profiled in his book live nationwide, so he spent a lot of time in airports. "Picture it," he said. "I am legally blind, I have trouble with mobility, I was constantly lost and under pressure to get from point A to point B. More than once I dropped everything I was carrying, because I do that, and I had tears in my eyes. I thought, 'I can't do this.' " Yet he commutes daily to his office on the Upper West Side from Westchester, where he lives with his wife, Meredith Vieira, a host of "Today," and their three children. "Barbara Walters is always asking me, 'Why do you do that?' " he said of his wife's former colleague on "The View." "Because I can. You do it until you can't do it anymore." That is Ms. Lee's mantra, too. In recent weeks her 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."