I’m Ill, but Who Really Needs to Know?

February 21, 2008

I’m Ill, but Who Really Needs to Know?
By LISA BELKIN

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.”

E-mail: Belkin@nytimes.com

http://www.nytimes.com/2008/02/21/fashion/21WORK.html?ref=health