Illustration by Hadley Hooper
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Should You Tell?
By Betty Rollin, July & August 2005
Your illness is your business. But keeping it a secret can cause damage of its own
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Elaine Benson was the successful owner of an art gallery in the fashionable
Hamptons in Long Island, New York. Everyone knew her and most people liked her.
She was a big-bosomed, no-nonsense woman, formidable in a way, but she knew her
business and she had a reputation for being smart and honest.
In 1995 she started feeling lousy. A visit to the doctor left her with a
frightening diagnosis: non-Hodgkin's lymphoma, a cancer of the lymphatic
system. It sounded serious. She made one decision right away. With the
exception of her husband and her daughter Kimberly, she would tell no one. Not
anyone else in her family, not her close friends, not even her other children.
She began chemotherapy. Her hair fell out. She got a wig that looked like a
wig. A few of her friends asked her about it. In a weird coincidence, she
happened to be writing a book at the time about hair. She told her friends that
the wig was for research. They believed her.
Elaine gave Kimberly two reasons she wanted to hide her disease: she thought
it would undermine the business, and she didn't want people feeling sorry
for her. "I can't bear to have people look at me with sad eyes,"
she told her daughter.
Jimmie Holland, M.D., an attending psychiatrist at Memorial Sloan-Kettering
Cancer Center in New York, sees many patients who have an impulse to hide.
"They usually say they don't want pity," says Holland. "But
I don't know if that's what it really is. I think a lot of people feel
a sense of shame about their illness, a loss of self-esteem."
Cancer isn't the only disease people try to keep secret. Years ago, my
friend Janet Pearce was diagnosed with multiple sclerosis. She told her family
and close friends but decided not to tell anyone at work. The "pity
reason" was part of it. "I thought people would treat me
differently," she says. When she had to begin using a cane, she told her
bosses and, gradually, her colleagues.
Society often confuses secrecy with toughness. And we see
toughness as a virtue.
She was right about people treating her differently—especially now
that she is in a wheelchair—but it wasn't in the way she thought.
"People are wonderful. They love you. 'Coming out' brought me some
of the happiest moments since I was diagnosed."
Of course, Janet no longer has a choice about telling. Most people with
cancer and heart disease do have a choice. Symptoms usually don't show.
Unless you work in a topless bar, for instance, breast cancer is a cinch to
hide. In my own case, however, I never even considered it. As I recall, I
started blabbing to the guy who rolled me out of the recovery room. That was
after my first mastectomy. (I had a second one nine years later.) The year was
1975. Secrecy was the norm then. That made it hard for people like me who
wanted company. In 1975 I was probably surrounded by one-breasted
women—think of the comfort we could have given each other! But they
weren't talking.
I talked. Did I talk! I talked to friends; I talked to strangers at bus
stops; I talked to blind dates. (In time I learned to give the poor guy a drink
first.) And when I got hoarse from talking, I wrote a book about it,
First, You Cry.
Why did I talk? I just needed to. Instinctively, I must have known what it
would do for me. Mainly, it was the obvious: I felt less alone. In fact, I
never felt less alone in my life. People came, as they say, out of the
woodwork. They called, they wrote, they visited. Often I saw in their eyes what
Elaine Benson was so afraid of seeing: pity. But at an early stage, I rather
liked pity. I found it quite nice. As I recovered, it went away. Which was
fine.
My friend Janet talks about admiration. I had some of that too. Also very
pleasant. People give you points for surviving, as if you had a choice! And
they admire your cheer, as if the normal thing to do is cry all day. I fell for
it, though. People's admiration definitely increased my self-esteem, not
that it needed increasing. I started to believe I was as brave as they
said.
And eventually, after my book was published, many of those one-breasted
women surfaced. What a joy it was to hear from them. We had so much catching up
to do. So many questions back and forth: How is your husband dealing with it?
What do you tell your children? Has your prosthesis ever fallen out of your
bra? How scared are you?
Do you feel less like a woman?
With cancer—if you tell—you get respect. More than you deserve,
of course. But so what? Cancer makes you shameless.
When you tell, you also learn that bad things happen to everyone. Now that
you've opened up, other people open up to you—about not just illness
but all sorts of things. That's because, unconsciously, they feel
you're one of them now. Of course, we're all "one of them."
It's just that some people don't want you to know it.
Some people who get sick worry that they'll lose their jobs if they
tell. But Susan Slavin, a lawyer in New York City who handles such cases,
advises patients to tell employers—in a certain way: "I have cancer
and I am able to perform essential tasks." Slavin says that "coming
clean" in this way should legally protect them from dismissal.
In the end, how to handle an illness is a very personal decision, though it
can affect loved ones in a profound way. Elaine Benson's daughter (who
lived nearby and saw so much of her mother that she had to be told) says other
people were hurt by her mother's secrecy. "My brother and sister
couldn't fathom that she didn't tell them. And there are friends who,
for a long time, resented being shut out. At the very end, she let people know
she was dying, but even then she didn't want them to come to see
her."
Kimberly maintains that this was how her mother wanted to do it.
"Performing helped her in a way. It kept her together." An obituary
even praised her secrecy: "It was to her enormous credit that she carried
herself in the end exactly as she had for years before."
Society often confuses secrecy with toughness. And we see toughness as a
virtue. Stiff upper lip and all that. When people keep their troubles to
themselves, it also protects the rest of us from, God forbid, involvement.
Still, it seems to me that many people like to be involved. It's a good
feeling to be kind to a friend who is sick.
Although Elaine might have benefited from the kindness of friends, Kimberly
says her mother's hiding her illness was the only way she felt she could
continue being herself. It could be, however, that had Elaine told, she might
have continued to be herself. And she might have enjoyed knowing that such a
thing was possible.
Betty Rollin is a contributing correspondent for NBC News and
PBS's Religion and Ethics Newsweekly. She wrote
First, You Cry and
Last Wish.
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