Chronic illnesses: Too much sharing?
Published 12:00 am Friday, July 27, 2012
NEW YORK (AP) — In 1976, as a 24-year-old grad student, Samira Beckwith was diagnosed with the thing people still whispered about: cancer.
She was in and out of the hospital, had five surgeries and endured round after round of chemotherapy and radiation as she battled Hodgkin’s lymphoma. Beyond a few professors and close friends, she didn’t routinely tell people of her bleak diagnosis as she focused on staying alive.
Years later, as she was about to turn 50, disaster struck again. This time it was breast cancer and a double mastectomy. Her desire for a bit of privacy was the same, but society and sickness had become a share-all whirl.
“Back the first time around, people didn’t want to hear or talk about cancer. But the boundaries changed, and the second time it was breast cancer. People really like to talk about breast cancer,” said Beckwith, now 59 and clinical director of a health care services company in Fort Myers, Fla.
“But there are still many people who want to keep their illness, keep the decisions that they’re making, within a close circle,” she said. “They don’t want to be out there on Facebook. It’s almost like there’s something wrong with them because they don’t want to share.”
Nora Ephron might have agreed. The humorist who chronicled her life in books and lent romance a laugh in movies kept her leukemia largely locked down to the point that her death last month at age 71 stunned even some close friends. If she had any wisecracks about cancer, she didn’t share them with the world.
There’s no one right way to handle news of a life-threatening diagnosis, but how difficult is it for people to tell or not tell, and at what cost?
Michael Jaillet, a senior executive at Dell, learned June 20, 2011, that he had amyotrophic lateral sclerosis, or ALS. It was the “ultimate horror,” he said. Only his wife and three brothers knew for several months as he sought out a diagnosis, then second and third and fourth opinions.
Among those initially left out of the loop were co-workers and his three children, now 14, 13 and 11.
“It became, in a lot of ways, a bigger burden than the disease,” Jaillet said of the secret. “It’s guilt, tiptoeing around, talking in code. It’s clearing out your email or your Internet browser every night because you know your kids are going to get on and you don’t want them to see what you’ve been researching.”
Now “out” and active in raising money for research and supporting others with ALS, the 41-year-old Jaillet sees dignity in going public and embracing a broader base of emotional support.
“I feel like I’ve got a torch that I have to carry,” he said.
Often with limited energy and a need to maintain normal routines, people faced with life-changing illness may not know how to go about deciding when, how and how much to disclose.
“Someone’s going to know. Word’s going to get out and then you’re in a position and they’re in a position of sort of dancing around the elephant in the room,” said psychotherapist Fredda Wasserman, who has spent 40 years helping people navigate that journey.
Anticipating how people will react can be a huge source of anxiety, said Wasserman, clinical director of Our House, a grief counseling and support center in Los Angeles and co-author of the 2010 book “Saying Goodbye to Someone You Love.”
If sharing the journey is a priority, then be clear about what you need from those you tell, she suggests. An offer of dinner, for instance, doesn’t have to mean a night of chitchat with the person who brought it. Do you need jokes to keep you laughing or a shoulder for crying?
“People sometimes want to pray for you. If they do, you can tell them what you’re hoping for,” she said. “If I’m looking for a cure, that. Maybe I’m just hoping for a day free of pain. Maybe I’m looking for the strength and courage to face what is ahead for me. Let me tell you what I want.”
For others, talking about their illness is the last thing they want to do.
“It makes them feel worse,” Wasserman said. “It’s, ‘I don’t want to think of myself as a cancer patient. I don’t want to be talking about my aches and pains.’ Sometimes people will tell and then really regret it, because they’re being treated differently.”
Taking control of the conversation is important, she said.
“Say, ‘Look, I don’t want you to treat me like I’m dying, or I don’t want you to treat me like I’m pathetic,’” Wasserman said. “That’s one reason why a lot of people don’t tell. Their skin cringes to have people talk to them like that.”
Jessica Aguirre, the mother of two young boys in Green Acres, Fla., was 29 when diagnosed with breast cancer nearly two years ago. Her bad news came just three days before she received a promotion to manager of the cell phone store where she is now on medical leave, after the cancer spread to her brain.
“I just decided to be completely open with everything and everyone at work,” she said. “I just thought, you know what, maybe having this can help somebody else. I think that if you do keep it to yourself it will eat you up inside.”