When Alicia Staley, a 37-year-old systems analyst from Boston got the news that she had cancer, she knew she was in for an emotional rollercoaster. But she assumed she’d be the one riding it.
“I told one coworker what was going on and the next thing you know, I’m handing her the Kleenex,” says Staley, who after battling Hodgkin’s disease in her 20s was diagnosed with breast cancer on April Fool’s Day in 2004. “I remember thinking, ‘Wait a minute, I’m the patient here. Shouldn’t this be the other way around?’”
Crying jags, angry silences, awkwardness, fear, and dread — women with cancer experience it all, but not necessarily from themselves. Often it’s friends, family members and acquaintances who break down after hearing about the disease, leaving the cancer patient to pick up the emotional pieces.
New research shows that when women receive a breast cancer diagnosis, many are thrown into a caretaking role. After conducting a series of interviews with 164 breast cancer survivors over two years, researchers from San Francisco State University found that women with cancer not only shoulder the emotional burden of disclosing their diagnosis to loved ones, they often end up being supportive of others at a time when they actually need support themselves.
“There’s been a lot of research on how women are emotional managers, how they take care of others,” says medical sociologist and lead researcher Dr. Grace Yoo, who recently presented the findings at the annual meeting of the American Sociological Association. “And when they’re diagnosed with breast cancer they’re still doing that. They’re worried about how others might react.”
Lynne Emerson, a 48-year-old lymphedema specialist from Boston felt that when she was diagnosed with breast cancer in October 2004.
“My husband, best friend and father were all much more freaked out by my diagnosis than I was,” she says. “I spent an enormous amount of time calming [my husband’s] fears and proving to him that I was going to be fine. I became the caretaker. He became the patient.”
Women typically try to minimize other people’s discomfort about the disease or feel compelled to protect and soothe distraught loved ones, Yoo found in her research. Some hide their breast cancer from aging parents, while others worry that burdening loved ones with the bad news would make them feel obligated to help.
Nature vs. self-nurture
Concern over the reaction of loved ones has even caused some women to delay getting treatment, says Emerson, who works with breast cancer survivors at a physical therapy facility.
"Women over 60 seem to have the most difficult time because they’re of the generation where they were the caretaker of the family,” she says. “One woman ... ignored a lump in her breast because she didn’t want to tell her family. She finally mentioned it to one of her daughters who basically dragged her mother to the doctor to get it diagnosed and treated."
It wasn't all a negative reaction, however. After revealing their condition, some women cited a renewed closeness with friends and families, as well as unexpected help from random individuals, such as parents who offered rides to school for the patient's children, Yoo found.
“Some women were able to just put it out there without trying to manage the feeling of others and found it opened up sources of support they didn’t know were there,” she says.
Patricia San Pedro, 52, a Miami public relations executive who was diagnosed with breast cancer in April and had a double mastectomy in May, says she’s had to find a way to reconcile her natural caregiving impulses with support from those around her.
“It’s a matter of finding a balance, of being OK with receiving and being OK with not having to care for everyone,” she says
Learning to share
Talking about a cancer diagnosis is never easy, but experts say there are a few things that patients may want to keep in mind.
- Don’t worry about protecting others too much, says Yoo. “If you have aging parents or young children, you will need to put some thought into [how you tell them],” she says. But treating peers, friends, coworkers and siblings with kid gloves may only result in more emotional work and less support. “This is not the time to be a martyr,” she says. “It’s when you need to tell it like it and get the support you need.”
- Don’t feel you have to “be” anything, advises Sandi Kafenbaum, a counseling coordinator for the Adelphi NY Statewide Breast Cancer Hotline & Support Program in Garden City, N.Y. If someone asks how you're doing, you don't have to reveal all. “There’s a lot of pressure to be strong and positive,” she says. “[You] can just say, ‘I’m doing fine, thank you. What did I miss at work?’
- Share ongoing news of your cancer in a way that feels comfortable for you, adds Kafenbaum. “Different people use different ways to inform people,” she says. “One person left an update on her telephone so she didn’t have to keep telling people the same thing over and over again. Another sent out group e-mails.” Other patients will give the job of passing on health updates to a loved one or will post journal entries online.
- Be prepared for negative reactions. "A lot of people don’t want to bring it up because they don’t want to get the negative reactions," or be told what is best for them, says Kafenbaum. "It’s an added pressure."
But while sharing the news can be risky, it can help, even if you dread being the "poor cancer victim."
Alicia Staley, who recently had a double mastectomy after her doctors discovered the cancer diagnosed in 2004 had returned, says that while other people’s reactions can sometimes be difficult — or even disappointing — sharing the news is the only way to get the backup you need.
“Breast cancer is one of these life events where you see the best in people and the worst in people,” she says. “But I’ve been dealing with this for 17 years and after all those years, I understand that if I need help, I have to reach out.”
Diane Mapes is a Seattle freelance writer and author of "."