By ELIZABETH BERNSTEIN
April 1, 2008, WSJ
A few years ago, my sister called to tell me my mother had just been diagnosed with leukemia. After we hung up and I prepared to call my mom, I realized I had absolutely no idea what to say to her. It took me four hours to make the call.
I learned a lasting lesson that day: There isn't anything correct to say to someone reeling from the shock of a cancer diagnosis. But in helping my mom through her illness, I also discovered that some ways of showing support are better than others. And while there's no right approach, there may indeed be wrong things to say or do.
Even as the medical community has gotten better at detecting and treating cancer early -- allowing many patients to live longer -- people are understandably overwhelmed by the devastating news of a diagnosis. So family and friends grapple with how to best offer comfort.
Not every cancer patient wants the same type of support. Some want to talk about their illness and accept help willingly. Others struggle to preserve their independence and behave, at least outwardly, as if nothing is wrong.
So how do you know how best to offer assistance to someone struggling with a serious illness? I posed this question to oncologists, psychologists and patients.
"Loved ones don't know what to do, and they don't want to make a terrible error," says Marisa Weiss, an oncologist and founder of Breastcancer.org, a nonprofit organization. "This fear keeps people from doing anything."
While that's the worst mistake you can make, experts say, there are a number of other slip-ups. Well-meaning friends and family members often ask inappropriate questions, such as the patient's prognosis. They offer theories on why their loved one got sick, give unsolicited advice or insist that "everything is going to be just fine."
When Lori Hope was diagnosed with lung cancer in 2002, she says many people asked her if she had been a smoker. Some told her of people they knew who had died of cancer. One friend asked why she was going on vacation since she would probably worry the whole time. "People tend to rush in without thinking," she says.
In response, Ms. Hope wrote a book, "Help Me Live: 20 Things People with Cancer Want You to Know." Her advice: Admit you don't know what to say. Apologize in advance for doing or saying anything upsetting. Then be sure to tell your friend you will be there for her.
"Bumbling is OK," says Susan Brace, a psychologist in
In general, experts say, you should take your lead from the person who is sick. If she wants to talk about her illness, then listen. Don't be afraid of emotions. "Being there, listening and being supportive is a powerful role," Dr. Weiss says. "If the person feels comfortable crying in front of you, be honored, because you fulfilled a really important need."
It's critical not to treat your friend just as a patient. So remember to ask about other aspects of her life, such as her children. Ask her permission before you share news of her illness with others. Don't recommend books or treatments without first inquiring if she'd like to hear about them.
You should also ask exactly what type of help your loved one needs. You can offer to pick up groceries, provide transportation or return phone calls. And don't be deterred if your offer of help is declined. People who are diagnosed with a major illness often don't know what they will need at first. In addition, accepting help can be frightening for people accustomed to being independent. Keep offering help.
And if your friend, co-worker or family member isn't returning calls, don't take it personally. She may not have the energy or time to call you back. Stay in touch anyway.
As cancer awareness has grown in recent years, so have the resources to help people offer support to patients. Web sites for the American Cancer Society (www.cancer.org) and the National Cancer Institute (www.cancer.gov) offer information for caregivers, family and friends. There are books, too: "Help Me Live," by Ms. Hope; "What Can I Do to Help," by Deborah Hutton; "Cancer Etiquette," by Rosanne Kalick; "The Etiquette of Illness," by Susan P. Halpern.
In short, there is help for people who want to help their friends
and loved ones. "You should be there for your friends," says Howard Leventhal, professor of psychology at
More help for patients and caregivers:
• www.breastcancer.org has message boards for patients and families.
• www.lotsahelpinghands.com emphasizes patients' practical needs.
• www.talkingaboutcancer.com deals with the emotional impact of cancer.
• www.carepages.com allows families to set up sites to share information about the person who is sick.
What do you say to a loved one suffering from a potentially terminal illness? Beyond words, what can you do to show you care?