At a Loss for Words

At a Loss for Words

What to say — and what not to — when talking about cancer

In 2013, Charles Chamberlain, 53, a Chicago healthcare executive, was diagnosed with a rare type of lymphoma related to celiac disease and given three to six months to live. He has been in remission for two and half years, but he has had to endure grueling chemotherapy and a bone marrow transplant.

At one point during his treatment — which caused him to drop from 180 pounds to 130 pounds and to lose his hair, eyebrows and eyelashes — he was waiting in line at a grocery store when a fellow shopper approached him.

“She said, ‘My name is Mary and it seems like you are going through something,’” Chamberlain recalls.

Chamberlain explained that he was a cancer patient undergoing aggressive chemotherapy. Mary then told him she was inspired to see him out  shopping. She also confessed to having been hesitant about whether to say anything to him.

“That was one of the nicest things that ever happened to me,” says Chamberlain, who thanked Mary for breaking through her hesitancy and talking to him. “That very random act of compassion fortified me for days.”

It can be hard to know what to say to people with cancer, whether they are close friends, casual acquaintances or complete strangers. Sometimes people — inadvertently and with good intention — say things that can hurt or upset someone with cancer.

So what should you say, and what should you avoid saying? Here are some guidelines from cancer patients and those who work with them.

Don’t dismiss or diminish what the person is going through

Some people have a tendency to dismiss deep concerns, says Bonnie Gordon, a two-time breast cancer survivor and executive director of the Susan G. Komen Chicagoland Area breast cancer organization. Instead, she advises, if a person with cancer is opening up about their worries and fears, “Don’t dismiss it like, ‘Oh, you’ll be fine’ or ‘Everything’s going to be okay.’”

It’s better, she says, to listen. And while doing so, you don’t need to interject reassuring or sympathetic comments, says Timothy Pearman, PhD, a psychologist and director of supportive oncology at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. “Listening to the person is the most important thing, versus feeling like you need to say something.”

Don’t push the positive

“You’d be hard-pressed to find a cancer survivor who hasn’t heard ‘stay positive’ from family or friends,” Pearman says. Yet, “There’s no research evidence whatsoever to show people with a positive attitude do better in terms of survival time or likelihood of recurrence,” he says. Implying that someone isn’t getting better because they aren’t thinking positively can cause patients to feel guilty.

Don’t use the phrase “at least”

“Empathic statements never start with ‘at least,’” says Megan McMahon, PhD, psychologist and clinical director of the Cancer Wellness Center in Northbrook. For example, “at least you have a treatable cancer” or “at least you caught it early” shouldn’t be used, she says.

Don’t offer general help; instead, find out what’s needed

McMahon suggests offering practical ways to help, rather than asking the more general, “Is there anything I can do for you?”

Gordon recommends telling people what you are going to do for them, such as saying, “I’m bringing dinner over” or “I’m bringing magazines by.” You will be “almost on the edge of overstepping,” she says, but this is often necessary because so many people truly want and need help but are reluctant to ask for it, especially women. (Of course, if someone does strenuously object, respect this, she adds.)

Don’t bring up other cancer cases

“You’d be surprised how many times people respond to someone’s cancer diagnosis with a story about a friend or relative who has had cancer and had a terrible experience,” Pearman says. Hearing about another person’s death or bad medical care can obviously be scary to someone going through cancer themselves.

It can be hard to know what to say to people with cancer.

On the flip side, hearing about someone else’s positive outcome is often not helpful either, Pearman says. “It’s not relevant information, because cancer is such a vast range of different diagnoses, treatments and prognoses. This just gives people more information than they want or need.”

Don’t avoid the cancer patient for fear of misspeaking

Sometimes people get so concerned over what to say that they stay away from their friend or loved one entirely.

“People worry, ‘Oh God, what if I say something wrong?’” Gordon says.

But, she points out, “A misstep is better than a no-step.” What’s most important, she says, is “just showing up, just being there and being a part of the journey this person’s going through.”

 


 

What to Do if Someone Says Hurtful Things

If you or your loved one has cancer and off-putting comments from others are bothering you, consider these tips.

 

Remember that the comments “are usually coming out of a place of caring,” says Timothy Pearman, PhD, director of supportive oncology at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. “If you can remind yourself of that and be OK with that, that’s fine.”

 

Just say no. If upsetting talk continues from a particular person, Pearman says, it’s “absolutely appropriate to say, ‘I don’t want to talk about my cancer’ or ‘I don’t want to hear about your family member who also had breast cancer.’”

 

Set up a close friend — not a spouse or partner — to act as your point person when it comes to communicating with your broader social network, says Megan McMahon, PhD, clinical director of the Cancer Wellness Center in Northbrook.

 

Establish someone who can talk to individuals in your life who say or do things that hurt or upset you, McMahon recommends.


Originally Published in the Fall 2017/Winter 2018 issue

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