Experts caution that when caring for someone with breast cancer, there are six things caregivers often say - in an attempt to be sympathetic, supportive, or encouraging - that can have just the opposite consequence, shutting down communication and making her feel worse.
Psychiatrist Jeffrey Knajdl, director of psycho-oncology services at Creighton University in Omaha, Nebraska, points to these six common sayings to avoid, along with suggestions for what to say instead:
"Everything is going to be all right."
You have no way of knowing if it will be or not, says Knajdl, and such a statement ends up sounding like an empty platitude - plus you establish a sense of mistrust. "It doesn't make her feel better," says Knajdl, "because she knows it's not necessarily true and just makes her feel dismissed and not heard."
What to say instead: What a woman with breast cancer really wants to hear is that you're going to be there for her through the good times and the bad, and that she's not going to go through breast cancer treatment alone. There will be days when it does feel like everything's going to be all right, and you'll be there to celebrate that with her, but there will be days when discouraging test results come in or she's in pain - and you'll be there for that, too. "When you talk to patients, their two big fears are that they won't make it through treatment, and that they'll be alone and in pain," says Knajdl. "Just keep telling her that you'll be there with her and you'll make it through this together."
"I know how you feel."
This is almost an automatic response for many of us when someone is sad or upset. We say it out of the best of intentions, to demonstrate our compassion, our sympathy, our sense of having been there. The problem is, it has the unintended effect of shutting the other person down, says Knajdl. "When you say, 'I know how you feel,' the unspoken second part of the thought is, 'and therefore you don't have to go into any detail about it,'" Knajdl says. "It increases the patient's sense of isolation, because it's like telling her you don't want her to talk about it."
Unless you've been treated for the same type of breast cancer, have undergone exactly the same treatment, and had the same response, you really don't know how she feels. "We have no idea what it's like, and it's upsetting to the patient when we act like we do," says Knajdl.
What to say instead: A better approach, according to Knajdl, is to ask something like, "How are your mood and spirits holding up through this?" If the person you're caring for is anxious or sad, this gives her a chance to tell you how she feels, which can be a big relief to someone who's trying to pretend she's doing just fine. And even if she answers that she's holding up pretty well, she'll still feel better that you asked.
"Try to keep a positive attitude, relax, and avoid stress. It can help you heal."
Cancer patients hear endless variations on this "mind over body" theme. There are going to be days when she doesn't feel positive at all, and you certainly don't want her worrying that she's sabotaging her own chances of recovery. And what if she has a stressful job, or is a type A personality who reacts easily to stress - do you want her feeling guilty or worrying that her high-strung personality or tendency toward anxiety either "caused" or will worsen her cancer?
Unfortunately, an awful lot of the literature conveys, in one way or another, the underlying message to breast cancer patients that they may have "caused" cancer through stress, worry, or a negative attitude, and that they could heal the cancer if they'd only develop a mellow outlook or sunny disposition. All that really happens is that they feel even more anxious about trying not to be anxious, or they feel guilty for not feeling happy. Even some visualization techniques can make cancer patients feel a sense of defeat, Knajdl says, if the focus is on healing but healing doesn't seem to be happening.
What to say instead: Suggest specific solutions. When she's tense or anxious, ask her to identify what's stressing her out and how you can help her put the worries to rest. In other words, instead of saying "relax," help her relax by eradicating the stress trigger. For example, try refocusing any visualization she's doing toward a concrete and reasonably accessible goal, such as comfort or sleep. Instead of trying to visualize eradicating a tumor, suggest that she visualize falling into a deep sleep in a quiet, safe, pleasant place. Sometimes you can help eradicate stress with a concrete act of assistance-by offering to help solve a specific problem that's making her feel anxious, for example.
"We can beat this."
In our rush to be supportive, it's all too easy to fall back on such encouraging and inspirational messages. But they can give breast cancer patients a deep-seated feeling of failure. "I call this the Lance Armstrong syndrome, this idea that if you have the right fighting spirit you can overcome disease," says Knajdl. "I admire Armstrong, and he's done great things to publicize cancer, but this idea that people can triumph over cancer with will power and an upbeat attitude is just crazy. There are all sorts of factors that contribute to why some people recover and some don't. The truth is, some people just get lucky."
This problem tends to come up with cancer survivors in particular, who may believe very deeply that their attitude, philosophy, spiritual focus, or belief in healing helped them survive. And hearing such stories can make some people feel hopeful and optimistic. But if things aren't going well - if a scary test result has just come in, if chemo's side effects are almost unbearable, if the person you care about is facing the fact that her cancer may not be curable - then hearing others' tales of triumph may not be helpful.
What to say instead: The best way to help her feel positive and hopeful is to just keep reassuring her that you're in this together, and that you'll keep caring for her and supporting her and making her as comfortable as possible during her treatment.If she expresses guilt about being downhearted or compares herself negatively to someone who seems to have recovered out of sheer will power, don't hesitate to talk about the power that luck and fortune have over all of our fates. Let her know you believe in her, and admire her strength and pluck. Reassure her that she's dealing with the hand of cards she's been played with admirable perseverence, resilience, and optimism.
"Now, now, don't get yourself all worked up."
The person you care for is scared, angry, or in tears, and you want her to feel better. But unfortunately, a statement like this makes it sound as if you want her to put her feelings, which are natural and unavoidable, under wraps. "In this situation, it's okay to get worked up, and it's okay to vent," says Knajdl. "We have this fear of feelings getting out of control. But people need opportunities to cry or get angry or get upset, and if you can help her express these feelings and get them out, in the end she'll feel better."
What to say instead: If you don't know what to say, it's okay not to say anything at all, Knajdl says. Just offer the comfort of your presence, a hug, or an arm around the shoulders. Allowing some silence without rushing to fill it gives her a chance to say what's on her mind in her own time. Perhaps she's afraid of pain, afraid of letting you down, or frustrated by feeling incapacitated by her illness.
"Congratulations, you're done with chemo [or radiation]."
As a caregiver, you'll feel thrilled when a course of treatment is finished, but your loved one's feelings are likely to be much more mixed. During treatment, she's taking action. That can be empowering because the focus is on a solution, either a cure or progress in pushing back the cancer. When treatment is finished, it can feel like there's nothing more for the patient to do but wait, and naturally she may feel anxious and uncertain. "Often, people don't feel like celebrating. Instead they think, 'Now what do I do? Just wait for the cancer to come back?'" says Knajdl.
No matter how relieved you are, try to keep it to yourself. "It's really common to say something like, 'Boy, am I glad that's over,' but that implies two things: that the treatment has been a burden on you, and that you want her to be happy about it when maybe she's not feeling happy," Knajdl says.
What to say instead: Give her a chance to express how she's feeling. Try asking an open-ended question, such as, "How are you feeling now that you're finishing up the chemo?" This way, you allow her to control the response. She might say, "I know we were talking about throwing a party when I finished chemo, but I really don't feel like it." The bottom line is, whatever she's feeling is okay, and your job is to make it clear you're ready to listen.