Experts caution that when caring for someone with cancer, there are six things friends or family often say -- in an attempt to be sympathetic, supportive, or encouraging -- that can have just the opposite consequence: shutting down communication and making the person with cancer 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:
1. "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 the person feel better," says Knajdl, "because he knows it's not true and it just makes him feel dismissed and not heard."
What to say instead: What the person really wants to hear is that you're going to be there for him through the good times and the bad, and that he's not going to go through 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 him, but there will be days when discouraging test results come in or he'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 the person that you'll be there with him and you'll make it through this together."
2. "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 him you don't want him to talk about it."
Unless you've been treated for the same type of cancer and have undergone exactly the same treatment, you really don't know how the person 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 concerned about is anxious or sad, this gives him a chance to tell you how he feels, which can be a big relief to someone who's trying to pretend he's doing just fine. And even if he answers that he's holding up pretty well, he'll still feel better that you asked.
3. "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 a patient doesn't feel positive at all, and you certainly don't want him worrying that he's sabotaging his own chances of recovery. And what if he has a stressful job, or is a type A personality who reacts easily to stress -- do you want him feeling guilty or worrying that his high-strung personality or tendency toward anxiety either "caused" or will worsen his cancer?
Unfortunately, an awful lot of the literature conveys, in one way or another, the underlying message to 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 your loved one is tense or anxious, ask him to identify what's stressing him out and how you can help him put the worries to rest. In other words, instead of saying "relax," help him relax by eradicating the stress trigger. For example, try refocusing any visualization he's doing toward a concrete and reasonably accessible goal, such as comfort or sleep. Instead of trying to visualize eradicating a tumor, suggest that he visualize falling into a deep sleep in a quiet, safe, pleasant place. Sometimes you can help eradicate stress with a concrete act of assistance. Knajdl remembers one patient who was very anxious in the hospital because he felt he hadn't put his financial house in order. His son brought all the documents to the hospital, and they took care of them one by one.
4. "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 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 sometimes hearing such stories can make other patients 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 your loved one is facing the fact that his cancer may not be curable -- then hearing others' tales of triumph may not be helpful.
What to say instead: The best way to help your loved one feel positive and hopeful is to just keep reassuring him that you're in this together, and that you'll keep caring for him and supporting him and making him as comfortable as possible during his treatment.
5. "Now, now, don't get yourself all worked up."
Your loved one is scared, angry, or in tears, and you want him to feel better. But unfortunately, a statement like this makes it sound as if you want him to put his 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 sometimes a patient needs opportunities to cry or get angry or get upset, and if you can help him express these feelings and get them out, in the end he'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 the person a chance to say what's on his mind in his own time. Perhaps he's afraid of pain, afraid of letting you down, or frustrated by feeling incapacitated by his illness. "One patient surprised his son by saying, 'I feel frustrated lying here in the hospital because I feel like I'm wasting my time,'" Knajdl says. "It turned out he was actually upset that he didn't have his legal affairs in order. The son responded by saying, 'Would you like me to get a lawyer to come in so we can take care of that?' That made his father feel much better."
6. "Congratulations, you're done with chemo [or radiation]."
As a friend or family member, you'll feel thrilled when treatment is finished, but the patient's feelings are likely to be much more mixed. During treatment, he'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 him to do but wait, and naturally he 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 your loved one to be happy about it when maybe he's not feeling happy," Knajdl says.
What to say instead: Give the person a chance to express how he's feeling. Try asking an open-ended question, such as, "How are you feeling now that we're finishing up the chemo?" This way, you allow him to control the response. He 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 he's feeling is okay, and your job is to make it clear you're ready to listen.
The American Cancer Society Cancer Survivors Network has lots of resources about how to talk to someone with cancer.
People Living With Cancer (www.cancer.net) has a helpful section on talking about cancer.
Cancer Etiquette: What to Say, What to Do When Someone You Know or Love Has Cancer, by Rosanne Kalick, (Lion Books, 2005)
Help Me Live: 20 Things People with Cancer Want You to Know, by Lori Hope (Celestial Arts, 2005)
Guided visualization tapes are available from the Healing Mind (http://www.thehealingmind.org), created by Martin Rossman, MD, one of the pioneers of this mind-body technique.