Some of us have a gift for comforting a friend or loved one who is ailing. Most of us do not. We dread entering a hospital room. We approach a wheelchair or thicket of IV tubes with our heart in our mouth, or even worse, our foot there. And when the diagnosis is cancer, we are all the more flummoxed. Author and health reporter Lori Hope knows the syndrome from both sides of the sickbed. She oversaw the care for a close friend with cervical cancer and helped tend to two cousins with breast cancer. She herself is a five-year survivor of lung cancer — an experience that led her to write a book for all of us foot-in-mouth well-wishers, Help Me Live: 20 Things People With Cancer Want You to Know, published in 2005 by Celestial Arts and about to go into its fourth printing. The aptly named Hope, who also lectures on compassionate communication and blogs for CarePages.com, talked with TIME's Claudia Wallis about how to talk to a friend who's got cancer.
TIME: Why did you write this book?
Hope: When I had cancer I found that my friends and family and colleagues wanted to help me and be supportive, but some said and did things that were not helpful, unintentionally. I didn't have the heart or the strength to guide them or correct them. So I wrote the book to be a voice for people who don't feel strong enough or are too kind to speak their own truth.
Why do you think so many of us feel tongue-tied and awkward around cancer patients?
You are confronted with the possibility of death, and you are afraid. And, in a way, you are relieved it's not you. It brings up so many fears.
When you walk into the home or hospital room of a friend with cancer, what are the most important things to do, think or observe?
First, I would imagine a time when you felt really scared or sick and think about what that felt like. And be prepared to talk about things that will be of interest to that person, that will not dash their hopes, and that will provide distraction without negativity. Most people with cancer don't want to hear about the latest terrorist threat. So think about some light things. Think about what the other person enjoys. We get so caught up in our own fears that we forget to think about the other person. It's not about you.
How can you tell if someone actually wants to talk about their disease or would rather not?
What I'll usually do is say, "Hey, how are you doing?" in a very nonchalant way, as opposed to asking [in a grave voice], "So, how ARE you?" They may be enjoying a light moment. If you ask in a nonchalant way, that gives them the option to say, "Oh, I'm feeling good" or "I'm feeling really scared today." The technical jargon is you let them take the communicative lead. You watch them and listen for their tone of voice.
What are some of the most important messages to convey to a friend with cancer?
I just want you to know that I'm here for you, and I really love you. Also, that this is so unfair.
Why do cancer patients like to hear, "This is so unfair"?
They don't want to feel blamed or punished or held responsible for the illness. Bad things happen to good people. It's also a way of saying it could happen to anyone — to me.
Is it helpful to offer disease-related information or advice, if you've got some?
It's better to ask: Would you like to hear about a study I just read about? Would you like to hear about a book I found helpful? Asking permission is one of the main principles. Ask permission before visiting, before giving advice, before asking a lot of questions.
Do you have any specific advice about communicating with breast cancer patients?
Obviously, it's important to support your friend's treatment decision. So if someone decides not to opt for a mastectomy, it's not helpful to raise objections. The same if she's decided to have a prophylactic mastectomy because her mother and grandmother died of breast cancer. People arrive at these decisions after long and deep thought. And it doesn't matter what you would do in the same situation.
You surveyed about 70 cancer patients for your book. What were some of their most painful examples of misfired communication?
There was a husband who said to his wife, right after the bandages were removed from her mastectomy surgery, "Oh, look, the Bride of Frankenstein." He was trying to be funny. I've seen people hurt so deeply. One patient had a friend say, "You're no fun to be with." It's almost unbelievable.
What things did people say to you that made you wince, after you were diagnosed with lung cancer?
The question, "Did you smoke?" which I got a lot. So many of my friends didn't know that I had smoked [nearly 20 years earlier].
Do you think that's an unfair question to ask someone with lung cancer?
I do. When I hear someone has a had a heart attack, I may wonder what their cholesterol level is or what their diet is like, but I don't ask about that. When I hear someone has AIDS, I wonder if they practice unsafe sex, but I don't ask.
You write that most cancer patients have a secret theory or fear about why they got sick; how does that affect communication?
When you have cancer, you can't help but feel some element of blame or responsibility, and it's not a positive feeling. When people start lecturing you about how you never took enough vacations or you always worked too hard, it's phenomenally unhelpful. You don't want to look backwards. You want to look forward. You want to feel hopeful.
What are some of your favorite examples of meaningful, supportive communication?
Most of the important things are more about being than doing: be there, be generous. One woman [in the survey] had a friend who brought her a special gift for every chemo treatment. I had someone — and this was a remote colleague — who brought me a jar of homemade biscotti and some self-addressed cards for ordering more: plain, chocolate-dipped, chocolate with almonds. I don't think I ever re-ordered, but I still have the postcard. I'm looking at it right now.
What kinds of offers to assist are least helpful?
The nonspecific offer: Let me know if there's anything that I can do. The patient is overwhelmed with decisions about health care, fears, concerns and isn't thinking about day-to-day needs. If you really want to help, sit down, take a couple of minutes to think about what the person might need: Can I drive your kid to practice? Can I pick up your laundry? Can I take you out of lunch? Can I research something for you online? And if the answer is no today, ask again in a week. Check in.
What if you are one of those people who are truly at their worst in the presence of a mortal illness?
Someone wrote me the other day, I love your book but I didn't know whether to give it to my friend or hit her over the head with it! I used to think everyone had the capacity for empathy, but psychologists told me that people really have different levels. Some people just can't be there; they don't have the capacity. They can send cards, gifts. A lot of men become very frustrated when they can't fix something. My dad was that way, he just didn't know what to do. You can admit it if you are scared that you will say the wrong thing, that you want to help but don't know what to do.
Do you personally regret things that you said to cancer patients?
We all make mistakes. All we can do is just try and act out of love. I was visiting someone who is dying of lung cancer at her home, she was very weak and I was too talkative. She asked me to be quieter. I felt a wash of shame come over me. But I knew that she forgave me.
How important is non-verbal communication?
Maintaining eye contact, obviously, is important. When you are really listening, they can see it in your eyes. Touching a hand, if the person is a touchy person. Asking if you can give them a hug — asking is particularly important after surgery. I can remember needing a hug, but I was so sore.
What about just being in the room without speaking?
That is such a great gift, especially if someone is really ill or just post-surgery and they don't have the energy for a conversation. It's very hard for most of us, but just being there is so important.
Click here for more tips from Hope's book.