Q&A
Social psychologist Jessie Gruman knows a lot about healthcare. She's the founder of the Center for the Advancement of Health, a nonpartisan organization that works to help people use good scientific information when making healthcare decisions. But it was her own experience with three bouts of cancer, starting at age 19, that led her to write AfterShock: What to Do When the Doctor Gives You-or Someone You Love-a Devastating Diagnosis.
Alas, you'd had more than enough experience in receiving devastating medical diagnoses.
Alas, indeed! When I was first diagnosed with cancer, it was "How could this have happened to me?" Years later, I had cervical cancer. By the third time, when I was diagnosed with colon cancer after I went in for a routine colonoscopy at age 50, it was "Can you believe this?" But each time it was such a different experience. If you think my first diagnosis, for Hodgkin's disease, was in 1973-just the word cancer, the treatment of cancer, and the disease itself is so different than it was.
You're blunt about the really annoying things that well people say to sick people.
You hear the same things over and over! One of the things that I heard a lot is "Everything is going to be fine." I know that they meant "I hope that everything is going to be fine." But I thought, well, what do you know, big shot? You're not taking this seriously. The only thing I heard only once is "You must have done something really bad to deserve this." I couldn't believe it.
So what should we say?
The first thing to say is "I heard about your news." One of the really hard things for people who have a bad diagnosis is that they know that people know but are afraid to talk about it. You're my friend; why won't you interact with me? You also want to tell the person, "I really am thinking about you and hope things go well for you in the next few weeks." And the third thing is "If there's something you can think of that I can do, please let me know." You have to make that offer carefully, because you have to be willing to respond. One of the things I would suggest is to be very specific about it. "Would you like me to do some Internet searching for you on doctors?" Or "I would like to bring your family dinner one day next week. Which day is best for you?"
You've got a pretty good sense of humor about getting seriously bad news.
When I found out I had colon cancer, I thought: What is this about? I already gave at the office! It started to become absurd. The gift of it is they're all relatively treatable cancers. I'm very conscious of the overdiagnosis of cancer in the United States and the overuse of cancer screening. We may be overtreating breast cancer wildly. But I'm the poster child for early detection, with three cancers caught early through routine screening.
You say you're a reluctant consumer of health information. What does that mean?
People have very different preferences for the amount of information they want about their illnesses. What I'd like is for someone to say, "Well, what you have isn't so bad, we can fix it by next week, and insurance will pay for it." My experience with the healthcare system is that we cannot have that preference anymore; we're all going to have to know something about our medical care. For people who want to know everything, this book says here are some good choices in how to narrow your search so it's more efficient. For people who don't really want to know much and feel hopeless in the choices department, it says you don't have to know much, but you have to know something, and here's what you have to know.
In talking with the more than 200 people you interviewed, what helped them get through the uncertainty of living with a dread disease?
A number of people I talked to said, "I wanted to be distracted." I was going to call the ninth chapter of the book "Where can I find comfort?" until one man told me, "I cannot find comfort. I am uncomfortable. I am going to die." That brought me up short. Instead, I talk about finding a little relief. For some people, just petting their pet helped. A couple of people wrote an E-mail to everyone they knew, saying, "If you're going to send me something, please be sure it's funny." For me it's playing the piano. I can get just five minutes not thinking about what's going to happen.
One person said, "I took a picture of myself every day, and I wrote about it. People said I would forget, and I never want to forget." Others said they had stacks of beautiful journals and didn't write a word. They didn't have the energy to reflect. There's no wrong way to go through this time, and no right way. You're doing the best you can. You hope that it's good enough to take you to the next step. And it usually is.
This story appears in the February 26, 2007 print edition of U.S. News & World Report.