Late last fall, Dartmouth Medical School researchers reported in the journal Cancer that all newly diagnosed breast cancer patients in their study experienced at least some level of distress, and nearly half met the criteria for a significant psychiatric disorder such as major depression or post-traumatic stress disorder.
Well, duh!
Is it really news that a serious medical diagnosis can shake a person to the core? The only surprise to me is that a study like this is necessary. While some medical schools are adding classes in things like “how to deliver bad news,” the medical establishment as a whole still isn’t as good as it could be at helping people who go in a heartbeat from merely having a medical appointment to wondering how long they have to live.
Sure, cancer specialists are busy, as Mark T. Hegel , the clinical psychologist who headed the Dartmouth study, put it. ” They have short visits. They are very focused on treating the cancer. They are not well trained to look at the psychological issues.”
But we’re talking major life-altering event here. And while there are books, groups, and therapists galore to help with the long haul — clarifying the diagnosis, bearing up under treatment, then living the rest of your life as best you can — there’s much less to help with the first days and weeks after your life has been turned upside down.
Unfortunately, I’m speaking from personal experience. My husband’s two cancer diagnoses over the past 11 years were devastating to both of us. Dealing with everything that came later, including his death last summer, has also been difficult, to put it mildly. But for sheer, soul-shattering shock, the first hearing of the bad news was in a class by itself.
I learned — the only way, the hard way — how to muddle through the early days of a terrible diagnosis. Eat. Sleep, with sleeping pills if necessary. Breathe. Talk to a few close people. Don’t, as I did, tell everybody every single medical bulletin — you’ll spend all day and evening on the phone. Triage your life: Cancel what you can, but not the fun things — in my case, exercise and singing.
Do cruise the Internet for information about the disease if that helps control your anxiety, but log off immediately if it upsets you too much. You have doctors. You don’t have to become the molecular biologist or brain surgeon who will fix everything. Despite my decades as a medical journalist, I found that truly understanding a complex diagnosis is a daunting intellectual and emotional task.
A life-altering diagnosis, in other words, moves you abruptly from a normal existence into a parallel universe of fear and disease, though illness, of course, is part of life, too.
Social psychologist Jessie Gruman puts it this way in her wonderful, forthcoming book, “AfterShock : What to do When the Doctor Gives You — or Someone You Love — a Devastating Diagnosis,” for which she interviewed more than 250 people.
“Every time I have received bad health news,” she writes, “I have felt like a healthy person who has been accidentally drop-kicked into a foreign country: I don’t know the language, the culture is unfamiliar, I have no idea what is expected of me, I have no map, and I desperately want to find my way home.”
Gruman, 53, who is president of the Center for the Advancement of Health, a nonprofit patient education group based in Washington, D.C., has been drop-kicked into this foreign world four times, each unexpectedly.
The first was Hodgkins’ disease, a type of cancer, at age 20. “I was a total wreck,” she recalled recently. Then cervical cancer, picked up by routine screening when she was 30. “I had a successive series of operations that ultimately left me without a uterus.” Then, at 47, a terrifying case of viral pericarditis — an infection in the sac around the heart that landed her in the intensive care unit for eight days. Then, at 50, colon cancer, another surprise picked up by a routine colonoscopy.
She’s fine now, and armed with hard-won wisdom. A bad diagnosis “is a crisis. Treat it like one. Don’t try to go on as though nothing is happening to you. Don’t go to work for at least 48 hours, and cancel your social engagements until you get your feet back under you.”
You have to put yourself first. “You owe no explanations to anyone right now,” she writes. “Talk if you want to talk, cry if you feel like it. There is no particular benefit or harm in either. You are not responsible for taking care of others who are distraught at your news.” What you do have to do is make sure to set up your next doctor’s appointment and remember that “you will not always feel like this.”
Hester Hill Schnipper , chief of oncology social work at Beth Israel Deaconess Medical Center, has gotten bad medical news twice in the last 12 years, both times a diagnosis of breast cancer. “The very beginning, psychologically, is the worst time,” said Hill, author of “After Breast Cancer: A Common-sense Guide to Life After Treatment.” Things “always get better than the first couple of days,” she said. “Everybody copes, because what is your choice?”
If you have an inkling that your doctor visit may yield bad news, take someone with you, said Nicholas Covino , a clinical psychologist who heads the Massachusetts School of Professional Psychology. People often hear bad news alone, he said, “then have to find their way home by themselves.”
Lastly, don’t be surprised if, on top of your other troubles, your self-esteem takes a nose dive, said Dr. John Wynn , medical director of PsychoOncology at the Swedish Medical Center in Seattle. “The feeling is often one of shame, of punishment,” said Wynn. It’s irrational, but people often feel, “I am bad because I am sick.”
In truth, you are not bad because you are sick, or vice versa. You are in crisis.
So if you have just gotten bad medical news, take Jessie Gruman’s words to heart: “You will not always feel like this.”