Diagnosis of illness can be life-changing

Medical matters

Patients should put themselves first until they feel more in control

January 26, 2007|By Judy Foreman | Judy Foreman,Special to the Sun

Late last fall, Dartmouth Medical School researchers reported in the journal Cancer that 100 percent of newly diagnosed breast cancer patients 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 such as 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, as Mark T. Hegel, the clinical psychologist who headed the Dartmouth study, put it, "are busy. 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 events here. And while there are books, support 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 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 time hearing 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, using 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 total 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 to remember that "you will not always feel like this."

Hester Hill Schnipper, chief of oncology social work at Beth Israel Deaconess Medical Center in Boston, has gotten bad medical news twice in the past 12 years, both times a diagnosis of breast cancer.

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