A healthy path to handling bad news

“This is a book about what you must do to take care of yourself while your heart is breaking.”

That’s how author and social psychologist Jessie Gruman introduces the difficult topic of handling bad health news in her new book, “AfterShock: What to Do When the Doctor Gives You – or Someone You Love – a Devastating Diagnosis” (Walker & Company, $16.95).

“The book is not about studies or research,” Gruman says. “It’s focused on what it feels like to be in that situation and what people need to know. It’s about from the moment you’re diagnosed to the point where you make your treatment decision and you’re ready to go ahead.”

Gruman, 53, has intimate knowledge of what it’s like to be in that situation. She has survived four devastating diagnoses of her own – three different types of cancer and a serious heart condition. Her first bout with cancer came at an early age, 20.

“Whenever I have received a serious diagnosis,” she writes, “I was stunned, then anguished as I recounted my diagnosis to my family, explaining to them something I didn’t fully understand and trying to reassure them while I was quaking at the prospect of what was to come.

“Each time, I have stood in awe of how much energy it takes to get from the bad news to actually starting on the return path to health: figuring out whether my diagnosis was right and what course of treatment to take – slogging through the tests, searching the Internet, getting to know all the new doctors and their receptionists, arranging for coverage by my insurance, comforting my parents – all while feeling somewhere between extremely anxious and downright terrible.”

Gruman says she had these emotions despite a career based on issues of health. She is the founder and president of the Center for the Advancement of Health, a policy institute in Washington that works to help people use good scientific information when making decisions about their health care.

She says she “built” the book not just solely on her own health crises. She gleaned information from interviews she conducted with more than 200 people who described how they faced bad medical news during the first few days after learning they were sick.

“It’s meant for people to dive into and pick out situations to anchor them during a time when all they’ve known has been cut from them – like the string on a kite,” Gruman says. “It’s about helping people feel that, even in the midst of a life-and-death illness, you have choices.”

She leads her readers through a 10-step comprehensive guide filled with advice and strategies for a host of potential situations, including how to find the right doctor and hospital for you; how to make your way through a complicated health-care system; how to handle your insurance; how to check a doctor’s background; how to handle your job; and how to deal with finances when facing a potentially catastrophic disease that could clean out your wallet.

The chapters contain subtitles such as “Common Sense Help for Getting Through the First 48 Hours,” “How Will My Co-workers Be Affected by My Condition?” and “How Do I Make Decisions About Treatment?”

“I organized it by the issues people talked about as being difficult and hard to struggle with,” explains Gruman.

One of her key pieces of advice is to be sure to get a second opinion of a diagnosis.

“You will feel like you want to take care of it immediately, you want to make it go away as fast as you can,” Gruman says. “But doing that means you could be cutting yourself off from choices (for treatment) or from possibly getting the best care.

“You have a little time,” she adds. “If things were that desperate, you would be hospitalized.”

Once you decide on the course of treatment to follow, Gruman says, ask your doctor if he or she has a back-up plan.

“You say, ‘If the treatment is not working, how will I know that and what’s the next plan?’ ” she says.

“You want to say to the doctor, ‘Think ahead, here.’ No doctor is going to say, ‘I don’t want to talk about that.’ They’re trained to think ahead, so they’re not unfamiliar with it.”

It’s also crucial to not feel compelled to involve people in the details of your illness and treatment simply because they expect you to keep them in the loop, Gruman says.

“Choose who you want to come with you on this trip, especially at the beginning,” she says. “You get to choose who, when and how to tell them. These are decisions you get to make.”

Be aware that people will tend to want you to maintain a hopeful attitude about your health crisis, Gruman advises.

“In this country, we have this notion that you have to keep a stiff upper lip,” she says. “I don’t think people know they’re placing such a burden on us. They want us to be hopeful.

“But don’t force yourself to be hopeful when you’re feeling sad or discouraged. Hope is a gift, and you do not always get to feel hopeful. Some days you do.”

Here’s another bit of advice from Gruman: “Don’t read this book if you don’t need it. That’s like going to a 3-D movie but you don’t have those cool glasses.”

If you’re not facing a frightening diagnosis, but you still want to get the book, you can loan it to someone who can use it, she adds: “I promise, in the next month, you will meet someone who needs it.”