Have you or a loved one ever experienced difficulty getting a diagnosis for a medical problem?

Or do you want to know how to work with your doctor should you ever find yourself worried about a condition and have to make difficult decisions about treatment options?

Then the book How Doctors Think by Jerome Groopman, M.D. is must-reading.

Dr. Groopman shares a number of stories of patients and how sometimes the doctors completely missed the boat on making the right diagnosis… and other times succeeded spectacularly at making a correct one.

He shows you what goes through the mind of a doctor while analyzing a patient’s symptoms and, more importantly, how you can be an active partner with the doctor.

The most compelling of these stories for me was the one at the beginning of the book about a woman named Anne who pretty much went through hell for 15 years before getting the diagnosis that saved her life.

This is the beginning of her story: “Around age twenty, she found that food did not agree with her. After a meal, she would feel as if a hand were gripping her stomach and twisting it.”

When I read that I stopped and said to myself, “I hope she got the blood test for celiac disease.”

I have celiac disease and know all too well how under-diagnosed it is. Because I have my own difficult story about celiac – beginning with nearly dying from it at age 2, and then being hit hard by it again in my late 30s because I had been taken off the gluten-free diet at age 10 – it gets my dander up when a patient doesn’t get tested for it when there’s even the slightest suspicion of celiac.

The story continues by describing how she was diagnosed with an eating disorder (Argh! If she were male I bet that wouldn’t have happened), referred to psychologists, endocrinologists, orthopedists, hematologists, infectious disease doctors, etc.

She wasted away to 82 pounds even though she was eating 3000 calories per day, mostly pasta and bread. Of course that made me say, “Hello! Give her a celiac test!”

She had the bones of  an 80 year old woman because of malabsorption and her boyfriend literally dragged her to a gastroenterologist even though Anne had given up all hope.

I couldn’t believe it took 15 YEARS before she saw a gastroenterologist!

This doctor shoved aside her thick file and simply listened to her story and didn’t let himself be clouded by her medical history.

Sure enough, she finally got the celiac diagnosis, but Anne said it might take her years to recover emotionally.

Again, I want to emphasize that not every story in the book is a horror story like this. Many of the stories are just the opposite.

But the point of all the stories is to teach us that we must be partners with our doctors in our own health care.

Even if you don’t like consulting with Dr. Google or Wikipedia or reading other medical literature, you can at least help your doctor by doing the following:

Tell your doctor the story again as if he or she has never heard it – what you felt, how it happened, when it happened. Telling the story again will help you recall a vital bit of information you may have missed before.

Tell your doctor what is really frightening you. It doesn’t matter how irrational it is.

Here are questions Dr. Groopman says you should ask your doctor:

What else could it be? One of the doctors in the book said she always thinks of alternative diagnoses, even if the diagnosis is a straight-forward one. In rare instances it’s the alternative diagnosis that’s correct.

Is there anything that doesn’t fit? This will prompt the physician to pause and let her mind roam more freely.

Is it possible I have more than one problem? This will help your doctor cast a wider net and ask questions he didn’t ask before.

Another thing Dr. Groopman emphasizes is that it’s OK if it takes a while to make a diagnosis, so don’t unnecessarily pressure your doctor.

One of the doctors featured in the book says he spends several hours each evening thinking deeply about his patients’ cases. He refuses to make quick diagnoses for difficult cases.

In fact, uncertainty is often essential for a successful outcome because it demonstrates “the doctor’s honesty, his willingness to be more engaged with his patients, his commitment to the reality of the situation rather than resorting to evasion, half-truth, and even lies. And it makes it easier for the doctor to change course if the first strategy fails.”

Because the Baby Boomers are entering retirement years, it’s all the more important we learn from books like these as doctors will be busier than ever and we’ll have even more friends and family members in need of health care.


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