Trusting Yourself as the Real Expert About Your Health

How to Save Your Own Life: The Eight Steps Only You Can Take to Manage and Control Your Health Care
by Marie Savard, M.D., Sondra Forsyth

Step 1

"Each patient carries his own doctor inside him. They come to us not knowing that truth. We are at our best when we give the doctor who resides within each patient a chance to go to work."
- Albert Schweitzer, M.D.

The itching began in the middle of a humid summer night. Carol Watkins bolted upright in bed, flicked on the light, and checked for mosquito bites. She had spent the evening on the deck of her condo, sipping a margarita and talking nonstop with her dearest friend about their new status as divorced single moms. The citronella candle hadn't done much good, but the two women ignored the bugs. They were determined to enjoy the lilac-scented breeze and the starry sky. Carol figured she was paying the price. To her surprise, though, there were only a few bites and they weren't where the itching was. It was intense and generalized, making her want to dig at her skin with her nails.

An ominous shiver went through her. Although this was by far the worst episode, Carol had been feeling mildly itchy for several months. She hadn't thought much about it, even when it gradually got worse. Now, though, the words "Something is really wrong with me" popped into her head. She got up and found the calamine lotion. It helped a little and she finally fell into a fitful sleep.

The next morning, the itching was still there. After putting her two daughters on the bus for day camp and driving to her job as an executive secretary at an accounting firm, Carol called her doctor. He told Carol to try a moisturizer, since it sounded as though she had dry skin. Carol hung up the phone and stared out the window for a moment. This time, she said the words out loud: "Something is really wrong with me." The itching had gotten worse and now it was everywhere, a deep and urgent feeling unlike anything she had ever experienced before. Still, the doctor hadn't seemed at all concerned. Carol didn't want to come off like a wimp or a hypochondriac and she reasoned that anybody who had been to medical school must know what he was talking about. Anyway, Carol thought maybe the itching was just psychosomatic. She was having a rough time adjusting to the divorce, especially when she had to drop the kids off at her ex's house and see him with the Other Woman.

A week later, though, Carol gave in and called her doctor again. She felt silly, but she told him the moisturizer hadn't helped. He referred her to a dermatologist. Carol heaved a huge sigh, sure she was going to get some relief at last. The dermatologist couldn't find anything specific, however. But he did prescribe an ointment he thought would take care of the problem.

It didn't. By this time, Carol was going out of her mind trying to take care of the girls and pay attention at work on very little sleep. She tried two more dermatologists and one cream after another, but nothing worked. Eventually, fate stepped in. Carol's employer switched insurance plans. She had to choose a new primary care provider and go for a complete physical. She ran her finger down the list of doctors and picked me.

I first saw Carol Watkins for what I thought would be a routine visit on a burnished September afternoon over a year after her first severe bout with the itching. She was obviously embarrassed to tell me her symptoms. I remember her words well. "It's just itching, but it seems like it comes from inside. I've had kind of a bad year, so maybe this is nerves. But I can't help wondering whether there's something really wrong with me." I put my hands on the lymph nodes on either side of her neck. Experienced fingers can feel even a slight enlargement. Carol's right node was swollen, but it wasn't causing her any pain. I ordered blood tests and then a biopsy of the swollen lymph node, but I was pretty sure I already had my diagnosis: Hodgkin's disease, a type of lymphoma that has a distinctive cancer cell. Pruritus, the medical term for itching, is a common symptom. And at thirty-two, Carol fell into the riskiest age group, fifteen to thirty-four.

The tests and biopsy confirmed my educated guess. Carol turned out to have Stage 1 Hodgkin's, limited to a single node on one side of the body. As I always do with my patients, I gave her copies of the test results and helped her understand them. Her complete blood count (CBC) and blood chemistries were all normal, including her liver tests. This reassured me that she probably didn't have advanced disease. However, her sedimentation rate, at 64, was abnormally elevated. The average for women is about 20. The "sed" rate is a tipoff that something systemic and significant is going on - either inflammation, infection, or cancer. In addition, Carol's biopsy showed the typical cell of Hodgkin's, the Reed-Sternberg cell.

"You're lucky, insofar as anyone with cancer can be called lucky," I said gently. "The prognosis is very good. I'm going to send you to a cancer specialist, an oncologist. In most cases like yours, radiation is all that's needed and the cure rate is high." Carol managed a smile, and put the copies of her results in her purse. "Well, at least now I know what's wrong," she said. "Even though it's not the world's greatest news, I feel better already." Throughout her treatment, she saved all her reports, summaries, and test results and shared all the findings with her radiation specialist and oncologist. She didn't have to repeat her story or worry that they didn't have the information they needed. She was truly at the center of her care, not at the periphery.

There's a happy ending. Radiation cured her, as is true in 90 percent of cases similar to hers. But the lesson here is that Carol could have kept ignoring her own instincts, allowing the cancer to spread and her chances of recovery to lessen. When the itching didn't subside after a few months, she should have made an appointment for a physical with her doctor. Checking the lymph glands is a routine part of any examination and he would surely have made the diagnosis. But like most physicians today, he probably had what we call a "panel" of at least a thousand patients and maybe as many as 2,500 or more. He no doubt left it up to the patients to make and keep their appointments and to communicate with him. I'm not making excuses for him, and it's your judgment call as to whether he should have decided that a year was too long for him to keep giving Carol phone referrals to dermatologists without having a look at her. But the point is that he didn't ask to see her. That left the ball in Carol's court. Yet she was afraid to seem pushy or paranoid and she thought her problem might be all in her head, so she never clearly stated the fact that she suspected something serious was going on.

She's certainly not alone. Most people don't trust their "doctor within." They're too humble for their own good. Yet study after study has shown that patients know much more than they think they do about their own health. For example, researchers at Purdue University tracked seven thousand patients ages twenty-five to seventy-four for twenty years beginning in 1971. Dr. Kenneth Ferraro, a sociology professor, headed a team which had the subjects rate their own health from poor to excellent and fill out a questionnaire about their diseases. Then doctors looked at the patients' self-assessments, did extensive examinations, and wrote their own evaluations. The result? In every case, the patient's own report was as accurate or even more accurate than the physician's was. Or as renowned British physician Sir William Osler put it, "Listen to the patient. He is telling you the diagnosis."

Even so, patients are typically cowed by doctors and other health care professionals. They're afraid to have faith in their own instincts. If that includes you, you're actually making your doctor's job harder. Time and again, I've asked patients what they think might be wrong and they have said, "You tell me. You're the doctor." But studies show that 80 percent of what doctors go on when they make a diagnosis is what patients tell them about their symptoms, history, and lifestyle. Technology is wonderful and we have many sophisticated diagnostic techniques that weren't available even a few years ago. Still, there is no substitute for what you know about how you feel - and how it is different from the way you usually feel. Believe it.

About the Author

MARIE SAVARD, M.D., is an internationally known internist, women's health expert, and patients' rights champion. She is the creator of The Savard Health Record. Dr. Savard is also a medical writer and seminar provider who has lectured throughout the world on the principle of taking charge. She serves as medical director of the Cabrini Nursing Home. Her past highlights include: Director of the Center for Women's Health and associate professor at the Medical College of Pennsylvania/Hahnemann University; World Health Organization's technical advisor to the United Nations Fourth World Conference on Women (Beijing); Women's Day magazine “Your Health” columnist; Philadelphia Magazine “Top Doctor” since the 1980s and a host of the popular radio show Medical Frontiers.

Sondra Forsyth is a 1999 recipient of a National Magazine Award for an article on colon cancer, as well as the winner of an award from the American Digestive Health Foundation. Ms. Forsyth has served as executive editor of Ladies' Home Journal, and is the author or co-author of seven books. She has written extensively about health and medicine as well as other topics for the major magazines.