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Sometimes diagnosis is more precious and elusive than treat-ment. Eight years ago Hope White's life changed forever, and as exhausted as she was at the time, the experience was one she'll never forget. It was summer and White, who was just a year out of college, felt that it was time to start making some real money. A "high-energy" person, she didn't think twice about working days and evenings. When she got tired, she would nap at lunchtime.
Sleepiness lapsed into fatigue, which became constant exhaustion. White was puzzled; in the past she had been able to work long hours without resting, but now she began breaking out in dripping sweats. Her physician thought she might be trying to do too much, and suggested she take vitamins and enroll in an aerobics class to restore her energy level. Her shoulders, elbows, and knees began to ache; her physician maintained that she was simply feeling "run down."
Six months later, White was tired, frightened, and still without any idea of what ailed her. The turning point came when both of her elbows locked in an upturned position. White fled to an emergency room, where she described her symptoms to a baffled group of doctors.
One speculated that she might have tennis elbow in both arms. "I don't play tennis," White said. "I'm not leaving here until I find out what's wrong with me."
Another doctor suggested she be tested for lupus, a relatively rare autoimmune disorder that can cause a wide variety of symptoms, including fatigue, rashes, fevers, sweats, mood changes, and arthritis. That test came back positive. Ironically, although she had been diagnosed with a potentially fatal disease, White was elated simply to find out that something was indeed wrong with her.
The experience of seeking a diagnosis can be profoundly demoralizing for patients and doctors alike. Around the time White was wondering what had suddenly gone haywire with her body, Malcolm Rogers, M.D. '69, associate professor of psychiatry at Harvard Medical School, was leading a survey of the psychological impact of lupus in patients. He was surprised to find that, among the small number of patients in his study, the average time between the onset of symptoms and diagnosis was seven years. "The situation may be a lot better now," says Rogers, "but a lot of people who were later diagnosed as having lupus reported having a frustrating experience while they were trying to figure out what was going on."
Although black women are at increased risk for lupus, White, who is African American, still had to wait months before her condition was diagnosed and treatment began. In this day and age, in this country, how can that possibly be?
"Society somehow created this concept that medicine has evolved to the point where you take time out of your busy day, you go see a doctor, they take some of your blood, and within a few days, you get an answer," says Lee Simon, M.D., associate professor of medicine at Harvard Medical School and director of graduate medical education at Beth Israel Deaconess Medical Center. "In rheumatology"--the study of autoimmune diseases--"and in lupus in particular," he says, "that doesn't exist."
The problem is that some diseases are extremely difficult to diagnose. Despite today's technology--the MRIs and CAT scans that allow us to look inside the body, the sensitive blood tests for proteins, enzymes, lipids, and immune markers--diagnosis is still a very inexact science. Autoimmune disorders, multiple sclerosis, fibromyalgia, certain cancers, gland disorders, and so-called occult infections frequently take time to identify. Even when accurate tests are available, potentially fatal diseases frequently go undetected. Type II diabetes is one of the most widespread and dangerous diseases of adulthood in this country, yet it's estimated that only half the 16 million people with the disease have been diagnosed. Many patients are detected only when secondary complications, such as eye, kidney, or heart disease, require treatment.
Sophisticated as our diagnostic processes have become, we have to admit that there are many disorders we don't understand or haven't even recognized. A little more than a decade ago, AIDS was an undiagnosable enigma. Within this decade, researchers may define more lethal disorders that had previously been undiagnosable.
"Suppose you're a doctor in the year 1900 and you've got an office up on Beacon Street in Boston," says Anthony Komaroff, M.D., professor of medicine at Harvard Medical School and senior physician at Brigham and Women's Hospital. "One patient has a squeezing feeling in his chest every time he climbs stairs; another sometimes loses her breath for no reason; a third complains of fast heartbeat; and one walks into your waiting room and drops dead for no reason. At that time, those were all mysterious, undiagnosable conditions, because the concept of coronary artery disease was not understood until 1913."
Despite the uncertainty sometimes involved, diagnosis is still a critical hurdle in entering the health-care system. Insurance companies and health-management organizations base their reimbursement systems on the concept of diagnosis. If you're diagnosed with depression, you get Prozac; if not, you're whining. Patients who lack a diagnosis are suspected of feigning sickness, of playing a role to get attention, of avoiding other important issues in their lives under the guise of debility. Doctors may avoid seeing patients who are known to travel from one clinic to another in search of an answer.
Life with an undiagnosed problem can be extremely lonely and demoralizing. An undiagnosed patient may be referred for psychiatric treatment, and may even be branded a lunatic. Health problems can make work impossible, and yet without a diagnosis, there's no way to collect disability payments. Even spouses, children, and friends may lose their patience and become distrustful.
For patients, it helps to be assertive and to trust your own feelings when seeking a diagnosis for chronic, life-disrupting symptoms. The idea that "Somewhere out there, there's a doctor who understands my problem" offers a lot of motivation. But, as Komaroff points out from first-hand experience, that's not always realistic. At the Chronic Fatigue Syndrome Research Center at Brigham and Women's Hospital, which he founded in 1984, many patients arrive with long lists of strange, seemingly unrelated symptoms; for many of them, repeated attempts to diagnose their problems have been continually thwarted, along with treatment. The defeat is felt by both doctors and patients. "In any profession, there are problems in dealing with an issue where we don't have the knowledge or technology in hand to answer important questions," Komaroff says. "That's true in architecture, law, medicine, anything of that nature.
"But it is antitherapeutic," he continues, "to say or imply to the patient, 'You don't have a problem; it's all in your head; find another doctor.' If you can admit your ignorance--admit that you don't know what the problem is--you gain the patient's respect. Most people understand that everyone's knowledge is limited, and they can sense when someone is just trying to snow them.
"The most important thing," Komaroff says, "is something we all learned in medical school: to listen to the patient. There are times when the whole picture doesn't add up, when it doesn't sound like anything we've heard about in medical school or read about in any textbook. That's to be expected. There's a long tradition in medicine of just not understanding the disease the patient is suffering from. But you can't dismiss the patient just because you don't want to take the time to figure out the problem and fix the illness."
Ironically, Hope White is today director of Breast Friends, a breast-cancer outreach and education program with the goal of promoting early diagnosis and treatment. White is glad she stayed in that emergency room and demanded an answer. There she finally found a physician who listened to her long and well enough to make sure that she got one. Although it may take months or years, that's the way it's supposed to happen. When doctors and patients work together, most of the time it does.
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