After the Diagnosis

Living a rich, full life with chronic illness.

The "When" Factor, Part II

A disease has a biography just like a person.

The temporal dimension of illness includes the time line of a patient's life, those moments when a disease first arrives or, later on, progresses; but it also involves the time line of a particular disease-what I'm calling the "When factor, part II." A disease has a biography just like a person. Diseases don't stay constant; ways of understanding and treating them continually evolve, so that in the course of an individual's life, the disease he starts out with may be very different in terms of medical approach than the one he ends up with decades later.

One thing I've observed is that the era when a person is diagnosed can influence his basic attitudes and adjustments; he can be stuck in the moment when he first became ill, and slow to catch up with technological advances. For diabetics, two improvements have vastly influenced self-care. Glucometers have become streamlined and finger sticks nearly painless, so that testing blood sugars is far friendlier than it was thirty years ago, when I myself was originally diagnosed with type 1 diabetes. And the newer long-acting and short-acting insulins and insulin pump allow for better delivery of insulin; you can maintain an insulin level throughout the course of the day to meet minimal metabolic requirements and deliver larger quantities, as needed for meals. With the pump, by dialing in units, you can take insulin discreetly rather than clumsily filling a syringe and injecting in plain sight of everybody else. Another change in diabetes care is the newer emphasis on keeping blood sugar low. Hyperglycemia wasn't even understood to be a risk factor for complications at the time I was diagnosed, and the practice back then was to err on the side of high glucose rather than try for tight control. For most of my own life, I've had a stubborn preference for high blood sugars (in order to avoid low ones), partly as a result of the "when" factor.

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Another common side effect of "when" is that a patient may start out with a grim, even terrifying, concept of a disease that over the course of time begins to have a much better prognosis. For example, I have a patient, Tom Mahon, who was frightened by his diagnosis of polycystic kidney disease, or PKD, a genetic disorder that can lead to aneurysms, kidney failure, and stroke. An amateur genealogist, Tom quickly realized that many of the early deaths in his family history were directly traceable to PKD. He particularly remembered his Uncle George, who had uremia related to kidney failure-he'd fall asleep in his chair, smelling of urine-and who died at age 50. But George and other family members died in the era before dialysis became widely available (the Medicare Act specified it as a public entitlement in 1971). I helped Tom with his anxiety about his family history, as well as his kidneys, and twenty years later he still hasn't needed dialysis-but it's there for him, if he ever does need it, and beyond that, the possibility of a kidney transplant. He may have been in some sense fated to the PKD, but not to the inevitable decline that previous generations suffered.

Another example of the power of "when" is in the field of oncology. Cancers vary in their causes, treatments, and prognoses, but a general trend in the last twenty years or more is the "hitchhiker" model of treatment. Many cancers, even those that have metastasized, may not be curable but are still eminently treatable. To quote Dr. Michael Fisch of the M.D. Anderson Cancer Center in Houston: "Time is bought by going from point A, the first-line therapy, to point B, the second-line therapy, to point C, the third line of therapy, and so on. The approach can continue indefinitely, as long as new therapies become available and patients remain well enough to withstand the rigors of treatment." This treatment model means that many cancers have in essence become chronic illnesses, where once they were considered acute and fatal.

An awareness of "when" is an important tool for finding a relationship to one's particular illness. Patients can be less haunted by specters from the past, and more able to jettison outmoded attitudes, if they get a firm grasp on the temporal moment. Any angle on an illness that promotes mastery, nourishes hope, and opens the door to the future is of value to people as they do battle with diseases that unfold, as life itself unfolds, in time.

 

 

Julian Seifter, M.D., is a professor at Harvard Medical School, and the chair of the Ethics Committee on Human Research at Brigham and Women’s Hospital in Boston.

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