Time and time again I hear stories from patients recounting years of personal suffering from a mystery disease or a chronic illness. They describe in bitter detail either being ignored by doctors or being shunted from doctor to doctor with no help provided. Despite spending vast sums of money on tests and useless prescriptions that far too often make them worse, they continue down a lonely road in their search for help.
When I was a resident in neurosurgery, baffling diseases that were difficult to diagnose always intrigued me. Many of my colleagues, on the other hand, did not share my interest. In fact, during my 24 years of medical practice, I found that most doctors did not like such challenging cases. In addition, the majority would rather avoid dealing with any chronic illness. Instead their preferred patients were those with easy-to-diagnose diseases that responded quickly to simple treatments.
I’ve spent my adult life listening to doctors and engaging in private conversations with them. This insider’s view has given me knowledge of how doctors think. Many of you would be surprised by their closely held feelings and their shortsighted views about their patients and about medical practice in general. This is not to say that doctors are always cold-hearted simpletons — even though a disturbingly large number are and that number is increasing. Fortunately, there are still many fine, highly trained doctors in this country who truly care about their patients and want them to get better, and who save many lives each year.
As a surgeon, I have seen some incredibly brilliant and skillful surgeons who perform in ways that come close to being miraculous. In most cases, though, these feats of skill are in the area of acute care medicine — that is, in patients with heart attacks, severe injuries, acute infections, and hemorrhagic conditions of various sorts. The main problem is the lack of options for patients suffering from chronic conditions and diseases that are difficult to diagnose. These patients do not get the help they need in many instances, and often, they end up dispiritedly living with these mystery diseases and chronic illnesses.
