100 Becoming a Patient
In the end, Steven did not actually try a diabetic diet; it appeared too
onerous. Efforts at complete empathy can be hard, if not forced by disease.
These ill doctors observed, too, that patients who did not adhere some-
times got blamed. The physician was not blamed, even if he or she had
failed to educate the patient about the potential side effects. Jeff, the ad-
olescent specialist, said that Latino patients often didn’t question authority
figures. If a patient was not compliant, the doctor might simply fault the
patient, whereas the patient might not have understood the regimen, and
feared asking.
These ill physicians often became more aware as well of colleagues being
overly ‘‘cavalier’’ about prescribing medications. In part, physicians may too
readily follow clinical guidelines that incorporate researchers’ recommen-
dations more than patient experiences. Paul, the internist who lost a job
offer due to HIV, thought doctors pushed HIV medications too aggressively.
These physicians don’t have any sense of what the medications
really do to you. For many patients, starting medications means
declaring your diagnosis to your insurance company, and as a re-
sult, losing jobs, developing new symptoms, being sick at work,
and reminding yourself of the disease every day. Doctors just don’t
understand that. I would encourage patients to go see a doctor
who’s HIV-positive, who’ll have a much better idea of what
patients are getting into.
Though patients do not necessarily have to consult only physicians with
their same illness, Paul’s comments highlight deficiencies in medical
education.
Psychiatric Symptoms
‘‘I now know what it’s like to be frightened,’’ Charles, the internist with
HIV who had become an ‘‘underground researcher,’’ sighed. These phy-
sicians had frequently downplayed and overlooked psychiatric difficulties,
and now became far more sensitive to symptoms of anxiety and depres-
sion that can accompany physical disease. They revealed biases con-
cerning these symptoms that are important for both lay patients who
experience the symptoms, and fellow doctors to bear in mind.
The prospect of future physical symptoms can itself generate anxiety—
far more than expected. Charles now came to see these issues ‘‘in a way
I never could empathize with before.’’