150 Becoming a Patient
Gossip can spread—even if it is inaccurate. Brian, who had hepatitis,
said, ‘‘There were rumors about me. I lost weight, looked exhausted, and
wasn’t as sharp. A nurse asked one of the other physicians if I should be
tested for HIV.’’
Some understood that an individual they informed might feel upset and
then tell others. To avoid this possibility of wider diffusion, some chose
utter silence. Peter, the medical student with HIV, felt his career de-
pended on strict confidentiality, but he faced conflicts as a result:
It puts the question of confidentiality on anyone I tell, because
once they know, they’re going to need support. I can’t let them not
do that. But if they tell someone, that person tells someone
else. . . .
Peter felt caught in these binds, recognizing the degree to which infor-
mation—specifically medical information—is by its nature social. Others
wanted, sought, and spread it to lessen their own distress about it.
At times, a complicated choreography resulted, as a doctor-patient
learned through indirect comments or innuendos that others knew that
he or she was ill. Paul needed to tell someone in his residency program,
and did so. He then sensed, based on subtle cues—how they would ask
questions—that others had learned of his infection. These others knew,
but didn’t say anything explicitly to him about it.
I really needed to confide in somebody in my residency, and talked
with the behavioral science director—a very loving and kissy-
touchy-feely person. But afterward, it became apparent that people
knew. It was never discussed. It just was understood by the questions
they would ask: ‘‘Are you feeling ok?’’
Here again, awareness of the lack of rights to this information can prompt
others to reveal their knowledge only indirectly.
In the era of HMOs, computer files, and the Internet, many simply
resigned themselves to the loss of medical confidentiality. Yet the impli-
cations of such lack of privacy were not always known, even if nonetheless
feared. Paul, whose job disappeared, said that in his office, confidentiality
simply required too much effort.
Ten people work in this office, and have husbands and children. In
most cases, I don’t think it’s intentional. I watched another doc-
tor try to prevent her infection from going public—it just wasn’t