‘‘Screw-ups’’ 97
Running meant everything to me. It was how I got out my frus-
tration and anger. I got a runner’s high. It was an escape. But
my aerobic capacity went down. My internist didn’t take that as
seriously as I wanted. She’d say, ‘‘You’re such a jock!’’ I often felt
that if I couldn’t run, I’d just as soon die. In childhood, I felt
bad that I couldn’t do anything athletic.
Such symptoms may thus be nonspecific and unimportant to providers,
but carry highly significant meanings to patients.
As a symptom, insomnia, too, proved much more distressing than an-
ticipated. For months, Pascal, the Lebanese internist with HIV, couldn’t
sleep, which disturbed him far more than he had envisioned.
Ever since I was diagnosed, I’ve had insomnia. It became a constant
problem. I did all the stuff a physician would tell a patient with
insomnia: not drinking caffeine, not doing anything else in bed but
sleeping. I went to hypnosis, even took antidepressants—but
nothing helped.
Consequently, Pascal learned not to dismiss this symptom as he and other
physicians often had.
These ill doctors newly appreciated such symptoms as ongoing nausea,
tingling, and itching. Paul now better understood, and could teach others
about, these:
It’s so much easier now to understand what a patient is saying. In-
stead of just discounting ‘‘My feet tingle,’’ you truly understand that.
I try to frame it to medical students so they can understand: ‘‘Re-
member your worst hangover. That’s what you’re doing to people
with these medications—headaches, nausea, vomiting, diarrhea.’’
Questions emerged, too, of how to view and weigh the benefits of
treatment versus the risks of rare but severe side effects. Physicians at
times discounted or ignored these adverse events, even if permanent or
fatal, given the rarity. Nonetheless, a potentially fatal side effect, even if
a clinician thinks it is uncommon, may deter patients from treatment.
Suzanne stated:
A colleague did a whole presentation about one drug, and not once
mentioned Stevens-Johnson syndrome. I had decided that Stevens-
Johnson was too much of a risk for me. I asked, ‘‘What about
Stevens-Johnson syndrome?’’ He said, ‘‘It’s so rare that they don’t