"You just have to keep constant surveillance," he says. "Information is power. The more you know, the better equipped you are." Don't be cowed into silence by uniforms or vague references to "procedure," Handler says; as a patient it's possible to be courteous without being meek. Bring an advocate with you. Make noise. Get over the fear of being regarded as demanding. "Ask for what you want, a hundred percent of the time," he says. "Be willing to hear no. Be willing to negotiate. It sounds simple, but asking for what you want is difficult to do."
Here's how difficult: A while ago, in a doctor's office waiting room, mildly feverish and feeling low, Handler found himself gazing at a receptionist who had just told him to go wait for the doctor in the examining room—because she needed to step away from the desk for a few minutes, and the doctor would want Handler to be ready for him. "Now, I know that in the waiting room there are cushioned chairs and magazines, and it's warmer," Handler says. "And I was supposed to go sit in a hard chair in the cold examining room."
To his astonishment he hesitated, Handler says, and then said he believed he would stay where he was. "I said, 'Doesn't the doctor have legs? Couldn't he walk up here and find me?' She looked at me like I was out of my mind. And I was amazed to find that it was still hard for me, as a somewhat famous patient advocate, having been through everything I'd been through—here was this little young woman... So my main piece of advice is, don't ever give into that shyness. There's no reason not to say, 'You know, that doesn't work for me.' I don't know why that's so difficult to say. But it just has to be overcome."
Cynthia Gorney teaches at the graduate school of journalism, University of California, Berkeley.
More About Your Health
We Hear You!