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Survival instincts propel 'difficult patient' to insist on quality care
Date:9/10/2008

writes. "I'd been an avid cyclist, and suddenly I had difficulty getting out of bed each morning. When I returned to the rheumatology clinic for a follow-up appointment, the doctor attributed my symptoms to stress, irritably dismissing me with, 'You just have Raynaud's.' I knew that physicians often blamed stress for the 'inexplicable' ailments of young women; I refused to be dismissed so easily. I sought a second opinion from another rheumatologist at a different major academic medical center, and he reiterated the same diagnosis. Although I truly believed that I had scleroderma, I wanted to be wrong. So I acquiesced and, by doing so, caused further delay in my diagnosis."

Mayer goes on to describe years of inappropriate and ineffective treatment, struggles to get physicians to listen to her, and hopelessness.

"But my husband prodded me to fight," she writes, "and soon my survival instincts kicked into high gear."

She sought physicians who were supportive and helpful, traveling hundreds of miles for appointments. She and her husband longed to have children, so, after searching the medical literature, she determined she was not at high risk for developing complications for herself or the baby. Defying the recommendations of scleroderma experts, she became pregnant and, over 26 months, gave birth to two healthy babies without causing additional harm to her own condition.

"I've faced many decisions about my care during the past 12 years," she writes, "and my assertiveness has been greeted variably with contempt, resignation and, at times, support."

The doctor/patient relationship must be based on trust, she said. And that trust has to go both ways.

"I wasn't interested in being told what to do and I expected my doctors to respect my right to make truly informed choices that were consistent with the way in which I wanted to intervene in my disease and live my life," she writes. "But being a difficult patient is a
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Contact: Patric Lane
patric_lane@unc.edu
919-962-8596
University of North Carolina at Chapel Hill
Source:Eurekalert

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