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Tuesday, August 2, 2011

How long have you had hemophilia?

photo by Barbara Beaird

My friend Bill and I used to joke about the questions health care providers asked us. Bill had Hemophilia B, a factor IX deficiency. Although our bleeding disorders were different, our experiences with doctors had been much the same. Medical professionals rarely wrote our answers down or consulted our previous medical records for information. Not surprising to us the questions didn’t make any improvement in our medical care. What was startling though was how the questions we had been asked so routinely were identical. By the time we were in our twenties we had answered the same questions countless times. More than once I had been asked. “How long have you had congenital afibrinogenemia?” I felt as if I should carry a dictionary with me and open it up to congenital: adjective (esp. of a disease or physical abnormality) present from birth.

Often two or three different doctors would ask the same questions in one day. Once the doctor had finished asking his or her questions, they showed little or no interest in us. It felt like we were rare birds in a zoo, not people who had gone to a hospital for treatment. It took years for us to understand that we were viewed as subjects for research. We were offering a short cut for doctors who didn’t want to use the medical library.

Bill started responding with “Are the answers to your questions going to help you treat me or are you asking me because you need to learn?” He didn’t say this with a sarcastic tone of voice; he simply wanted the inquisitive doctor to be honest.

Like many people we wanted to be of help in educating doctors. We weren’t acknowledged for providing a service; instead we were expected to respond to questions that seemed irrelevant, even foolish, before we could receive medical attention. It seemed as if the priorities were upside down.