![]() ![]() ![]() ![]() Or, unforgettably, “You’re probably just tired from having your period.” We can’t find anything wrong,” more than one doctor said. I didn’t know how to speak to the doctors with the words that would get them, as I thought of it, “on my side.” I steeled myself before appointments, vowing not to leave until I had some answers-yet I never managed to ask even half my questions. To me, my life was slowly dissolving into near-constant discomfort and sometimes frightening pain-and terror at losing control. To them, I was a relatively fit, often high-functioning young woman who had a long list of “small” complaints that only occasionally swelled into an acute problem, for which a quick surgical fix was offered (but no reflection on what might be causing it). At the same time, they didn’t believe anything was wrong enough to pursue frequently they asked whether I was depressed before even doing a physical exam. “Everything’s probably okay,” the doctors would say, or “You have an idiopathic problem,” which is doctor-talk for “We don’t know why you suddenly have hives every day.” They never implied that I was crazy, or seeking attention, or any of the other things you sometimes hear from patients (especially female ones) who have sought a diagnosis for years on end. Along the way, my blood work was at times a little off, or my inflammation markers and white-blood-cell counts were slightly elevated, but nothing seemed definitive, other than some persistent anemia. In my own case, it took doctors a long time (roughly 15 years) to recognize exactly what was wrong with me. Roughly 15 in 100 cardiopulmonary resuscitations result in a patient living long enough to be discharged from the hospital. In the hospital, I always felt like Alice at the Mad Hatter’s tea party: I had woken up in a world that seemed utterly logical to its inhabitants, but quite mad to me. What mattered was the whole busy apparatus of care-the beeping monitors and the hourly check-ins and the forced wakings, the elaborate (and frequently futile) interventions painstakingly performed on the terminally ill. Weren’t people trying to heal? That didn’t matter. The lighting was harsh, the food terrible, the rooms loud. Physicians at times were brusque and even hostile to us (or was I imagining it?). But I was also startled by the profound discomfort I always felt in hospitals. I was struck, too, by how kind many of the nurses were how smart and involved some of the doctors we met were. During the time I was ill and undiagnosed, I was also in and out of the hospital with my mother, who was being treated for metastatic cancer and was admitted twice in her final weeks.Īs a patient and the daughter of a patient, I was amazed by how precise surgery had become and how fast healing could be. In my early 20s, I contracted a disease that doctors were unable to identify for years-in fact, for about a decade they thought nothing was wrong with me-but that nonetheless led to multiple complications, requiring a succession of surgeries, emergency-room visits, and ultimately (when tests finally showed something was wrong) trips to specialists for MRIs and lots more testing. For someone in her 30s, I’ve spent a lot of time in doctors’ offices and hospitals, shivering on exam tables in my open-to-the-front gown, recording my medical history on multiple forms, having enough blood drawn in little glass tubes to satisfy a thirsty vampire.
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