I recently consulted a specialist at a major medical center in New York, and a few days later, here came a questionnaire in the mail. "How much time did I spend in the waiting area?" it asked. How long was I kept waiting in the examining room? How close to my appointment time did the doctor see me? The one thing it didn't ask was whether I cared. There's no mystery about ...

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“Who’s in charge of the case?” the doctor asked a bit impatiently. My husband was in the hospital, and his care seemed disjointed and fragmented. I was concerned and called his primary care physician (PCP) to ask advice. He hadn’t known my husband was in the hospital again and seemed frustrated. I thought about his question for a minute and answered, “I guess I am. I am the one who talks to ...

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Obviously, chronic illness doesn’t affect everyone the same way. That said, I’ve heard from people all over the world with every imaginable chronic illness (which includes chronic pain), and our day-to-day lives are strikingly similar. And so, I thought I’d describe a typical “day in the life,” using my own experience from a few months ago as an example. My hope in writing this piece is for those of us ...

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My mom had Alzheimer’s. And she gave me secondhand Alzheimer’s. Haven’t heard of secondhand Alzheimer’s? I’m not surprised. I think I coined the term. The way I saw it, either I had some devastating disease as a result of taking care of Mom with her devastating disease, or I was a complete jerk. Since I didn’t want to think of myself as a complete jerk, I decided I had secondhand Alzheimer’s. ...

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Dear doctors, Are you looking through our charts and wondering what you’ve gotten yourself into? Are you maybe wishing we were someone else’s problem? Yeah, we know. It’s OK. We know we aren’t the type of patient most doctors like to take on. There are a lot of strings attached to us, and there’s a lot of paperwork waiting to join that already insurmountable mountain of paperwork on your desk. We can’t ...

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"You have no husband?"  asked an oncologist at an Ivy League cancer center, his voice full of concern. "No," I replied. "No sons?" "No." "No daughters?" "No." "No sisters or brothers?" "No." "Your parents -- are they living?" "No." When I mentioned friends and extended family, he talked right over me.  Without a nuclear family, he seemed to think, I had no one. I'd been diagnosed with stage four gallbladder cancer, usually fatal within months.  The surgeon who'd removed three-quarters of ...

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Every patient has a story and an experience, and my patient experience began on July 6, 2004. One month after graduating from high school, I was involved in a near-fatal car accident. My heart shifted across my chest, lungs collapsed, major organs were either lacerated or failed completely, my pelvis was shattered, and I lost 60 percent of my blood. I was airlifted to shock trauma near death and underwent immediate ...

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Prior to her death, a courageous young woman named Jess Jacobs, who suffered from POTS (postural orthostatic tachycardia syndrome), wrote about the worst health care experience of her life.  It is a somewhat horrifying account of hospitalization in Washington D.C.  Her goal was to work toward meaningful health care changes in the system for the better. When I came across the story of another young woman afflicted with this ...

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Recently, the widow of Robin Williams made a plea to neurologists. Susan Schneider Williams' plea, in the form of an editorial in the journal Neurology, aimed to help neurologists "understand your patients along with their spouses and caregivers a little more" and "add a few more faces behind the why you do what you do." Her article tells the story of her husband’s tragic physical and psychological battle culminating in his death ...

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Seven years ago, when I was first diagnosed with Stage 3 breast cancer, I approached it with a determination to win. As a competitive runner, that’s what I’ve always done. Cancer would be another uphill battle, with tough stretches as well as easier ones, just like my races. My oncologist encouraged me to keep running during all my treatments, telling me it would help on many levels. He and I knew it would ...

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