Around Scientopia this week, we're doing a critical analysis of the "science" (or lack thereof) in women's magazines, exemplified by a bunch of articles in Women's Health magazine. Most of the articles we're looking at are pretty ridonkulous, and they deserve the takedown they're getting. The one I picked, however, "Patient care: Survive your doctor" actually gives pretty good advice: be your own health advocate.
As they point out in the article, while "it's a doc's job to (manage) your medical problems," we can't rely on them to know what's going on inside our heads and bodies when we aren't talking to them or following up. We tend to fall into the "respehct mah authoritah" trap when doctors are telling us what is (or isn't) wrong with us, but when it comes down to it nobody knows your body better than you do. Just like no single patient is guaranteed to fall in the middle of the symptom distribution, no one physician is guaranteed to notice, synthesize and correctly identify every medical issue. I definitely groaned at the mention of "House" as an example of how important medical history is to diagnosis, but as a point it is relevant. These days, unless you have a legitimate medical home and someone who knows you, you are the only one who knows your story and you have the right to be heard by your physicians.
This touches a personal nerve for me: last year, my close cousin died of adrenocortical carcinoma. I've written about this before. She experienced the classic demographic-based misdiagnosis--skin getting bad? weight gain? hair loss? anxiety? Periods getting weird? You're a young woman, these are common, just hormonal, maybe polycystic ovaries, try to get more exercise, try to rest more, do you want to talk to a counselor? Let's try prozac. In the end, it took about three years or so of this getting worse, and worse, and worse, until she was hardly sleeping, had the classic Cushing's moon face/abdominal distension, and kept pressing on going to the free clinic until the nurses there finally said "Look, we're going to just test your cortisol." It was so sky-high, it practically hit the limits of the test. Part of the problem was that she just kept assuming, "Well, I guess the doctors know what they're talking about. I must just need more exercise. I'll try to eat healthier," as the tumor grew and grew, eventually invading her vena cava and reducing her probability of survival once it was finally found (in Stage IV) by more than 75%.
What could have been done? Later on, not much. By then it was too late. But early on, the if-only's of her situation are just too painful for us all to contemplate. If only we had noticed, if only we had been able to push her to get more opinions, if only she had better (or any) health insurance during that time (and that's a whole other story...). If only we were all better trained to be our own health advocates. Then she might still be here, laughing with us until she almost pees her pants at the Thanksgiving "kids table" and delighting in with my daughter, her namesake, who would have loved her silliness, spirit and flair.
So, I appreciate what this article says: you have to stand up for yourself, and you have to stay informed. Don't just accept everything you're told, find a physician who you connect with and who you can talk to. Don't just see your gynecologist for every problem, find yourself a medical home. Educate yourself on the options available to you, keep up with current opinions and don't always just accept the so-called 'simplest' explanation.
On the other side of this coin, though, is the risk of falling sway to the woo. Woo is just as dangerous as misdiagnosis. Woo is attractive because it says it can explain these things we just don't biologically understand--it's a catch-all for the fear, uncertainty, pain and anxiety that comes with any complex medical issue. Since there is almost no such thing as a truly simple medical issue (besides things like, say, colds and ear infections), it's that much easier to be drawn to the mystical or "holistic" explanation, the same way humans are drawn to any seemingly satisfying magical answer for their problems (whether financial, health or psychological). But just like time shares in Florida, if it sounds to good to be true, it probably is.
Staying informed about the evidence-based information on possibilities, options and outcomes is our best bet to manage our own health care. None of us are too stupid to understand it, and there are lots of resources out there to help the unsure (like our very own PalMD, for example). Be your own health advocate, but use your brain about it, and accept that you'll either fall within the normal range of the distribution or you won't, and it's your job to trust your instincts about seeking help.