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postfuturist

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postfuturist
·vor 14 Jahren·discuss
You're making a lot of assumptions that aren't true. I regularly instruct doctors on my condition in detail, they do usually listen and are reasonable. However, I am often disappointed by the lack of depth of the research they do in advance of meeting (and billing me exorbitantly).

Recently, my sister (same condition) drove a couple hours to see a specialist who had obviously not read her file or done any research and made some truly awful suggestions (one that could certainly have lead to her death if she had followed it). He billed her for the time.

Doctors are like coders, some are orders of magnitude better than others. Some are so bad, they have a net negative impact on your health.
postfuturist
·vor 14 Jahren·discuss
Yep, it's also disheartening to see them holding a printout of one of the few articles available online, which I already know is pretty out-of-date and down-right wrong in places.
postfuturist
·vor 14 Jahren·discuss
It pays to become an expert in your own (or your family members') medical conditions, because you'll quickly become more of an expert than 99% of the doctors you will rely on for care. It helps when they all ask the same dumb questions, which they will do. If your condition is mildly rare, you'll notice when you see a new doctor, that their knowledge will be limited to what you found out in the first hour of internet research on the condition, unless they are a specialist on that particular condition.

I have a slightly rare genetic condition, and I've only met 2 doctors who know more than I do, and that's because they do active research on the exact condition and have authored or co-authored multiple research articles on it.