Sometimes strong advocacy is exactly what is needed.
NOTE: This is not me disagreeing at all, just your point moved me to make the obvious counterpoint, having been through all this myself very literally and very recently. I know firsthand how important the advocacy is, but also how often it causes nothing but harm. There is a real tricky balance between agency vs acceptance when you've truly lost control of things, like in these cases.
Also, doctors split their time among patients and their various diseases. You, on the other hand, can focus your study on your disease. If you have a scientific mind, you can become an expert with enough study.