@trishanna It does seem to be a prevailing issue, like you said, and as @gladiator14 mentioned. I can tell you what has worked for me.

In 1988 I was diagnosed with Systemic Lupus, after a many-months long series of testing. Back then it was a lot more difficult to get answers. I frequently found myself being my own army, and insisting on complete information. I did not blindly accept whatever a Dr said, making them explain their decisions, educating myself on different health issues as they arose. So, I told my drs an army was needed, that was made up of more than just me. Dr's, medical assistants, nurses, lab techs, all had to help me be as healthy as possible. I refused to simply sit by, without giving my input. If a Dr was not onboard with this concept, I set out to find one who was. Easy? Nope, not at all!

Fast forward to now. This is still how I work. More health issues, more specialists, and they part of my army. Have I had to recruit? Yes. But right up front they know what is expected of them from me. Be your own advocate, don't be afraid to stand up to anyone.
Ginger