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You know, every time I mention this I get strange looks (I also have now just realized that makes me sound like I bring this up very often - I've done so maybe twice):
My odd specific fear is based around the fact that I have quite a few medical issues, a lot of the symptoms haven't been resolved yet due to not knowing the root cause. This has been the case for years... I fear that I'll end up leaving this planet in some strange way that ends up triggering an autopsy being performed on me. The examiner then basically says "Wow, this guy lived a tough life. If only his doctors had known about XYZ, these issues could've been easily solved" - and that effectively all of this that I deal with is "for nothing".
On one hand, I like to think that if seeing numerous specialists for how long I've been doing so hasn't resulted in answers, then it's probably not super likely that an ME would just randomly find the answer on a simple autopsy.
On the other hand, quite a few of the doctors that I see don't really listen, and are always in a rush to get you out the door in five minutes... So maybe not.
In the end, I try not to think about it too often - there's nothing more that I can do, at least not reasonably. I mean sure, I could go to medical school and try to become a doctor and hope by then I have the knowledge to diagnose myself, but I wouldn't really call that "reasonable". Plus, I hear doctors make terrible patients.
I have similar feelings about my partner. They’re constantly in and out of the doctor’s office for a variety of medical issues. It would be nice if there were at least some sort of diagnosis. Like we have family and friends say “oh it’s good that the tests for all of those things came back negative” like it somehow means her symptoms will stop since she wasn’t diagnosed. Every time I hear it, the voice in the back of my head goes “how is not knowing the best case scenario?” At least if you have a diagnosis, you can work on treating the root cause.
Yep, I definitely am all too familiar with that experience. I've tried to accept that this usually comes from a genuinely good place - people often don't know how to interpret the news and want to say something positive. But sometimes I wish for more honesty of "Wow, that fucking sucks, I'm sorry". Most of the time I don't even share the (lack of) updates anymore unless its very explicitly asked for.
That all being said, I do hope your partner gets some good news soon - I truly feel for them. Not knowing creates problems of its own.