jimmywetnips

So in the past 4 years, I've had 4 separate health issues crop up one after another. At first, I tried to get them sorted out but not really that seriously. I half heartedly addressed the first 3 but I tend to ignore things and focus my energy on the entrepreneurship rat race. But the last issue was not only super debilitating but in combination with the other 3 has destroyed my quality of life and ability to function.

So I started doing what I think a lot of engineers would do. I tried to find the bugs in my body. I would come up with a theory, run some tests, then rule things out one by one. Of course there's only so many tests you can do at home or through Quest (and I'm not a doctor), so I still need doctors' help. That's when I realized that the way engineers, mechanics and House MD solved problems is not how real doctors solve problems.

Just a random hodgepodge of problems I'm having:

1. I feel like I have to do as much reading and thinking for myself since nobody is gonna be a bigger advocate. But also, I have to be coy and pretend like I didn't in case I accidentally slip a piece of medical jargon and they start thinking Im a webmd hypochondriac.

2. I'm not confrontational and doctors are trying to get you in and out. So people say you can try "getting tough" with doctors by asking for written reports that they chose not to run a test, or by using "keywords" like, "what's your differential diagnosis". But my gut has never agreed with going that route. I don't think I can get to the bottom of this with anything but an ally. I can't imagine combatting my way to success.

3. I've seen people mention the rare disease centers (https://news.ycombinator.com/item?id=34549162). But I don't think what's going on each on their own is serious enough that I would be accepted. I just don't foresee my shit luck going in my favor

4. Every specialist sticks to their lane, and don't want to deal with other issues. But everything (especially in my case) seems to be connected. Am I supposed to just ignore everyting and deal with them with blinders on even though I suspect the connections?

5. I read that it's better to be specific and have objective data so I spent 2 months gathering data, then showed up one time with a time series and correlation to prove it's not in my head. I have not really had luck with this tbh because I think I just come off as a tough patient and a "braniac"

6. I have a friend who is very type A who got to the bottom of his issues but had to see 9 doctors before landing on a seredipitious diagnosis. I don't know if I have the fortitude to go see 9 doctors. With specialist appointments 3-6 months booked out, and every single visit increasing your chances of being labeled a difficult patient, I literally feel so dejected attempting this. My one track ADD mind that is great at groking code non stop is not great at following up on multi month, on and off scheduling and bureaucracy. Not to mention that this would be a full time job and I don't know how I could balance that and a dayjob.

What I really wish existed was some sort of Tim Ferris style book with actionable tips and tricks to navigate this mess from the perspective of a chronically/mysteriously ill person. So I kind of wanted to get a discussion going for anybody else too who's in this situation and maybe we can share some info :)