this post was submitted on 06 Oct 2024
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For me, it's disappearing. That someday something will happen to me and no one will ever know what it was and where I am. That I will become one of those mysteries you see online and on TV shows. Whenever I think about it I feel nothing but dread.

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[–] russjr08@bitforged.space 3 points 5 days ago (1 children)

I've had health issues since I was a kid (all stemming from developing Crohn's Disease symptoms before I was even a teenager), and a lot of them still haven't been resolved (in part of reasons such as developing new conditions due to medications I took to treat another condition). One of the worst things I fear is that if I randomly end up leaving this world in a way that incurs an autopsy, the results will end with something like "Damn, this man had issues. If his doctors had known about X then he could've lived a much better life, the treatment is simple".

I go through so much, and I've done countless research to try to track down possibilities that my doctors hadn't considered (some of my research has in fact lead to me finding out new things that my doctors didn't account for, even as of this year) - and I always have this terrifying doubt of "What if I had just chosen a different doctor, the next one on the list might've had this idea years ago and prevented some of this". That line of thinking of "Could've, should've, would've" doesn't help of course (as my friend likes to tell me "What if the sky were green?") but that doesn't stop me from thinking about it more often than I'd like to.

[–] Tehdastehdas@lemmy.world 1 points 4 days ago (1 children)
[–] russjr08@bitforged.space 2 points 4 days ago

That is awful, Celiac's (and really any autoimmune disease) is no joke. I see a lot of parallels reflected in their post and I truly hate that for them so much - constantly struggling to find foods that you can tolerate, having numerous surgeries, seeing a million different doctors, being in and out of the hospital all the time to the point that its a second home, lab test after lab test that only result in more questions than answers, symptoms and other issues spiraling up due to complications of going through the condition - you name it.

I feel for them, every day feels like you've got the curse of Sisyphus. I feel like there has to be a solution for people like them and I, and its unfortunate that there is just so much about the body and its various systems that we don't understand. I constantly struggle with the idea that we've come so far with the sciences, and yet it feels like in matters of human physiology like the GI, immune, and nervous system we've barely scratched the surface.