Russ

It really makes me wish I could turn back the clock. When I was a kid, my pediatric GI was very aggressive with my treatment - each appointment that I had she would ask how I’m feeling and if the answer was anything less than “I feel fantastic!” then she would start to come up with a way to pivot my treatment along with finding more tests (where applicable) to continue trying to tackle the issues. All other answers meant there was still work to be done.

As a kid it wasn’t something that I understood and could appreciate, from my limited perspective it just looked like she kept wanting to put me on new things that had the potential to make me feel even more sick (I vividly remember having to take a course of antibiotics at one point that made me sick for weeks), or to be put through more machines, have more of my blood taken, etc. I’d do anything to get that back though, as you mentioned, doctors are incredibly dismissive.

I don’t even know when doctors (at least here in the US) started to turn sour. Even as a kid, before I got referred to GI my PCP was incredibly dismissive of my concerns and that of my parents - their “best” theory for why I was practically just skin and bones came down to “He probably has an eating disorder that you’re not aware of”. The other thing I liked about my pediatric GI was that she spoke to me, not “about” me to my parents. Even though my parents obviously don’t go to my doctors appointments now, in a way it still feels like I’m being “spoken about” rather than spoken to with most of the doctors I see.

In comparison, almost all other people that I’ve interacted with in the medical world are fantastic - lab techs, nurses, nurse practitioners, phlebotomists, etc. Its just the doctors that are terrible.

I constantly hear about how medical science is so advanced, but with the way doctors generally act… well, “could’ve fooled me” is usually my words on that.

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.

And that’s fine, at the end of the day, I’m not forcing you or anyone else to read it. OP asked for a specific fear, and I responded - that’s all.

Hmm, do you mean whether they’d find an answer (or even what the answer might be)? If so, it’s tough to say.

Edit: This is a much longer response than I intended to give… My bad!

One of the issues I’ve been dealing with for example is I’m constantly incredibly tired. The feeling that most people have when they first wake up for a couple of minutes where they’re not fully awake even though they’re “physically awake” is the closest I can describe it, except I have it all day most of the time.

Doesn’t matter how much sleep I get, the result ends up pretty much being the same. I do often have sleep issues, but sometimes I think that it’s a cyclical result of me being too tired throughout the day and thus not doing enough, and so my brain doesn’t think that it’s time to sleep because I haven’t done anything (but then because I don’t sleep well, the next day I still end up doing “not enough” because I’m even more tired from the lack of sleep)… I’m not even sure if that makes sense, but when I bring it up to doctors they don’t seem to think it’s a crazy theory.

Trying to find out the root cause though has not been easy, as sadly lethargy and fatigue are very generic symptoms - the amount of things that can cause it (even on a chronic level like mine) is… quite a list. And then if you eliminate one, that doesn’t mean that others aren’t affecting you either.

So for example, it’s common for me to be low on iron and other essential vitamin levels because I have Crohn’s Disease which one of the side effects is that you have a hard time absorbing those nutrients. Nowadays I consistently see a hematologist who checks for these things, and I can have iron infusions done to fix low iron levels.

A couple of years ago, my results were so low that the lab tech called my doctor saying it was dangerously low, who then called me at 8PM in the day saying that I needed to drop what I was doing and go straight to the ER for an emergency blood transfusion. One of the jobs of iron to my understanding is to be a binder for oxygen so that it can be carried throughout your body - if it gets too low, you risk your organs basically not getting enough.

Then last year we found out my testosterone levels were practically that of an 80 year old man - I’m in my late 20s… So I had to start TRT, and everyone hoped that would be the magical fix - sadly, it wasn’t (though it still needed to be addressed anyways). That however comes with its own issues.

Now they want me to get a sleep study done because their next idea is that I might just never (or very rarely) be entering REM sleep - if you don’t enter REM sleep, then you’re pretty much not actually sleeping (an 8 hour sleep without REM is practically just an 8 hour “power nap”). But even if that were the case, and we got it fixed, there’s still no guarantees that there isn’t some other issue that is triggering the fatigue.

As to my gut feeling, I know there is certainly an answer - I just don’t know what the answer is. But there is absolutely zero chance that the majority of the humans on this planet can go about their lives and actually be awake with enough energy to do “normal things” such as work an 8 hour day, and that I’m somehow that unique to just be missing some vital gene or such, especially when I used to be among those people. I haven’t even hit my thirties yet!

Somewhere along the way, something went critically wrong and I lost that “ability”, but as to what that “something” is I unfortunately just don’t know because after all these years I’ve exhausted the list of things I think it could be based off my limited medical knowledge (I of course never went to medical school, but living with an autoimmune disease since before you even started puberty you do at least learn a little bit).

I guess the other tangential fear I have is that I’ll spend the rest of my “good years” trying to figure this out, and that eventually the doctors will just blame it on old age. Time only flows in one direction, once March 16th 2025 has come and gone, it’ll never swing by again - there’s no do-over if they just don’t find the answer in time.

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.