It might be nice that my blood is normal, no slime in this body, but that means that the problem that is plaguing me is elsewhere. I’ve been thinking about my problem with this recent batch of doctors, and it all comes down to coming up with only one convenient answer. There’s no creativity. There’s no looking at all possible options, it’s just cut to whatever option might be the most profitable for the doctor.
This is why I keep researching more and more.
The more I have a foundational understanding of the items that are on my charts and the more research I do into possibilities, the more options we can discuss, whereas otherwise, it’s easy to guess and assume. I don’t believe much science is being used in the sort of rigorous study of possibilities and alternatives. Instead, I am just told what these people, some of whom are unwilling to explore alternatives or even consider any options other than “it’s not my problem, go talk to someone else,” which leads me down the path to not trust these doctors’s opinions.
I don’t have iatrophobia – or a fear of doctors and doctoring.
I am skeptical when a doctor I’ve met, I feel, has tried nothing and is all out of options. This is not the sort of doctoring that impresses me toward any regard. The musculoskeletal doctor I met yesterday, for example, told me that the pain doctor I met last year – the one who said my case was “dire” but did nothing to act on that – is one of the best in town. Yeah, I’ll trust that opinion from a doctor who has done nothing to help me, enough to get a second opinion referral that I should be hearing back from early next week.
Much of the work I did today was focused on pushing the ball forward.
The results of my blood work turned out all normal, so, I don’t know if I have much to research there. The results here, unlike previous results I received relating to Rheumatology, all seemed normal and clear. I did ask about why I had the wrong medication listed on my charts with the musculoskeletal doctor, and, that doctor didn’t know, so, that’s another point in mistrust. That referral to the pain clinic will probably be revisiting that whole pain management class that they were trying to get me into last year, which as I recall my insurance didn’t cover, and as I recall from that class, the most it was concerned doing mindfulness exercises and other mental exercises compared to actually fixing the physical problems of patients.
It’ll be interesting to see how that nerve conduction study turns out.
If there’s no answer with that, then, I’ll keep looking. I have nothing else I can do but research my way out of this problem. If there’s one positive about Internet-related things, it’s how we can all collectively share our experiences, and many people within disability communities share our stories of how it’s like getting treatment for uncommon problems. This is where the seeds of my distrust in believing anything doctors started – with stories of how long-term, chronically ill patients, like myself, had gone into surgeries that had complications that weren’t properly addressed, or a more common situation – diagnoses taking years or decades to establish.
Decades-Long diagnoses are more common with childhood illnesses.
Much of that is because of the same reasons I’m seeing. Doctors, overall, do not believe that I am in pain at all. I don’t get much sympathy from these doctors or healthcare providers regarding my pain levels. Whenever I tell them that I don’t have a pain management system, that I don’t take pain medicine, and I suffer greatly, they all just go along with it. It’s like I told them that everything’s fine. No one stops to listen to what I just explained about how much I suffer, because, why would they? What difference does it make to them? If it’s an easy case, they can fix it, but for a complicated case like mine, why would they consider me much more than just a problem to ship off to someone else?
These are the experiences we, as disabled people, face.
We also face the societal stigma that we’re lazy. I guarantee that I’ve experienced more pain over the past month than the average person has experienced in a year, and yet I’m lazy because I don’t do what exactly? I have to research as much as I do because it’s a survival thing. I can’t do a needless surgery to create more complications for a problem that is not clear. I believe the reason why Complex Regional Pain Syndrome[CRPS] is the current option is because these doctors don’t know and guess that it’s something like that.
My deeper research focus should be on learning specific terms.
If the doctor next week truly believes that it’s CRPS, then, I should be able to match wits with him about why it is CRPS and not any other diagnosis under the sun. What specific measurements call out to CRPS compared to anything else? I don’t know if there are any specific tells like that, but if there are scientifically measurable things that can point toward that and way from all other causes, I would be more likely to believe it. That said, I truly suspect that most of these doctors I’ve met have not “tried everything else,” as they say, because I have a whole page of terms that I have not reviewed with anyone. That’s everything else. Go over everything. I should say, “tell me why it’s not A through Y, if your answer is Z,” but I doubt any doctor will have answers on that. They’ve just skipped over B through X because, wow, it’s too hard, and there isn’t money to be made on me. At least I’m learning practical skepticism now.
I can apply these techniques to any skill or encounter… hopefully.
|Sources: My personal experiences.|
|Inspirations: Digging into where my distrust lies.|
|Related: Sober Living essays and Tripping On [The American Healthcare System] chapters.|
|Written On: 2022 April 08 [11:111111111111111111pm to 11:35pm]|
|Last Edited: 2022 April 08 [First draft; final draft for the Internet.]|