throwback Thursday: hospital treatment and the cultural wall

I know, it’s already Friday some places.  Still, here is a tbt post re:  emergency room visit a few years ago.

Another reminder today that all the help (for me but also for mine) I supposedly just need to reach out for is not help at all. People are always telling me that if I asked for help more often that I’d, you know, get help. Instead, I invest time and energy I do not have, and end up with less time and energy than before, and no more help, support, resources, or knowledge than before. Plus I am that much more jaded, which I struggle against, because I need more struggling in my life. Also I get the darling experience of being personally dismissed, invalidated, or sometimes just misunderstood by yet another authority figure or expert, because I need more of that in my life too.

To be fair, 1 in 20 times that I ask for help I get help and not a traumatic experience. And individuals are a better bet than departments or facilities every time.

The hospital/ doctor/ expert_in_general experience is really about hitting a cultural wall. Here is my attempt to explain (this particular experience involves trying to get help for my nonspeaking daughter):

Me: She’s had periodic outbursts of weeping, writhing, and crying out in pain…

Them (multiple people at multiple places by this point, but now it’s the ER dr): She looks fine to me.

Me: Wait, what?

Read: “Your reality is inconvenient, inconsequential, and/or invalid; my reality is right. Your lived experience is hereby reinterpreted to fit into my reality, or discounted altogether.”

She is not in the middle of an episode therefore she has never had an episode? Or the episodes stopped for now and therefore are over forever? Or you can’t really believe the episodes happen from my testimony? Because as a woman, I’m overemotional and hysterical, and as a mother, I am even moreso when it comes to my children?

The message conveyed was of disbelief (or complete disinterest; it’s hard to be sure which). I still get taken aback by that because it is 100% inappropriate, period. Even though I run into it over and over again.

So I reiterate: This was a thing that happened in the real world. She seemed to be in great pain, and pain is not something that should be ignored.

Them: I’m not sure what you want me to do.

Well, hey there, we’re in a medical facility with access to all kinds of diagnostic tools and tests. Let’s try to get a better idea of why she would be in pain. Why not do the tests the other dr wanted done, now, instead of in a couple of weeks?

Them: Why? I don’t think so.
Maybe it’s just “behavior”.
Maybe it’s just her hormones.

(Now you’re dismissing her for being female, teen-aged, *and* disabled. Great. Glad to hear that.)

Them: That must be really frustrating for you, not to know.

Aaaaand you do not get the irony of pretty much refusing us any help at all in finding out, or at least ruling out, what might be going on.

And we are dismissed.

Read: “I’m not sure why you came in, but if you’ll excuse me, there are patients and problems that I actually choose to acknowledge.”

Some people know what I mean by this wall; we have a shared experience but don’t usually have terms to refer to it by. Others do not have any experience with it themselves and do not know what I’m talking about. What wall?, they say. So again my lived experience is questioned and/or discarded. And I explain again.

Or try to.