Date: 2017-01-10 09:17 pm (UTC)
recessional: a dark-haried woman sits with her back to the camera and a glass of water in her hand (personal; backlight)
From: [personal profile] recessional
"I am too tired to handle other people's emotions, fuck off" is like 80% of the reason I tend to self-isolate when my illness gets worse. (The remaining 20% is that being unwell makes parsing whether or not I'm actually being a dick way harder, and being unwell doesn't actually act as a Get Out Of Being An Asshole Free card, and also I have been burned once too often by the dynamic of Owing that can get set into place even without any conscious intention of the other person and basically, in the end, I'd rather ineffectively lick my own wounds in a cave somewhere).

The problem is also, of course, that there's the actual clinical shit and then there's how people interpret it. Because there is clinical shit that says a certain amount of positivity is good . . . except what they mean is "patients who literally get so hopeless and immobilized by despair and fear that they do not actively pursue and collaborate in their own treatment, don't make any efforts to obtain correct nutrition, don't try to maintain what physical health and strength they have, do not attempt to find some kind of pleasure or enjoyment in life to help feed the emotional resilience to do this, do not maintain any emotional relationships with other people, etc, do worse than patients who do in fact do these things."

Of course at that level whether you're doing it from happiness and rainbows or out of sheer stubborn spite doesn't MATTER, it's just, you need to have enough motivation to (for instance) show up for the chemo or try something new when this round doesn't work or bother fighting with the nausea for adequate nutrition or whatever.

Just, you know. None of the above actual stuff is incompatible with being absolutely furious that you're sick, or frustrated, or scared, or crying for half the afternoon. And especially once you're at that basic level of "still doing all the things to attempt to survive", like . . . fuck off.

And then People Happen.

And sometimes I think it almost doesn't matter what The Script IS, deviating from THE SCRIPT is what pisses people off, which is ironic because I'm supposed to be the one with the neuratypicality that makes The Script rigid and stuff. :| Because I can just barely remember the point when, like, the very first person I've known deal with cancer got diagnosed with his and at that point at least where we were it was the opposite. People inundated you with OH YOU POOR THING and THAT MUST BE SO AWFUL and YOU MUST BE SO SCARED and spoke in gentle platitudes and basically acted like you were a Victorian invalid and of course if he DIDN'T Take Care Of His Health (ie never do anything, basically), then THAT was the thing that made his worsening symptoms his Own Fault and they just . . . got mad when he (a first-cousin-once-removed) was pretty phlegmatic and fatalistically accepting about it? And followed his actual doctor's advice of "do what you feel like you can or want to, stop when you feel sick, do what keeps you in good spirits as much as possible."

So like at one point you were supposed to perform the role of Object of Pity and Concern and Sorrow, and if you didn't you got negative reactions . . . and now you're supposed to perform the role of Plucky Survivor, and if you don't you get negative reactions, and honestly what the actual theraputic issue is, is basically the same as for depression, which is "try to DO things that help nurture enough psychological/emotional function that you don't just lie down and die."

. . . which I feel is the other thing that gets lost: when it's actually being sensibly theraputic, it's not a lot of "THINK POSITIVE!!!" it's "so right now what would make things less miserable? is this a thing that could happen? then let's make that happen." Or occasionally "so I know right now it feels like NOTHING WILL HELP, but we've found that Doing This Thing/Kind of Thing helps people feel better, so if you can get to it, I recommend doing this thing." It's, well, about doing stuff. The mood/attitude/whatever isn't the thing that switches on and off like a light, it's the symptom you're trying to find some way to treat. It's not "FEEL BETTER, THEN EVERYTHING WILL BE FIXED!" it's "so if you feel better it will probably be easier to do this thing that will help, so what can be DONE that will likely help you feel better?"

But that nuance is apparently WAY TOO COMPLICATED for people en masse to grasp, sometimes even people who should REALLY know better. So it becomes this . . . other shit, instead. And people basically demanding that people with the illness Be Cheerful to make them (the other people) feel better, when frankly if they actually even believed this shit it would be the other way around ("feeling better/more positive will help RMC survive cancer, so what can I do to help* feeling better be easier?"). BUT OH NO.

. . . /disconnected ramblings.

*like, actual help. not hlep. ~rachelmanija gets a lot of hlep! it's much easier to hlep than to help.
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