Guilt and the Perpetual Patient (or: You're Doing It Wrong - Always)

Aug 20, 2012 12:44

I just said this over on FB, and it got me ranting in my head on the topic again:

Just talked to hr again, trying to navigate this whole fmla, ada, short term disability, don't even know mess. Feel so helpless when I can't manage to get a straight answer on anything. Call back tomorrow, talk to your doc about that, no don't bother requesting a ( Read more... )

rants, myhealth

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Comments 15

moominmuppet August 20 2012, 17:22:11 UTC
Called boss, called off for today and likely tomorrow. Let him know I may roll this into short term disability (these will be unpaid days, even with fmla, since I'm out of PTO, and first five days of short term are also unpaid so it may be best way to go when I'll already be at three in a row, rather than having to start the count over). Called ED to try to find out about IV treatment my doc suggested as last ditch effort. Will pursue that tonight or tomorrow am, I think. Need to call GP about short term disability request in case I need it. Wish I knew anything yet about timing on that intensive PT program I'm trying to get into. Afraid it could happen too late to fall within short term disability if I have to start it now. Hate all this not knowing.

And an additional note on my rant: if I talk about this stuff I'm seeking pity, if I talk about having a life anyway I'm faking and malingering.

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moominmuppet August 20 2012, 17:59:28 UTC
I even feel guilty for not moving my entire life away from Ohio, fer fuck's sake. Every time I have a storm-induced migraine, or any other weather-related flare, I feel like I'm somehow obligated to move away just to control that factor better in my life, no matter how much I love it here, how much I'd hate it in the desert.

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luscious_words August 20 2012, 17:32:32 UTC
IMO, our "healthcare" system does nothing to alleviate that guilt, either. Not only are you under scrutiny by your workplace but you get put under the microscope by doctors and other healthcare providers until you feel like you can't move or breathe without someone knowing it.

I think it's also made worse when your disability is not something someone can "see." I believe others tend to be more judgmental of those disabilities than one you can't ignore because it's right there in front of you. And even those who have the visible disabilities have a difficult time getting their needs met. It's so frustrating to see people I know struggle with these things, when they should not have to. In a perfect world, none of this would occur. Sadly, we live in an incredibly imperfect world.

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moominmuppet August 20 2012, 18:00:50 UTC
So much truth in all of this! Yeah, navigating the issues around invisibility disabilities; the benefits of being able to closet, the detriments of being taken less seriously, it's all fuckered.

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luscious_words August 20 2012, 18:06:03 UTC
Yep, and it makes people who truly need the assistance less inclined to seek it.

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moominmuppet August 20 2012, 18:53:34 UTC
*nod* Yup, very true. As does treating people who need help as "parasites on society" which is something that's getting aired about quite a bit, it being an election year against Republicans that Republicans-of-20-years-ago wouldn't even recognize. Fighting the effects of the nasty little tendrils, disentangling them from my brain, it's a full-time job.

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moominmuppet August 20 2012, 19:00:06 UTC
More ranting from FB, tagging it on over here (I try to maintain synchronization; I have a few important-to-my-life people who only read via LJ ( ... )

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moominmuppet August 20 2012, 19:11:17 UTC
[Comment: Exactly. Everything in my life is "comorbid" -- disorders that are likely related in some way because they show up statistically more frequently together than would otherwise be expected.]

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moominmuppet August 20 2012, 19:16:34 UTC
More comments:

Kit: Yeah :/ I wonder whether it would be useful to describe fibro as the core condition and relate everything else to it (or similar idea)?

Sarah Young That's generally how I do it for my FMLA, but HR gets persnickety about it randomly. And almost always how I do it with medical staff, although this summer, with mania and migraine being my two biggest problems, it's more confusing if I do it that way, for once.

Sarah Young TOO MANY COMMAS.

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moominmuppet August 20 2012, 19:26:45 UTC
And more:

Kit Bah. And, of course, these sorts of symptoms are exactly the kind to make filling in forms more difficult in the first place.

Sarah Young Or calling about stuff. HATE HOLD MUSIC!!!!!!!!!!!!!!!

Kit Or worse, trying to leave messages on answerphones.

Sarah Young Oh, for extra confuse-the-staff: the random major eczema explosion I'm trying to deal with (prescription hydrocortizone is now mostly controlling it, but only if I slather myself twice a day; I tried tapering down, no good)

Kit Gah. I want a brain transplant, or something.

Sarah Young What's kind of funny, and makes me kind of proud of myself on days like this, is that my body can fuck with me so much and I can still love it and all its imperfections. I've pulled off some accomplishments here and there in my life, but this one is remarkably important to me, and has felt like Big Stuff since I managed it.

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zeldajean August 20 2012, 20:04:50 UTC
So much this. Every word. Comments too.

I would write more but it would only take over your post. Although I will probably write one of my own soon.

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rubyelf August 20 2012, 20:44:40 UTC
The world makes anyone different feel guilty just for being who they are. It's what I see with my kiddos I work with all day long. It's not right.

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