Submitted by rattledlove1139 in tidymess1139

in online discussion it is hard. Nice to teach people things and give new perspective but means i need to say experiences from my life and, well be little bit less private. And at same time do not want say everything about experiences... hard have that balance for me, i don't know why just have trouble with say only some and not all. especially if people ask specific questions, i need to sometimes get better think if answer is really, i guess useful.

There is also in person element with caregivers and even strangers. one time stranger complimented me and family member loudly shout one of my conditions as if that say "thank you". Why?? NO IDEA. like there is no idea of privacy and private information when disabled because people ask invasive questions and say things that do not need to say

Caregivers also means be vulnerable with those people... even if only just met because agency send someone new today. all depend on needs but they might see meltdowns, bathroom troubles, food troubles, all sorts private moments where almost everyone would prefer be alone alone.
Sometimes caregivers do not give enough privacy and make those things worse. sometimes there is no CHOICE but give up that privacy because need intense level of help and they can't even look away. Sometimes caregivers snoop but what can we do about it when really can not live without them??

Maybe i will start to tell everyone I got injured in terrible crocodile accident, no further details.

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Fool wrote

I guess it depends if these care givers are someone you can trust enough to be honest with. As in, let they know that while you need their help, you would like to retain some level of privacy, and come to an understanding of a line you would like them to not cross.

I don't know how to initiate this communication, most of my problems stem from being unable to communicate things, even though I can talk fine at other times.

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rattledlove1139 OP wrote

True but also think about things like needing help showering, diapering, or dressing and undressing. Can be especially vulnerable to sexual violence when disabled and that trauma can make very hard have help, at the same time might need hands on help to get done so can not really say No.
And then horrible cross section there where sometimes sexual violence happen because not able say no and keep body privacy, not without harm self - especially if rely on abusive family member or partner for caregiver

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Exlurker wrote

The best way to make sure nobody wants to snoop on you is just prattle on nonsense and they'll assume you don't know anything either and leave you alone.

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rattledlove1139 OP wrote

I wish i really could but for me this dangerous line of people decide "not competent" make any decisions or class as "non-person", already easy enough do that because nonverbal and need lots help

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Exlurker wrote

I don't see any easy solutions for this, all my great-grandparents wound up losing their individuality and becoming a 'family symbol' wheeled around by their caregivers before they died.

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