Things NOT to say to a person with a disabling chronic condition

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Things NOT to say to a person with a disabling chronic condition

Aug. 19th, 2014 at 11:36 PM

natf

quietdharma:

From the “Chronic Perseverence” Facebook page

Or, as my up-to-then favourite aunt said when I told her that I was considering that I might have Aspergers/ASD;

"Aren’t we all a little bit eccentric?"

Also, on a second reading of this list, I realise that my mother has at one time or another said all of these to me. :(

Current Location:Horsham, UK
Current Mood: out of spoons

Comments

( 9 comments — Leave a comment )

acelightning

Aug. 20th, 2014 06:47 am (UTC)

http://notdoneliving.net/openletter/options.html

Ricky is a long-time and very dear friend of mine, and an outspoken advocate for people with disabilities and chronic illnesses, as well as being one of the two best huggers in the Southern Hemisphere.

Edited at 2014-08-20 06:48 am (UTC)

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natf

Aug. 20th, 2014 05:00 pm (UTC)

Thanks I will try to read that later. *opens tab*

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natf

Aug. 20th, 2014 05:15 pm (UTC)

I read Ricky's blog on DW and LJ. Thanks again for the link.

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acelightning

Aug. 21st, 2014 07:18 am (UTC)

Ricky is just such a sensible, smart, beautiful, creative, and generally wonderful person! And her writings about disability and illness are BRILLIANT! I'm sorry she lives in Australia and can't come here because of her illness, while I can't afford to go to Australia again. I visited with her, and hugged her, a lot while I was there... but that was almost 15 years ago now :-(

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pickleboot

Aug. 20th, 2014 04:54 pm (UTC)

ugh. we had intake for zane today with a new therapist(thank goodness we all liked him, zane was so glad he was nice, keir and i decided he was the kind of guy that we would want to hang out with, too bad he's our son's therapist) and zane brought up that list of things, and how he hates it when anything is said like that about me. it drives me nuts when i am told it is all in my head- yes, the pain is in my head, thanks, knew that, thanks for playing, where did you get you md? and hey, while you're at it, mind telling me how it's all related to how fat i am? oh wait. i lost 200+lbs. i was 350, now 120-ish. somehow i don't think that this is at all weight related. oh, now you think i need to change my diet? nope, if i change it anymore i will just have air, and can't just live on that.

people who are not my doctor, therapist, spouse, or very close friend have no right to say anything other than hey, hi, or wow, i love that [fill in the blank]. really, anything more than that is too much. i don't want to talk about me, i want to talk about interesting stuff, not how bloody sick i am.

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natf

Aug. 20th, 2014 05:00 pm (UTC)

*hugs* Yeah.

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pickleboot

Aug. 20th, 2014 09:55 pm (UTC)

Re:

there are just those days, aren't there?

sorry about the rant. it's been frustrating, not being able to figure out all of this stuff, the mental stuff, with the kids before school starts.

i just need more spoons! there are days i wish i could turn plastic spoons into the ones i need to get through the day, or to give to a friend/relative/other loved one. it's never that easy, is it? maybe i should spend tonight making spoons to send to friends who need them.

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natf

Aug. 20th, 2014 10:46 pm (UTC)

Hey, I rant on your journal occasionally (most recently about housing concerns) so you can rant on mine if you need to. *hugs*

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acelightning

Aug. 21st, 2014 07:20 am (UTC)

Many times, I've put together assortments of plastic spoons in various styles and sizes, and usually in rainbow colors, to send to one or another of my friends who's running out of spoons. And I always include a silver-colored plastic fork, because sometimes all you can do is say, "Aaah, fork it!" :-D

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( 9 comments — Leave a comment )

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