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( 10 comments — Leave a comment )
(Deleted comment)
natf
Aug. 11th, 2007 01:01 am (UTC)
Have you also seen The Spoon Theory?
alexmc
Aug. 11th, 2007 09:07 am (UTC)
Seeking advice:
People with CFS or FMS often feel invalidated when they hear:

“You look good to me.” (Underlying invalidating message: “You don’t look sick, therefore you must be exaggerating or faking.”)


Now I do this *alot*. It is because I use it as an alternative to "Hello, How are you?"

I would say "Hello, you are looking well", or "you are looking happy" or "You are dressed smart today" or something positive like that. I figure that if the person I am talking to wants to tell me about their medical state they will find a way.

I never mean to say that "I doubt you are ill because you look well".

Do you think people can tell the difference?

natf
Aug. 12th, 2007 12:49 am (UTC)
Re: Seeking advice:
When I have the energy and *am* feeling well/happy, I am usually able to tell if you/they mean well. If I am feeling ill or depressed I am likely to feel the "I doubt you are ill because you look well". It does vary but I do understand how/why people do it.

I also tend to know who actually *does* want to know how I am when they ask - if they do then I tell them and if they don't I just say "fine" (see the icon)... ;-p

I also went through a phase of answering "How are you?" truthfully, whoever asked. People that did not really want to know soon stopped asking.

I think that we may hear I doubt you are ill because you look well sometimes because a few people *do* think that about those of us with invisible disabilities - including family, teachers, employers,... We live with a minefield of disbelief and mistrust around us and just want to be believed.

That did not help, did it. Sorry.
court9
Aug. 11th, 2007 01:07 pm (UTC)
those links look strangely familiar...

:)
natf
Aug. 12th, 2007 12:50 am (UTC)
Oh! I wonder why?! ;-p

I just wanted to share the good with my RL friends and LJ readers...
shevek
Aug. 13th, 2007 02:14 am (UTC)
Some days I'm fine, some days I think I'm living in denial. Can you suggest somewhere I can get advice quietly, without making a fuss? Because I mostly manage OK.
natf
Aug. 13th, 2007 03:22 am (UTC)
Do you mind if I ask what condition you have?

If it is MS then I can make some suggestions of websites and LJ groups (and offer solidarity/support). If it is FMS or CFS then I am of less help, I am afraid.
natf
Aug. 13th, 2007 03:23 am (UTC)
Also, feel free to email me on my LJ addy ( natalief [at] livejournal [dot] com )...
shevek
Aug. 13th, 2007 10:32 am (UTC)
May I post a response to you somewhere less public?
natf
Aug. 13th, 2007 04:25 pm (UTC)
Absolutely.
natalief [at] livejournal [dot] com
( 10 comments — Leave a comment )

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