For all of us with a fatigue-based chronic condition

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For all of us with a fatigue-based chronic condition

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Aug. 10th, 2007 at 6:46 PM

e.g. MS, CFS, FMS, Lupus.

Explain your condition to the healthy people in your life.

When a loved one has CFS or FMS (also applies to MS).

Don't forget the amazing Spoon Theory!

Current Mood: contemplative

( 10 comments — Leave a comment )

(Deleted comment)

natf

Aug. 11th, 2007 01:01 am (UTC)

Have you also seen The Spoon Theory?

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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?

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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.

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court9

Aug. 11th, 2007 01:07 pm (UTC)

those links look strangely familiar...

:)

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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...

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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.

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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.

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natf

Aug. 13th, 2007 03:23 am (UTC)

Also, feel free to email me on my LJ addy ( natalief [at] livejournal [dot] com )...

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shevek

Aug. 13th, 2007 10:32 am (UTC)

May I post a response to you somewhere less public?

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