What's a nice way to tell people...

[Guest guest]

I often have people who know very little about CFS and FM who try to give me

advice on how to deal with my CFS/FM. I have yet to have someone tell me

something I haven't already heard or tried, and when they do insist on

trying to give me advice, I don't know how to nicely tell them I've heard it

before, already tried it, and it didn't work. I spend a lot of time doing

research and reading to find answers, and there's not a lot I haven't

already heard before. So what do I say to them without sounding like I'm

snubbing their advice?

lindaj@...

[Guest guest]

So what do I say to them without sounding like I'm

snubbing their advice?

How about a simply " yes, my doctor and I have already discussed that

option. " ? Hopefully, for those just trying to tell you about something, it

will let them know you know about it and for those trying to insist, you

pull out the " authority " figure of doctor which will hopefully shut them up.

Darcy

[Guest guest]

,

I'm not sure if someone posted this to you or not, or if you've seen it.

It's a letter to " normals " ...it may help you in your answer to those who

don't have cfs/fm.

http://www.tidalweb.com/fms/letter.shtml

Age: 34

Dx'd: early 1990s

Location: southeastern Vermont

Children: 1 four-legged furry one named Missy

Siblings: 3 sisters, 1 brother (I am the youngest)

Currently renting from mom, working for mom, and typing at home. I am

divorced and been with SO since 1997.

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[Guest guest]

In a message dated 5/23/01 4:34:34 PM Eastern Daylight Time,

joy@... writes:

> and I are going on vacation in a month. We plan to visit my

> grandparents who he hasn't met and I haven't seen in 6 years, my folks and

> also his parents who I've never met. I talk to his Mom on the phone and

> she always gives strange suggestions for my FMS. I really don't think she

> has any clue what it's like and I get tired of explaining. I'm not looking

> forward to all the questions and suggestions our families will bombard me

> with next month!

>

> Joy

>

Joy,

Such a good question. I have been battling people's questions for a long

time. I have finally got to the point that I say I know you are really

concerned, but I've done so much research on my illness and have talked to so

many doctor's about it that there has yet to be a cure, but I'm gonna keep

fighting. Hope that helps a bit, it does for me. Take Care, Joy

Kathy D.

Diagnosed in 98

Live in Western Massachusetts

Married for almost 19yrs, to a sweetheart

Mother to 16 and 14

My Rottie dog Shelby

Spooky the cat

Hobbies: Boating, Learning this computer

Arts & Crafts, and a passionate reader

[Guest guest]

I really don't think

she

has any clue what it's like and I get tired of explaining. I'm not

looking

forward to all the questions and suggestions our families will bombard

me

with next month!

Joy

How about getting copies of the " letter to the normals " to hand out to them?

Darcy

[Guest guest]

I really don't think

she

has any clue what it's like and I get tired of explaining. I'm not

looking

forward to all the questions and suggestions our families will bombard

me

with next month!

Joy

How about getting copies of the " letter to the normals " to hand out to them?

Darcy

[Guest guest]

Joy,

You could also say something like, " I'm here to visit, but I would love to

take home your suggestions. Would you mind writing them down? "

That might work...LOL!

>

>Reply-To:

>To: " 'fibromyalgia-cfs ' " <fibromyalgia-cfs >

>Subject: RE: What's a nice way to tell people...

>Date: Wed, 23 May 2001 16:47:41 -0400

>

>

> I really don't think

>she

>has any clue what it's like and I get tired of explaining. I'm not

>looking

>forward to all the questions and suggestions our families will bombard

>me

>with next month!

>

>Joy

>

>How about getting copies of the " letter to the normals " to hand out to

>them?

>

>Darcy

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[Guest guest]

Joy,

You could also say something like, " I'm here to visit, but I would love to

take home your suggestions. Would you mind writing them down? "

That might work...LOL!

>

>Reply-To:

>To: " 'fibromyalgia-cfs ' " <fibromyalgia-cfs >

>Subject: RE: What's a nice way to tell people...

>Date: Wed, 23 May 2001 16:47:41 -0400

>

>

> I really don't think

>she

>has any clue what it's like and I get tired of explaining. I'm not

>looking

>forward to all the questions and suggestions our families will bombard

>me

>with next month!

>

>Joy

>

>How about getting copies of the " letter to the normals " to hand out to

>them?

>

>Darcy

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