Re: Re: Reggie

[Guest guest]

Dear Dana Your letter interested me as it raised some issues that I have

thought a lot about but no one has ever challenged a complacency to not want to

get well. I believe that to be the case, and I will tell you why I think so,

certainly not true of everyone.

When I was diagnosed I had FMS after 11 years, seering that time no one spoke

well of " fibrositis " as they called it back in my native Boston. I was told it

was " all in my head " and refusals of medication were a weekly event, even at

top specialists whom I consulted at that time. About 7 or 8 years in a change

occurred, and treatment began tio be miore helpful. My first rheumatologist

wanted me to see a osychiatrist as he thought I was punishing myself! Anyway, I

went to a teaching hospital in Boston and was properly diagnosrf by Dr. Don L.

Goldenberg, now rheumatological head at Newton-Wellesley Hospital west ofBoston.

After so many years of being brushed off I was a little timid about stating my

case. I have read recently on this group that doctors are still turning fiolks

away and the discrimination prevails. Yes, I think peoplek hold back because

they will not be believed. I don't want to be patronized as well,

I find it excellent to have men in my group. I was in a blind study in Boston

of 226 people, 26 men. The odds are great but your input is valuabkle indeed to

me!

Best regards, Janet G

ioDeR sn,nlyget5 wrote:>Hi,

>Since I joined this group I noticed that I'm rare being a man

>with CFS/Fibro who happens to be a member. It also appears so far

>that the tenor of the group is geared more towards women, almost as

>if CFS and Fibro discriminates along gender lines and your sharings

>are limited to one another on that basis.

There was only one main in my support group when I was first

diagnosed and the doctor said that this is a disease that affects

more women than men by a large margin. Of course, there was also a

teenager in our group too and that is also considered unusual.

>It was my deep desire when I joined to try helping others if I

>could, make new acquaintances, create a new support network, and be

>a part of something positive with regard to this condition.

>I try to respond to messages from members who ask for help, or seem

>deeply distressed. I have intense experience in the medical field

>and have tried to share relevant information with respect to

>scientific research and new findings, disability, and social issues.

>On rare occasion someone seems interested, but for the most part I

>feel as though my attempts to be of help are not wanted in the

>group.

Well, I'm very new here so I can't really speak to this except to say

that I would very much welcome any and all help in coping with this

illness and I don't care what gender or color or religious group or

persuasion a person is, if they have something to say I'll gladly

listen and if what they say can help me, I'll be grateful and tell

them so.

I will say that as a new member keeping up with so many posts of such

an active group is a little daunting, so I'll venture that maybe you

haven't received the responses you desired not because of a lack of

interest, but because there's so much information to get through but

as I said, I'm new so I can't say I've had a chance to know for sure

if that's the case.

>I'll be honest that I'm sometimes surprised by what people talk

>about here in light of the difficulties living with a debilitating

>illness like this can have on anyone with it. OK, now I know you

>guys will be mad as hell with me but here it goes .... as a man,

>I've heard over & over that women want to vent but don't necessarily

>want things fixed. Is it possible that we are conditioned to think

>so differntly based on gender? Men see problems and look for

>solutions, and women only want to talk about the problems?

>(generalization ok?).

From my own readings on this specific topic, I believe the idea put

forth by the experts is that when women and men talk to one another,

women often say things just to get them out in the open (which makes

us feel better), not because they expect a man to fix the problem vs.

men automatically feeling that when women say things they (the men)

are expected to fix what's wrong, rather than just to let the women

vent and thereby get to feeling better for having done so.

>Is it that men and women are better off in support groups segregated

>based on sex? I'm confused so far with the way things go in this

>group, but I do feel as if there is a difference in receptivity.

>Be well, Reggie

I do not believe this is the case as I have been involved in several

co-ed medical support groups in person and online and the result has

been that we men and women have nurtured and learned from one another

and enriched each other's lives.

Reggie, hang in there and please don't be discouraged by a lack of

response to your help. You can feel free to email me offline if you

wish at ionlyget5@...

Dana Beth

[Guest guest]

Reggie wrote,> I have intense experience in the medical field

> >and have tried to share relevant information with respect to

> >scientific research and new findings, disability, and social issues.

Reggie,

I am sorry to say that I am not interested in scientific research. I deeply

admire those who find happiness in looking into these subjects but they are

not for me. No, new finding in help for fibro is a different story. Of

course, I am interested in that.

It could be that many on this list are not interested in scientific research

but in my opinion, there are many that are interested in disability. You may

not hear from them because they read the email and possibly put some of what

you say into action but they may feel that they have nothing to add to what

you wrote and there fore you do not hear from them.

Take care,

Irene

Books may well be the only true magic

Alice Hoffman

[Guest guest]

Reggie wrote,> I have intense experience in the medical field

> >and have tried to share relevant information with respect to

> >scientific research and new findings, disability, and social issues.

Reggie,

I am sorry to say that I am not interested in scientific research. I deeply

admire those who find happiness in looking into these subjects but they are

not for me. No, new finding in help for fibro is a different story. Of

course, I am interested in that.

It could be that many on this list are not interested in scientific research

but in my opinion, there are many that are interested in disability. You may

not hear from them because they read the email and possibly put some of what

you say into action but they may feel that they have nothing to add to what

you wrote and there fore you do not hear from them.

Take care,

Irene

Books may well be the only true magic

Alice Hoffman

[Guest guest]

Reggie wrote,> I have intense experience in the medical field

> >and have tried to share relevant information with respect to

> >scientific research and new findings, disability, and social issues.

Reggie,

I am sorry to say that I am not interested in scientific research. I deeply

admire those who find happiness in looking into these subjects but they are

not for me. No, new finding in help for fibro is a different story. Of

course, I am interested in that.

It could be that many on this list are not interested in scientific research

but in my opinion, there are many that are interested in disability. You may

not hear from them because they read the email and possibly put some of what

you say into action but they may feel that they have nothing to add to what

you wrote and there fore you do not hear from them.

Take care,

Irene

Books may well be the only true magic

Alice Hoffman