Re: Just had to vent

[Guest guest]

Hey ,

I'm so sorry to hear about your 'brushed off as crazy' experience. The isolation

and 'ick-fear-disbelief reaction' factor of this disease from MD's, friends,

family, co-workers, acquaintances are the MOST painful parts of the affliction.

I know you stated you were just venting... but I want to share my thoughts on

the subject of 'talking about Morgellons', if you are open to it, because I want

you to meet the right person online and for it to work out. Just skip reading

the rest of this post if you want. Here I go...

Since there is NO GOOD scientific evidence-based information about Morgellons

yet and most of the medical community consistently historically says it's DOP,

we all have to rely on the person who we describe our symptoms to, to trust us

as individuals when we tell them that our symptoms are physically-based rather

than psychologically-based.

With on-line dating, many many women tend to try to protect themselves against

the worst-case senario that the person they are chatting with them may not be

honest or may not be sane. They realize the guy chatting with them could be

ANYONE. So most women are NOT in a 'trusting' mode until after the first few

in-person dates when they feel like they actually know someone a bit with real

life experience. I know it's hard to wait until after knowing someone in person

for a while in order to share this. But I do think the RIGHT woman will trust

you over the 'historical' medical community once she knows you.

I know it is helpful for us NEVER to use the word 'Morgellons' to describe our

situation to non-M sufferers, cuz it is just too loaded a topic historically for

the medical community and is not needed in order to describe what is happening

for us. Instead, we share own history of symptoms and our confusion over our

unusual, unexpected condition and most of the people we have shared this with

have been willing to help us to figure this out and find cures and treatments.

While there does not appear to be any benefit to us using the word 'Morgellons'

on a 'personal' level with MDs, family, etc... , this has not prevented us from

acting on a political level to insist on support for funding for research on M

from the CDC and NIH.

z3

>

> I was talking to someone online from a dating site about meeting up and they

asked me to tell them something personal. So I told them about Morgellons.

They then told me that they read on Webmd that it is a psychological disorder

that you have from birth. Uh, I could never find that on Webmd. They then

tried to convince me I was crazy. I'm seriously getting sick of this crap. I

have a disease and people need to acknowledge it. I not talking about telling

everyone in the world about it but I'm getting sick of being brushed off as

being crazy. Guess I dogged a bullet though. They were probably lame anyways.

>

[Guest guest]

Hey daniel,

I hear your frustration...

There was a lady at a local health food store and we were attracted to each

other. After she tucked her arm into mine and leaned up tight to me physically

I stopped going to that store. I know what I've been thru...

Honestly for me I need to focus my energies on recovering my health

and cultivating a life style that will allow me to be free of these little

friends of mine. I'd need a good year, free of this, for me to begin to pursue

someone or something. If I meet a lady that has or has had something simmilar,

then thats different.

For me it's the thing about being around people and the fear of passing this on.

Right now I hope to get this under control so I can join an astronomy group and

go out to their dark sky site without concerns...

I don't like having to let go of somethings, but for me it's a choice I can live

with.

Green