An ADULT only CF FORUM

[Ender]

I was wondering if you guys could create a forum for cf people ONLY...so that we can talk and converse, without the fear of being questioned or judged by others without the disease.

The adult forum is great and all, but I want a place where true cfers can call home, a place where we can talk and bond with each other and not worry about outside influence or critism, cause lets face it. No one understands cfers like we do. There should be a forum just for us.

While this "adult" forum is great, there are ALL types that come here. Regular non CF boyfriends/girlfriends that are interested on issues associated with their adult CF mate, moms with current kids about to marry a CF male and want to know things, a non CF having female trying to conceive with a CF male...etc etc etc...Was just thinking of a place where ONLY CF patients, *particularly* adults could hang out and feel a little more close knit

 

[Emily65Roses]

You have a point. I don't personally care for myself. But I have to remind you... we get judged by other CFers just as easily as we get judged by CF parents, spouses, friends, etc. I think it's good to have outlooks on the same subject by people that aren't in the same position.

 

[Ender]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

You have a point. I don't personally care for myself. But I have to remind you... we get judged by other CFers just as easily as we get judged by CF parents, spouses, friends, etc. I think it's good to have outlooks on the same subject by people that aren't in the same position.</end quote></div>

Regardless...there is more connection...like a parent arguing with his son. Regardless of the differences, we will always be the same...and still care for eachother.

 

[dyza]

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cftrust.org.uk/scope/page/view.go?layout=cftrust&pageid=169">http://www.cftrust.org.uk/scop...out=cftrust&pageid=169</a>

 

[anonymous]

Sorry, but the UK cftrust forums Adult section is inhabited by non-cfers too. Oh, and probably more importantly, its mostly used by cfers from the UK, who to a certain extent have different treatment regimes...

 

[anonymous]

Well people could lie about it to get in if they really wanted to.

I don't see why people really want to isolate themselves. People with really severe CF might want to exclude those without severe CF. See what I mean? I don't think people are really all that different. My partner has CF, and reading honest feelings of others with CF is very valuable to me, this forum is my only source for opinions. If you guys went and hid away then many of us would feel in the dark, especially for those of us with partners that don't like to talk about their feelings toward CF and such.

 

[kayleesgrandma]

I understand where you're coming from Ender, but I don't think that a site for
"only" cfrs would be so beneficial. Don't you see what a large support group you have here? But not only that, it has been so helpful to those of us who aren't "true cfrs". I may not have the disease, but I am so affected by it, and it helps to know what to expect,and what to look for. The cfrs talk to each other all the time. Those of us who aren't stay out of the talk. Why do you think you are judged? If someone jumps you--we got your back. But I do see what you mean.

 

[Diana]

The common interest in these forums is helping each other. Helping each other to learn, grow and cope. However we are linked to the disease is only a small part of the reason we are so impacted by it, and the fact is we are ALL impacted by it.

I understand you may want to share thoughts and feelings with those only like yourself and if you do not see the point in friendly perspectives from many angles then my suggestion would be to perhaps find a few people you connect with from these forums and stay in contact with through personal chat or emails. They would be a group you have specifically chosen and therefore be willing to hear from.

I personally can only give my views as a parent and when I have issues I need to hear the perspectives of those living the disease to keep me in check. If I only heard from other mothers then I know there would be vital information I would be missing.

I hope you find what you are looking for.

 

[anonymous]

I just want to say that I would cheerfully give up my ability to post on this Adult forum if you want to make it only for adult CFers. I would like to read the posts if no one minded. I have learned a lot from the posts of the adults.

When my husband was alive I was a member of a forum for "well" spouses. The rules there were that only partners of folks with chronic illnesses or disabilities could post on the board - tho' it was open for all to read. If anyone else signed up and posted (ill person, caregiver of a different type, professional, friend, etc) and email was sent to the poster, the post and the posters signin was removed. It was a godsend to me to have such a place (not that there weren't disagreements between wellspouses) where the conversation was only between peers.

Since the adult CFers can't meet in person (because of cross contamination issues), I think having a virtual place is important.

And actually I can see a point in having a place where the rest of us can't even read and having special chats.... (I would miss you all tho if you do that....)

 

[LisaV]

that previous anon post was me, LisaV.

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

I just want to say that I would cheerfully give up my ability to post on this Adult forum if you want to make it only for adult CFers. I would like to read the posts if no one minded. I have learned a lot from the posts of the adults.
</end quote></div>

Me too.

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kayleesgrandma</b></i>

I understand where you're coming from Ender, but I don't think that a site for
"only" cfrs would be so beneficial. Don't you see what a large support group you have here? But not only that, it has been so helpful to those of us who aren't "true cfrs". I may not have the disease, but I am so affected by it, and it helps to know what to expect,and what to look for. The cfrs talk to each other all the time. Those of us who aren't stay out of the talk. Why do you think you are judged? If someone jumps you--we got your back. But I do see what you mean.</end quote></div>


I agree, even though we haven't got CF ourselves, it affects our lives so much.

Charlotte<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[Scarlett81]

i respect your question-but personally i wouldn't see the point to a cf only site. part of the reason i came here anyway was to hear about spouses and parents. i think we all have something to contribute-and we give to the spouses and parents too. they get to hear how we feel, and maybe hearing our griefs and complaints humanizes the disease for them. it's not just 'CF'.

for me its not just what i get, but what I give. my mom was a good caregiver-but i swear sometimes i think i was just a pill machine and a back to hit on -to her. i was a burden. so maybe i can help a parent or caregiver really think about what you feel when you have cf-maybe they will be more patient with their patient.

 

[2005CFmom]

Maybe consider using the Private Topic feature. If there is a certain issue that you feel strongly about only having CFer's respond to, you could post it there. Although it would mean that you would need to compile a list of the CFers that you want to invite.

 

[Mockingbird]

Why don't you just create your own forum, then you can control who gets in and who stay out. You can do it easily and for free through groups.yahoo.com or groups.msn.com, or other sites like that.

 

[julie]

Jarod, get out of my brain <img src="i/expressions/face-icon-small-smile.gif" border="0">.

I was thinking the same as Jarod mentioned. It could be a good idea in theory, but I think we all learn so much from eachother. If this forum had been "just for those who HAVE CF" when I first came here, there is SOOO much I would be clueless about.

I personally don't think it would be a good idea for this forum, since it seems to be community focused, but possibly running your own might be a good idea if you feel strongly about it.

 

[beyerdug]

I agree with Diana that if you want an exclusive club, you should find people that share your thoughts and feelings and email them. I think if you start to say only cfers can participate you will soon say only cfers who meet a certain criteria can participate and you will begin to narrow your group to only those who share your thoughts and feelings. This forum is important for all of those who need it for what ever reason they need it. I personally like to hear how non cfers have to cope with the disease because there are several other people that are affected by MY having cf and I want to help them as well.

 

[IG]

Just hearing about this reminds me of the wellspouses forum thing a while back.

 

[Seana30]

Personally I think you are just trying to start trouble again!

Thanks for making all of the relatives of CFers feel real welcome here ender!

Seana

 

[Diane]

I like the forum the way it is . But i can also see your point to wanting to relate to only those who are in your shoes. The idea of starting your own group is a good one . But i think this forum is invaluable to many and is needed for those affected by cf in any form.