I'm the guy that uses "partner" a lot in his posts, and didn't know I had said anything wrong. Like I said, I have no objection to private topics between members that already know each other. Creating a segregating condition between strangers, on a site that is already open, is something I feel strongly against. It's like saying "things aren't working out how they are with you non-CFers, so we have to make a change in order to make things better for ourselves", that's just the plain truth, otherwise it wouldn't be proposed. If I can cast away my fear of offending people for a minute, I feel like the reasons for the forum, atleast given so far, were not honest at all. I asked several times for what criticism, specifically, that people want to escape, and why. I didn't get any answers. I asked what kind of posts would be on that forum and why they can't be here. I didn't get any answers. People mentioned younger teens, yet it was proposed to be for adults, or atleas primarily for adults. This contradicted themself. The yahoo group is for adults. Deep down I believe it IS that common human mentality of segregation based upon traits alone. What else would it be?
I don't see why we are so different that long time non-CFers of the site are less worthy of being exposed to private topics than a brand new CFer that just got diagnosed with it at 40 and is very mildly affected. My partner holds the same opinion as I, and she's a CFer, would her words hold more weight if I got her to post her opinion on here? The sad fact is, I bet they would. And why is that? Would it hold more weight if a private forum was made, and she posted inside it how she felt about it? Am I somehow irrational or mean to have posted what I did? It may be news to some, but some people with CF aren't part of a collective mindset, and will critisize other CFers, especially the ones that really want to segregate themselves from caring, concerned, and compassionate non-CFers. When they critisize these people, they don't think "CFer", or "non-CFer", they think "person with this idea/believe/value/behavior", that sort of thing, how it should be.
The minute I tell myself "no, you can't critisize that person's ideas, simply because they're terminally ill" is the moment I'd have lost everything that makes me who I am. I feel like every reply I make is going to offend someone and make people dislike me, but even at that risk, I don't wish to lose some of the things that help me cope. I guess it is selfish of me, I'll admit it. Even though my posts may seem cold and calculating at times, I am very sensitive about CF, I cry about it a lot while my partner rarely does, she really only does if she has got much lower numbers than usual. She asked me not to tell her the lung transplant survival rates, so she wouldn't have to know. I'm not going to force that on her. So I come here and read the adult and transplants sections to help me understand and cope. I guess the site is primarily for support for those with CF, but I don't know why people can't understand some of us would lose something if our one and only forum source for CF was partially hidden away from us.
Look, I understand the desire for privacy. I can understand why someone might want to keep some things hidden from lurkers like myself. But I don't understand why my partner could lurk and view, while I couldn't, despite the fact I've browsed this site for six months and she never has. Whether you intend for it or not, many CFers feelings and posts make some of us non-CFers feel better, they help us cope. And I don't mean the information mining ones.
