My Thoughts on the Board

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anonymous

New member
I'm going to remain anonymous because of the hostile tendencies running rampant throughout the boards lately.
Lately I've noticed that simple questions get turned into arguments of giant proportions which basically end up as complicated name calling and just typical rudeness. People come onto these boards for advice, any kind, and in the end they get it. What I believe is the problem is that many people believe that other's people advice is unwarranted or stupid. People come on here and ask for the advice, other people give, and then people other than the original poster tell the person giving the advice that the advice is in essence stupid. We are making judgment calls on other people and what they have gone through when we have no clue as to what they have actually gone through while in fact their advice might be sound. What happened to the boards? I remember when it was safe to post with no fear of recrimination from other posters. I'm hesitant to give any advice that I have for fear of starting an argument, no matter how innocent the question. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

Well those are my thoughts on the board, feel free to post feed-back... I'm sure there is going to be some, but honestly I don't care anymore. Rant and Rave all you want at this post, but I believe that it hits on what's actually going on here.

Happy Posting. <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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kybert

New member
quite frankly im sick to death of how some people think 'you have to be THIS sick' to post. people who dont have cf, or who have cf and are relatively healthy get shooed away in an instant. i keep seeing this over and over and over again. and whenever i say something theres an uproar [mainly from the people who are doing the shooing]. theres no point spreading the cf message then telling someone to go away because 'they dont know what its like' or 'youre healthier than me so shutup'. just like the recent one. heres poor pam, trying to understand whats happening to her brother and some dimwit comes on and says 'hes old hes not going to get better'. i mean what the!?! for starters, the topic wasnt even about discussing whether he was a 'lost cause' or not. i can only hope pam did not read what that person said. and the person who said 'sami has the worst friends ever'. what the hell went through their head to make them type such a nasty thing? does that person find any jokes funny? if sammy has the worst friends ever then i guess my partner is the devil, he calls me coughy pot and says 'gee will ya stop coughing already'. once again they couldnt put a name to their post*. my advice to folks is, if you are riddled with jealousy and you have nothing nice to post, DONT POST AT ALL, no matter what situation you are in.

as for the advice thing. i dont know what in specifically you are reffering to. but if the advice given to someone is clearly wrong then someone should correct them. although we arent doctors and people shouldnt take our advice 100% seriously, people do feel that if someone giving the advice has cf, then its enough. so we should at least get our facts right. none of this 'i heard from a friend that doing this that can help' stuff when someone wants a clear cut answer. youd be suprised at how many people can follow ones advice no matter how bizarre it is. as for who should correct them i dont know. maybe we should just make a post that says 'see a doctor'. there have been some posts where incorrect information has been said and i think, 'ok now should i tell them the truth? hmm, nah someone is bound to think im trying to have a go at them' and just hope they find out the correct information by themselves. i also think we should try to find out more about newcomers ands anons BEFORE we give out advice. the last thing we need are 14 yr olds running out to by guifenisen [sp?] and downing a cup of it then running to their boyfriends house, right?

people can rant and rave about this too. you all know where i stand.

* my gripe with anon posting does not count with your post. i understand why you would want to keep your identity secret.
 
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ButtonNO1

New member
i agree with wot you said anon and kybert i only joined about a month ago and was quite shocked at some of the things people had said . and then when i posted a thing on needles someone started being very rude and horribel in that i was shocked this is supposed to be a forum were people can get stuff off there chest and get advice not be afraid to post stuff i really hope with these messages people will stop . from JO
 
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Sami

New member
I completely understand what your saying kylie and i just want to say thank you for sticking up for me and i'm sure pam would appreciate it aswell.
 
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anonymous

New member
I think the problem lies in the fact that some people post very inconsiderate posts. I've seen parents come on to ask for advice, only to be told that they seem "overprotective" and "Paranoid." I think people are open to difference of opinion, but not belittling. That's where the problem lies. There are certain posters (who shall remain nameless) who tend to come off as just plain mean instead of "I kindly disagree with you and this is why." It upsets me because I come here for support and to see "all sides of the story" - not silly and caddy comments.
 
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NoDayButToday

New member
Most of the time, I think that anonymous posting (again, not the starter of this post) instigates the arguments that escalate into full blown 'fights'. If anonymous posting was blocked, I think the boards would be a lot more peaceful. I feel people tend to say things as anonymous that they wouldn't have the guts (for lack of a better word) to say if they were forced to put their name with it.
We'd most likely eliminate a lot of the hoaxers that post here about miracle cures that get rid of "the CF parasite" and the like. It would also make the progression of threads much less confusing- sometimes I get lost when there are 10 replies to an anonymous post, all by other anonymous posters and they are going back and forth, yet there's no way to distinguish who is the original poster, etc. It takes about 3 minutes to register as a user, and if you are concerned about having your information on the internet, you can block others from viewing your profile and user information. I really think the moderator may want to consider making registration mandatory; it could eliminate many of the problems on the board.
 
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HollyCatheryn

New member
This may sound quite trivial and perhaps it is, but I get frustrated by seeing 3 posts about the exact same thing. The main one right now seems to be pregnancy or fertility. There should probably be one for the guys and one for the girls, but the point I'm making is that is seems that people come on, Anonymously, and post before they even look through the board to find out if what they want to know is already here. If the thread starter is anonymous we have no way of knowing if this is the same person starting the new post as the last one on the same topic, but trying to get some new or different answers. It just seems like we get going in circles because people don't look around before posting something. Most of what we see isn't THAT urgent. Sorry for venting. Like I said, maybe this is just to trivial to even be worth the writing. Thanks to all of you who do register and who are respectful of other people's opinions and experiences.
 
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tiger

New member
my name is Sarah and im a pretty damn healthy CF-er, i even compete in bodysculpting, and I only found this site today. Im nervous to even post now if what you say about healthy CFers getting abuse is true...
 
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anonymous

New member
hmmmm I musta been outta the loop for a while. I only really lurck here, answer to posts if I have any other input to answer, but I really cant say I have seen the agro mentioned, maybe I just missed it, which is a good thing.
one thing that might clear stuff up, and that is if a post looks to not real, or you dont like the anony ones, cant you just not answer it or ignore it??
maybe this will be wrong, but I think the sicker cfers are a pretty good value for the ones who are so sick, because they have been there already, and can help with some of the trickier problems, but that just could be because I am one of cfs who have dealt with things on a high level throughout, I certainly dont talk down to ones who are well, I applaud them for being who they are.
I havent seen the down talking desribed above to the healthier cfers, then again maybe I have just missed it

I think thats awesome with the body scuplturing, congrats
~Tracy~
 
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kybert

New member
thats because most of it gets deleted or pushed down the list and the rest isnt complete outright abuse. people think they can get away with belittling people here just because they dont use outright offensive words and phrases. you dont have to say 'youre a baby' to get your message across. it can be as simple as someone making a post saying 'well my problems are bigger than yours' or giving the person a full blown lecture thats uncalled for and get away with it because they didnt use a swear word or whatever. its so stupid. have you not seen the needles thread? the words 'get over it' and 'its all in your head' sound pretty darn rude to me. heck, if you only get one blood test a year thats still one too many and you have the right to discuss it. green eyed monster alert perhaps??? i believe every cf'er, whatever stage they are at has the right to vent and complain about their health no matter how small the problem is without copping direct or indirect abuse from those who are jealous. just because a person is healthier or has less procedures done, it doesnt make their problem insignificant.

tiger, post away! post your ideas, post your problems, dont let an anonymous person on the net stop you. there will always be someone here whos supporting you. this kind of thing doesnt happen all the time. its just once in a blue moon some moron comes out and does it.
 
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anonymous

New member
Kylie,

I have seen some of the stuff you are talking about, but I honestly don't think that it is as bad as you are making it out to be. There have been some topics brought up on this forum that struck a nerve with some people and things got a little nasty.

Dave 29 w/cf
 
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kybert

New member
well it may not be bad to you, but thats because it hasnt been directed at you. im sure if it were, you wouldnt be impressed. if a few of you dont think its happening just look at jo's post. <blockquote>Quote<br><hr>i only joined about a month ago and was quite shocked at some of the things people had said . and then when i posted a thing on needles someone started being very rude and horribel in that i was shocked <hr></blockquote> the proof is right there!

maybe the reason some people arent seeing 'it' is because they actually agree with the rude comments that have been said. god i hope thats not the case....
 
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anonymous

New member
Kylie,
I just have to add that you have been rude to me in the past. We went back and forth on it and I did not sign anonymous on my postings. I think people just need to choose their words more carefully because it is easy to misinterpret something when it is in writing and not face to face.
If you feel that someones advice is wrong then you can offer your opinion but it is not necessary to attack people because they feel differently than you do. I also agree with Tracy that if you don't like a posting you can choose to ignore it rather than be rude to people.

Heather
 
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ORTONSGIRL84

New member
thank u kylie for quoting me i really hope peolple do stop all nasty things that are said maybe even if people do not mean it nasty they need to word it better FROM JO
 
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anonymous

New member
-anonymous poster

Once again reading these posts I am encouraged by all that I hear. Kylie, I especially think that you hit the nail on the head in most cases... (and thank you for agreeing with me) I hope that maybe by finding out what the problems are we can maybe fix them, or atleast try to temper ourselves when posting on the board, whether by ignoring certain annoying posts, or just not posting at all. This particular post has exceaded beyond my wildest expectations... I thought that most of the people who posted against this would tell me to... buzz off, to put it politely.

-Once again Happy Posting
 
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anonymous

New member
hey all - thanks for the nice words kylie... ive never even met another CF patient so this is a bit random for me! i never even knew that there were communities out here like this. are you all based in USA? Im in New Zealand.

xx
 
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