shocked at how people talk to each other on this site

Shoshanna · Jul 9, 2007

I am very appreciative of this site; what it has to offer in terms of information and the support many people have given to me. I didn't mean to sound otherwise. I just find some of the posts and some of the people off-putting.

I have never been afraid to share my background or lifestyle here, but I have had several people PM me that they are afraid to mention they have a nanny or a housekeeper or how they feel about a certain topic for fear of not fitting in with the masses.

I'm sure I'll be attacked for writing this, but sometimes this site reminds me of high school. I find that people can be clicky, that they've established who they like and who they don't and that they make this known through their writings.
Even the CF Idol posting was all about making it clear on this site who is liked/looked up to and, by default, who isn't. Call it by any other name, but it really was a popularity contest.

You say that people are all there for one another, but about a month ago I wrote a pretty intense posting about feeling ill (I am awaiting a tx) and about 5 kind people responded to that post, about another 2 PMed me...that's it. When Jen threw up mucus and was sent to the hospital (by the way, I throw up mucus everyday and have been for 2 years now), everyone was in an uproar to help her. So, maybe you guys are there for ALL of us, but sometimes it feels like a popularity contest. I don't know. Check the postings for yourself.

I'm 33 years-old and my body is sick and tired and I've just reached a point in my life where I'm not looking for this. I outgrew this crap long ago. And I'm not the only one. I'm just the only one to speak out.

Thank you to everyone who has been there for me. I think, like many others, I'll focus on the other on-line communities that have made me feel so welcome.

Shoshanna · Jul 9, 2007

I am very appreciative of this site; what it has to offer in terms of information and the support many people have given to me. I didn't mean to sound otherwise. I just find some of the posts and some of the people off-putting.

I have never been afraid to share my background or lifestyle here, but I have had several people PM me that they are afraid to mention they have a nanny or a housekeeper or how they feel about a certain topic for fear of not fitting in with the masses.

I'm sure I'll be attacked for writing this, but sometimes this site reminds me of high school. I find that people can be clicky, that they've established who they like and who they don't and that they make this known through their writings.
Even the CF Idol posting was all about making it clear on this site who is liked/looked up to and, by default, who isn't. Call it by any other name, but it really was a popularity contest.

You say that people are all there for one another, but about a month ago I wrote a pretty intense posting about feeling ill (I am awaiting a tx) and about 5 kind people responded to that post, about another 2 PMed me...that's it. When Jen threw up mucus and was sent to the hospital (by the way, I throw up mucus everyday and have been for 2 years now), everyone was in an uproar to help her. So, maybe you guys are there for ALL of us, but sometimes it feels like a popularity contest. I don't know. Check the postings for yourself.

I'm 33 years-old and my body is sick and tired and I've just reached a point in my life where I'm not looking for this. I outgrew this crap long ago. And I'm not the only one. I'm just the only one to speak out.

Thank you to everyone who has been there for me. I think, like many others, I'll focus on the other on-line communities that have made me feel so welcome.

Shoshanna · Jul 9, 2007

I am very appreciative of this site; what it has to offer in terms of information and the support many people have given to me. I didn't mean to sound otherwise. I just find some of the posts and some of the people off-putting.

I have never been afraid to share my background or lifestyle here, but I have had several people PM me that they are afraid to mention they have a nanny or a housekeeper or how they feel about a certain topic for fear of not fitting in with the masses.

I'm sure I'll be attacked for writing this, but sometimes this site reminds me of high school. I find that people can be clicky, that they've established who they like and who they don't and that they make this known through their writings.
Even the CF Idol posting was all about making it clear on this site who is liked/looked up to and, by default, who isn't. Call it by any other name, but it really was a popularity contest.

You say that people are all there for one another, but about a month ago I wrote a pretty intense posting about feeling ill (I am awaiting a tx) and about 5 kind people responded to that post, about another 2 PMed me...that's it. When Jen threw up mucus and was sent to the hospital (by the way, I throw up mucus everyday and have been for 2 years now), everyone was in an uproar to help her. So, maybe you guys are there for ALL of us, but sometimes it feels like a popularity contest. I don't know. Check the postings for yourself.

I'm 33 years-old and my body is sick and tired and I've just reached a point in my life where I'm not looking for this. I outgrew this crap long ago. And I'm not the only one. I'm just the only one to speak out.

Thank you to everyone who has been there for me. I think, like many others, I'll focus on the other on-line communities that have made me feel so welcome.

Shoshanna · Jul 9, 2007

I am very appreciative of this site; what it has to offer in terms of information and the support many people have given to me. I didn't mean to sound otherwise. I just find some of the posts and some of the people off-putting.

I have never been afraid to share my background or lifestyle here, but I have had several people PM me that they are afraid to mention they have a nanny or a housekeeper or how they feel about a certain topic for fear of not fitting in with the masses.

I'm sure I'll be attacked for writing this, but sometimes this site reminds me of high school. I find that people can be clicky, that they've established who they like and who they don't and that they make this known through their writings.
Even the CF Idol posting was all about making it clear on this site who is liked/looked up to and, by default, who isn't. Call it by any other name, but it really was a popularity contest.

You say that people are all there for one another, but about a month ago I wrote a pretty intense posting about feeling ill (I am awaiting a tx) and about 5 kind people responded to that post, about another 2 PMed me...that's it. When Jen threw up mucus and was sent to the hospital (by the way, I throw up mucus everyday and have been for 2 years now), everyone was in an uproar to help her. So, maybe you guys are there for ALL of us, but sometimes it feels like a popularity contest. I don't know. Check the postings for yourself.

I'm 33 years-old and my body is sick and tired and I've just reached a point in my life where I'm not looking for this. I outgrew this crap long ago. And I'm not the only one. I'm just the only one to speak out.

Thank you to everyone who has been there for me. I think, like many others, I'll focus on the other on-line communities that have made me feel so welcome.

Shoshanna · Jul 9, 2007

I am very appreciative of this site; what it has to offer in terms of information and the support many people have given to me. I didn't mean to sound otherwise. I just find some of the posts and some of the people off-putting.

I have never been afraid to share my background or lifestyle here, but I have had several people PM me that they are afraid to mention they have a nanny or a housekeeper or how they feel about a certain topic for fear of not fitting in with the masses.

I'm sure I'll be attacked for writing this, but sometimes this site reminds me of high school. I find that people can be clicky, that they've established who they like and who they don't and that they make this known through their writings.
Even the CF Idol posting was all about making it clear on this site who is liked/looked up to and, by default, who isn't. Call it by any other name, but it really was a popularity contest.

You say that people are all there for one another, but about a month ago I wrote a pretty intense posting about feeling ill (I am awaiting a tx) and about 5 kind people responded to that post, about another 2 PMed me...that's it. When Jen threw up mucus and was sent to the hospital (by the way, I throw up mucus everyday and have been for 2 years now), everyone was in an uproar to help her. So, maybe you guys are there for ALL of us, but sometimes it feels like a popularity contest. I don't know. Check the postings for yourself.

I'm 33 years-old and my body is sick and tired and I've just reached a point in my life where I'm not looking for this. I outgrew this crap long ago. And I'm not the only one. I'm just the only one to speak out.

Thank you to everyone who has been there for me. I think, like many others, I'll focus on the other on-line communities that have made me feel so welcome.

Shoshanna · Jul 9, 2007

I am very appreciative of this site; what it has to offer in terms of information and the support many people have given to me. I didn't mean to sound otherwise. I just find some of the posts and some of the people off-putting.

I have never been afraid to share my background or lifestyle here, but I have had several people PM me that they are afraid to mention they have a nanny or a housekeeper or how they feel about a certain topic for fear of not fitting in with the masses.

I'm sure I'll be attacked for writing this, but sometimes this site reminds me of high school. I find that people can be clicky, that they've established who they like and who they don't and that they make this known through their writings.
Even the CF Idol posting was all about making it clear on this site who is liked/looked up to and, by default, who isn't. Call it by any other name, but it really was a popularity contest.

You say that people are all there for one another, but about a month ago I wrote a pretty intense posting about feeling ill (I am awaiting a tx) and about 5 kind people responded to that post, about another 2 PMed me...that's it. When Jen threw up mucus and was sent to the hospital (by the way, I throw up mucus everyday and have been for 2 years now), everyone was in an uproar to help her. So, maybe you guys are there for ALL of us, but sometimes it feels like a popularity contest. I don't know. Check the postings for yourself.

I'm 33 years-old and my body is sick and tired and I've just reached a point in my life where I'm not looking for this. I outgrew this crap long ago. And I'm not the only one. I'm just the only one to speak out.

Thank you to everyone who has been there for me. I think, like many others, I'll focus on the other on-line communities that have made me feel so welcome.

beleache · Jul 9, 2007

Vicki, You are right, there is no reason to be hurtful, condescending and demeaning...You can disagree w/ someone w/o that kind of nonsense.. On the other hand the amout of support and info , i think is so overwhelming, that i dont pay much attention to the negative nonsense... Take care and God Bless..<img src="i/expressions/heart.gif" border="0"> Joni 55 y/o f w c/f

beleache · Jul 9, 2007

Vicki, You are right, there is no reason to be hurtful, condescending and demeaning...You can disagree w/ someone w/o that kind of nonsense.. On the other hand the amout of support and info , i think is so overwhelming, that i dont pay much attention to the negative nonsense... Take care and God Bless..<img src="i/expressions/heart.gif" border="0"> Joni 55 y/o f w c/f

beleache · Jul 9, 2007

Vicki, You are right, there is no reason to be hurtful, condescending and demeaning...You can disagree w/ someone w/o that kind of nonsense.. On the other hand the amout of support and info , i think is so overwhelming, that i dont pay much attention to the negative nonsense... Take care and God Bless..<img src="i/expressions/heart.gif" border="0"> Joni 55 y/o f w c/f

beleache · Jul 9, 2007

Vicki, You are right, there is no reason to be hurtful, condescending and demeaning...You can disagree w/ someone w/o that kind of nonsense.. On the other hand the amout of support and info , i think is so overwhelming, that i dont pay much attention to the negative nonsense... Take care and God Bless..<img src="i/expressions/heart.gif" border="0"> Joni 55 y/o f w c/f

beleache · Jul 9, 2007

Vicki, You are right, there is no reason to be hurtful, condescending and demeaning...You can disagree w/ someone w/o that kind of nonsense.. On the other hand the amout of support and info , i think is so overwhelming, that i dont pay much attention to the negative nonsense... Take care and God Bless..<img src="i/expressions/heart.gif" border="0"> Joni 55 y/o f w c/f

beleache · Jul 9, 2007

Vicki, You are right, there is no reason to be hurtful, condescending and demeaning...You can disagree w/ someone w/o that kind of nonsense.. On the other hand the amout of support and info , i think is so overwhelming, that i dont pay much attention to the negative nonsense... Take care and God Bless..<img src="i/expressions/heart.gif" border="0"> Joni 55 y/o f w c/f

Emily65Roses · Jul 9, 2007

As with anything else, you're more likely to support someone you know. I've seen your name before, but you don't post a lot. Not a problem, and I'm not condemning you for not speaking much. But as makes sense in human nature, I'm not going to respond to a post about someone who I don't really know (and I will add I don't even remember seeing the post about Jen puking mucus). No one responded much to me for ages. You have to join in and just hang around. Talk, get to know people, etc. And after you reach a certain point, some people will pay more attention to you. It has nothing to do with popularity (trust me, I am plenty unpopular among many) so much as it has to do with making who you are known. People know me now. I've been here for at least 4 years, so it's not like I came in and people knew everything about me over night.

If you can't accept the fact that this is the way things work, then perhaps it is best if you go elsewhere. I always welcome new people, but I'm not going to buddy buddy up to them as if they're my best friend when I don't know who they are. But for instance, one mother who posts here very rarely (mom2leila) that I have gotten to know, I'm incredibly fond of. Most people don't even know who she is, but for me personally, she's a favorite. It's just a matter of who you've talked to, who gets to know you. If you don't talk to many of us and in turn, we don't jump all over your post, that has nothing to do with who you are. It's just that we don't frickin know you. Simple as that.

Emily65Roses · Jul 9, 2007

As with anything else, you're more likely to support someone you know. I've seen your name before, but you don't post a lot. Not a problem, and I'm not condemning you for not speaking much. But as makes sense in human nature, I'm not going to respond to a post about someone who I don't really know (and I will add I don't even remember seeing the post about Jen puking mucus). No one responded much to me for ages. You have to join in and just hang around. Talk, get to know people, etc. And after you reach a certain point, some people will pay more attention to you. It has nothing to do with popularity (trust me, I am plenty unpopular among many) so much as it has to do with making who you are known. People know me now. I've been here for at least 4 years, so it's not like I came in and people knew everything about me over night.

If you can't accept the fact that this is the way things work, then perhaps it is best if you go elsewhere. I always welcome new people, but I'm not going to buddy buddy up to them as if they're my best friend when I don't know who they are. But for instance, one mother who posts here very rarely (mom2leila) that I have gotten to know, I'm incredibly fond of. Most people don't even know who she is, but for me personally, she's a favorite. It's just a matter of who you've talked to, who gets to know you. If you don't talk to many of us and in turn, we don't jump all over your post, that has nothing to do with who you are. It's just that we don't frickin know you. Simple as that.

Emily65Roses · Jul 9, 2007

As with anything else, you're more likely to support someone you know. I've seen your name before, but you don't post a lot. Not a problem, and I'm not condemning you for not speaking much. But as makes sense in human nature, I'm not going to respond to a post about someone who I don't really know (and I will add I don't even remember seeing the post about Jen puking mucus). No one responded much to me for ages. You have to join in and just hang around. Talk, get to know people, etc. And after you reach a certain point, some people will pay more attention to you. It has nothing to do with popularity (trust me, I am plenty unpopular among many) so much as it has to do with making who you are known. People know me now. I've been here for at least 4 years, so it's not like I came in and people knew everything about me over night.

If you can't accept the fact that this is the way things work, then perhaps it is best if you go elsewhere. I always welcome new people, but I'm not going to buddy buddy up to them as if they're my best friend when I don't know who they are. But for instance, one mother who posts here very rarely (mom2leila) that I have gotten to know, I'm incredibly fond of. Most people don't even know who she is, but for me personally, she's a favorite. It's just a matter of who you've talked to, who gets to know you. If you don't talk to many of us and in turn, we don't jump all over your post, that has nothing to do with who you are. It's just that we don't frickin know you. Simple as that.

Emily65Roses · Jul 9, 2007

As with anything else, you're more likely to support someone you know. I've seen your name before, but you don't post a lot. Not a problem, and I'm not condemning you for not speaking much. But as makes sense in human nature, I'm not going to respond to a post about someone who I don't really know (and I will add I don't even remember seeing the post about Jen puking mucus). No one responded much to me for ages. You have to join in and just hang around. Talk, get to know people, etc. And after you reach a certain point, some people will pay more attention to you. It has nothing to do with popularity (trust me, I am plenty unpopular among many) so much as it has to do with making who you are known. People know me now. I've been here for at least 4 years, so it's not like I came in and people knew everything about me over night.

If you can't accept the fact that this is the way things work, then perhaps it is best if you go elsewhere. I always welcome new people, but I'm not going to buddy buddy up to them as if they're my best friend when I don't know who they are. But for instance, one mother who posts here very rarely (mom2leila) that I have gotten to know, I'm incredibly fond of. Most people don't even know who she is, but for me personally, she's a favorite. It's just a matter of who you've talked to, who gets to know you. If you don't talk to many of us and in turn, we don't jump all over your post, that has nothing to do with who you are. It's just that we don't frickin know you. Simple as that.

Emily65Roses · Jul 9, 2007

As with anything else, you're more likely to support someone you know. I've seen your name before, but you don't post a lot. Not a problem, and I'm not condemning you for not speaking much. But as makes sense in human nature, I'm not going to respond to a post about someone who I don't really know (and I will add I don't even remember seeing the post about Jen puking mucus). No one responded much to me for ages. You have to join in and just hang around. Talk, get to know people, etc. And after you reach a certain point, some people will pay more attention to you. It has nothing to do with popularity (trust me, I am plenty unpopular among many) so much as it has to do with making who you are known. People know me now. I've been here for at least 4 years, so it's not like I came in and people knew everything about me over night.

If you can't accept the fact that this is the way things work, then perhaps it is best if you go elsewhere. I always welcome new people, but I'm not going to buddy buddy up to them as if they're my best friend when I don't know who they are. But for instance, one mother who posts here very rarely (mom2leila) that I have gotten to know, I'm incredibly fond of. Most people don't even know who she is, but for me personally, she's a favorite. It's just a matter of who you've talked to, who gets to know you. If you don't talk to many of us and in turn, we don't jump all over your post, that has nothing to do with who you are. It's just that we don't frickin know you. Simple as that.

Emily65Roses · Jul 9, 2007

As with anything else, you're more likely to support someone you know. I've seen your name before, but you don't post a lot. Not a problem, and I'm not condemning you for not speaking much. But as makes sense in human nature, I'm not going to respond to a post about someone who I don't really know (and I will add I don't even remember seeing the post about Jen puking mucus). No one responded much to me for ages. You have to join in and just hang around. Talk, get to know people, etc. And after you reach a certain point, some people will pay more attention to you. It has nothing to do with popularity (trust me, I am plenty unpopular among many) so much as it has to do with making who you are known. People know me now. I've been here for at least 4 years, so it's not like I came in and people knew everything about me over night.

If you can't accept the fact that this is the way things work, then perhaps it is best if you go elsewhere. I always welcome new people, but I'm not going to buddy buddy up to them as if they're my best friend when I don't know who they are. But for instance, one mother who posts here very rarely (mom2leila) that I have gotten to know, I'm incredibly fond of. Most people don't even know who she is, but for me personally, she's a favorite. It's just a matter of who you've talked to, who gets to know you. If you don't talk to many of us and in turn, we don't jump all over your post, that has nothing to do with who you are. It's just that we don't frickin know you. Simple as that.

katyf13 · Jul 9, 2007

Hey Vicki-
I've been thinking of you and praying the transplant comes soon! Two months ago, when Mike was not yet transplanted and in the worst health of his life (14% pfts) I was pretty fed up with a lot of people on this site. When you or a loved one is literally dying, people's arguments on here seem trivial and petty. I just wanted to scream at everyone, "Quit bitching, you are alive!!!!" (about stupid things obviously, not about health problems) This is why I do not visit this site daily. I check in every so often to see how everyone is doing, since I have grown to care about many people on here, or to get some info. I try not to read or respond to the posts about the same old tired arguments. I try not to get sucked into the muck. If I feel myself get fired up, I try to walk away from the computer, rather than pointlessly argue about issues that have more than one "right" and "wrong".
Life is too short to spend your life in front of a computer, and it is truly ridiculous and sad when people are condescending and rude to people they don't even know. I love this site, but I couldn't take a steady diet of it, so to speak <img src="i/expressions/face-icon-small-wink.gif" border="0"> We are all affected by cf, and we all have something to offer, but that doesn't mean I'd invite everyone over for a slumber party.

katyf13 · Jul 9, 2007

Hey Vicki-
I've been thinking of you and praying the transplant comes soon! Two months ago, when Mike was not yet transplanted and in the worst health of his life (14% pfts) I was pretty fed up with a lot of people on this site. When you or a loved one is literally dying, people's arguments on here seem trivial and petty. I just wanted to scream at everyone, "Quit bitching, you are alive!!!!" (about stupid things obviously, not about health problems) This is why I do not visit this site daily. I check in every so often to see how everyone is doing, since I have grown to care about many people on here, or to get some info. I try not to read or respond to the posts about the same old tired arguments. I try not to get sucked into the muck. If I feel myself get fired up, I try to walk away from the computer, rather than pointlessly argue about issues that have more than one "right" and "wrong".
Life is too short to spend your life in front of a computer, and it is truly ridiculous and sad when people are condescending and rude to people they don't even know. I love this site, but I couldn't take a steady diet of it, so to speak <img src="i/expressions/face-icon-small-wink.gif" border="0"> We are all affected by cf, and we all have something to offer, but that doesn't mean I'd invite everyone over for a slumber party.

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