question...

[ej0820]

Hey guys,

I have more of a personal question...how do you tell people that you have cf? who do you tell, and do you talk about it a lot around them once they know? I don't mind telling ppl about my cf, I'm not ashamed of it or anything, but it's hard for me to tell many ppl because they don't understand. Initially, it always scares people into thinking I could die any day now or something. When I talk about it with people that know I have it, they are of course accepting and listen, but have no idea as to what I'm talking about. They really don't understand it and sometimes I feel they get the notion that anytime I go into the hospital (which has only been once or twice) I'll never come out. What do you guys think?

-erin 19/f/cf <img src="i/expressions/musicnote.gif" border="0">
IM: plainjane192

 

[ej0820]

Hey guys,

I have more of a personal question...how do you tell people that you have cf? who do you tell, and do you talk about it a lot around them once they know? I don't mind telling ppl about my cf, I'm not ashamed of it or anything, but it's hard for me to tell many ppl because they don't understand. Initially, it always scares people into thinking I could die any day now or something. When I talk about it with people that know I have it, they are of course accepting and listen, but have no idea as to what I'm talking about. They really don't understand it and sometimes I feel they get the notion that anytime I go into the hospital (which has only been once or twice) I'll never come out. What do you guys think?

-erin 19/f/cf <img src="i/expressions/musicnote.gif" border="0">
IM: plainjane192

 

[AbsintheSorrow]

I've always been very open about it, personally. I grew up as a CF poster child, and so everyone has always known about me. Whenever I encounter new people, I tell them I have a genetic lung disease. And then if they ask questions, I happily answer. For an example as an uncomfortable situation, in class last week this guy that has been nice to me in the past was covering his face near me because I coughed all through class. I finally looked at him and told him that he wouldn't get sick from me, and he needn't worry. He asked me how I was sure. I told him I had a genetic lung disease, and that it's nothing he could catch. He think was quiet for a minute (I think he felt like an ass, lol), and then asked genuinely curious questions, that I answered for him.

I give a broad overfiew of CF (hard to do, I know), but usually I just start with "I was born with a genetic lung disease called cystic fibrosis." And then I gauge by their questions. I always encourage questions, and people can ask anything they want to me without offending me. The better people know me, usually the grosser or more depressing the questions get (lol), but it doesn't bother me. I like very much for people to be informed, so I'm damn near a walking announcement for CF.

But that's just me. Many people are far more private, and even like to hide their CF. I personally could never do that as it's nothing to be ashamed of, and if people treat you differently because of it, you don't want to be their friends anyway! But to each his own. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[AbsintheSorrow]

I've always been very open about it, personally. I grew up as a CF poster child, and so everyone has always known about me. Whenever I encounter new people, I tell them I have a genetic lung disease. And then if they ask questions, I happily answer. For an example as an uncomfortable situation, in class last week this guy that has been nice to me in the past was covering his face near me because I coughed all through class. I finally looked at him and told him that he wouldn't get sick from me, and he needn't worry. He asked me how I was sure. I told him I had a genetic lung disease, and that it's nothing he could catch. He think was quiet for a minute (I think he felt like an ass, lol), and then asked genuinely curious questions, that I answered for him.

I give a broad overfiew of CF (hard to do, I know), but usually I just start with "I was born with a genetic lung disease called cystic fibrosis." And then I gauge by their questions. I always encourage questions, and people can ask anything they want to me without offending me. The better people know me, usually the grosser or more depressing the questions get (lol), but it doesn't bother me. I like very much for people to be informed, so I'm damn near a walking announcement for CF.

But that's just me. Many people are far more private, and even like to hide their CF. I personally could never do that as it's nothing to be ashamed of, and if people treat you differently because of it, you don't want to be their friends anyway! But to each his own. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[cfgirl38]

The first couple years I really didn't tell anyone. But when I did start talking I realized how much people didn't know about this disease. So now I'm kind of a sounding board for CF. I've only known I had the disease for 5 years. I'm 35. People don't know about CF like they do other diseases that are talked about every day in the news. Knowledge is Power!!! Maybe if more people knew of people that have CF than maybe they wouldn't think we're walking germs waiting to prey on them. <img src="i/expressions/face-icon-small-wink.gif" border="0"> ha! Ha! Ha! Eva

 

[cfgirl38]

The first couple years I really didn't tell anyone. But when I did start talking I realized how much people didn't know about this disease. So now I'm kind of a sounding board for CF. I've only known I had the disease for 5 years. I'm 35. People don't know about CF like they do other diseases that are talked about every day in the news. Knowledge is Power!!! Maybe if more people knew of people that have CF than maybe they wouldn't think we're walking germs waiting to prey on them. <img src="i/expressions/face-icon-small-wink.gif" border="0"> ha! Ha! Ha! Eva

 

[ClashPunk82]

im very open about my cf. everyone in school knew.i myself like to talk about it and help people understand what it is. most of the time they dont think its a big deal cuz they think well you look good so you must be ok, but then when i really explain all about it then they realizw wow this is a serious disease. sometimes i keep it private from people i dont like and dont want to know <img src="i/expressions/face-icon-small-smile.gif" border="0"> most of the time people will ask you why you cough so much, thats pretty good cuz then you dont have to start it off, for me its easier that way cuz sometimes i feel like if i start the convo about it its like im whining or trying to get sympathy which im not but sometimes i do feel that way. so dont be afraid to let ppl know what you have and theyll be glad you shared it with them. <img src="i/expressions/heart.gif" border="0">

nicole 22 CF

 

[ClashPunk82]

im very open about my cf. everyone in school knew.i myself like to talk about it and help people understand what it is. most of the time they dont think its a big deal cuz they think well you look good so you must be ok, but then when i really explain all about it then they realizw wow this is a serious disease. sometimes i keep it private from people i dont like and dont want to know <img src="i/expressions/face-icon-small-smile.gif" border="0"> most of the time people will ask you why you cough so much, thats pretty good cuz then you dont have to start it off, for me its easier that way cuz sometimes i feel like if i start the convo about it its like im whining or trying to get sympathy which im not but sometimes i do feel that way. so dont be afraid to let ppl know what you have and theyll be glad you shared it with them. <img src="i/expressions/heart.gif" border="0">

nicole 22 CF

 

[kybert]

because my voice is pretty mangled and im always coughing i pretty much have to 'explain' myself all the time. i dont talk about it much with the people i know. for starters they cant relate to me in anyway so they end up not taking interest and if people do take interest there is always a selected few who get jealous because the spotlight isnt on them. when i was in high school there was this girl who got SO jealous of the fact that people were concerned about me that she went so far as to start teasing me about being sick and being in hospital. some days shed say 'oh did you bring your hospital pillow with you today?' to take the mickey out of me all because i talked about hospital experiences.

 

[kybert]

because my voice is pretty mangled and im always coughing i pretty much have to 'explain' myself all the time. i dont talk about it much with the people i know. for starters they cant relate to me in anyway so they end up not taking interest and if people do take interest there is always a selected few who get jealous because the spotlight isnt on them. when i was in high school there was this girl who got SO jealous of the fact that people were concerned about me that she went so far as to start teasing me about being sick and being in hospital. some days shed say 'oh did you bring your hospital pillow with you today?' to take the mickey out of me all because i talked about hospital experiences.

 

[ClashPunk82]

its so sick that people get jealous. when i told my aunts about my transplant they were sobbing and were so upset they called into work to take of for a few days and they told a few of their freinds so they could get sympathy for themselves i was like hello??!! im the one whose goin thru all this not you!! what a jerk that the girl made fun of you well it would be funny to see how she acts if she really got sick, usually people change their tunes after that!!

 

[ClashPunk82]

its so sick that people get jealous. when i told my aunts about my transplant they were sobbing and were so upset they called into work to take of for a few days and they told a few of their freinds so they could get sympathy for themselves i was like hello??!! im the one whose goin thru all this not you!! what a jerk that the girl made fun of you well it would be funny to see how she acts if she really got sick, usually people change their tunes after that!!

 

[rachelsmom]

I just have to tell you that I love your attitude about CF. Keep this up and you are going to have a very wonderful life. I love it when people tell it like it is. My daughter has CF and is 8 years old. She has the same type of attitude. She sat in a chair in front of her whole second grade class and answered questions about CF because they had a fund raising walk at her school and the kids were curious. I also encourage her to never be embarassed.

Thanks for your honesty and good luck.


Teri

 

[rachelsmom]

I just have to tell you that I love your attitude about CF. Keep this up and you are going to have a very wonderful life. I love it when people tell it like it is. My daughter has CF and is 8 years old. She has the same type of attitude. She sat in a chair in front of her whole second grade class and answered questions about CF because they had a fund raising walk at her school and the kids were curious. I also encourage her to never be embarassed.

Thanks for your honesty and good luck.


Teri

 

[Dea]

I have to agree....dont be embarassed about it. We need to talk about it more to make more people aware of this disease. Being that it affects about 30,000 of the population..it is not as widely known as other diseases. I wear my CF awareness pin everyday....just so someone might ask...and I can explain it to them. Awareness.....is the first step to help finding a cure! Take Care All!
Dea
31 w/CF and CFRD

 

[Dea]

I have to agree....dont be embarassed about it. We need to talk about it more to make more people aware of this disease. Being that it affects about 30,000 of the population..it is not as widely known as other diseases. I wear my CF awareness pin everyday....just so someone might ask...and I can explain it to them. Awareness.....is the first step to help finding a cure! Take Care All!
Dea
31 w/CF and CFRD

 

[EmilysMom]

I agree with everyone else. Never be embarassed by it. Did you get CF on purpose? Of course not! When EMily was little, we used to tell everyone about CF, (whether they wanted to know or not...LOL). We always figured that awareness was the key to a cure! ;o)

 

[EmilysMom]

I agree with everyone else. Never be embarassed by it. Did you get CF on purpose? Of course not! When EMily was little, we used to tell everyone about CF, (whether they wanted to know or not...LOL). We always figured that awareness was the key to a cure! ;o)

 

[Joblazer86]

I AGREE! NEVER BE EMBARRASSED!

 

[Joblazer86]

I AGREE! NEVER BE EMBARRASSED!