Telling People

JazzysMom

New member
RISA.....just out of curiousity since I live in the Catskill Mountains, do you remember where (hotel, place etc) that U were at or the name of the DJ that U were speaking of? Wouldnt it be a hoot if I knew them. I dont what the chances are, but you never know?!
 

JazzysMom

New member
RISA.....just out of curiousity since I live in the Catskill Mountains, do you remember where (hotel, place etc) that U were at or the name of the DJ that U were speaking of? Wouldnt it be a hoot if I knew them. I dont what the chances are, but you never know?!
 

anonymous

New member
Hi Melissa

His name was John and he looked old at the time and it was at the Concord Hotel. I use to go there for a month or so about thirty years ago. I do not think I would even recognize this man if I saw him. IT is interesting how we do not forget how somone could make us feel though???

Thank you for asking. IT is a beautiful place up there and I have not been back since my childhood
Risa
 

anonymous

New member
Hi Melissa

His name was John and he looked old at the time and it was at the Concord Hotel. I use to go there for a month or so about thirty years ago. I do not think I would even recognize this man if I saw him. IT is interesting how we do not forget how somone could make us feel though???

Thank you for asking. IT is a beautiful place up there and I have not been back since my childhood
Risa
 

CarolynnS

New member
coming from someone who dose not have CF.. i know it was really hard for my boyfreind to tell me.. and it took him a few weeks to get it all out.. i feel bad too cuz i took it kidna hard i tried to smile and act like oh ok <img src="i/expressions/face-icon-small-smile.gif" border="0"> but it was nto oh ok.. it was wow... WOW.. how do you get into a realationship withsomeoen you have no idea about the disease they have.. then come the questions in my head... well how long dose he have waht is CF... ect all the way down the line...

So when you tell someone make sure you are comfertalbe together... and make sure you explain waht it is.. and try to ease it slowly so they dont freak out.. i know it sounds mean but it is scary for us too... kinda feeling helpless and such. Make sure they have an understanding of what it is as you tell them you have it. and let them know you take care of yourslef and not to worry.. just you wanted to let them know incase they hear you cough alot and get tiered going up stairs...
 

CarolynnS

New member
coming from someone who dose not have CF.. i know it was really hard for my boyfreind to tell me.. and it took him a few weeks to get it all out.. i feel bad too cuz i took it kidna hard i tried to smile and act like oh ok <img src="i/expressions/face-icon-small-smile.gif" border="0"> but it was nto oh ok.. it was wow... WOW.. how do you get into a realationship withsomeoen you have no idea about the disease they have.. then come the questions in my head... well how long dose he have waht is CF... ect all the way down the line...

So when you tell someone make sure you are comfertalbe together... and make sure you explain waht it is.. and try to ease it slowly so they dont freak out.. i know it sounds mean but it is scary for us too... kinda feeling helpless and such. Make sure they have an understanding of what it is as you tell them you have it. and let them know you take care of yourslef and not to worry.. just you wanted to let them know incase they hear you cough alot and get tiered going up stairs...
 

Allie

New member
Ry told me right away, before we ever dated. When we dated, he clarified it again for me. He wanted me to know what I was getting into.

<blockquote>Quote<br><hr>"hey I'm dying"<hr></blockquote>

That made me laugh, because it's basically what Ry said to me when I accepted his proposal. "Are you sure? You know I'm doomed, right?" lol. What a doof.
 

Allie

New member
Ry told me right away, before we ever dated. When we dated, he clarified it again for me. He wanted me to know what I was getting into.

<blockquote>Quote<br><hr>"hey I'm dying"<hr></blockquote>

That made me laugh, because it's basically what Ry said to me when I accepted his proposal. "Are you sure? You know I'm doomed, right?" lol. What a doof.
 

anonymous

New member
Hey,

I've never really had trouble telling peopel. In school I got teased alot for coughing or clearing my throat in class.

That made me a little shy about it then, but I grew out of that. I've found a few people in life that did not want to get close to me because of their fear I would die. While I see that human, imperfect side, I still strongly diasagree with that.

That's just a selfish attitude. And I wouldn't want to be close to someone like that anyway.

If people in malls, or on the street see my meds, or ask why I'm coughing, I just say, I'm fine, I have cystic fibrosis. If they ask what it is, I just say it's like really bad asthma. I still find alot of people that don't know what it is.

I got fired once for my CF. I was too young, and too inexperienced to know that it was basically illegal though. Now I would have kicked them in the you know what.

Overall, everyone in my life knows what I have. It's harder on some more than others. But, it's a big part of who I am, so take me or leave me.

Christian
 

anonymous

New member
Hey,

I've never really had trouble telling peopel. In school I got teased alot for coughing or clearing my throat in class.

That made me a little shy about it then, but I grew out of that. I've found a few people in life that did not want to get close to me because of their fear I would die. While I see that human, imperfect side, I still strongly diasagree with that.

That's just a selfish attitude. And I wouldn't want to be close to someone like that anyway.

If people in malls, or on the street see my meds, or ask why I'm coughing, I just say, I'm fine, I have cystic fibrosis. If they ask what it is, I just say it's like really bad asthma. I still find alot of people that don't know what it is.

I got fired once for my CF. I was too young, and too inexperienced to know that it was basically illegal though. Now I would have kicked them in the you know what.

Overall, everyone in my life knows what I have. It's harder on some more than others. But, it's a big part of who I am, so take me or leave me.

Christian
 

JazzysMom

New member
OMG Risa....the Concord is only 15 minutes away from me. Or use to be since the Concord like just about all the other resorts/hotels have met their demise & closed. How ironic....John is a bit vague so I guess I wont know who he is.....LOL
 

JazzysMom

New member
OMG Risa....the Concord is only 15 minutes away from me. Or use to be since the Concord like just about all the other resorts/hotels have met their demise & closed. How ironic....John is a bit vague so I guess I wont know who he is.....LOL
 

AnnaBegins

New member
Jake,
First of all, I am so happy that you are doing so good. My fiancee David is 21 and his lung functions are at the same level as yours. As far as telling people goes, don't be ashamed! Don't be embarrassed either. It is part of who you are, and always will be, so just take it all in. When you find the right person, and they find you, it won't be an issue. I know it isn't with me. But you should tell people, especially those you are close to. I know when David told me in about 9th grade, I was really interested. But I also did the stupid thing and jumped on the internet to learn about it. Bad idea. If you are dating someone, I just think it is probably a good idea to tell them. Especially since you are doing so good, that is inspirational. You never want to give people the idea that it is something to be ashamed of. But at the same time, if it makes you uncomfortable, don't tell people unless they need to know, ya know? I don't know if this is helping you at all, I hope so. When I found out that Dave had it, I cried and cried and didn't know what to think, but nothing negative ever came across my mind. It actually made me more interested in him, and now we are both really active about it. But at the same time, it is not who he is, it is just a part of him, you know? Sometimes people let it take over there lives, or other family members can get obsessed and forget that cystic fibrosis isn't everything about the person. And that I think can really hurt people. It hurts David when the first thing someone who knows he has it says, 'how are you feeling?' or 'how are your lungs' and the big 'have you been doing your treatments?'. Some people care, some people smother. I think the end all decision of when to tell people is up to you. It depends on your comfort level. As for me, it brought David and I closer together. Honesty is good. I hope this helped you. I am glad you are doing well.
 

AnnaBegins

New member
Jake,
First of all, I am so happy that you are doing so good. My fiancee David is 21 and his lung functions are at the same level as yours. As far as telling people goes, don't be ashamed! Don't be embarrassed either. It is part of who you are, and always will be, so just take it all in. When you find the right person, and they find you, it won't be an issue. I know it isn't with me. But you should tell people, especially those you are close to. I know when David told me in about 9th grade, I was really interested. But I also did the stupid thing and jumped on the internet to learn about it. Bad idea. If you are dating someone, I just think it is probably a good idea to tell them. Especially since you are doing so good, that is inspirational. You never want to give people the idea that it is something to be ashamed of. But at the same time, if it makes you uncomfortable, don't tell people unless they need to know, ya know? I don't know if this is helping you at all, I hope so. When I found out that Dave had it, I cried and cried and didn't know what to think, but nothing negative ever came across my mind. It actually made me more interested in him, and now we are both really active about it. But at the same time, it is not who he is, it is just a part of him, you know? Sometimes people let it take over there lives, or other family members can get obsessed and forget that cystic fibrosis isn't everything about the person. And that I think can really hurt people. It hurts David when the first thing someone who knows he has it says, 'how are you feeling?' or 'how are your lungs' and the big 'have you been doing your treatments?'. Some people care, some people smother. I think the end all decision of when to tell people is up to you. It depends on your comfort level. As for me, it brought David and I closer together. Honesty is good. I hope this helped you. I am glad you are doing well.
 

boyfriendofCFer

New member
hey I just wanted to say that I hate it when i'm out in public with my girl and she has a coughing attack and people all around are like poor girl you ok and she replys yes of course I'v just got really bad asthama and they understand or atleats they think they understand she is very open about her C.F but too many people just dont know what it is. when I first met Amanda I knew something was wrong cause of her breathing and caughing. she has always been very open to me and explained everything that I wanted to know and lots that i didn't want to know we have grown very close now and hope to be married and have kids in the next couple of years. I think that you should be as open as you can to everyone you know and met and you will find out who your true friends are. plus the more people who know about C.F the better!
 

boyfriendofCFer

New member
hey I just wanted to say that I hate it when i'm out in public with my girl and she has a coughing attack and people all around are like poor girl you ok and she replys yes of course I'v just got really bad asthama and they understand or atleats they think they understand she is very open about her C.F but too many people just dont know what it is. when I first met Amanda I knew something was wrong cause of her breathing and caughing. she has always been very open to me and explained everything that I wanted to know and lots that i didn't want to know we have grown very close now and hope to be married and have kids in the next couple of years. I think that you should be as open as you can to everyone you know and met and you will find out who your true friends are. plus the more people who know about C.F the better!
 
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