How to proactively embrace CF?

[Wheezie]

It's great that your health is so good - in some ways that can make it MORE difficult to deal with the emotional aspects of having CF. If you're not that sick and you can "hide" it easily, well, you're not forced to tell so why should you? But I think your boyfriend has a point. I like Emily's advice about throwing in a bit of your personality when telling to lighten the mood. One problem I've always had (and continue to have, by the way) is making my CF sound like no big deal to ease the minds of whomever I'm telling. I say, "yeah I cough a lot, but it's not contagious and it's really no big deal." Then I end up in the hospital and they totally freak out. I just think you have to be honest and be prepared to explain what it is because a lot of people still haven't even heard of it, if you can believe that, and even more don't know anything about it. I remind people (and myself) that it's a progressive disease, that it's manageable, and that I'm doing all the things I need to do to live my life just as fully as anyone else.

Be prepared for a) the sympathizers - "oh my, that's so AWFUL! I'm so SORRY", b) the hero-worshipers - "Wow, you are so BRAVE. And you're working and going to school, TOO?! you're AMAZING!", and c) the I-don't-know-what-to-say-so-I'm-just-going-to-try-to-make-you-feel-better-by-commenting-on-the-fragility-of-life'rs - "you know, none of us really knows how long we have; I could get hit by a bus tomorrow." (that last one is my favorite)

By the way, love your name. I'm actually (sorta) named after a welsh witch so I'm curious now about why you chose it for your moniker <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Wheezie]

It's great that your health is so good - in some ways that can make it MORE difficult to deal with the emotional aspects of having CF. If you're not that sick and you can "hide" it easily, well, you're not forced to tell so why should you? But I think your boyfriend has a point. I like Emily's advice about throwing in a bit of your personality when telling to lighten the mood. One problem I've always had (and continue to have, by the way) is making my CF sound like no big deal to ease the minds of whomever I'm telling. I say, "yeah I cough a lot, but it's not contagious and it's really no big deal." Then I end up in the hospital and they totally freak out. I just think you have to be honest and be prepared to explain what it is because a lot of people still haven't even heard of it, if you can believe that, and even more don't know anything about it. I remind people (and myself) that it's a progressive disease, that it's manageable, and that I'm doing all the things I need to do to live my life just as fully as anyone else.

Be prepared for a) the sympathizers - "oh my, that's so AWFUL! I'm so SORRY", b) the hero-worshipers - "Wow, you are so BRAVE. And you're working and going to school, TOO?! you're AMAZING!", and c) the I-don't-know-what-to-say-so-I'm-just-going-to-try-to-make-you-feel-better-by-commenting-on-the-fragility-of-life'rs - "you know, none of us really knows how long we have; I could get hit by a bus tomorrow." (that last one is my favorite)

By the way, love your name. I'm actually (sorta) named after a welsh witch so I'm curious now about why you chose it for your moniker <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[littledebbie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Wheezie</b></i>

I like Emily's advice about throwing in a bit of your personality when telling to lighten the mood. One problem I've always had (and continue to have, by the way) is making my CF sound like no big deal to ease the minds of whomever I'm telling. I say, "yeah I cough a lot, but it's not contagious and it's really no big deal." Then I end up in the hospital and they totally freak out. </end quote></div>

I agree I tend to do what Emily was describing too, but it's kind of a load of crap because it <i>is</i> a big deal so it's like I told them but then I sort of undid it because I softend it soo much I might as well have not told them.

Also I just wanted to say on the topic of "embracing CF". I personally don't. And I don't think thats a bad thing. I don't think one way is better than the other. For me you are either one type or another, a lot the way you are either naturally shy or outgoing. Neither is better than the other they just Are. Who I tell etc. has no affect on how well I take care of myself, and as far as a support system... really only those closest to you are going to be of much help anyway.

I have found though that some people who are of the other persuassion often think their way is better. They tend to think not telling equals shame or embarressment. They just don't understand the need for privacy I guess. Or that some people just don't need to tell people everything about themselves, that personally doesn't make me feel all that much more closer to anyone. For me if I wouldn't give you the pin number to my bank account I don't need to tell you about my CF. That's me anyway, and maybe you are the other way and you do want to tell people and you just have never found a way to do that.

But if you are more like me and your boyfriend is more the other way, outgoing open book (I tend to date my opposite too), maybe you should think a little longer on if you really want to do this telling everyone thing, because it's not really something you can undo, and like I said just because thats maybe what HE would do if it was him and that wouldn't be wrong, it doesnt necessarily make it the right thing for you.

Wow this was long and not sure it was helpful <img src="i/expressions/face-icon-small-smile.gif" border="0"> Sorry.

 

[littledebbie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Wheezie</b></i>

I like Emily's advice about throwing in a bit of your personality when telling to lighten the mood. One problem I've always had (and continue to have, by the way) is making my CF sound like no big deal to ease the minds of whomever I'm telling. I say, "yeah I cough a lot, but it's not contagious and it's really no big deal." Then I end up in the hospital and they totally freak out. </end quote></div>

I agree I tend to do what Emily was describing too, but it's kind of a load of crap because it <i>is</i> a big deal so it's like I told them but then I sort of undid it because I softend it soo much I might as well have not told them.

Also I just wanted to say on the topic of "embracing CF". I personally don't. And I don't think thats a bad thing. I don't think one way is better than the other. For me you are either one type or another, a lot the way you are either naturally shy or outgoing. Neither is better than the other they just Are. Who I tell etc. has no affect on how well I take care of myself, and as far as a support system... really only those closest to you are going to be of much help anyway.

I have found though that some people who are of the other persuassion often think their way is better. They tend to think not telling equals shame or embarressment. They just don't understand the need for privacy I guess. Or that some people just don't need to tell people everything about themselves, that personally doesn't make me feel all that much more closer to anyone. For me if I wouldn't give you the pin number to my bank account I don't need to tell you about my CF. That's me anyway, and maybe you are the other way and you do want to tell people and you just have never found a way to do that.

But if you are more like me and your boyfriend is more the other way, outgoing open book (I tend to date my opposite too), maybe you should think a little longer on if you really want to do this telling everyone thing, because it's not really something you can undo, and like I said just because thats maybe what HE would do if it was him and that wouldn't be wrong, it doesnt necessarily make it the right thing for you.

Wow this was long and not sure it was helpful <img src="i/expressions/face-icon-small-smile.gif" border="0"> Sorry.

 

[littledebbie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Wheezie</b></i>

I like Emily's advice about throwing in a bit of your personality when telling to lighten the mood. One problem I've always had (and continue to have, by the way) is making my CF sound like no big deal to ease the minds of whomever I'm telling. I say, "yeah I cough a lot, but it's not contagious and it's really no big deal." Then I end up in the hospital and they totally freak out. </end quote></div>

I agree I tend to do what Emily was describing too, but it's kind of a load of crap because it <i>is</i> a big deal so it's like I told them but then I sort of undid it because I softend it soo much I might as well have not told them.

Also I just wanted to say on the topic of "embracing CF". I personally don't. And I don't think thats a bad thing. I don't think one way is better than the other. For me you are either one type or another, a lot the way you are either naturally shy or outgoing. Neither is better than the other they just Are. Who I tell etc. has no affect on how well I take care of myself, and as far as a support system... really only those closest to you are going to be of much help anyway.

I have found though that some people who are of the other persuassion often think their way is better. They tend to think not telling equals shame or embarressment. They just don't understand the need for privacy I guess. Or that some people just don't need to tell people everything about themselves, that personally doesn't make me feel all that much more closer to anyone. For me if I wouldn't give you the pin number to my bank account I don't need to tell you about my CF. That's me anyway, and maybe you are the other way and you do want to tell people and you just have never found a way to do that.

But if you are more like me and your boyfriend is more the other way, outgoing open book (I tend to date my opposite too), maybe you should think a little longer on if you really want to do this telling everyone thing, because it's not really something you can undo, and like I said just because thats maybe what HE would do if it was him and that wouldn't be wrong, it doesnt necessarily make it the right thing for you.

Wow this was long and not sure it was helpful <img src="i/expressions/face-icon-small-smile.gif" border="0"> Sorry.

 

[littledebbie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Wheezie</b></i>

I like Emily's advice about throwing in a bit of your personality when telling to lighten the mood. One problem I've always had (and continue to have, by the way) is making my CF sound like no big deal to ease the minds of whomever I'm telling. I say, "yeah I cough a lot, but it's not contagious and it's really no big deal." Then I end up in the hospital and they totally freak out. </end quote></div>

I agree I tend to do what Emily was describing too, but it's kind of a load of crap because it <i>is</i> a big deal so it's like I told them but then I sort of undid it because I softend it soo much I might as well have not told them.

Also I just wanted to say on the topic of "embracing CF". I personally don't. And I don't think thats a bad thing. I don't think one way is better than the other. For me you are either one type or another, a lot the way you are either naturally shy or outgoing. Neither is better than the other they just Are. Who I tell etc. has no affect on how well I take care of myself, and as far as a support system... really only those closest to you are going to be of much help anyway.

I have found though that some people who are of the other persuassion often think their way is better. They tend to think not telling equals shame or embarressment. They just don't understand the need for privacy I guess. Or that some people just don't need to tell people everything about themselves, that personally doesn't make me feel all that much more closer to anyone. For me if I wouldn't give you the pin number to my bank account I don't need to tell you about my CF. That's me anyway, and maybe you are the other way and you do want to tell people and you just have never found a way to do that.

But if you are more like me and your boyfriend is more the other way, outgoing open book (I tend to date my opposite too), maybe you should think a little longer on if you really want to do this telling everyone thing, because it's not really something you can undo, and like I said just because thats maybe what HE would do if it was him and that wouldn't be wrong, it doesnt necessarily make it the right thing for you.

Wow this was long and not sure it was helpful <img src="i/expressions/face-icon-small-smile.gif" border="0"> Sorry.

 

[littledebbie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Wheezie</b></i>

I like Emily's advice about throwing in a bit of your personality when telling to lighten the mood. One problem I've always had (and continue to have, by the way) is making my CF sound like no big deal to ease the minds of whomever I'm telling. I say, "yeah I cough a lot, but it's not contagious and it's really no big deal." Then I end up in the hospital and they totally freak out. </end quote>

I agree I tend to do what Emily was describing too, but it's kind of a load of crap because it <i>is</i> a big deal so it's like I told them but then I sort of undid it because I softend it soo much I might as well have not told them.

Also I just wanted to say on the topic of "embracing CF". I personally don't. And I don't think thats a bad thing. I don't think one way is better than the other. For me you are either one type or another, a lot the way you are either naturally shy or outgoing. Neither is better than the other they just Are. Who I tell etc. has no affect on how well I take care of myself, and as far as a support system... really only those closest to you are going to be of much help anyway.

I have found though that some people who are of the other persuassion often think their way is better. They tend to think not telling equals shame or embarressment. They just don't understand the need for privacy I guess. Or that some people just don't need to tell people everything about themselves, that personally doesn't make me feel all that much more closer to anyone. For me if I wouldn't give you the pin number to my bank account I don't need to tell you about my CF. That's me anyway, and maybe you are the other way and you do want to tell people and you just have never found a way to do that.

But if you are more like me and your boyfriend is more the other way, outgoing open book (I tend to date my opposite too), maybe you should think a little longer on if you really want to do this telling everyone thing, because it's not really something you can undo, and like I said just because thats maybe what HE would do if it was him and that wouldn't be wrong, it doesnt necessarily make it the right thing for you.

Wow this was long and not sure it was helpful <img src="i/expressions/face-icon-small-smile.gif" border="0"> Sorry.

 

[littledebbie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Wheezie</b></i>

I like Emily's advice about throwing in a bit of your personality when telling to lighten the mood. One problem I've always had (and continue to have, by the way) is making my CF sound like no big deal to ease the minds of whomever I'm telling. I say, "yeah I cough a lot, but it's not contagious and it's really no big deal." Then I end up in the hospital and they totally freak out. </end quote>

I agree I tend to do what Emily was describing too, but it's kind of a load of crap because it <i>is</i> a big deal so it's like I told them but then I sort of undid it because I softend it soo much I might as well have not told them.

Also I just wanted to say on the topic of "embracing CF". I personally don't. And I don't think thats a bad thing. I don't think one way is better than the other. For me you are either one type or another, a lot the way you are either naturally shy or outgoing. Neither is better than the other they just Are. Who I tell etc. has no affect on how well I take care of myself, and as far as a support system... really only those closest to you are going to be of much help anyway.

I have found though that some people who are of the other persuassion often think their way is better. They tend to think not telling equals shame or embarressment. They just don't understand the need for privacy I guess. Or that some people just don't need to tell people everything about themselves, that personally doesn't make me feel all that much more closer to anyone. For me if I wouldn't give you the pin number to my bank account I don't need to tell you about my CF. That's me anyway, and maybe you are the other way and you do want to tell people and you just have never found a way to do that.

But if you are more like me and your boyfriend is more the other way, outgoing open book (I tend to date my opposite too), maybe you should think a little longer on if you really want to do this telling everyone thing, because it's not really something you can undo, and like I said just because thats maybe what HE would do if it was him and that wouldn't be wrong, it doesnt necessarily make it the right thing for you.

Wow this was long and not sure it was helpful <img src="i/expressions/face-icon-small-smile.gif" border="0"> Sorry.