How to proactively embrace CF?

JORDYSMOM · Jun 18, 2007

Hi Welshwitch

My thought regarding telling your friends about your CF is this:

If they are your FRIENDS, the fact that you have CF will not change anything. In fact, it should strengthen your friendship. They should feel priviledged that you are sharing this part of yourself with them.

One way to bring it up to them might be to ask for their support in a Great Strides event or some other fund raising event. Tell them it is important to you because you have CF. Maybe getting involved with fund raising would help you feel more comfortable with yourself as well. It may at least help you feel less negatively about things.

I hope you get to know yourself better and most importantly I hope you like the preson you find.

JORDYSMOM · Jun 18, 2007

Hi Welshwitch

My thought regarding telling your friends about your CF is this:

If they are your FRIENDS, the fact that you have CF will not change anything. In fact, it should strengthen your friendship. They should feel priviledged that you are sharing this part of yourself with them.

One way to bring it up to them might be to ask for their support in a Great Strides event or some other fund raising event. Tell them it is important to you because you have CF. Maybe getting involved with fund raising would help you feel more comfortable with yourself as well. It may at least help you feel less negatively about things.

I hope you get to know yourself better and most importantly I hope you like the preson you find.

JORDYSMOM · Jun 18, 2007

Hi Welshwitch

My thought regarding telling your friends about your CF is this:

If they are your FRIENDS, the fact that you have CF will not change anything. In fact, it should strengthen your friendship. They should feel priviledged that you are sharing this part of yourself with them.

One way to bring it up to them might be to ask for their support in a Great Strides event or some other fund raising event. Tell them it is important to you because you have CF. Maybe getting involved with fund raising would help you feel more comfortable with yourself as well. It may at least help you feel less negatively about things.

I hope you get to know yourself better and most importantly I hope you like the preson you find.

JORDYSMOM · Jun 18, 2007

Hi Welshwitch

My thought regarding telling your friends about your CF is this:

If they are your FRIENDS, the fact that you have CF will not change anything. In fact, it should strengthen your friendship. They should feel priviledged that you are sharing this part of yourself with them.

One way to bring it up to them might be to ask for their support in a Great Strides event or some other fund raising event. Tell them it is important to you because you have CF. Maybe getting involved with fund raising would help you feel more comfortable with yourself as well. It may at least help you feel less negatively about things.

I hope you get to know yourself better and most importantly I hope you like the preson you find.

Emily65Roses · Jun 18, 2007

People take cues from you about it. If you sit down and tell them, but let them know it's not the end of the world, they'll relax. Basically, when I tell people, I give them the facts, I let them know what it is, what it means... but then I throw in a smartass comment, or something. Lighten the mood. They notice that and hang onto it, and base their mood on that.

You can be truthful with them and still not kill the mood or freak them out. Give them the honest facts... and then spice it up with some of your personality.

Emily65Roses · Jun 18, 2007

People take cues from you about it. If you sit down and tell them, but let them know it's not the end of the world, they'll relax. Basically, when I tell people, I give them the facts, I let them know what it is, what it means... but then I throw in a smartass comment, or something. Lighten the mood. They notice that and hang onto it, and base their mood on that.

You can be truthful with them and still not kill the mood or freak them out. Give them the honest facts... and then spice it up with some of your personality.

Emily65Roses · Jun 18, 2007

People take cues from you about it. If you sit down and tell them, but let them know it's not the end of the world, they'll relax. Basically, when I tell people, I give them the facts, I let them know what it is, what it means... but then I throw in a smartass comment, or something. Lighten the mood. They notice that and hang onto it, and base their mood on that.

You can be truthful with them and still not kill the mood or freak them out. Give them the honest facts... and then spice it up with some of your personality.

Emily65Roses · Jun 18, 2007

People take cues from you about it. If you sit down and tell them, but let them know it's not the end of the world, they'll relax. Basically, when I tell people, I give them the facts, I let them know what it is, what it means... but then I throw in a smartass comment, or something. Lighten the mood. They notice that and hang onto it, and base their mood on that.

You can be truthful with them and still not kill the mood or freak them out. Give them the honest facts... and then spice it up with some of your personality.

Emily65Roses · Jun 18, 2007

People take cues from you about it. If you sit down and tell them, but let them know it's not the end of the world, they'll relax. Basically, when I tell people, I give them the facts, I let them know what it is, what it means... but then I throw in a smartass comment, or something. Lighten the mood. They notice that and hang onto it, and base their mood on that.

You can be truthful with them and still not kill the mood or freak them out. Give them the honest facts... and then spice it up with some of your personality.

Emily65Roses · Jun 18, 2007

People take cues from you about it. If you sit down and tell them, but let them know it's not the end of the world, they'll relax. Basically, when I tell people, I give them the facts, I let them know what it is, what it means... but then I throw in a smartass comment, or something. Lighten the mood. They notice that and hang onto it, and base their mood on that.

You can be truthful with them and still not kill the mood or freak them out. Give them the honest facts... and then spice it up with some of your personality.

kswitch · Jun 18, 2007

well, i write. i laugh when i can, and i'm not afraid to cry. a lot of it comes down to realizing that cf is a a part of you. while it may feel like you are in a constant battle with yourself, it helps to know that everyone fights an internal struggle. once you realize that, you might start to feel more normal, less different than everyone else.

we spend so much of our early lives trying to be normal that our nuances (meds, treatments, coughing, etc) are so much more extraordinary to us; they become our enemies. our personal struggles are exposed, and they haunt us from day 1. for others, this struggle isn't so obvious, but it does exist.

what has helped me see this is listening to people, really listening. hearing more than just their words, beacuse the details are always different; the language, unique, but the anxiety is the same; the fear...the same; the hope...the same. when i realize that, i can see myself in them, and i know we are one..unique, but connected. and that helps me feel more normal, less different. i know they need me as mcuh as i need them.

at least that's how it happened for me.

sorry, i've been in a philosophical mood today. i hope i didn't confuse the issue.

kswitch · Jun 18, 2007

well, i write. i laugh when i can, and i'm not afraid to cry. a lot of it comes down to realizing that cf is a a part of you. while it may feel like you are in a constant battle with yourself, it helps to know that everyone fights an internal struggle. once you realize that, you might start to feel more normal, less different than everyone else.

we spend so much of our early lives trying to be normal that our nuances (meds, treatments, coughing, etc) are so much more extraordinary to us; they become our enemies. our personal struggles are exposed, and they haunt us from day 1. for others, this struggle isn't so obvious, but it does exist.

what has helped me see this is listening to people, really listening. hearing more than just their words, beacuse the details are always different; the language, unique, but the anxiety is the same; the fear...the same; the hope...the same. when i realize that, i can see myself in them, and i know we are one..unique, but connected. and that helps me feel more normal, less different. i know they need me as mcuh as i need them.

at least that's how it happened for me.

sorry, i've been in a philosophical mood today. i hope i didn't confuse the issue.

kswitch · Jun 18, 2007

well, i write. i laugh when i can, and i'm not afraid to cry. a lot of it comes down to realizing that cf is a a part of you. while it may feel like you are in a constant battle with yourself, it helps to know that everyone fights an internal struggle. once you realize that, you might start to feel more normal, less different than everyone else.

we spend so much of our early lives trying to be normal that our nuances (meds, treatments, coughing, etc) are so much more extraordinary to us; they become our enemies. our personal struggles are exposed, and they haunt us from day 1. for others, this struggle isn't so obvious, but it does exist.

what has helped me see this is listening to people, really listening. hearing more than just their words, beacuse the details are always different; the language, unique, but the anxiety is the same; the fear...the same; the hope...the same. when i realize that, i can see myself in them, and i know we are one..unique, but connected. and that helps me feel more normal, less different. i know they need me as mcuh as i need them.

at least that's how it happened for me.

sorry, i've been in a philosophical mood today. i hope i didn't confuse the issue.

kswitch · Jun 18, 2007

well, i write. i laugh when i can, and i'm not afraid to cry. a lot of it comes down to realizing that cf is a a part of you. while it may feel like you are in a constant battle with yourself, it helps to know that everyone fights an internal struggle. once you realize that, you might start to feel more normal, less different than everyone else.

we spend so much of our early lives trying to be normal that our nuances (meds, treatments, coughing, etc) are so much more extraordinary to us; they become our enemies. our personal struggles are exposed, and they haunt us from day 1. for others, this struggle isn't so obvious, but it does exist.

what has helped me see this is listening to people, really listening. hearing more than just their words, beacuse the details are always different; the language, unique, but the anxiety is the same; the fear...the same; the hope...the same. when i realize that, i can see myself in them, and i know we are one..unique, but connected. and that helps me feel more normal, less different. i know they need me as mcuh as i need them.

at least that's how it happened for me.

sorry, i've been in a philosophical mood today. i hope i didn't confuse the issue.

kswitch · Jun 18, 2007

well, i write. i laugh when i can, and i'm not afraid to cry. a lot of it comes down to realizing that cf is a a part of you. while it may feel like you are in a constant battle with yourself, it helps to know that everyone fights an internal struggle. once you realize that, you might start to feel more normal, less different than everyone else.

we spend so much of our early lives trying to be normal that our nuances (meds, treatments, coughing, etc) are so much more extraordinary to us; they become our enemies. our personal struggles are exposed, and they haunt us from day 1. for others, this struggle isn't so obvious, but it does exist.

what has helped me see this is listening to people, really listening. hearing more than just their words, beacuse the details are always different; the language, unique, but the anxiety is the same; the fear...the same; the hope...the same. when i realize that, i can see myself in them, and i know we are one..unique, but connected. and that helps me feel more normal, less different. i know they need me as mcuh as i need them.

at least that's how it happened for me.

sorry, i've been in a philosophical mood today. i hope i didn't confuse the issue.

kswitch · Jun 18, 2007

well, i write. i laugh when i can, and i'm not afraid to cry. a lot of it comes down to realizing that cf is a a part of you. while it may feel like you are in a constant battle with yourself, it helps to know that everyone fights an internal struggle. once you realize that, you might start to feel more normal, less different than everyone else.

we spend so much of our early lives trying to be normal that our nuances (meds, treatments, coughing, etc) are so much more extraordinary to us; they become our enemies. our personal struggles are exposed, and they haunt us from day 1. for others, this struggle isn't so obvious, but it does exist.

what has helped me see this is listening to people, really listening. hearing more than just their words, beacuse the details are always different; the language, unique, but the anxiety is the same; the fear...the same; the hope...the same. when i realize that, i can see myself in them, and i know we are one..unique, but connected. and that helps me feel more normal, less different. i know they need me as mcuh as i need them.

at least that's how it happened for me.

sorry, i've been in a philosophical mood today. i hope i didn't confuse the issue.

Wheezie · Jun 18, 2007

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 · Jun 18, 2007

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 · Jun 18, 2007

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 · Jun 18, 2007

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">

How to proactively embrace CF?

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