Frustration with a friend'

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NYCLawGirl

New member
Okay, just a quick little trend I've noticed, not at all on this site, but in general...

The other day someone found out I had CF and, rather annoyingly, reacted by saying "wow, you're so old!" First of all, I'm not "old" even by CF standards. I'm 26. But I consider myself lucky, I realize I've lived beyond my original life expectancy and am still healthy, so frustrating as her comment was I tried to take it in the spirit it was offered.

Not so much my friend, who immediately responded that there were TONS of older people with CF and that it was all about taking care of yourself. Which brings me to my main rant here: I felt like he was saying that CF is no longer a real threat...that we could all live into our 50s if only we would just take better care of ourselves. I know the value of compliance, I know it's extremely important, and I am SO inspired by all the wonderful people living such long and healthy lives with CF (including some of you on this board). But I also know some CFers who have always been compliant, who have done all they could and fought so incredibly hard, but still didn't make it. I just feel like it's frustrating when people say things that make it sound like we can (or should be able to) completely control this disease, because many of us just plain can't.

Has anyone else encountered people who in trying to be upbeat and positive end up denying part of the reality of CF? Am I crazy for having a problem with this?
 
N

NYCLawGirl

New member
Okay, just a quick little trend I've noticed, not at all on this site, but in general...

The other day someone found out I had CF and, rather annoyingly, reacted by saying "wow, you're so old!" First of all, I'm not "old" even by CF standards. I'm 26. But I consider myself lucky, I realize I've lived beyond my original life expectancy and am still healthy, so frustrating as her comment was I tried to take it in the spirit it was offered.

Not so much my friend, who immediately responded that there were TONS of older people with CF and that it was all about taking care of yourself. Which brings me to my main rant here: I felt like he was saying that CF is no longer a real threat...that we could all live into our 50s if only we would just take better care of ourselves. I know the value of compliance, I know it's extremely important, and I am SO inspired by all the wonderful people living such long and healthy lives with CF (including some of you on this board). But I also know some CFers who have always been compliant, who have done all they could and fought so incredibly hard, but still didn't make it. I just feel like it's frustrating when people say things that make it sound like we can (or should be able to) completely control this disease, because many of us just plain can't.

Has anyone else encountered people who in trying to be upbeat and positive end up denying part of the reality of CF? Am I crazy for having a problem with this?
 
N

NYCLawGirl

New member
Okay, just a quick little trend I've noticed, not at all on this site, but in general...

The other day someone found out I had CF and, rather annoyingly, reacted by saying "wow, you're so old!" First of all, I'm not "old" even by CF standards. I'm 26. But I consider myself lucky, I realize I've lived beyond my original life expectancy and am still healthy, so frustrating as her comment was I tried to take it in the spirit it was offered.

Not so much my friend, who immediately responded that there were TONS of older people with CF and that it was all about taking care of yourself. Which brings me to my main rant here: I felt like he was saying that CF is no longer a real threat...that we could all live into our 50s if only we would just take better care of ourselves. I know the value of compliance, I know it's extremely important, and I am SO inspired by all the wonderful people living such long and healthy lives with CF (including some of you on this board). But I also know some CFers who have always been compliant, who have done all they could and fought so incredibly hard, but still didn't make it. I just feel like it's frustrating when people say things that make it sound like we can (or should be able to) completely control this disease, because many of us just plain can't.

Has anyone else encountered people who in trying to be upbeat and positive end up denying part of the reality of CF? Am I crazy for having a problem with this?
 
N

NYCLawGirl

New member
Okay, just a quick little trend I've noticed, not at all on this site, but in general...

The other day someone found out I had CF and, rather annoyingly, reacted by saying "wow, you're so old!" First of all, I'm not "old" even by CF standards. I'm 26. But I consider myself lucky, I realize I've lived beyond my original life expectancy and am still healthy, so frustrating as her comment was I tried to take it in the spirit it was offered.

Not so much my friend, who immediately responded that there were TONS of older people with CF and that it was all about taking care of yourself. Which brings me to my main rant here: I felt like he was saying that CF is no longer a real threat...that we could all live into our 50s if only we would just take better care of ourselves. I know the value of compliance, I know it's extremely important, and I am SO inspired by all the wonderful people living such long and healthy lives with CF (including some of you on this board). But I also know some CFers who have always been compliant, who have done all they could and fought so incredibly hard, but still didn't make it. I just feel like it's frustrating when people say things that make it sound like we can (or should be able to) completely control this disease, because many of us just plain can't.

Has anyone else encountered people who in trying to be upbeat and positive end up denying part of the reality of CF? Am I crazy for having a problem with this?
 
N

NYCLawGirl

New member
Okay, just a quick little trend I've noticed, not at all on this site, but in general...
<br />
<br />The other day someone found out I had CF and, rather annoyingly, reacted by saying "wow, you're so old!" First of all, I'm not "old" even by CF standards. I'm 26. But I consider myself lucky, I realize I've lived beyond my original life expectancy and am still healthy, so frustrating as her comment was I tried to take it in the spirit it was offered.
<br />
<br />Not so much my friend, who immediately responded that there were TONS of older people with CF and that it was all about taking care of yourself. Which brings me to my main rant here: I felt like he was saying that CF is no longer a real threat...that we could all live into our 50s if only we would just take better care of ourselves. I know the value of compliance, I know it's extremely important, and I am SO inspired by all the wonderful people living such long and healthy lives with CF (including some of you on this board). But I also know some CFers who have always been compliant, who have done all they could and fought so incredibly hard, but still didn't make it. I just feel like it's frustrating when people say things that make it sound like we can (or should be able to) completely control this disease, because many of us just plain can't.
<br />
<br />Has anyone else encountered people who in trying to be upbeat and positive end up denying part of the reality of CF? Am I crazy for having a problem with this?
 
S

SaltyAndSweet

New member
I TOTALLY understand and agree with what you said. No you are not crazy. A LOT of people live in denial. I have been sick since the middle of last summer and my DAD claimed it to be a cold that just wouldn't go away, not CF. It WAS CF. I think denial helps them cope with the fact that our mortality (and theirs) is truly out of our hands. We can try to do what we can, but sometimes we have absolutely no control over it.
I think most of us Cystics have dealt with this mentally at an very early age. A lot of other people have never had to confront it like we have. They just assume they will live to a ripe old age of 100, no matter what.
 
S

SaltyAndSweet

New member
I TOTALLY understand and agree with what you said. No you are not crazy. A LOT of people live in denial. I have been sick since the middle of last summer and my DAD claimed it to be a cold that just wouldn't go away, not CF. It WAS CF. I think denial helps them cope with the fact that our mortality (and theirs) is truly out of our hands. We can try to do what we can, but sometimes we have absolutely no control over it.
I think most of us Cystics have dealt with this mentally at an very early age. A lot of other people have never had to confront it like we have. They just assume they will live to a ripe old age of 100, no matter what.
 
S

SaltyAndSweet

New member
I TOTALLY understand and agree with what you said. No you are not crazy. A LOT of people live in denial. I have been sick since the middle of last summer and my DAD claimed it to be a cold that just wouldn't go away, not CF. It WAS CF. I think denial helps them cope with the fact that our mortality (and theirs) is truly out of our hands. We can try to do what we can, but sometimes we have absolutely no control over it.
I think most of us Cystics have dealt with this mentally at an very early age. A lot of other people have never had to confront it like we have. They just assume they will live to a ripe old age of 100, no matter what.
 
S

SaltyAndSweet

New member
I TOTALLY understand and agree with what you said. No you are not crazy. A LOT of people live in denial. I have been sick since the middle of last summer and my DAD claimed it to be a cold that just wouldn't go away, not CF. It WAS CF. I think denial helps them cope with the fact that our mortality (and theirs) is truly out of our hands. We can try to do what we can, but sometimes we have absolutely no control over it.
I think most of us Cystics have dealt with this mentally at an very early age. A lot of other people have never had to confront it like we have. They just assume they will live to a ripe old age of 100, no matter what.
 
S

SaltyAndSweet

New member
I TOTALLY understand and agree with what you said. No you are not crazy. A LOT of people live in denial. I have been sick since the middle of last summer and my DAD claimed it to be a cold that just wouldn't go away, not CF. It WAS CF. I think denial helps them cope with the fact that our mortality (and theirs) is truly out of our hands. We can try to do what we can, but sometimes we have absolutely no control over it.
<br />I think most of us Cystics have dealt with this mentally at an very early age. A lot of other people have never had to confront it like we have. They just assume they will live to a ripe old age of 100, no matter what.
 
E

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NYCLawGirl</b></i>
I know the value of compliance, I know it's extremely important, and I am SO inspired by all the wonderful people living such long and healthy lives with CF (including some of you on this board). But I also know some CFers who have always been compliant, who have done all they could and fought so incredibly hard, but still didn't make it.</end quote></div>

Thank you very much. I encounter this even on this very board (though it's rare). And it drives me up the g*ddamn wall. While compliance matters highly, I know people that were/are compliant and just got dealt sh*t cards.
 
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Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NYCLawGirl</b></i>
I know the value of compliance, I know it's extremely important, and I am SO inspired by all the wonderful people living such long and healthy lives with CF (including some of you on this board). But I also know some CFers who have always been compliant, who have done all they could and fought so incredibly hard, but still didn't make it.</end quote></div>

Thank you very much. I encounter this even on this very board (though it's rare). And it drives me up the g*ddamn wall. While compliance matters highly, I know people that were/are compliant and just got dealt sh*t cards.
 
E

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NYCLawGirl</b></i>
I know the value of compliance, I know it's extremely important, and I am SO inspired by all the wonderful people living such long and healthy lives with CF (including some of you on this board). But I also know some CFers who have always been compliant, who have done all they could and fought so incredibly hard, but still didn't make it.</end quote></div>

Thank you very much. I encounter this even on this very board (though it's rare). And it drives me up the g*ddamn wall. While compliance matters highly, I know people that were/are compliant and just got dealt sh*t cards.
 
E

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NYCLawGirl</b></i>
I know the value of compliance, I know it's extremely important, and I am SO inspired by all the wonderful people living such long and healthy lives with CF (including some of you on this board). But I also know some CFers who have always been compliant, who have done all they could and fought so incredibly hard, but still didn't make it.</end quote>

Thank you very much. I encounter this even on this very board (though it's rare). And it drives me up the g*ddamn wall. While compliance matters highly, I know people that were/are compliant and just got dealt sh*t cards.
 
E

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NYCLawGirl</b></i>
<br />I know the value of compliance, I know it's extremely important, and I am SO inspired by all the wonderful people living such long and healthy lives with CF (including some of you on this board). But I also know some CFers who have always been compliant, who have done all they could and fought so incredibly hard, but still didn't make it.</end quote>
<br />
<br />Thank you very much. I encounter this even on this very board (though it's rare). And it drives me up the g*ddamn wall. While compliance matters highly, I know people that were/are compliant and just got dealt sh*t cards.
 
F

Faust

New member
It can be a big crap shoot longevity wise. No one knows how long each of us have. No matter what though, regardless how long you have here, doing your best will always equal the most possible time you will be able to achieve. Mutations, compliance, environment, support, lifestyle, diet, education, and flat out luck all contribute so heavily to CF longevity. I don't get upset when people express their surprise at my age, or the way I look when they find out I have CF. I take it as a compliment regarding luck, and me doing something right. Those without close ties to CF, that have heard of CF, just heard it kills young people. So I wouldn't get bent if they said "Oh my god you have CF? You're 37 years old?!? Wow you look so good!". I just say thanks, and remember why I bust my ass every day to take care of myself and keep myself one step ahead of this disease.
 
F

Faust

New member
It can be a big crap shoot longevity wise. No one knows how long each of us have. No matter what though, regardless how long you have here, doing your best will always equal the most possible time you will be able to achieve. Mutations, compliance, environment, support, lifestyle, diet, education, and flat out luck all contribute so heavily to CF longevity. I don't get upset when people express their surprise at my age, or the way I look when they find out I have CF. I take it as a compliment regarding luck, and me doing something right. Those without close ties to CF, that have heard of CF, just heard it kills young people. So I wouldn't get bent if they said "Oh my god you have CF? You're 37 years old?!? Wow you look so good!". I just say thanks, and remember why I bust my ass every day to take care of myself and keep myself one step ahead of this disease.
 
F

Faust

New member
It can be a big crap shoot longevity wise. No one knows how long each of us have. No matter what though, regardless how long you have here, doing your best will always equal the most possible time you will be able to achieve. Mutations, compliance, environment, support, lifestyle, diet, education, and flat out luck all contribute so heavily to CF longevity. I don't get upset when people express their surprise at my age, or the way I look when they find out I have CF. I take it as a compliment regarding luck, and me doing something right. Those without close ties to CF, that have heard of CF, just heard it kills young people. So I wouldn't get bent if they said "Oh my god you have CF? You're 37 years old?!? Wow you look so good!". I just say thanks, and remember why I bust my ass every day to take care of myself and keep myself one step ahead of this disease.
 
F

Faust

New member
It can be a big crap shoot longevity wise. No one knows how long each of us have. No matter what though, regardless how long you have here, doing your best will always equal the most possible time you will be able to achieve. Mutations, compliance, environment, support, lifestyle, diet, education, and flat out luck all contribute so heavily to CF longevity. I don't get upset when people express their surprise at my age, or the way I look when they find out I have CF. I take it as a compliment regarding luck, and me doing something right. Those without close ties to CF, that have heard of CF, just heard it kills young people. So I wouldn't get bent if they said "Oh my god you have CF? You're 37 years old?!? Wow you look so good!". I just say thanks, and remember why I bust my ass every day to take care of myself and keep myself one step ahead of this disease.
 
F

Faust

New member
It can be a big crap shoot longevity wise. No one knows how long each of us have. No matter what though, regardless how long you have here, doing your best will always equal the most possible time you will be able to achieve. Mutations, compliance, environment, support, lifestyle, diet, education, and flat out luck all contribute so heavily to CF longevity. I don't get upset when people express their surprise at my age, or the way I look when they find out I have CF. I take it as a compliment regarding luck, and me doing something right. Those without close ties to CF, that have heard of CF, just heard it kills young people. So I wouldn't get bent if they said "Oh my god you have CF? You're 37 years old?!? Wow you look so good!". I just say thanks, and remember why I bust my ass every day to take care of myself and keep myself one step ahead of this disease.
<br />
 
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