So When Do We Tell Our Friends About Our CF?

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Kristen

New member
I have always been very open about it. I am a very open person (many would say to open <img src="i/expressions/face-icon-small-wink.gif" border="0">, and I believed that it raised CF awareness. I also have the attitude that CF doesn't define me, and I usually tell people "I have Cystic Fibrosis. It's a lung disease. If you Google it, you will think I am about to die, but that's not true. I have a really mild case, I just need to make sure I take care of myself" and sometimes I'll explain about 45 minutes, 2x a day of nebs and how I HAVE to work out and get enough sleep.

It did burn me once, though. At my last job, I had to travel to another office to work on a project. I came down with pneumonia and ended up in the hospital while I was there (that was only the 2nd time in my life in the hospital). I explained my CF to the people I was working with. After that, one of my coworkers heard a manager say that I was "an unreliable engineer because I have CF." Now I am a little more reserved about it with coworkers, but now I also work for the government, where they are much, much, much more understanding about health issues and, if something like that happened, there would be hell to pay to the person who said that.
 
K

Kristen

New member
I have always been very open about it. I am a very open person (many would say to open <img src="i/expressions/face-icon-small-wink.gif" border="0">, and I believed that it raised CF awareness. I also have the attitude that CF doesn't define me, and I usually tell people "I have Cystic Fibrosis. It's a lung disease. If you Google it, you will think I am about to die, but that's not true. I have a really mild case, I just need to make sure I take care of myself" and sometimes I'll explain about 45 minutes, 2x a day of nebs and how I HAVE to work out and get enough sleep.

It did burn me once, though. At my last job, I had to travel to another office to work on a project. I came down with pneumonia and ended up in the hospital while I was there (that was only the 2nd time in my life in the hospital). I explained my CF to the people I was working with. After that, one of my coworkers heard a manager say that I was "an unreliable engineer because I have CF." Now I am a little more reserved about it with coworkers, but now I also work for the government, where they are much, much, much more understanding about health issues and, if something like that happened, there would be hell to pay to the person who said that.
 
K

Kristen

New member
I have always been very open about it. I am a very open person (many would say to open <img src="i/expressions/face-icon-small-wink.gif" border="0">, and I believed that it raised CF awareness. I also have the attitude that CF doesn't define me, and I usually tell people "I have Cystic Fibrosis. It's a lung disease. If you Google it, you will think I am about to die, but that's not true. I have a really mild case, I just need to make sure I take care of myself" and sometimes I'll explain about 45 minutes, 2x a day of nebs and how I HAVE to work out and get enough sleep.

It did burn me once, though. At my last job, I had to travel to another office to work on a project. I came down with pneumonia and ended up in the hospital while I was there (that was only the 2nd time in my life in the hospital). I explained my CF to the people I was working with. After that, one of my coworkers heard a manager say that I was "an unreliable engineer because I have CF." Now I am a little more reserved about it with coworkers, but now I also work for the government, where they are much, much, much more understanding about health issues and, if something like that happened, there would be hell to pay to the person who said that.
 
K

Kristen

New member
I have always been very open about it. I am a very open person (many would say to open <img src="i/expressions/face-icon-small-wink.gif" border="0">, and I believed that it raised CF awareness. I also have the attitude that CF doesn't define me, and I usually tell people "I have Cystic Fibrosis. It's a lung disease. If you Google it, you will think I am about to die, but that's not true. I have a really mild case, I just need to make sure I take care of myself" and sometimes I'll explain about 45 minutes, 2x a day of nebs and how I HAVE to work out and get enough sleep.

It did burn me once, though. At my last job, I had to travel to another office to work on a project. I came down with pneumonia and ended up in the hospital while I was there (that was only the 2nd time in my life in the hospital). I explained my CF to the people I was working with. After that, one of my coworkers heard a manager say that I was "an unreliable engineer because I have CF." Now I am a little more reserved about it with coworkers, but now I also work for the government, where they are much, much, much more understanding about health issues and, if something like that happened, there would be hell to pay to the person who said that.
 
K

Kristen

New member
I have always been very open about it. I am a very open person (many would say to open <img src="i/expressions/face-icon-small-wink.gif" border="0">, and I believed that it raised CF awareness. I also have the attitude that CF doesn't define me, and I usually tell people "I have Cystic Fibrosis. It's a lung disease. If you Google it, you will think I am about to die, but that's not true. I have a really mild case, I just need to make sure I take care of myself" and sometimes I'll explain about 45 minutes, 2x a day of nebs and how I HAVE to work out and get enough sleep.
<br />
<br />It did burn me once, though. At my last job, I had to travel to another office to work on a project. I came down with pneumonia and ended up in the hospital while I was there (that was only the 2nd time in my life in the hospital). I explained my CF to the people I was working with. After that, one of my coworkers heard a manager say that I was "an unreliable engineer because I have CF." Now I am a little more reserved about it with coworkers, but now I also work for the government, where they are much, much, much more understanding about health issues and, if something like that happened, there would be hell to pay to the person who said that.
 
T

Transplantmommy

New member
My answer is pretty short and simple for me. I have never hidden the fact that I have CF and I don't care who knows about it. It's a part of me that I have lived with my whole life and I have met a lot of great people because of it. Before the transplants, if someone asked me what was wrong, I would tell them that I have CF and if they didn't know what it was, I explained it. We are always saying that people need to be more educated about it, so that's what I do, educate people by letting them know that that's what I have.
 
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Transplantmommy

New member
My answer is pretty short and simple for me. I have never hidden the fact that I have CF and I don't care who knows about it. It's a part of me that I have lived with my whole life and I have met a lot of great people because of it. Before the transplants, if someone asked me what was wrong, I would tell them that I have CF and if they didn't know what it was, I explained it. We are always saying that people need to be more educated about it, so that's what I do, educate people by letting them know that that's what I have.
 
T

Transplantmommy

New member
My answer is pretty short and simple for me. I have never hidden the fact that I have CF and I don't care who knows about it. It's a part of me that I have lived with my whole life and I have met a lot of great people because of it. Before the transplants, if someone asked me what was wrong, I would tell them that I have CF and if they didn't know what it was, I explained it. We are always saying that people need to be more educated about it, so that's what I do, educate people by letting them know that that's what I have.
 
T

Transplantmommy

New member
My answer is pretty short and simple for me. I have never hidden the fact that I have CF and I don't care who knows about it. It's a part of me that I have lived with my whole life and I have met a lot of great people because of it. Before the transplants, if someone asked me what was wrong, I would tell them that I have CF and if they didn't know what it was, I explained it. We are always saying that people need to be more educated about it, so that's what I do, educate people by letting them know that that's what I have.
 
T

Transplantmommy

New member
My answer is pretty short and simple for me. I have never hidden the fact that I have CF and I don't care who knows about it. It's a part of me that I have lived with my whole life and I have met a lot of great people because of it. Before the transplants, if someone asked me what was wrong, I would tell them that I have CF and if they didn't know what it was, I explained it. We are always saying that people need to be more educated about it, so that's what I do, educate people by letting them know that that's what I have.
 
R

RebekahsMom

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

Teaching middle school, for example, some of them can be so judgemental with their peers.</end quote></div>

Kids can be cruel at any age, so my daughter talks about her CF (as well as she can being just 5) because I have talked to her so much about it. We are in a small town and won't move away due to her CF. The kids she goes to kindergarten with in the fall will be the majority of the kids she graduates high school with at 18.

If she's going to catch crap from other kids about having to go to the nurse's office for her medicine and breathing tx, I would rather her have to just go through it once in her life instead of now, then when going to middle school, and then again in high school.

Sometime during her kindergarten year I am going to take her vest to school so the kids in her grade can see just a small part of what she has to do every day.
 
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RebekahsMom

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

Teaching middle school, for example, some of them can be so judgemental with their peers.</end quote></div>

Kids can be cruel at any age, so my daughter talks about her CF (as well as she can being just 5) because I have talked to her so much about it. We are in a small town and won't move away due to her CF. The kids she goes to kindergarten with in the fall will be the majority of the kids she graduates high school with at 18.

If she's going to catch crap from other kids about having to go to the nurse's office for her medicine and breathing tx, I would rather her have to just go through it once in her life instead of now, then when going to middle school, and then again in high school.

Sometime during her kindergarten year I am going to take her vest to school so the kids in her grade can see just a small part of what she has to do every day.
 
R

RebekahsMom

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

Teaching middle school, for example, some of them can be so judgemental with their peers.</end quote></div>

Kids can be cruel at any age, so my daughter talks about her CF (as well as she can being just 5) because I have talked to her so much about it. We are in a small town and won't move away due to her CF. The kids she goes to kindergarten with in the fall will be the majority of the kids she graduates high school with at 18.

If she's going to catch crap from other kids about having to go to the nurse's office for her medicine and breathing tx, I would rather her have to just go through it once in her life instead of now, then when going to middle school, and then again in high school.

Sometime during her kindergarten year I am going to take her vest to school so the kids in her grade can see just a small part of what she has to do every day.
 
R

RebekahsMom

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

Teaching middle school, for example, some of them can be so judgemental with their peers.</end quote>

Kids can be cruel at any age, so my daughter talks about her CF (as well as she can being just 5) because I have talked to her so much about it. We are in a small town and won't move away due to her CF. The kids she goes to kindergarten with in the fall will be the majority of the kids she graduates high school with at 18.

If she's going to catch crap from other kids about having to go to the nurse's office for her medicine and breathing tx, I would rather her have to just go through it once in her life instead of now, then when going to middle school, and then again in high school.

Sometime during her kindergarten year I am going to take her vest to school so the kids in her grade can see just a small part of what she has to do every day.
 
R

RebekahsMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jeana</b></i>
<br />
<br />Teaching middle school, for example, some of them can be so judgemental with their peers.</end quote>
<br />
<br />Kids can be cruel at any age, so my daughter talks about her CF (as well as she can being just 5) because I have talked to her so much about it. We are in a small town and won't move away due to her CF. The kids she goes to kindergarten with in the fall will be the majority of the kids she graduates high school with at 18.
<br />
<br />If she's going to catch crap from other kids about having to go to the nurse's office for her medicine and breathing tx, I would rather her have to just go through it once in her life instead of now, then when going to middle school, and then again in high school.
<br />
<br />Sometime during her kindergarten year I am going to take her vest to school so the kids in her grade can see just a small part of what she has to do every day.
 
M

MicheleGazelle

New member
If it's someone I consider a real friend, I usually tell them. If it's someone I consider to be just an acquaintance, I usually don't. Most co-workers at work don't know. Co-workers I consider to be friends do know. Some folks at work have been told on a 'need to know' basis. In one case, someone who was being innocently too curious in a loud public way was informed privately and told that I don't care who knows but I don't need it to come out in some "train wreck in the hallway" manner and I don't need 30 people emailing me every time I sneeze. They have been very good about respecting my privacy now that I am not some puzzle nagging at them. So I tell if I feel we are close and I tell if I feel that they need to know for some practical reason. Otherwise, I generally stick to descriptive explanations without the label. But I am fairly healthy right now so it's less obvious than it used to be that I have a serious health issue. That might not work so well if I had a chronic cough or something like that.
 
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MicheleGazelle

New member
If it's someone I consider a real friend, I usually tell them. If it's someone I consider to be just an acquaintance, I usually don't. Most co-workers at work don't know. Co-workers I consider to be friends do know. Some folks at work have been told on a 'need to know' basis. In one case, someone who was being innocently too curious in a loud public way was informed privately and told that I don't care who knows but I don't need it to come out in some "train wreck in the hallway" manner and I don't need 30 people emailing me every time I sneeze. They have been very good about respecting my privacy now that I am not some puzzle nagging at them. So I tell if I feel we are close and I tell if I feel that they need to know for some practical reason. Otherwise, I generally stick to descriptive explanations without the label. But I am fairly healthy right now so it's less obvious than it used to be that I have a serious health issue. That might not work so well if I had a chronic cough or something like that.
 
M

MicheleGazelle

New member
If it's someone I consider a real friend, I usually tell them. If it's someone I consider to be just an acquaintance, I usually don't. Most co-workers at work don't know. Co-workers I consider to be friends do know. Some folks at work have been told on a 'need to know' basis. In one case, someone who was being innocently too curious in a loud public way was informed privately and told that I don't care who knows but I don't need it to come out in some "train wreck in the hallway" manner and I don't need 30 people emailing me every time I sneeze. They have been very good about respecting my privacy now that I am not some puzzle nagging at them. So I tell if I feel we are close and I tell if I feel that they need to know for some practical reason. Otherwise, I generally stick to descriptive explanations without the label. But I am fairly healthy right now so it's less obvious than it used to be that I have a serious health issue. That might not work so well if I had a chronic cough or something like that.
 
M

MicheleGazelle

New member
If it's someone I consider a real friend, I usually tell them. If it's someone I consider to be just an acquaintance, I usually don't. Most co-workers at work don't know. Co-workers I consider to be friends do know. Some folks at work have been told on a 'need to know' basis. In one case, someone who was being innocently too curious in a loud public way was informed privately and told that I don't care who knows but I don't need it to come out in some "train wreck in the hallway" manner and I don't need 30 people emailing me every time I sneeze. They have been very good about respecting my privacy now that I am not some puzzle nagging at them. So I tell if I feel we are close and I tell if I feel that they need to know for some practical reason. Otherwise, I generally stick to descriptive explanations without the label. But I am fairly healthy right now so it's less obvious than it used to be that I have a serious health issue. That might not work so well if I had a chronic cough or something like that.
 
M

MicheleGazelle

New member
If it's someone I consider a real friend, I usually tell them. If it's someone I consider to be just an acquaintance, I usually don't. Most co-workers at work don't know. Co-workers I consider to be friends do know. Some folks at work have been told on a 'need to know' basis. In one case, someone who was being innocently too curious in a loud public way was informed privately and told that I don't care who knows but I don't need it to come out in some "train wreck in the hallway" manner and I don't need 30 people emailing me every time I sneeze. They have been very good about respecting my privacy now that I am not some puzzle nagging at them. So I tell if I feel we are close and I tell if I feel that they need to know for some practical reason. Otherwise, I generally stick to descriptive explanations without the label. But I am fairly healthy right now so it's less obvious than it used to be that I have a serious health issue. That might not work so well if I had a chronic cough or something like that.
 
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