So When Do We Tell Our Friends About Our CF?

[RonnieSharpe]

I just posted an email exchange on my blog dealing with the subject of making our friends aware of Cystic Fibrosis. I was hoping to get your thought and feelings on this topic and if you have any specific "strategies" when doing so...Thank you

You can find my exchange here on my blogs or follow the link below:

<a target=_blank class=ftalternatingbarlinklarge href="http://runsickboyrun.blogspot.com/2009/07/so-when-do-we-tell-our-friends-about-cf.html">http://runsickboyrun.blogspot....-friends-about-cf.html</a>

 

[RonnieSharpe]

I just posted an email exchange on my blog dealing with the subject of making our friends aware of Cystic Fibrosis. I was hoping to get your thought and feelings on this topic and if you have any specific "strategies" when doing so...Thank you

You can find my exchange here on my blogs or follow the link below:

<a target=_blank class=ftalternatingbarlinklarge href="http://runsickboyrun.blogspot.com/2009/07/so-when-do-we-tell-our-friends-about-cf.html">http://runsickboyrun.blogspot....-friends-about-cf.html</a>

 

[RonnieSharpe]

I just posted an email exchange on my blog dealing with the subject of making our friends aware of Cystic Fibrosis. I was hoping to get your thought and feelings on this topic and if you have any specific "strategies" when doing so...Thank you

You can find my exchange here on my blogs or follow the link below:

<a target=_blank class=ftalternatingbarlinklarge href="http://runsickboyrun.blogspot.com/2009/07/so-when-do-we-tell-our-friends-about-cf.html">http://runsickboyrun.blogspot....-friends-about-cf.html</a>

 

[RonnieSharpe]

I just posted an email exchange on my blog dealing with the subject of making our friends aware of Cystic Fibrosis. I was hoping to get your thought and feelings on this topic and if you have any specific "strategies" when doing so...Thank you

You can find my exchange here on my blogs or follow the link below:

<a target=_blank class=ftalternatingbarlinklarge href="http://runsickboyrun.blogspot.com/2009/07/so-when-do-we-tell-our-friends-about-cf.html">http://runsickboyrun.blogspot....-friends-about-cf.html</a>

 

[RonnieSharpe]

I just posted an email exchange on my blog dealing with the subject of making our friends aware of Cystic Fibrosis. I was hoping to get your thought and feelings on this topic and if you have any specific "strategies" when doing so...Thank you
<br />
<br />You can find my exchange here on my blogs or follow the link below:
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://runsickboyrun.blogspot.com/2009/07/so-when-do-we-tell-our-friends-about-cf.html">http://runsickboyrun.blogspot....-friends-about-cf.html</a>

 

[meggzzie]

Hmm, well I only tell friends I've known for a while, and in a way, I feel they deserve an explaination for putting up with my coughing and such and never complaining about it.

I kind of explain with something I came across in a CF newsletter years ago - it said that breathing for someone with CF is like a healthy person breathing through a straw. It helps to get the idea going, and that CF is all on the inside. I also freak out my friends with my port and PEG scars, and my menocum illious (I can't spell that) scar across my stomach.

I never really tell someone I've just met, as I wouldn;t know if they'd treat me different for having an illness. Most people in high school probably just thought I had asthma or something. People don't openly question it, and I'd rather explain to a friend on a one to one basis, and they can ask questions to try and wrap their head round it. I would say more often than not, it's been promted by a coughing fit. How lovely(!)

 

[meggzzie]

Hmm, well I only tell friends I've known for a while, and in a way, I feel they deserve an explaination for putting up with my coughing and such and never complaining about it.

I kind of explain with something I came across in a CF newsletter years ago - it said that breathing for someone with CF is like a healthy person breathing through a straw. It helps to get the idea going, and that CF is all on the inside. I also freak out my friends with my port and PEG scars, and my menocum illious (I can't spell that) scar across my stomach.

I never really tell someone I've just met, as I wouldn;t know if they'd treat me different for having an illness. Most people in high school probably just thought I had asthma or something. People don't openly question it, and I'd rather explain to a friend on a one to one basis, and they can ask questions to try and wrap their head round it. I would say more often than not, it's been promted by a coughing fit. How lovely(!)

 

[meggzzie]

Hmm, well I only tell friends I've known for a while, and in a way, I feel they deserve an explaination for putting up with my coughing and such and never complaining about it.

I kind of explain with something I came across in a CF newsletter years ago - it said that breathing for someone with CF is like a healthy person breathing through a straw. It helps to get the idea going, and that CF is all on the inside. I also freak out my friends with my port and PEG scars, and my menocum illious (I can't spell that) scar across my stomach.

I never really tell someone I've just met, as I wouldn;t know if they'd treat me different for having an illness. Most people in high school probably just thought I had asthma or something. People don't openly question it, and I'd rather explain to a friend on a one to one basis, and they can ask questions to try and wrap their head round it. I would say more often than not, it's been promted by a coughing fit. How lovely(!)

 

[meggzzie]

Hmm, well I only tell friends I've known for a while, and in a way, I feel they deserve an explaination for putting up with my coughing and such and never complaining about it.

I kind of explain with something I came across in a CF newsletter years ago - it said that breathing for someone with CF is like a healthy person breathing through a straw. It helps to get the idea going, and that CF is all on the inside. I also freak out my friends with my port and PEG scars, and my menocum illious (I can't spell that) scar across my stomach.

I never really tell someone I've just met, as I wouldn;t know if they'd treat me different for having an illness. Most people in high school probably just thought I had asthma or something. People don't openly question it, and I'd rather explain to a friend on a one to one basis, and they can ask questions to try and wrap their head round it. I would say more often than not, it's been promted by a coughing fit. How lovely(!)

 

[meggzzie]

Hmm, well I only tell friends I've known for a while, and in a way, I feel they deserve an explaination for putting up with my coughing and such and never complaining about it.
<br />
<br />I kind of explain with something I came across in a CF newsletter years ago - it said that breathing for someone with CF is like a healthy person breathing through a straw. It helps to get the idea going, and that CF is all on the inside. I also freak out my friends with my port and PEG scars, and my menocum illious (I can't spell that) scar across my stomach.
<br />
<br />I never really tell someone I've just met, as I wouldn;t know if they'd treat me different for having an illness. Most people in high school probably just thought I had asthma or something. People don't openly question it, and I'd rather explain to a friend on a one to one basis, and they can ask questions to try and wrap their head round it. I would say more often than not, it's been promted by a coughing fit. How lovely(!)

 

[marisalynn]

I agree. I try not to tell anyone unless I have known them for a while. Luckily, I don't have to take enzymes, so the subject doesn't necessarily come up during meals. I also have fairly normal lung function still, and am about an average weight, so I am not the typical "sick" person (not that people who are underweight and do have less than normal lung function are "sick people.) <img src="i/expressions/face-icon-small-wink.gif" border="0">
Usually the subject comes up after an occasional coughing fit. I am having issues right now because I have a new job as a nurse in a med/surg unit of a hospital, and I have told a few people about my CF (my direct supervisor, of course, because of the doctor's appts). I have usually felt very comfortable about telling people about my CF, but for one of the first times, I am nervous about telling some of my co-workers about it. Maybe because I work in the medical field, I don't really know.
I know I got a little off subject here, but I think the basics about telling friends about having CF have already been said: don't tell people until you are comfortable with them knowing, be open about it, not secretive, and don't let it define your character and personality. Take care everyone!

Marisa RN, 21 w/CF

 

[marisalynn]

I agree. I try not to tell anyone unless I have known them for a while. Luckily, I don't have to take enzymes, so the subject doesn't necessarily come up during meals. I also have fairly normal lung function still, and am about an average weight, so I am not the typical "sick" person (not that people who are underweight and do have less than normal lung function are "sick people.) <img src="i/expressions/face-icon-small-wink.gif" border="0">
Usually the subject comes up after an occasional coughing fit. I am having issues right now because I have a new job as a nurse in a med/surg unit of a hospital, and I have told a few people about my CF (my direct supervisor, of course, because of the doctor's appts). I have usually felt very comfortable about telling people about my CF, but for one of the first times, I am nervous about telling some of my co-workers about it. Maybe because I work in the medical field, I don't really know.
I know I got a little off subject here, but I think the basics about telling friends about having CF have already been said: don't tell people until you are comfortable with them knowing, be open about it, not secretive, and don't let it define your character and personality. Take care everyone!

Marisa RN, 21 w/CF

 

[marisalynn]

I agree. I try not to tell anyone unless I have known them for a while. Luckily, I don't have to take enzymes, so the subject doesn't necessarily come up during meals. I also have fairly normal lung function still, and am about an average weight, so I am not the typical "sick" person (not that people who are underweight and do have less than normal lung function are "sick people.) <img src="i/expressions/face-icon-small-wink.gif" border="0">
Usually the subject comes up after an occasional coughing fit. I am having issues right now because I have a new job as a nurse in a med/surg unit of a hospital, and I have told a few people about my CF (my direct supervisor, of course, because of the doctor's appts). I have usually felt very comfortable about telling people about my CF, but for one of the first times, I am nervous about telling some of my co-workers about it. Maybe because I work in the medical field, I don't really know.
I know I got a little off subject here, but I think the basics about telling friends about having CF have already been said: don't tell people until you are comfortable with them knowing, be open about it, not secretive, and don't let it define your character and personality. Take care everyone!

Marisa RN, 21 w/CF

 

[marisalynn]

I agree. I try not to tell anyone unless I have known them for a while. Luckily, I don't have to take enzymes, so the subject doesn't necessarily come up during meals. I also have fairly normal lung function still, and am about an average weight, so I am not the typical "sick" person (not that people who are underweight and do have less than normal lung function are "sick people.) <img src="i/expressions/face-icon-small-wink.gif" border="0">
Usually the subject comes up after an occasional coughing fit. I am having issues right now because I have a new job as a nurse in a med/surg unit of a hospital, and I have told a few people about my CF (my direct supervisor, of course, because of the doctor's appts). I have usually felt very comfortable about telling people about my CF, but for one of the first times, I am nervous about telling some of my co-workers about it. Maybe because I work in the medical field, I don't really know.
I know I got a little off subject here, but I think the basics about telling friends about having CF have already been said: don't tell people until you are comfortable with them knowing, be open about it, not secretive, and don't let it define your character and personality. Take care everyone!

Marisa RN, 21 w/CF

 

[marisalynn]

I agree. I try not to tell anyone unless I have known them for a while. Luckily, I don't have to take enzymes, so the subject doesn't necessarily come up during meals. I also have fairly normal lung function still, and am about an average weight, so I am not the typical "sick" person (not that people who are underweight and do have less than normal lung function are "sick people.) <img src="i/expressions/face-icon-small-wink.gif" border="0">
<br />Usually the subject comes up after an occasional coughing fit. I am having issues right now because I have a new job as a nurse in a med/surg unit of a hospital, and I have told a few people about my CF (my direct supervisor, of course, because of the doctor's appts). I have usually felt very comfortable about telling people about my CF, but for one of the first times, I am nervous about telling some of my co-workers about it. Maybe because I work in the medical field, I don't really know.
<br />I know I got a little off subject here, but I think the basics about telling friends about having CF have already been said: don't tell people until you are comfortable with them knowing, be open about it, not secretive, and don't let it define your character and personality. Take care everyone!
<br />
<br />Marisa RN, 21 w/CF

 

[jdubbs]

I'm more secretive, which probably isn't for the best. I have some friends I've known for more than 10 years who don't know. Or at least, I didn't tell them. I suppose the word gets out eventually if friends overlap. I take enzymes before I leave the house, in the bathroom, or if i'm really in a pickle "my pancreas doesn't work very well." Usually they don't ask anything beyond that. If I have second tier friends over, I hide all the medical supplies. I have a few really good friends who know, who probably inform second degree friends for me. I've been debating informing more people. They probably know somethign is up, if not the name of the affliction. The "hiding" business is becoming more trouble than it's worth.

 

[jdubbs]

I'm more secretive, which probably isn't for the best. I have some friends I've known for more than 10 years who don't know. Or at least, I didn't tell them. I suppose the word gets out eventually if friends overlap. I take enzymes before I leave the house, in the bathroom, or if i'm really in a pickle "my pancreas doesn't work very well." Usually they don't ask anything beyond that. If I have second tier friends over, I hide all the medical supplies. I have a few really good friends who know, who probably inform second degree friends for me. I've been debating informing more people. They probably know somethign is up, if not the name of the affliction. The "hiding" business is becoming more trouble than it's worth.

 

[jdubbs]

I'm more secretive, which probably isn't for the best. I have some friends I've known for more than 10 years who don't know. Or at least, I didn't tell them. I suppose the word gets out eventually if friends overlap. I take enzymes before I leave the house, in the bathroom, or if i'm really in a pickle "my pancreas doesn't work very well." Usually they don't ask anything beyond that. If I have second tier friends over, I hide all the medical supplies. I have a few really good friends who know, who probably inform second degree friends for me. I've been debating informing more people. They probably know somethign is up, if not the name of the affliction. The "hiding" business is becoming more trouble than it's worth.

 

[jdubbs]

I'm more secretive, which probably isn't for the best. I have some friends I've known for more than 10 years who don't know. Or at least, I didn't tell them. I suppose the word gets out eventually if friends overlap. I take enzymes before I leave the house, in the bathroom, or if i'm really in a pickle "my pancreas doesn't work very well." Usually they don't ask anything beyond that. If I have second tier friends over, I hide all the medical supplies. I have a few really good friends who know, who probably inform second degree friends for me. I've been debating informing more people. They probably know somethign is up, if not the name of the affliction. The "hiding" business is becoming more trouble than it's worth.

 

[jdubbs]

I'm more secretive, which probably isn't for the best. I have some friends I've known for more than 10 years who don't know. Or at least, I didn't tell them. I suppose the word gets out eventually if friends overlap. I take enzymes before I leave the house, in the bathroom, or if i'm really in a pickle "my pancreas doesn't work very well." Usually they don't ask anything beyond that. If I have second tier friends over, I hide all the medical supplies. I have a few really good friends who know, who probably inform second degree friends for me. I've been debating informing more people. They probably know somethign is up, if not the name of the affliction. The "hiding" business is becoming more trouble than it's worth.