How open are you about CF?

[b12bc]

This has always been a topic of great struggle in my life. Contrary to many peoples' beliefs, I am not ashamed of having CF, but it is not something that many people know I have. Outside of a close circle of friends, I admittedly "hide" it to some extent. I consider it something fairly personal and I find that it changes the way people look at me, especially those who don't know me well. I don't want to be seen as "diseased" or "weak". Who would?

On the other hand, I love the idea of promoting awareness, but I just don't want it to be MY life that they're "aware" of. Fortunately I have a very mild case and have not had major hospitalizations beyond yearly tune-ups and maintenance visits so it isn't so hard to keep private, but I know that it won't always be so easy. Where do you all stand on the issue? I'm obviously comfortable talking about it in an anonymous situation like this, especially with other CFers, but it isn't quite so comfortable with people who I interact with on a daily basis.

 

[b12bc]

This has always been a topic of great struggle in my life. Contrary to many peoples' beliefs, I am not ashamed of having CF, but it is not something that many people know I have. Outside of a close circle of friends, I admittedly "hide" it to some extent. I consider it something fairly personal and I find that it changes the way people look at me, especially those who don't know me well. I don't want to be seen as "diseased" or "weak". Who would?

On the other hand, I love the idea of promoting awareness, but I just don't want it to be MY life that they're "aware" of. Fortunately I have a very mild case and have not had major hospitalizations beyond yearly tune-ups and maintenance visits so it isn't so hard to keep private, but I know that it won't always be so easy. Where do you all stand on the issue? I'm obviously comfortable talking about it in an anonymous situation like this, especially with other CFers, but it isn't quite so comfortable with people who I interact with on a daily basis.

 

[b12bc]

This has always been a topic of great struggle in my life. Contrary to many peoples' beliefs, I am not ashamed of having CF, but it is not something that many people know I have. Outside of a close circle of friends, I admittedly "hide" it to some extent. I consider it something fairly personal and I find that it changes the way people look at me, especially those who don't know me well. I don't want to be seen as "diseased" or "weak". Who would?
<br />
<br />On the other hand, I love the idea of promoting awareness, but I just don't want it to be MY life that they're "aware" of. Fortunately I have a very mild case and have not had major hospitalizations beyond yearly tune-ups and maintenance visits so it isn't so hard to keep private, but I know that it won't always be so easy. Where do you all stand on the issue? I'm obviously comfortable talking about it in an anonymous situation like this, especially with other CFers, but it isn't quite so comfortable with people who I interact with on a daily basis.

 

[sawyer]

I've never been open about my CF. No one ever knew except my immediate family and very close friends. When I was younger it was easy to hide because I stayed quite well. Even through high school I would plan to have IV's on the school holidays so that no one would ever have to know.
When I started uni my health started declining and I started having to take time off. My room mate knew and was great about it and I was in hospital once and she brought some friends in to visit. They were all so amazing that it made me wonder why I ever hid it.
I seem to find that rather than thinking I'm weak or diseased people seem to think I'm strong. They're surprised that I can be in hopsital one day and back at class the next. I guess it's different for all people, and I may have just been lucky with my experience, but telling people has meant people are much more understanding when I can't do anything or do need to ask for help. I'm not saying I broadcast the fact I have CF to the world but I do let most people know now IF it comes up on coversation or once we're friends.
I guess if I wasn't unwell and not needing to take time off from school or work I may still be secretive about it but because my circumstances have changed so has my attitude.

 

[sawyer]

I've never been open about my CF. No one ever knew except my immediate family and very close friends. When I was younger it was easy to hide because I stayed quite well. Even through high school I would plan to have IV's on the school holidays so that no one would ever have to know.
When I started uni my health started declining and I started having to take time off. My room mate knew and was great about it and I was in hospital once and she brought some friends in to visit. They were all so amazing that it made me wonder why I ever hid it.
I seem to find that rather than thinking I'm weak or diseased people seem to think I'm strong. They're surprised that I can be in hopsital one day and back at class the next. I guess it's different for all people, and I may have just been lucky with my experience, but telling people has meant people are much more understanding when I can't do anything or do need to ask for help. I'm not saying I broadcast the fact I have CF to the world but I do let most people know now IF it comes up on coversation or once we're friends.
I guess if I wasn't unwell and not needing to take time off from school or work I may still be secretive about it but because my circumstances have changed so has my attitude.

 

[sawyer]

I've never been open about my CF. No one ever knew except my immediate family and very close friends. When I was younger it was easy to hide because I stayed quite well. Even through high school I would plan to have IV's on the school holidays so that no one would ever have to know.
<br />When I started uni my health started declining and I started having to take time off. My room mate knew and was great about it and I was in hospital once and she brought some friends in to visit. They were all so amazing that it made me wonder why I ever hid it.
<br />I seem to find that rather than thinking I'm weak or diseased people seem to think I'm strong. They're surprised that I can be in hopsital one day and back at class the next. I guess it's different for all people, and I may have just been lucky with my experience, but telling people has meant people are much more understanding when I can't do anything or do need to ask for help. I'm not saying I broadcast the fact I have CF to the world but I do let most people know now IF it comes up on coversation or once we're friends.
<br />I guess if I wasn't unwell and not needing to take time off from school or work I may still be secretive about it but because my circumstances have changed so has my attitude.

 

[chrissyd]

I'm pretty open about it. I wasn't diagnosed until I was 21, so usually when I see people from school and the ask--"How's that cough" or "Are you feeling any better these days"--I can tell them I have CF. I'm the educate everyone I can about it type, I guess. Since CF is progressive I can't really keep it a secret.

I say to each his own, do what is comfortable for you. I agree when you say you don't want to be seen as diseased or weak...but my counsilor pointed out that it is only me who sees myself that way. I do feel very supported by the people in my life, and have no regrets about being so open about it. I do know that some people who have been honest have not gotten a good reaction and do not get the same level of support I get. (I still have people who say things like, "Chrissy's CF isn't like normal CF" and other comments that let me know they do not understand.)

I don't wear a sign or anything, or introduce myself as Chrissy with CF; but I don't shy away from talking about it.


<img src="i/expressions/rose.gif" border="0">

 

[chrissyd]

I'm pretty open about it. I wasn't diagnosed until I was 21, so usually when I see people from school and the ask--"How's that cough" or "Are you feeling any better these days"--I can tell them I have CF. I'm the educate everyone I can about it type, I guess. Since CF is progressive I can't really keep it a secret.

I say to each his own, do what is comfortable for you. I agree when you say you don't want to be seen as diseased or weak...but my counsilor pointed out that it is only me who sees myself that way. I do feel very supported by the people in my life, and have no regrets about being so open about it. I do know that some people who have been honest have not gotten a good reaction and do not get the same level of support I get. (I still have people who say things like, "Chrissy's CF isn't like normal CF" and other comments that let me know they do not understand.)

I don't wear a sign or anything, or introduce myself as Chrissy with CF; but I don't shy away from talking about it.


<img src="i/expressions/rose.gif" border="0">

 

[chrissyd]

I'm pretty open about it. I wasn't diagnosed until I was 21, so usually when I see people from school and the ask--"How's that cough" or "Are you feeling any better these days"--I can tell them I have CF. I'm the educate everyone I can about it type, I guess. Since CF is progressive I can't really keep it a secret.
<br />
<br />I say to each his own, do what is comfortable for you. I agree when you say you don't want to be seen as diseased or weak...but my counsilor pointed out that it is only me who sees myself that way. I do feel very supported by the people in my life, and have no regrets about being so open about it. I do know that some people who have been honest have not gotten a good reaction and do not get the same level of support I get. (I still have people who say things like, "Chrissy's CF isn't like normal CF" and other comments that let me know they do not understand.)
<br />
<br />I don't wear a sign or anything, or introduce myself as Chrissy with CF; but I don't shy away from talking about it.
<br />
<br />
<br /><img src="i/expressions/rose.gif" border="0">

 

[colinmaydahl]

I tell just about everybody. I have not seen any negatives on not keeping it a secret. People will only make it a big deal about it if You do. It is something we all live with, it will help you with Your relationships in life if You are open with who You are. If somebody does juge me, why would I want them in my life. CF does not define us. It is a part of who we are but not the only part. I have the best friends in the world, they are understanding and don't think any less of me. Sometimes they are conserned with how I am doing, but thats what friends do. I worry if somebody I know get's sick because I want them to get better, because I am there friend. They might worry about You but only because they love You. I don't think Your friends will see You much different, if anybody has a problem with it You need to ask Yourself how good of a friend are they.

Take control of Your life.

Colin 28m w/CF

 

[colinmaydahl]

I tell just about everybody. I have not seen any negatives on not keeping it a secret. People will only make it a big deal about it if You do. It is something we all live with, it will help you with Your relationships in life if You are open with who You are. If somebody does juge me, why would I want them in my life. CF does not define us. It is a part of who we are but not the only part. I have the best friends in the world, they are understanding and don't think any less of me. Sometimes they are conserned with how I am doing, but thats what friends do. I worry if somebody I know get's sick because I want them to get better, because I am there friend. They might worry about You but only because they love You. I don't think Your friends will see You much different, if anybody has a problem with it You need to ask Yourself how good of a friend are they.

Take control of Your life.

Colin 28m w/CF

 

[colinmaydahl]

I tell just about everybody. I have not seen any negatives on not keeping it a secret. People will only make it a big deal about it if You do. It is something we all live with, it will help you with Your relationships in life if You are open with who You are. If somebody does juge me, why would I want them in my life. CF does not define us. It is a part of who we are but not the only part. I have the best friends in the world, they are understanding and don't think any less of me. Sometimes they are conserned with how I am doing, but thats what friends do. I worry if somebody I know get's sick because I want them to get better, because I am there friend. They might worry about You but only because they love You. I don't think Your friends will see You much different, if anybody has a problem with it You need to ask Yourself how good of a friend are they.
<br />
<br />Take control of Your life.
<br />
<br />Colin 28m w/CF

 

[zaj1139]

Wow was wondering about that myself as I am in company with a lot of people and have my grandchild with me. I practically tell everyone who comments on him. I get a lot of "he's so cute" or "he's so happy-funny etc". Once that happens I usually open my big mouth and say ya you would never know he has CF - then I get the questions. My husband and I love telling people what we know and urge them to websites. We always end it with givng one of our business cards that we had made up for Jaden which has the Great Strides websit for contributions.

Now I am wondering if it is my right to even be telling Jaden's business to others as he is only 2 1/2.

Was at a party the other day and another lady overheard me talking, she came up and asked if I said CF - her brother died at 28 but was born in 63 she seemed really interested in talking about it and her brother and how far the meds have come since her brother had passed.

Here's hoping that when Jaden gets older he will not resent his Mem getting the word out but I'm proud of him as he is such a trooper! Love to all CFer's you are an inspiration to anyone who feels the slightest need to complain about anything <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[zaj1139]

Wow was wondering about that myself as I am in company with a lot of people and have my grandchild with me. I practically tell everyone who comments on him. I get a lot of "he's so cute" or "he's so happy-funny etc". Once that happens I usually open my big mouth and say ya you would never know he has CF - then I get the questions. My husband and I love telling people what we know and urge them to websites. We always end it with givng one of our business cards that we had made up for Jaden which has the Great Strides websit for contributions.

Now I am wondering if it is my right to even be telling Jaden's business to others as he is only 2 1/2.

Was at a party the other day and another lady overheard me talking, she came up and asked if I said CF - her brother died at 28 but was born in 63 she seemed really interested in talking about it and her brother and how far the meds have come since her brother had passed.

Here's hoping that when Jaden gets older he will not resent his Mem getting the word out but I'm proud of him as he is such a trooper! Love to all CFer's you are an inspiration to anyone who feels the slightest need to complain about anything <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[zaj1139]

Wow was wondering about that myself as I am in company with a lot of people and have my grandchild with me. I practically tell everyone who comments on him. I get a lot of "he's so cute" or "he's so happy-funny etc". Once that happens I usually open my big mouth and say ya you would never know he has CF - then I get the questions. My husband and I love telling people what we know and urge them to websites. We always end it with givng one of our business cards that we had made up for Jaden which has the Great Strides websit for contributions.
<br />
<br />Now I am wondering if it is my right to even be telling Jaden's business to others as he is only 2 1/2.
<br />
<br />Was at a party the other day and another lady overheard me talking, she came up and asked if I said CF - her brother died at 28 but was born in 63 she seemed really interested in talking about it and her brother and how far the meds have come since her brother had passed.
<br />
<br />Here's hoping that when Jaden gets older he will not resent his Mem getting the word out but I'm proud of him as he is such a trooper! Love to all CFer's you are an inspiration to anyone who feels the slightest need to complain about anything <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[RitaLSonnenberg]

When I have a coughing jag and people look at like I have three heads, I just tell them I have Cystic Fibrosis. Seems like no one ever knows what it is, so I try to educate them, but usually to no avail. Some people associate it to be much like asthma, and I am sorry, but it isn't. I am not ashamed of CF and wear shirts that say END CF that i got of Cafe Press. I just wish more people were aware of it. What really ticks me off is the fact that I have a placard to park in a handicap spot because I my lungs basically suck!!! and people look at me when I get out of my vehicle like - why does she have a placard. The few times that someone has actually said something, I usually just say - Hey, I am on the lung transplant list - are you? and walk away. That is what really burns my crawl. Sorry, i got off the subject.

 

[RitaLSonnenberg]

When I have a coughing jag and people look at like I have three heads, I just tell them I have Cystic Fibrosis. Seems like no one ever knows what it is, so I try to educate them, but usually to no avail. Some people associate it to be much like asthma, and I am sorry, but it isn't. I am not ashamed of CF and wear shirts that say END CF that i got of Cafe Press. I just wish more people were aware of it. What really ticks me off is the fact that I have a placard to park in a handicap spot because I my lungs basically suck!!! and people look at me when I get out of my vehicle like - why does she have a placard. The few times that someone has actually said something, I usually just say - Hey, I am on the lung transplant list - are you? and walk away. That is what really burns my crawl. Sorry, i got off the subject.

 

[RitaLSonnenberg]

When I have a coughing jag and people look at like I have three heads, I just tell them I have Cystic Fibrosis. Seems like no one ever knows what it is, so I try to educate them, but usually to no avail. Some people associate it to be much like asthma, and I am sorry, but it isn't. I am not ashamed of CF and wear shirts that say END CF that i got of Cafe Press. I just wish more people were aware of it. What really ticks me off is the fact that I have a placard to park in a handicap spot because I my lungs basically suck!!! and people look at me when I get out of my vehicle like - why does she have a placard. The few times that someone has actually said something, I usually just say - Hey, I am on the lung transplant list - are you? and walk away. That is what really burns my crawl. Sorry, i got off the subject.

 

[Transplantmommy]

I'm very open about my CF and always have been. The only time I have not been open about it is during a job interview. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Transplantmommy]

I'm very open about my CF and always have been. The only time I have not been open about it is during a job interview. <img src="i/expressions/face-icon-small-smile.gif" border="0">