How do you feel when SOME ONE else tells others you have CF?

[Kelli]

Thank you everyone. I do feel validated now. Sometimes I think I fly off the handle (which I do) but I feel that I had every right to on this one.

I am all about sharing my CF story with others, I'm able to witness how God has helped me, etc. and I think that is great. BUT I don't want others telling complete strangers (who yes will turn around and strike). I want to be the one to choose who and when I tell.

I guess it goes back to the fact that I know nothing of this woman and I don't want her knowing about me. I feel hurt that my husband would tell something so personal to some one I don't know and don't like. I will most certainly have a talk with him.

It's just such a hard issue, who to tell, who to wait to tell, who never to tell. I guess I feel like......if we were in high school and there was a bully, that he just told that bully what to pick on me about, with sideway glances and wispers. Like he went behind my back and gave her some juicy info on me. I guess I feel like it's an uneven playing field. And I think she's vicious, I don't trust her, I think she has alterior motives.

I'm just irritated with the whole thing. I guess this is the first time this has come up since we've been married. So we'll have to have a talk about it.

Thanks for all of your input. I sat here nodding my head agreeing. Thanks for reminding me I'm not alone.

<img src="i/expressions/face-icon-small-smile.gif" border="0">
KELLI

 

[Kelli]

Thank you everyone. I do feel validated now. Sometimes I think I fly off the handle (which I do) but I feel that I had every right to on this one.

I am all about sharing my CF story with others, I'm able to witness how God has helped me, etc. and I think that is great. BUT I don't want others telling complete strangers (who yes will turn around and strike). I want to be the one to choose who and when I tell.

I guess it goes back to the fact that I know nothing of this woman and I don't want her knowing about me. I feel hurt that my husband would tell something so personal to some one I don't know and don't like. I will most certainly have a talk with him.

It's just such a hard issue, who to tell, who to wait to tell, who never to tell. I guess I feel like......if we were in high school and there was a bully, that he just told that bully what to pick on me about, with sideway glances and wispers. Like he went behind my back and gave her some juicy info on me. I guess I feel like it's an uneven playing field. And I think she's vicious, I don't trust her, I think she has alterior motives.

I'm just irritated with the whole thing. I guess this is the first time this has come up since we've been married. So we'll have to have a talk about it.

Thanks for all of your input. I sat here nodding my head agreeing. Thanks for reminding me I'm not alone.

<img src="i/expressions/face-icon-small-smile.gif" border="0">
KELLI

 

[Kelli]

Thank you everyone. I do feel validated now. Sometimes I think I fly off the handle (which I do) but I feel that I had every right to on this one.

I am all about sharing my CF story with others, I'm able to witness how God has helped me, etc. and I think that is great. BUT I don't want others telling complete strangers (who yes will turn around and strike). I want to be the one to choose who and when I tell.

I guess it goes back to the fact that I know nothing of this woman and I don't want her knowing about me. I feel hurt that my husband would tell something so personal to some one I don't know and don't like. I will most certainly have a talk with him.

It's just such a hard issue, who to tell, who to wait to tell, who never to tell. I guess I feel like......if we were in high school and there was a bully, that he just told that bully what to pick on me about, with sideway glances and wispers. Like he went behind my back and gave her some juicy info on me. I guess I feel like it's an uneven playing field. And I think she's vicious, I don't trust her, I think she has alterior motives.

I'm just irritated with the whole thing. I guess this is the first time this has come up since we've been married. So we'll have to have a talk about it.

Thanks for all of your input. I sat here nodding my head agreeing. Thanks for reminding me I'm not alone.

<img src="i/expressions/face-icon-small-smile.gif" border="0">
KELLI

 

[Kelli]

Thank you everyone. I do feel validated now. Sometimes I think I fly off the handle (which I do) but I feel that I had every right to on this one.

I am all about sharing my CF story with others, I'm able to witness how God has helped me, etc. and I think that is great. BUT I don't want others telling complete strangers (who yes will turn around and strike). I want to be the one to choose who and when I tell.

I guess it goes back to the fact that I know nothing of this woman and I don't want her knowing about me. I feel hurt that my husband would tell something so personal to some one I don't know and don't like. I will most certainly have a talk with him.

It's just such a hard issue, who to tell, who to wait to tell, who never to tell. I guess I feel like......if we were in high school and there was a bully, that he just told that bully what to pick on me about, with sideway glances and wispers. Like he went behind my back and gave her some juicy info on me. I guess I feel like it's an uneven playing field. And I think she's vicious, I don't trust her, I think she has alterior motives.

I'm just irritated with the whole thing. I guess this is the first time this has come up since we've been married. So we'll have to have a talk about it.

Thanks for all of your input. I sat here nodding my head agreeing. Thanks for reminding me I'm not alone.

<img src="i/expressions/face-icon-small-smile.gif" border="0">
KELLI

 

[Kelli]

Thank you everyone. I do feel validated now. Sometimes I think I fly off the handle (which I do) but I feel that I had every right to on this one.

I am all about sharing my CF story with others, I'm able to witness how God has helped me, etc. and I think that is great. BUT I don't want others telling complete strangers (who yes will turn around and strike). I want to be the one to choose who and when I tell.

I guess it goes back to the fact that I know nothing of this woman and I don't want her knowing about me. I feel hurt that my husband would tell something so personal to some one I don't know and don't like. I will most certainly have a talk with him.

It's just such a hard issue, who to tell, who to wait to tell, who never to tell. I guess I feel like......if we were in high school and there was a bully, that he just told that bully what to pick on me about, with sideway glances and wispers. Like he went behind my back and gave her some juicy info on me. I guess I feel like it's an uneven playing field. And I think she's vicious, I don't trust her, I think she has alterior motives.

I'm just irritated with the whole thing. I guess this is the first time this has come up since we've been married. So we'll have to have a talk about it.

Thanks for all of your input. I sat here nodding my head agreeing. Thanks for reminding me I'm not alone.

<img src="i/expressions/face-icon-small-smile.gif" border="0">
KELLI

 

[wanderlost]

I go back and forth on this: it is about who they tell and HOW they tell. I can remember instances where I was coughing and someone made a dumb "need a cigarette" or "have you seen a doctor about that cough" comment only to have someone blurt out "Sha has cystic fibrosis!" and it was more embarrassing than anything else. But, as others have said, it does sometimes tka the presure off. At this point I allow my husband to tell at his discretion, but we did have a long talk about it. Mainly I'd prefer he not just tell trandom people, but those were close to, it's ok. you have to go with what makes you comfortable.

 

[wanderlost]

I go back and forth on this: it is about who they tell and HOW they tell. I can remember instances where I was coughing and someone made a dumb "need a cigarette" or "have you seen a doctor about that cough" comment only to have someone blurt out "Sha has cystic fibrosis!" and it was more embarrassing than anything else. But, as others have said, it does sometimes tka the presure off. At this point I allow my husband to tell at his discretion, but we did have a long talk about it. Mainly I'd prefer he not just tell trandom people, but those were close to, it's ok. you have to go with what makes you comfortable.

 

[wanderlost]

I go back and forth on this: it is about who they tell and HOW they tell. I can remember instances where I was coughing and someone made a dumb "need a cigarette" or "have you seen a doctor about that cough" comment only to have someone blurt out "Sha has cystic fibrosis!" and it was more embarrassing than anything else. But, as others have said, it does sometimes tka the presure off. At this point I allow my husband to tell at his discretion, but we did have a long talk about it. Mainly I'd prefer he not just tell trandom people, but those were close to, it's ok. you have to go with what makes you comfortable.

 

[wanderlost]

I go back and forth on this: it is about who they tell and HOW they tell. I can remember instances where I was coughing and someone made a dumb "need a cigarette" or "have you seen a doctor about that cough" comment only to have someone blurt out "Sha has cystic fibrosis!" and it was more embarrassing than anything else. But, as others have said, it does sometimes tka the presure off. At this point I allow my husband to tell at his discretion, but we did have a long talk about it. Mainly I'd prefer he not just tell trandom people, but those were close to, it's ok. you have to go with what makes you comfortable.

 

[wanderlost]

I go back and forth on this: it is about who they tell and HOW they tell. I can remember instances where I was coughing and someone made a dumb "need a cigarette" or "have you seen a doctor about that cough" comment only to have someone blurt out "Sha has cystic fibrosis!" and it was more embarrassing than anything else. But, as others have said, it does sometimes tka the presure off. At this point I allow my husband to tell at his discretion, but we did have a long talk about it. Mainly I'd prefer he not just tell trandom people, but those were close to, it's ok. you have to go with what makes you comfortable.

 

[Skye]

Great topic! I think we have all had these moments! I went through most of my life without the people around me knowing. Through grade school, high school, college. My husband and I even kept it from his family. His mother died a year ago without ever knowing. We have lived in several different states so moving to new places it was never comfortable to share something so personal. Then about a year ago something changed in me. I was tired of the occassional person finding out and then it turning into gossip or something else. I decided I wanted to CONTROL the message, to use a media term. I set up a website, I share with people who are going through something themselves, I let people around me know when I think it is appropriate and I control the message in a very positive light. The gossip does not control me and there is a certain amount of freedom in not having to keep this secret. There are many many people going through storms in life and they are inspired by our fortitude. Realistically, even if people know you have CF, the majority of people have no clue what it is or even what you are dealing with so they probably think less about it than what we may perceive.

 

[Skye]

Great topic! I think we have all had these moments! I went through most of my life without the people around me knowing. Through grade school, high school, college. My husband and I even kept it from his family. His mother died a year ago without ever knowing. We have lived in several different states so moving to new places it was never comfortable to share something so personal. Then about a year ago something changed in me. I was tired of the occassional person finding out and then it turning into gossip or something else. I decided I wanted to CONTROL the message, to use a media term. I set up a website, I share with people who are going through something themselves, I let people around me know when I think it is appropriate and I control the message in a very positive light. The gossip does not control me and there is a certain amount of freedom in not having to keep this secret. There are many many people going through storms in life and they are inspired by our fortitude. Realistically, even if people know you have CF, the majority of people have no clue what it is or even what you are dealing with so they probably think less about it than what we may perceive.

 

[Skye]

Great topic! I think we have all had these moments! I went through most of my life without the people around me knowing. Through grade school, high school, college. My husband and I even kept it from his family. His mother died a year ago without ever knowing. We have lived in several different states so moving to new places it was never comfortable to share something so personal. Then about a year ago something changed in me. I was tired of the occassional person finding out and then it turning into gossip or something else. I decided I wanted to CONTROL the message, to use a media term. I set up a website, I share with people who are going through something themselves, I let people around me know when I think it is appropriate and I control the message in a very positive light. The gossip does not control me and there is a certain amount of freedom in not having to keep this secret. There are many many people going through storms in life and they are inspired by our fortitude. Realistically, even if people know you have CF, the majority of people have no clue what it is or even what you are dealing with so they probably think less about it than what we may perceive.

 

[Skye]

Great topic! I think we have all had these moments! I went through most of my life without the people around me knowing. Through grade school, high school, college. My husband and I even kept it from his family. His mother died a year ago without ever knowing. We have lived in several different states so moving to new places it was never comfortable to share something so personal. Then about a year ago something changed in me. I was tired of the occassional person finding out and then it turning into gossip or something else. I decided I wanted to CONTROL the message, to use a media term. I set up a website, I share with people who are going through something themselves, I let people around me know when I think it is appropriate and I control the message in a very positive light. The gossip does not control me and there is a certain amount of freedom in not having to keep this secret. There are many many people going through storms in life and they are inspired by our fortitude. Realistically, even if people know you have CF, the majority of people have no clue what it is or even what you are dealing with so they probably think less about it than what we may perceive.

 

[Skye]

Great topic! I think we have all had these moments! I went through most of my life without the people around me knowing. Through grade school, high school, college. My husband and I even kept it from his family. His mother died a year ago without ever knowing. We have lived in several different states so moving to new places it was never comfortable to share something so personal. Then about a year ago something changed in me. I was tired of the occassional person finding out and then it turning into gossip or something else. I decided I wanted to CONTROL the message, to use a media term. I set up a website, I share with people who are going through something themselves, I let people around me know when I think it is appropriate and I control the message in a very positive light. The gossip does not control me and there is a certain amount of freedom in not having to keep this secret. There are many many people going through storms in life and they are inspired by our fortitude. Realistically, even if people know you have CF, the majority of people have no clue what it is or even what you are dealing with so they probably think less about it than what we may perceive.

 

[christyisnutz]

I know how you feel Kelli. When my daughter was younger (she's 12 now and in the no talking stage.. except to her friends), she used to tell EVERYONE we met that her Mom has Cystic Fibrosis. I wouldn't know what to say. It would be in the middle of a conversation, and they were usually speechless, or they would apologize.. not knowing any other good comeback. I would then apologize to them for my daughter's outburst! It was embarrassing and I felt "laid bare" to people I usually didn't know that well or had just met. I am so thankful she doesn't do that anymore, and I'm thankful that my husband knows better (he saw my reaction to what she would do, and learned his lesson fast). I don't have any advice except to tell your family and friends that you would like to be the one to reveal this about yourself when you feel that the time is right. I know they all mean well, but it really is a very personal thing.

 

[christyisnutz]

I know how you feel Kelli. When my daughter was younger (she's 12 now and in the no talking stage.. except to her friends), she used to tell EVERYONE we met that her Mom has Cystic Fibrosis. I wouldn't know what to say. It would be in the middle of a conversation, and they were usually speechless, or they would apologize.. not knowing any other good comeback. I would then apologize to them for my daughter's outburst! It was embarrassing and I felt "laid bare" to people I usually didn't know that well or had just met. I am so thankful she doesn't do that anymore, and I'm thankful that my husband knows better (he saw my reaction to what she would do, and learned his lesson fast). I don't have any advice except to tell your family and friends that you would like to be the one to reveal this about yourself when you feel that the time is right. I know they all mean well, but it really is a very personal thing.

 

[christyisnutz]

I know how you feel Kelli. When my daughter was younger (she's 12 now and in the no talking stage.. except to her friends), she used to tell EVERYONE we met that her Mom has Cystic Fibrosis. I wouldn't know what to say. It would be in the middle of a conversation, and they were usually speechless, or they would apologize.. not knowing any other good comeback. I would then apologize to them for my daughter's outburst! It was embarrassing and I felt "laid bare" to people I usually didn't know that well or had just met. I am so thankful she doesn't do that anymore, and I'm thankful that my husband knows better (he saw my reaction to what she would do, and learned his lesson fast). I don't have any advice except to tell your family and friends that you would like to be the one to reveal this about yourself when you feel that the time is right. I know they all mean well, but it really is a very personal thing.

 

[christyisnutz]

I know how you feel Kelli. When my daughter was younger (she's 12 now and in the no talking stage.. except to her friends), she used to tell EVERYONE we met that her Mom has Cystic Fibrosis. I wouldn't know what to say. It would be in the middle of a conversation, and they were usually speechless, or they would apologize.. not knowing any other good comeback. I would then apologize to them for my daughter's outburst! It was embarrassing and I felt "laid bare" to people I usually didn't know that well or had just met. I am so thankful she doesn't do that anymore, and I'm thankful that my husband knows better (he saw my reaction to what she would do, and learned his lesson fast). I don't have any advice except to tell your family and friends that you would like to be the one to reveal this about yourself when you feel that the time is right. I know they all mean well, but it really is a very personal thing.

 

[christyisnutz]

I know how you feel Kelli. When my daughter was younger (she's 12 now and in the no talking stage.. except to her friends), she used to tell EVERYONE we met that her Mom has Cystic Fibrosis. I wouldn't know what to say. It would be in the middle of a conversation, and they were usually speechless, or they would apologize.. not knowing any other good comeback. I would then apologize to them for my daughter's outburst! It was embarrassing and I felt "laid bare" to people I usually didn't know that well or had just met. I am so thankful she doesn't do that anymore, and I'm thankful that my husband knows better (he saw my reaction to what she would do, and learned his lesson fast). I don't have any advice except to tell your family and friends that you would like to be the one to reveal this about yourself when you feel that the time is right. I know they all mean well, but it really is a very personal thing.