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

[Skye]

Kelli,

I do totally respect you wanting privacy, especially in a business situation. Never in my life have I ever shared with an employer or my husband's employer or colleagues. I also hate it if someone does know and every damn time they see me they ask me how I am feeling. I'd like a comeback for that one if anyone has a good one. I would suggest to this woman that you don't discuss your medical history with anyone but your doctor and that you would not expect her to have to discuss any of her medical history with you. Just a thought!

 

[Skye]

Kelli,

I do totally respect you wanting privacy, especially in a business situation. Never in my life have I ever shared with an employer or my husband's employer or colleagues. I also hate it if someone does know and every damn time they see me they ask me how I am feeling. I'd like a comeback for that one if anyone has a good one. I would suggest to this woman that you don't discuss your medical history with anyone but your doctor and that you would not expect her to have to discuss any of her medical history with you. Just a thought!

 

[Skye]

Kelli,

I do totally respect you wanting privacy, especially in a business situation. Never in my life have I ever shared with an employer or my husband's employer or colleagues. I also hate it if someone does know and every damn time they see me they ask me how I am feeling. I'd like a comeback for that one if anyone has a good one. I would suggest to this woman that you don't discuss your medical history with anyone but your doctor and that you would not expect her to have to discuss any of her medical history with you. Just a thought!

 

[Skye]

Kelli,

I do totally respect you wanting privacy, especially in a business situation. Never in my life have I ever shared with an employer or my husband's employer or colleagues. I also hate it if someone does know and every damn time they see me they ask me how I am feeling. I'd like a comeback for that one if anyone has a good one. I would suggest to this woman that you don't discuss your medical history with anyone but your doctor and that you would not expect her to have to discuss any of her medical history with you. Just a thought!

 

[Skye]

Kelli,

I do totally respect you wanting privacy, especially in a business situation. Never in my life have I ever shared with an employer or my husband's employer or colleagues. I also hate it if someone does know and every damn time they see me they ask me how I am feeling. I'd like a comeback for that one if anyone has a good one. I would suggest to this woman that you don't discuss your medical history with anyone but your doctor and that you would not expect her to have to discuss any of her medical history with you. Just a thought!

 

[JennifersHope]

Gosh I can see how ticked off you are.. Man.. If it is that important to you, then speak with your husband about it, I would just make sure that he understands that he has people he can talk to about your CF..

Caregivers need a place to vent and share feelings, granted not with your employees and for whatever reason you want control over who knows what and when, which is your right....

I just before totally going off on your husband would make sure he understood, and then make sure you know that he probably didn't do it to be mean to you, or to tick you off, He sounds like a nice guy, maybe he just made a mistake,

I would clearly and NICELY tell him you don't ever want him to tell people that you work with or whatever.. but also give him the names of people he can talk freely about your CF to and not just you.....

I don't know, I know you didn't want any advice of anyone who didnt agree with you, though you did ask what we do in this situation... I just feel bad for your husband for getting chewed out

Leave it to me to go for the underdog...

 

[JennifersHope]

Gosh I can see how ticked off you are.. Man.. If it is that important to you, then speak with your husband about it, I would just make sure that he understands that he has people he can talk to about your CF..

Caregivers need a place to vent and share feelings, granted not with your employees and for whatever reason you want control over who knows what and when, which is your right....

I just before totally going off on your husband would make sure he understood, and then make sure you know that he probably didn't do it to be mean to you, or to tick you off, He sounds like a nice guy, maybe he just made a mistake,

I would clearly and NICELY tell him you don't ever want him to tell people that you work with or whatever.. but also give him the names of people he can talk freely about your CF to and not just you.....

I don't know, I know you didn't want any advice of anyone who didnt agree with you, though you did ask what we do in this situation... I just feel bad for your husband for getting chewed out

Leave it to me to go for the underdog...

 

[JennifersHope]

Gosh I can see how ticked off you are.. Man.. If it is that important to you, then speak with your husband about it, I would just make sure that he understands that he has people he can talk to about your CF..

Caregivers need a place to vent and share feelings, granted not with your employees and for whatever reason you want control over who knows what and when, which is your right....

I just before totally going off on your husband would make sure he understood, and then make sure you know that he probably didn't do it to be mean to you, or to tick you off, He sounds like a nice guy, maybe he just made a mistake,

I would clearly and NICELY tell him you don't ever want him to tell people that you work with or whatever.. but also give him the names of people he can talk freely about your CF to and not just you.....

I don't know, I know you didn't want any advice of anyone who didnt agree with you, though you did ask what we do in this situation... I just feel bad for your husband for getting chewed out

Leave it to me to go for the underdog...

 

[JennifersHope]

Gosh I can see how ticked off you are.. Man.. If it is that important to you, then speak with your husband about it, I would just make sure that he understands that he has people he can talk to about your CF..

Caregivers need a place to vent and share feelings, granted not with your employees and for whatever reason you want control over who knows what and when, which is your right....

I just before totally going off on your husband would make sure he understood, and then make sure you know that he probably didn't do it to be mean to you, or to tick you off, He sounds like a nice guy, maybe he just made a mistake,

I would clearly and NICELY tell him you don't ever want him to tell people that you work with or whatever.. but also give him the names of people he can talk freely about your CF to and not just you.....

I don't know, I know you didn't want any advice of anyone who didnt agree with you, though you did ask what we do in this situation... I just feel bad for your husband for getting chewed out

Leave it to me to go for the underdog...

 

[JennifersHope]

Gosh I can see how ticked off you are.. Man.. If it is that important to you, then speak with your husband about it, I would just make sure that he understands that he has people he can talk to about your CF..

Caregivers need a place to vent and share feelings, granted not with your employees and for whatever reason you want control over who knows what and when, which is your right....

I just before totally going off on your husband would make sure he understood, and then make sure you know that he probably didn't do it to be mean to you, or to tick you off, He sounds like a nice guy, maybe he just made a mistake,

I would clearly and NICELY tell him you don't ever want him to tell people that you work with or whatever.. but also give him the names of people he can talk freely about your CF to and not just you.....

I don't know, I know you didn't want any advice of anyone who didnt agree with you, though you did ask what we do in this situation... I just feel bad for your husband for getting chewed out

Leave it to me to go for the underdog...

 

[bittyhorse23]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Skye</b></i>
I would suggest to this woman that you don't discuss your medical history with anyone but your doctor and that you would not expect her to have to discuss any of her medical history with you. Just a thought!</end quote></div>

Very good idea! Maybe then she will get the hint!!!

 

[bittyhorse23]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Skye</b></i>
I would suggest to this woman that you don't discuss your medical history with anyone but your doctor and that you would not expect her to have to discuss any of her medical history with you. Just a thought!</end quote></div>

Very good idea! Maybe then she will get the hint!!!

 

[bittyhorse23]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Skye</b></i>
I would suggest to this woman that you don't discuss your medical history with anyone but your doctor and that you would not expect her to have to discuss any of her medical history with you. Just a thought!</end quote></div>

Very good idea! Maybe then she will get the hint!!!

 

[bittyhorse23]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Skye</b></i>
I would suggest to this woman that you don't discuss your medical history with anyone but your doctor and that you would not expect her to have to discuss any of her medical history with you. Just a thought!</end quote>

Very good idea! Maybe then she will get the hint!!!

 

[bittyhorse23]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Skye</b></i>
I would suggest to this woman that you don't discuss your medical history with anyone but your doctor and that you would not expect her to have to discuss any of her medical history with you. Just a thought!</end quote>

Very good idea! Maybe then she will get the hint!!!

 

[coltsfan715]

I have only had this happen to me once and I will admit my emotions ran the gamut. I was mortified and angry and upset all at the same time.

For me this happened when I was in high school. There was a new club that had started and I was a part of it - well for every club or organization that ran at our school they each had to do volunteers stuff for a charity. Being that it was a new club there was no already chosen set in stone charity so I brought up the CF foundation and the great strides walk to my teacher -- alone. All my teachers knew I had CF and my close friends but the majority of the school was in the dark. My teacher thought it was a great idea and that she wanted someone from the local CFF chapter to come and talk about CF and the walk with the group. I got everything set up and chose to stay home or just go home the day of the meeting so I wasn't uncomfortable.

I was at home doing homework when about 15 minutes after the meeting was too have ended one of my best friends called me in a semi panic. She said um ... I need to tell you something. I said what happened cause I could tell something was wrong and .... the rep from the CF foundation had just come out and said (afer describing CF and everything about it) that you all (meaning the student body) knwo someone with this disease but are probably unaware .. it is Lindsey. My friends all sat there mouths hanging open because they knew I intentionally did not tell people my issues because I didn't want people to make assumptions about me based on that.

I dealt with questions and assumptions for the rest of that school year into my senior year in high school. It wasn't the best experience and I still voice my irritation when I am asked about it because it should not have happened that way - especially when I specifically said to her that no one in my class knew I had CF and I wanted to keep it that way. The total disregard for what I wanted and how I felt about handling my OWN issues is what ticked me off.

After time passed the questions stopped and people realized that I didn't have the plague and that I was completely capable of taking care of myself. Again the reactions ranged aongst my peers - some thought of me as an invalid after that even though I was relatively health in high school. THey would ask if it was okay for me to walk more than a mile or if I should be riding a bike and stuff like that -others just kind of kept their distance and would give me "that" look.

Now it doesn't bother me so much I talk about it and transplant stuff freely. It took that occurence and just growing up a bit and being comfortable in my own skin to come to that point though. I completely understand the issue you are having though and I am sorry you are dealing with it. I know the feelings it gave me and they were not pleasant.

Love Linds

 

[coltsfan715]

I have only had this happen to me once and I will admit my emotions ran the gamut. I was mortified and angry and upset all at the same time.

For me this happened when I was in high school. There was a new club that had started and I was a part of it - well for every club or organization that ran at our school they each had to do volunteers stuff for a charity. Being that it was a new club there was no already chosen set in stone charity so I brought up the CF foundation and the great strides walk to my teacher -- alone. All my teachers knew I had CF and my close friends but the majority of the school was in the dark. My teacher thought it was a great idea and that she wanted someone from the local CFF chapter to come and talk about CF and the walk with the group. I got everything set up and chose to stay home or just go home the day of the meeting so I wasn't uncomfortable.

I was at home doing homework when about 15 minutes after the meeting was too have ended one of my best friends called me in a semi panic. She said um ... I need to tell you something. I said what happened cause I could tell something was wrong and .... the rep from the CF foundation had just come out and said (afer describing CF and everything about it) that you all (meaning the student body) knwo someone with this disease but are probably unaware .. it is Lindsey. My friends all sat there mouths hanging open because they knew I intentionally did not tell people my issues because I didn't want people to make assumptions about me based on that.

I dealt with questions and assumptions for the rest of that school year into my senior year in high school. It wasn't the best experience and I still voice my irritation when I am asked about it because it should not have happened that way - especially when I specifically said to her that no one in my class knew I had CF and I wanted to keep it that way. The total disregard for what I wanted and how I felt about handling my OWN issues is what ticked me off.

After time passed the questions stopped and people realized that I didn't have the plague and that I was completely capable of taking care of myself. Again the reactions ranged aongst my peers - some thought of me as an invalid after that even though I was relatively health in high school. THey would ask if it was okay for me to walk more than a mile or if I should be riding a bike and stuff like that -others just kind of kept their distance and would give me "that" look.

Now it doesn't bother me so much I talk about it and transplant stuff freely. It took that occurence and just growing up a bit and being comfortable in my own skin to come to that point though. I completely understand the issue you are having though and I am sorry you are dealing with it. I know the feelings it gave me and they were not pleasant.

Love Linds

 

[coltsfan715]

I have only had this happen to me once and I will admit my emotions ran the gamut. I was mortified and angry and upset all at the same time.

For me this happened when I was in high school. There was a new club that had started and I was a part of it - well for every club or organization that ran at our school they each had to do volunteers stuff for a charity. Being that it was a new club there was no already chosen set in stone charity so I brought up the CF foundation and the great strides walk to my teacher -- alone. All my teachers knew I had CF and my close friends but the majority of the school was in the dark. My teacher thought it was a great idea and that she wanted someone from the local CFF chapter to come and talk about CF and the walk with the group. I got everything set up and chose to stay home or just go home the day of the meeting so I wasn't uncomfortable.

I was at home doing homework when about 15 minutes after the meeting was too have ended one of my best friends called me in a semi panic. She said um ... I need to tell you something. I said what happened cause I could tell something was wrong and .... the rep from the CF foundation had just come out and said (afer describing CF and everything about it) that you all (meaning the student body) knwo someone with this disease but are probably unaware .. it is Lindsey. My friends all sat there mouths hanging open because they knew I intentionally did not tell people my issues because I didn't want people to make assumptions about me based on that.

I dealt with questions and assumptions for the rest of that school year into my senior year in high school. It wasn't the best experience and I still voice my irritation when I am asked about it because it should not have happened that way - especially when I specifically said to her that no one in my class knew I had CF and I wanted to keep it that way. The total disregard for what I wanted and how I felt about handling my OWN issues is what ticked me off.

After time passed the questions stopped and people realized that I didn't have the plague and that I was completely capable of taking care of myself. Again the reactions ranged aongst my peers - some thought of me as an invalid after that even though I was relatively health in high school. THey would ask if it was okay for me to walk more than a mile or if I should be riding a bike and stuff like that -others just kind of kept their distance and would give me "that" look.

Now it doesn't bother me so much I talk about it and transplant stuff freely. It took that occurence and just growing up a bit and being comfortable in my own skin to come to that point though. I completely understand the issue you are having though and I am sorry you are dealing with it. I know the feelings it gave me and they were not pleasant.

Love Linds

 

[coltsfan715]

I have only had this happen to me once and I will admit my emotions ran the gamut. I was mortified and angry and upset all at the same time.

For me this happened when I was in high school. There was a new club that had started and I was a part of it - well for every club or organization that ran at our school they each had to do volunteers stuff for a charity. Being that it was a new club there was no already chosen set in stone charity so I brought up the CF foundation and the great strides walk to my teacher -- alone. All my teachers knew I had CF and my close friends but the majority of the school was in the dark. My teacher thought it was a great idea and that she wanted someone from the local CFF chapter to come and talk about CF and the walk with the group. I got everything set up and chose to stay home or just go home the day of the meeting so I wasn't uncomfortable.

I was at home doing homework when about 15 minutes after the meeting was too have ended one of my best friends called me in a semi panic. She said um ... I need to tell you something. I said what happened cause I could tell something was wrong and .... the rep from the CF foundation had just come out and said (afer describing CF and everything about it) that you all (meaning the student body) knwo someone with this disease but are probably unaware .. it is Lindsey. My friends all sat there mouths hanging open because they knew I intentionally did not tell people my issues because I didn't want people to make assumptions about me based on that.

I dealt with questions and assumptions for the rest of that school year into my senior year in high school. It wasn't the best experience and I still voice my irritation when I am asked about it because it should not have happened that way - especially when I specifically said to her that no one in my class knew I had CF and I wanted to keep it that way. The total disregard for what I wanted and how I felt about handling my OWN issues is what ticked me off.

After time passed the questions stopped and people realized that I didn't have the plague and that I was completely capable of taking care of myself. Again the reactions ranged aongst my peers - some thought of me as an invalid after that even though I was relatively health in high school. THey would ask if it was okay for me to walk more than a mile or if I should be riding a bike and stuff like that -others just kind of kept their distance and would give me "that" look.

Now it doesn't bother me so much I talk about it and transplant stuff freely. It took that occurence and just growing up a bit and being comfortable in my own skin to come to that point though. I completely understand the issue you are having though and I am sorry you are dealing with it. I know the feelings it gave me and they were not pleasant.

Love Linds

 

[coltsfan715]

I have only had this happen to me once and I will admit my emotions ran the gamut. I was mortified and angry and upset all at the same time.

For me this happened when I was in high school. There was a new club that had started and I was a part of it - well for every club or organization that ran at our school they each had to do volunteers stuff for a charity. Being that it was a new club there was no already chosen set in stone charity so I brought up the CF foundation and the great strides walk to my teacher -- alone. All my teachers knew I had CF and my close friends but the majority of the school was in the dark. My teacher thought it was a great idea and that she wanted someone from the local CFF chapter to come and talk about CF and the walk with the group. I got everything set up and chose to stay home or just go home the day of the meeting so I wasn't uncomfortable.

I was at home doing homework when about 15 minutes after the meeting was too have ended one of my best friends called me in a semi panic. She said um ... I need to tell you something. I said what happened cause I could tell something was wrong and .... the rep from the CF foundation had just come out and said (afer describing CF and everything about it) that you all (meaning the student body) knwo someone with this disease but are probably unaware .. it is Lindsey. My friends all sat there mouths hanging open because they knew I intentionally did not tell people my issues because I didn't want people to make assumptions about me based on that.

I dealt with questions and assumptions for the rest of that school year into my senior year in high school. It wasn't the best experience and I still voice my irritation when I am asked about it because it should not have happened that way - especially when I specifically said to her that no one in my class knew I had CF and I wanted to keep it that way. The total disregard for what I wanted and how I felt about handling my OWN issues is what ticked me off.

After time passed the questions stopped and people realized that I didn't have the plague and that I was completely capable of taking care of myself. Again the reactions ranged aongst my peers - some thought of me as an invalid after that even though I was relatively health in high school. THey would ask if it was okay for me to walk more than a mile or if I should be riding a bike and stuff like that -others just kind of kept their distance and would give me "that" look.

Now it doesn't bother me so much I talk about it and transplant stuff freely. It took that occurence and just growing up a bit and being comfortable in my own skin to come to that point though. I completely understand the issue you are having though and I am sorry you are dealing with it. I know the feelings it gave me and they were not pleasant.

Love Linds