I have been doing car shows for 6 years now and at first i never told anyone i had cf. I generally don't tell anyone unless i know i am going to be close to them or actually have a reason to tel them. I decided since i am in competition i didnt want anyone to know, so if i win , i win because my car deserves it, not because they feel bad. Well i have proved my point to myself well, and won quite a few trophies with this philosophy. Yesterday i was hanging out "down the river", its a waterfront where boats dock and load in the water and a LOT of hotrods are there on weekends just to hang out. I have been going there for years and always enjoyed watching the muscle cars roll thru and meeting new people. My friend Kim came up to me yesterday and said to me that this guy i barely know asked if i had cf and she said why would you ask that? He replyed that this girl he ran into in a bar casually said to him, " i remember you, you are always hanging around with the girl with the mustang (Kim) and the other girl who's really sick, she has cystic fibrosis. I was so mad because i barely know this girl and i know she heard it thru a guy friend of mine who i trusted to keep his big mouth shut ! She and he hooked up a few times and apparently he spilled the beans although i have no idea WHY my name or my personal and private health issues came up in the conversation. I am not happy that this girl is going around so casually telling people about my cf and i am very mad that my friend told anyone after i asked him not to. Before you know it, everyone will know and i just didnt want that. I am guessing at this point if anyopne asks me about it,i will just fess up and wear it with pride........ But i am so mad that i feel forced to do this because of a friends BIG MOUTH !!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Maybe im just being ridiculous
- Thread starter Diane
- Start date
I forgot to mention something, I am upset because i dont want to be known as the sick girl with the nice 442 , i always wanted to be known as the girl with the nice 442 , oh yeah and by the way she has cf .
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sarabeth87
New member
If I were in your situation, I would not deny it if anyone asked. I would also confront my friend and the girl he told. Tell the guy friend that you trusted him with something personal and he had/has not right to tell anyone. Then tell the girl that she does not even know you and she has no right to tell anyone anything about you, so in the future to keep your name out of her confersations. I know that's rude, and it'll probably make her mad, but at least you will have told her how you feel.
thelizardqueen
New member
I would be mad too. I went through a similar phase a while back where I only told the important people in my life about CF. Well at the time I was really interested in a guy, and we started to date. I hadn't told him about my CF, but an aquaintance of his knew I had it (she's friends with my uncle so she knew I had CF). Well she decided to open her trap and tell him all about my CF and diabetes before I had a chance to. After he and I had been dating for about a month I told him, and he said oh well so-and-so told me already in passing. I was so p*ssed that she would go behind my back and tell him stuff that was non of her business. Since then I've made a point of telling any one who cares about my CF. Its common knowledge now.
You are RIGHT to be frustrated, annoyed, ticked off and whatever else about this. If I were you, I'd have a frank talk with my guy friend about keeping his mouth shut and I'd find this girl and ask her to please keep your personal business out of her life and not to mention it again.
Mark is the same way about his CF. He had a bad experience in telling some people in JR high about his CF and he got treated differently. Not badly but differently. He HATES that and never tells anyone. Aside from myself, my family and his family, 2 of my girlfriends and their families know and 2 of his guy friends and their families know. That is it. And he won't tell anyone else. I respect his decision.
His freaking mom on the other hand... opens her mouth about it whenever she can. I love the woman, but this is one of those things she does that just makes me want to beat her over the head. No matter how many times he tells her to NOT mention anything to ANYONE EVER, she always works it into the conversation. Maybe she's proud of him for how much he's accomplished despite the CF. That's nice. But it's his wish that nobody know and she ought to respect that.
Friends and people you know ought to respect that. So if you have a chance, I would really consider telling you guy friend how much this offends you, how much trust you have lost in him and how frustrated you are. Might make him think twice about opening his mouth again.
Sorry about this. I know how worked up Mark gets when his mom does this (and he doesn't ge worked up about much of anything) so I can only imagine you feel smiliarly to him.
Mark is the same way about his CF. He had a bad experience in telling some people in JR high about his CF and he got treated differently. Not badly but differently. He HATES that and never tells anyone. Aside from myself, my family and his family, 2 of my girlfriends and their families know and 2 of his guy friends and their families know. That is it. And he won't tell anyone else. I respect his decision.
His freaking mom on the other hand... opens her mouth about it whenever she can. I love the woman, but this is one of those things she does that just makes me want to beat her over the head. No matter how many times he tells her to NOT mention anything to ANYONE EVER, she always works it into the conversation. Maybe she's proud of him for how much he's accomplished despite the CF. That's nice. But it's his wish that nobody know and she ought to respect that.
Friends and people you know ought to respect that. So if you have a chance, I would really consider telling you guy friend how much this offends you, how much trust you have lost in him and how frustrated you are. Might make him think twice about opening his mouth again.
Sorry about this. I know how worked up Mark gets when his mom does this (and he doesn't ge worked up about much of anything) so I can only imagine you feel smiliarly to him.
I would be very annoyed too!
I think it's different when you have a reason (whatever you feel that reason might be) to keep your health a secret and then someone spreads the news. Sometimes it's just easier and better for you/us to not have people know about cf and possibly see you differently. I hate that and would be upset about it. Hopefully everyone will continue to treat you the same. If that happens and everyone is mature about it, then it might not matter.
For certiain things like competitions, or work, etc...that's different and I can totally see why you woldn't want all those people to know. There really isn't a need for anyone to know, since it's not relevant to the competition.
I think it's different when you have a reason (whatever you feel that reason might be) to keep your health a secret and then someone spreads the news. Sometimes it's just easier and better for you/us to not have people know about cf and possibly see you differently. I hate that and would be upset about it. Hopefully everyone will continue to treat you the same. If that happens and everyone is mature about it, then it might not matter.
For certiain things like competitions, or work, etc...that's different and I can totally see why you woldn't want all those people to know. There really isn't a need for anyone to know, since it's not relevant to the competition.
illbehaved
New member
Yep, people are great. When my husband and I first moved to a new
neighborhood a few years ago, I gradually let a few know. This was
somewhat prompted by the fact that I was collecting donations for
one of our fundraisers. Most were OK, educated enough to not
"fear" the disease, and a few close neighbors were
incredibly supportive when I had major surgery last year (taking
the kids to school etc.)<br>
However, there is always at least one. A neighbor on the next
street, who I knew only in passing, was gossiping as usual, and it
was my turn to be the topic. She expressed her concern and care for
my family, because if they hadn't heard, I was dying. You would
never know that I had CF by looking at me, but with tongues
wagging, they were all incredibly worried. So worried in fact that
they continued to talk to each other...but not me.<br>
A few weeks later a neighbor that I am friends with hesitantly
approached me and asked if I might have sugarcoating the depth of
my illness. I was puzzled, but assured her that I would always try
to give her a gentle heads up. I, of course wanted names, so I
could "ease their fears."<br>
I actually ignored the source of the problem, and instead went to
the "very worried" others. To break the tension with one
I asked her where my casserole was (isn't that what you do when
someone is dying?). I then said that it was kind of her to be
concerned, but in the future I would be so appreciative if she
would share these concerns with me. Playing my trump card I
mentioned how hard it can be to pitied when I see myself as trying
to champion my disease on to a cure. Somehow, even with my
sometimes sarcastic personality, I got through. No one tries to
avoid me, I get the occasional inquiry on my health, and they
all bought raffle tickets that year! <br>
With the actual offender, a slightly more "conspiritual"
talk might express how you were sure she didn't know blah blah
blah, but it hurts your feelings when someone pities you for
something you are actually "proud" of beating the
odds at. Somehow insight into someone else's feeling can give some
people a feeling of superiority (go figure.) While I am constantly
trying to practice what I preach, putting your anger into
constructive "revenge", i.e. guilt, your own knowledge of
beating her at her own game, can actually improve your own mood. My
own experience with idiots is that the truth makes them defensive,
probably because it isn't part of their daily lives, and therefore
even more destructive. These people don't need any more incentive
to be offensive!<br>
On a side note (this wasn't long enough!) I also have developed an
arsenal of responses to the nasty "you don't look
sick," or other confrontational people regarding handicapped
parking. My current retort is "well, you don't <i>look</i>
ignorant." for the truly dense I add "I guess looks can
be deceiving."<br>
Kill them with kindness is starting to pay off for me.<br>
<br>
neighborhood a few years ago, I gradually let a few know. This was
somewhat prompted by the fact that I was collecting donations for
one of our fundraisers. Most were OK, educated enough to not
"fear" the disease, and a few close neighbors were
incredibly supportive when I had major surgery last year (taking
the kids to school etc.)<br>
However, there is always at least one. A neighbor on the next
street, who I knew only in passing, was gossiping as usual, and it
was my turn to be the topic. She expressed her concern and care for
my family, because if they hadn't heard, I was dying. You would
never know that I had CF by looking at me, but with tongues
wagging, they were all incredibly worried. So worried in fact that
they continued to talk to each other...but not me.<br>
A few weeks later a neighbor that I am friends with hesitantly
approached me and asked if I might have sugarcoating the depth of
my illness. I was puzzled, but assured her that I would always try
to give her a gentle heads up. I, of course wanted names, so I
could "ease their fears."<br>
I actually ignored the source of the problem, and instead went to
the "very worried" others. To break the tension with one
I asked her where my casserole was (isn't that what you do when
someone is dying?). I then said that it was kind of her to be
concerned, but in the future I would be so appreciative if she
would share these concerns with me. Playing my trump card I
mentioned how hard it can be to pitied when I see myself as trying
to champion my disease on to a cure. Somehow, even with my
sometimes sarcastic personality, I got through. No one tries to
avoid me, I get the occasional inquiry on my health, and they
all bought raffle tickets that year! <br>
With the actual offender, a slightly more "conspiritual"
talk might express how you were sure she didn't know blah blah
blah, but it hurts your feelings when someone pities you for
something you are actually "proud" of beating the
odds at. Somehow insight into someone else's feeling can give some
people a feeling of superiority (go figure.) While I am constantly
trying to practice what I preach, putting your anger into
constructive "revenge", i.e. guilt, your own knowledge of
beating her at her own game, can actually improve your own mood. My
own experience with idiots is that the truth makes them defensive,
probably because it isn't part of their daily lives, and therefore
even more destructive. These people don't need any more incentive
to be offensive!<br>
On a side note (this wasn't long enough!) I also have developed an
arsenal of responses to the nasty "you don't look
sick," or other confrontational people regarding handicapped
parking. My current retort is "well, you don't <i>look</i>
ignorant." for the truly dense I add "I guess looks can
be deceiving."<br>
Kill them with kindness is starting to pay off for me.<br>
<br>
blindhearted
New member
you have every right to be angry. I agree with what sarabeth said, dont deny it if asked but do confront your friend and the girl. It's your health and who knows about it should be disclosed at your discression. I personally have never been secretive about my CF but I've never wore it like a neon sign either. I have a family that likes to talk and pretty much everyone in town knows I have CF. And I do hate it when I meet someone that I dont know and I say who I am, or who my family members are the first thing out of their mouth is "Oh, your the sick one." That drives me nuts! so I completely understand why you wouldnt want to be labeled like that.
I guess I am kind of in the minority here. I presume that you are most upset at the guy friend who leaked this info to begin with & that is understandable & should be addressed with him. Yet at the same time that is ALWAYS a chance you take when anyone besides yourself knows something. As far as the girl who continued to forward this information. Well, unfortunately, people talk especially when its "shocking" news. Now you can confront her & see what happens, but depending on the type of person she is. It might not make a difference. I never hid my CF. I didnt wear a neon sign as blindhearted said, but very few people from where I grew up DIDNT know. Not wanting to be pitied or the focus of your hard work & pride on the car being being distracted about the fact that you have CF is just another obstacle or challenge depending on how you want to look at it. Clear the air with those involved & move on!
Um, yeah, I can honestly say I'd be pissed. I'd confront her
ASAP about it, and your friend. I've never kept my CF under
cover, so I can't be too sure how you feel, but don't worry about
people looking at you as 'the sick girl'. You seem to have
some spunk about you, and anyone worth the time will see you for
you and not the disease.
ASAP about it, and your friend. I've never kept my CF under
cover, so I can't be too sure how you feel, but don't worry about
people looking at you as 'the sick girl'. You seem to have
some spunk about you, and anyone worth the time will see you for
you and not the disease.
littledebbie
New member
This happened to me at work once. A girl I work with guessed
I had CF because her roommate in college had it and so she
recognized "the cough" we were sorta friends though so I
didn't think much of it I just told her it's not really common
knowledge you know.<br>
<br>
But as is human nature she blabbled and in walking though the
office a total stranger said something to me in front of a group of
people I didn't know. I just looked at her and asked if I
knew her and she started explaining who she was etc. and I just
said that's good thank you and kept walking.<br>
<br>
Then I told my friend who had blabbed how upset i was and that she
had better go do damage control and shut that down FAST or our
friendship was seriously OVER. She went and talked to the
lady and killed it. I did say something to that lady I went
and told her how I knew there was NO way she would have known it is
a private matter to me but that it is and I would greatly
appreciate it if she could keep it to herself. She was
actually very cool about it apologized and said she just didn't
know it was sort of on the low.<br>
<br>
I say nail your friend and ask lady big mouth to tone it down.
It's really not her fault she doesn't have the sense God gave
an ant. Explain it to her.<br>
<br>
I am sorry this happened. I know it really rattled me.
I like to feel like there are some places where I am just
judged as me without the CF. Like my work is good or it's not
but it has nothing to do with my CF. <br>
<br>
If others say anything maybe just let them know that your health is
a private topic to you and you appreciate their concern but it's
not really up for discussion.<br>
<br>
I hope it dies down.....
I had CF because her roommate in college had it and so she
recognized "the cough" we were sorta friends though so I
didn't think much of it I just told her it's not really common
knowledge you know.<br>
<br>
But as is human nature she blabbled and in walking though the
office a total stranger said something to me in front of a group of
people I didn't know. I just looked at her and asked if I
knew her and she started explaining who she was etc. and I just
said that's good thank you and kept walking.<br>
<br>
Then I told my friend who had blabbed how upset i was and that she
had better go do damage control and shut that down FAST or our
friendship was seriously OVER. She went and talked to the
lady and killed it. I did say something to that lady I went
and told her how I knew there was NO way she would have known it is
a private matter to me but that it is and I would greatly
appreciate it if she could keep it to herself. She was
actually very cool about it apologized and said she just didn't
know it was sort of on the low.<br>
<br>
I say nail your friend and ask lady big mouth to tone it down.
It's really not her fault she doesn't have the sense God gave
an ant. Explain it to her.<br>
<br>
I am sorry this happened. I know it really rattled me.
I like to feel like there are some places where I am just
judged as me without the CF. Like my work is good or it's not
but it has nothing to do with my CF. <br>
<br>
If others say anything maybe just let them know that your health is
a private topic to you and you appreciate their concern but it's
not really up for discussion.<br>
<br>
I hope it dies down.....
Hi Diane
I am sorry to hear that you are hurt and upset. This girl who came over to you sounds very Jealous of you. She is and I would not talk to her again and mention the CF. If you tell her to not say anything anymore they will not stop. If they are blaber mouths they will keep on telling if you make it a point for them to stop. Do not give them a topic of subject matter like you do not want others to know because if you do they will tell others just what you do not want them to say. they are obviously immature and I would not bother with them.
If you make a big deal out of it they will too so I say act like it is no big deal.
I personally feel if you act like CF is no big deal then others will treat you the same. When you act shy about it or like you are afraid for others to know they will use it against you or look right through you and try to intimidate you.
some people given the right about of ignorance will feel sorry for you if they find out but if they only knew you they would probably admire you. I say people react to you the way you present yourself.
I am sorry to hear that you are hurt and upset. This girl who came over to you sounds very Jealous of you. She is and I would not talk to her again and mention the CF. If you tell her to not say anything anymore they will not stop. If they are blaber mouths they will keep on telling if you make it a point for them to stop. Do not give them a topic of subject matter like you do not want others to know because if you do they will tell others just what you do not want them to say. they are obviously immature and I would not bother with them.
If you make a big deal out of it they will too so I say act like it is no big deal.
I personally feel if you act like CF is no big deal then others will treat you the same. When you act shy about it or like you are afraid for others to know they will use it against you or look right through you and try to intimidate you.
some people given the right about of ignorance will feel sorry for you if they find out but if they only knew you they would probably admire you. I say people react to you the way you present yourself.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i> Lilith, wow never? So
at what point in a new friendship to you give them the news or have
you lived in the same small town your whole life and everyone's
known you forever?</end quote></div><br>
<br>
I pretty much told new friends a few days after I met them.
Some of them would beat me to it because of my coughing and
ask if I was sick. When I moved to a smaller town and started
going to high school, word got around pretty fast that I was a
CF'er because I would tell my teachers and such, especially my
physical ed. coach, and I did a few reports on CF for some of my
classes. People may not have known a lot about the disease,
but they sure knew my name! Because word spread so fast, my
boyfriend already knew I was 'sick' before he asked me out.
So I've never really had to keep things under wraps for long.
at what point in a new friendship to you give them the news or have
you lived in the same small town your whole life and everyone's
known you forever?</end quote></div><br>
<br>
I pretty much told new friends a few days after I met them.
Some of them would beat me to it because of my coughing and
ask if I was sick. When I moved to a smaller town and started
going to high school, word got around pretty fast that I was a
CF'er because I would tell my teachers and such, especially my
physical ed. coach, and I did a few reports on CF for some of my
classes. People may not have known a lot about the disease,
but they sure knew my name! Because word spread so fast, my
boyfriend already knew I was 'sick' before he asked me out.
So I've never really had to keep things under wraps for long.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ChippedAway</b></i>
What kind of car do you have? My dad shows hotrods too!</end quote></div>
I have a 1986 Modified Street Olds 442, i attached a very unflattering picture ( LOL) because the other ones i have were too large to load. In case you will ask, yes i built it from the bottom up ( with help of coarse). I have gone thru 4 motors already ( im so rough on that car <img src=""> )
The motor i have now is a 1969 Rocket 355, which is the motor i will keep in her . The other three were modified 307's and couldnt get out of their own way. This motor gets out of everyone's way....lol
What does your dad have?
What kind of car do you have? My dad shows hotrods too!</end quote></div>
I have a 1986 Modified Street Olds 442, i attached a very unflattering picture ( LOL) because the other ones i have were too large to load. In case you will ask, yes i built it from the bottom up ( with help of coarse). I have gone thru 4 motors already ( im so rough on that car <img src=""> )
The motor i have now is a 1969 Rocket 355, which is the motor i will keep in her . The other three were modified 307's and couldnt get out of their own way. This motor gets out of everyone's way....lol
What does your dad have?
<b>Diane,<br>
</b><br>
I was diagnosed a few months ago. I'm 43. I was confused, a bit
angry but what drives me is that my Nephew died last year from CF.
He was 15 and had it much worse than I do. He had no chance at life
and yes, most fellow students were supportive yet some gave mixed
reactions to his problem. Ignorance and fear is to be expected
at that age and at his death, I made <span style=
" text-decoration: underline;">sure those children knew what
CF is. But we're all grown up.<br>
<br>
I don't tell people at random for sympathy but I do pick and choose
who knows. I told most of my friends. They were very cool and
supportive about it. Especially the ones who smoke. You could just
imagine that conversation. Some have quit because of me. Good for
them. I made a difference.<br>
<br>
I think education is key. And if everyone finds out about it, WHO
CARES! Ignorance breeds prejudice. If some people treat you
differently, then they are <span style=
" text-decoration: underline;">not your friends. They're
just stupid and afraid.<br>
<br>
So I wear it with pride now. I want people to know. The more
awareness, the more support, the faster a cure. Every time I'm at
the clinic and I see those kids who are on breathing machines
struggling to live. It breaks my heart. I want to save them all.
Right now, knowledge and education is the only power we
have.<br>
<br>
If I were you, I would where a t-shirt at the next car show.
<strong>JazzysMom</strong> sent me this link. I think it's pretty
darn cool. <a target="_blank" class="ftalternatingbarlinklarge"
href=
"http://www.cafepress.com/rys_shirts">http://www.cafepress.com/rys_shirts</a>
I love the web site! I really like the t-shirt message,
"Blew my 401K on Pulmozyme and liquor." That's classic!
Or "Excuse me while I beat my son." Very good. It gets
people's attention about a very serious matter with humor.<br>
<br>
Who cares if they all know! You have our support!<br>
<br>
<b>Randford</b>
</b><br>
I was diagnosed a few months ago. I'm 43. I was confused, a bit
angry but what drives me is that my Nephew died last year from CF.
He was 15 and had it much worse than I do. He had no chance at life
and yes, most fellow students were supportive yet some gave mixed
reactions to his problem. Ignorance and fear is to be expected
at that age and at his death, I made <span style=
" text-decoration: underline;">sure those children knew what
CF is. But we're all grown up.<br>
<br>
I don't tell people at random for sympathy but I do pick and choose
who knows. I told most of my friends. They were very cool and
supportive about it. Especially the ones who smoke. You could just
imagine that conversation. Some have quit because of me. Good for
them. I made a difference.<br>
<br>
I think education is key. And if everyone finds out about it, WHO
CARES! Ignorance breeds prejudice. If some people treat you
differently, then they are <span style=
" text-decoration: underline;">not your friends. They're
just stupid and afraid.<br>
<br>
So I wear it with pride now. I want people to know. The more
awareness, the more support, the faster a cure. Every time I'm at
the clinic and I see those kids who are on breathing machines
struggling to live. It breaks my heart. I want to save them all.
Right now, knowledge and education is the only power we
have.<br>
<br>
If I were you, I would where a t-shirt at the next car show.
<strong>JazzysMom</strong> sent me this link. I think it's pretty
darn cool. <a target="_blank" class="ftalternatingbarlinklarge"
href=
"http://www.cafepress.com/rys_shirts">http://www.cafepress.com/rys_shirts</a>
I love the web site! I really like the t-shirt message,
"Blew my 401K on Pulmozyme and liquor." That's classic!
Or "Excuse me while I beat my son." Very good. It gets
people's attention about a very serious matter with humor.<br>
<br>
Who cares if they all know! You have our support!<br>
<br>
<b>Randford</b>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>karenb</b></i>
Diane, your complaints are valid but I cant get past what a cool chic you are! I mean, hanging out with the hotrods, showing cars, too cool! You have got it together girl.
Also, I will never ever forget the story about the man you let win a few times. I think you are the coolest!</end quote></div>
<img src="i/expressions/face-icon-small-happy.gif" border="0"> Thank You karen, I am impressed you remembered that story. I was thinking about it last night actually because a guy in my car club that i am close to won a trophy on sat. ( i didnt win) and when i came back to my car i saw a trophy sitting in my drivers seat. I asked who did it and he fessed up and said out of all our cars in the club (that were there that day) he thought mine deserved it. It made me cry because i know it was a pity trophy, because he knew i was on the iv for 3 -1/2 weeks and he told my mom he knows how hard i work on my car and that i deserve it. These are the exact reasons why i dont like anyone to know. It reminded me of when i made sure that guy who was dieing of cancer always won when he went to shows because i knew it would thrill him. Most of my car club knows about my cf which is fine, i am close to them , i trust them, and they always look out for me. But i dont want pity trophys <img src="i/expressions/face-icon-small-mad.gif" border="0">
Diane, your complaints are valid but I cant get past what a cool chic you are! I mean, hanging out with the hotrods, showing cars, too cool! You have got it together girl.
Also, I will never ever forget the story about the man you let win a few times. I think you are the coolest!</end quote></div>
<img src="i/expressions/face-icon-small-happy.gif" border="0"> Thank You karen, I am impressed you remembered that story. I was thinking about it last night actually because a guy in my car club that i am close to won a trophy on sat. ( i didnt win) and when i came back to my car i saw a trophy sitting in my drivers seat. I asked who did it and he fessed up and said out of all our cars in the club (that were there that day) he thought mine deserved it. It made me cry because i know it was a pity trophy, because he knew i was on the iv for 3 -1/2 weeks and he told my mom he knows how hard i work on my car and that i deserve it. These are the exact reasons why i dont like anyone to know. It reminded me of when i made sure that guy who was dieing of cancer always won when he went to shows because i knew it would thrill him. Most of my car club knows about my cf which is fine, i am close to them , i trust them, and they always look out for me. But i dont want pity trophys <img src="i/expressions/face-icon-small-mad.gif" border="0">