Cale Gilley:
So I’ve been thinking about this a lot lately and I’m so sick of the pity I get when I tell people I have Cystic Fibrosis. I’m pretty outgoing and I go to bars and meet people all the time and people who smoke always ask if I want come join them outside while they smoke and I say no. Of course they ask why I can’t just come keep them company and then I say I can’t be around the smoke. They ask why and then after I explain it in comes the pity… Just wondering if anyone has any thoughts or ways around this.
Hera:
The way that I handled it was just not to tell anyone, ever. Of course then it can come across as I’m lazy or disrespectful depending on the circumstances.
I am still very careful who I tell but I figure if I’m going to spend a lot of time with them I’d rather them pity me than think those other things. At least pity is a way to show they care.
Guess it also depends on why you told them. In the smoking case you described if it were me I would of probably just told them I had asthma, much more common and you can avoid the danger without offending them if that’s what you’re going for.
That’s what works for me, hope it helped.
dgeorgerace:
I’ve just stuck with either “I have shitty lungs” or “I have bad asthma” and people usually get it. People who are close to me understand that I have CF, not really what it is though. It’s tough. I had to explain to a client once about some pancreas issues I was dealing with and he kinda was just taken back. I am fortune enough with my lung function that I can pretend in most circumstances (except the coughing) that I’m “normal”, so it always throws people off when I’m really sick. Try not to let it bother you
Austisu:
DS has gotten a couple comments/questions on his surgical scar from his two bowel obstructions, which we forget is even there. Last winter it was from someone who saw it and asked if he’d spent time in a nicu — his twins were preemies and he must’ve seen something similar, but a few years ago we were at a graduation party at the lake and a stranger looked at ds and said “oh, did you have your appendix out”. DS said not understanding thinking she meant his intestines “they took it out and put it back in and then it came back and they had to do it again.” So this woman tries to argue with him, that he was incorrect. Yeah, argue with a 6 year old about his health experiences.
jsf75
So I’ve been thinking about this a lot lately and I’m so sick of the pity I get when I tell people I have Cystic Fibrosis. I’m pretty outgoing and I go to bars and meet people all the time and people who smoke always ask if I want come join them outside while they smoke and I say no. Of course they ask why I can’t just come keep them company and then I say I can’t be around the smoke. They ask why and then after I explain it in comes the pity… Just wondering if anyone has any thoughts or ways around this.
MSCAli24:
Everyone I tell doesn't even know what it is!
ditto. I can sum it up in less than a minute and add that I had a lung transplant and all people say with widened eyes is “oh wow!” I swear some people probably don’t even know what a lung transplant is but I really do not care what people think. Good or bad. It is what it is. I live my life. You live yours. Nice to meet you and see ya.
JosieJoe
I am probably going to get the “You just don’t get how we feel” in this thread. I have the different perspective coming from the parent point if view. My son was Dx at 4 months old. He is 19 now. He is much like the others that post here. He just doesn’t talk about it. I can’t say I blame him as well. Most people just do not get it. So the rule is a if they don’t ask we don’t tell. You see the parents also do not want a pity party. I am so sick of all “Oh I am so sorry” and If I hear one more time about how one of thier friends niece had CF but passed away…… oh make me puke. Don’t want to hear that….why do they say stuff like that? Are they trying to fill that awkward silence?
Blindhearted:
My daughter is very private about her CF. Her close friends know (and I’m sure others do to), but if someone questions why she is doing something she will rarely say, “because I have CF”. If they ask why she is taking pills when she eats, she tells them it is to help digest her food. Or if they ask about breathing treatments she tells them she needs help clearing mucus out of her lungs. Most people don’t need to know she has CF, and they wouldn’t even know what it meant if she told them. Yeah, I know… CF awareness. But who can blame her flying under the radar. She hates being the center of attention, and would hate being pitied.
So instead of saying CF, just tell them that smoke irritates your lungs.
Kacoste38
I usually respond with ” I’m allergic to cigarette smoke”….if they ask why I make light of the fact that I have CF by saying “I have CF which is a lung disease. It’s ok though because (in my case because i’m super skinny) I can eat whatever I want and not get fat( Which is pretty much everyone’s dream). You can call me fat and I take it as a compliment.” Many of my friends (and 100% of the time guys will love this because they never get to call a woman fat) now when they see me always tell me how fat I look and it makes me laugh every time and I always say thank you.
nmw0615
I take a very different approach than previous posters. I never have tried to hide my illness, and I’m very upfront about it. I might vary in how detailed I get, but I don’t try to hide CF. when I can see people start to pity me, I just tell them not to. My life does not deserve pity. Sympathy? Yes. Empathy? Yes. Pity? No. I know this doesn’t stop some people, and I just let that go. Pity is how those people deal with tough situations. I can’t change how other people react; I can only change myself. I don’t like to be pitied, but I also understand that’s how some people deal.
LindaCrane:
I guess a lot of it it my personality I don’t lie or I guess better put “beat around the bush”. I’m very blunt person I tell it how it is and I like that about myself, so I guess thats why it always come out. It would be hard to hide due to the fact I can’t just go take a walk around the block because I’m physically unable or dance on the dance floor without getting severely winded. I guess there is just no way around it for me. its really odd how many people I do tell that know what it is though and yes if they done I can sum it up in a few short sentences. It sure does make dating hard being 26yr old and not being able to do so many activities, no one (lets be honest and i understand why) wants a sick person to fall in love with.
Good meeting yall too, talking to all of you and hearing what you have to say. I’m so glad I found and joined this site after 26 years of never talking to any other CF’er its nice to know there are people out there going through what your going through.
Singe82
I totally agree with the last poster. Tell everyone, limit the info to what you feel comfortable with, and don’t be ashamed. CF is your thing, they have their things. Don’t expect a pity party, but allow them to do what they have to do. Good luck!
Sanje:
I’m 60 and still say asthma just don’t want to get into the whole explanation thing… most people just want to make sure that coughing is not going to give them something…
So I’ve been thinking about this a lot lately and I’m so sick of the pity I get when I tell people I have Cystic Fibrosis. I’m pretty outgoing and I go to bars and meet people all the time and people who smoke always ask if I want come join them outside while they smoke and I say no. Of course they ask why I can’t just come keep them company and then I say I can’t be around the smoke. They ask why and then after I explain it in comes the pity… Just wondering if anyone has any thoughts or ways around this.
Hera:
The way that I handled it was just not to tell anyone, ever. Of course then it can come across as I’m lazy or disrespectful depending on the circumstances.
I am still very careful who I tell but I figure if I’m going to spend a lot of time with them I’d rather them pity me than think those other things. At least pity is a way to show they care.
Guess it also depends on why you told them. In the smoking case you described if it were me I would of probably just told them I had asthma, much more common and you can avoid the danger without offending them if that’s what you’re going for.
That’s what works for me, hope it helped.
dgeorgerace:
I’ve just stuck with either “I have shitty lungs” or “I have bad asthma” and people usually get it. People who are close to me understand that I have CF, not really what it is though. It’s tough. I had to explain to a client once about some pancreas issues I was dealing with and he kinda was just taken back. I am fortune enough with my lung function that I can pretend in most circumstances (except the coughing) that I’m “normal”, so it always throws people off when I’m really sick. Try not to let it bother you
Austisu:
DS has gotten a couple comments/questions on his surgical scar from his two bowel obstructions, which we forget is even there. Last winter it was from someone who saw it and asked if he’d spent time in a nicu — his twins were preemies and he must’ve seen something similar, but a few years ago we were at a graduation party at the lake and a stranger looked at ds and said “oh, did you have your appendix out”. DS said not understanding thinking she meant his intestines “they took it out and put it back in and then it came back and they had to do it again.” So this woman tries to argue with him, that he was incorrect. Yeah, argue with a 6 year old about his health experiences.
jsf75
So I’ve been thinking about this a lot lately and I’m so sick of the pity I get when I tell people I have Cystic Fibrosis. I’m pretty outgoing and I go to bars and meet people all the time and people who smoke always ask if I want come join them outside while they smoke and I say no. Of course they ask why I can’t just come keep them company and then I say I can’t be around the smoke. They ask why and then after I explain it in comes the pity… Just wondering if anyone has any thoughts or ways around this.
MSCAli24:
Everyone I tell doesn't even know what it is!
ditto. I can sum it up in less than a minute and add that I had a lung transplant and all people say with widened eyes is “oh wow!” I swear some people probably don’t even know what a lung transplant is but I really do not care what people think. Good or bad. It is what it is. I live my life. You live yours. Nice to meet you and see ya.
JosieJoe
I am probably going to get the “You just don’t get how we feel” in this thread. I have the different perspective coming from the parent point if view. My son was Dx at 4 months old. He is 19 now. He is much like the others that post here. He just doesn’t talk about it. I can’t say I blame him as well. Most people just do not get it. So the rule is a if they don’t ask we don’t tell. You see the parents also do not want a pity party. I am so sick of all “Oh I am so sorry” and If I hear one more time about how one of thier friends niece had CF but passed away…… oh make me puke. Don’t want to hear that….why do they say stuff like that? Are they trying to fill that awkward silence?
Blindhearted:
My daughter is very private about her CF. Her close friends know (and I’m sure others do to), but if someone questions why she is doing something she will rarely say, “because I have CF”. If they ask why she is taking pills when she eats, she tells them it is to help digest her food. Or if they ask about breathing treatments she tells them she needs help clearing mucus out of her lungs. Most people don’t need to know she has CF, and they wouldn’t even know what it meant if she told them. Yeah, I know… CF awareness. But who can blame her flying under the radar. She hates being the center of attention, and would hate being pitied.
So instead of saying CF, just tell them that smoke irritates your lungs.
Kacoste38
I usually respond with ” I’m allergic to cigarette smoke”….if they ask why I make light of the fact that I have CF by saying “I have CF which is a lung disease. It’s ok though because (in my case because i’m super skinny) I can eat whatever I want and not get fat( Which is pretty much everyone’s dream). You can call me fat and I take it as a compliment.” Many of my friends (and 100% of the time guys will love this because they never get to call a woman fat) now when they see me always tell me how fat I look and it makes me laugh every time and I always say thank you.
nmw0615
I take a very different approach than previous posters. I never have tried to hide my illness, and I’m very upfront about it. I might vary in how detailed I get, but I don’t try to hide CF. when I can see people start to pity me, I just tell them not to. My life does not deserve pity. Sympathy? Yes. Empathy? Yes. Pity? No. I know this doesn’t stop some people, and I just let that go. Pity is how those people deal with tough situations. I can’t change how other people react; I can only change myself. I don’t like to be pitied, but I also understand that’s how some people deal.
LindaCrane:
I guess a lot of it it my personality I don’t lie or I guess better put “beat around the bush”. I’m very blunt person I tell it how it is and I like that about myself, so I guess thats why it always come out. It would be hard to hide due to the fact I can’t just go take a walk around the block because I’m physically unable or dance on the dance floor without getting severely winded. I guess there is just no way around it for me. its really odd how many people I do tell that know what it is though and yes if they done I can sum it up in a few short sentences. It sure does make dating hard being 26yr old and not being able to do so many activities, no one (lets be honest and i understand why) wants a sick person to fall in love with.
Good meeting yall too, talking to all of you and hearing what you have to say. I’m so glad I found and joined this site after 26 years of never talking to any other CF’er its nice to know there are people out there going through what your going through.
Singe82
I totally agree with the last poster. Tell everyone, limit the info to what you feel comfortable with, and don’t be ashamed. CF is your thing, they have their things. Don’t expect a pity party, but allow them to do what they have to do. Good luck!
Sanje:
I’m 60 and still say asthma just don’t want to get into the whole explanation thing… most people just want to make sure that coughing is not going to give them something…
