Telling People

A

anonymous

New member
Hi All,

I am sure people have already posted this before so apologies in advance

But I am curious as to when, if, or if you tell people you meet you have cf? And if so, have most of the reactions been positive or negative?

Its always been a big issue for me. And I am starting to maybe wonder about taking a chance and being a little bit more open about having cf throughout my lif I can count about three friends I grew up with who knew but that was awhile back when we were all very young.

A little about me:
I am 27 -28 this year male my lung function is always between 90-100+ percent am yet to be hospitalised for cf I have cfrd as well. Have had diabetes since 2002 so far so good well controlled.

I am really active and play sports, I have worked at a gym, and gone to university, live out of home so cf hasnt impacted me too much to this day. Also enjoy travelling and I work fulltime too

I am also strict with my cf routine not that I have too many demands just creon and physio, diabetets insulin and testing ( which I all do discreetly and secretive!)

Growing up only a few people and close family members knew of my CF but didnt know much about it. When having girlfriends and dating and stuff I have always kept it a secret and I wonder if secretly I am shamed embaraassed of my cf or is it just fear of others reactions.

I want to take a chance and tell people or try it out on someone just not sure who or how. I also wonder how close to a true relationship I can have with another person being a friend or girlfriendd/wife if I cant be 100% honest with someone regarding the cf.

Do other people have these issues??? I know for some it is harder to hide than for others.

Sorry if this post is long and all over the place Id appreciate peoples thoughts or expereinces.

Jake
27
Melbourne Australia
CFRD
 
A

anonymous

New member
Hi All,

I am sure people have already posted this before so apologies in advance

But I am curious as to when, if, or if you tell people you meet you have cf? And if so, have most of the reactions been positive or negative?

Its always been a big issue for me. And I am starting to maybe wonder about taking a chance and being a little bit more open about having cf throughout my lif I can count about three friends I grew up with who knew but that was awhile back when we were all very young.

A little about me:
I am 27 -28 this year male my lung function is always between 90-100+ percent am yet to be hospitalised for cf I have cfrd as well. Have had diabetes since 2002 so far so good well controlled.

I am really active and play sports, I have worked at a gym, and gone to university, live out of home so cf hasnt impacted me too much to this day. Also enjoy travelling and I work fulltime too

I am also strict with my cf routine not that I have too many demands just creon and physio, diabetets insulin and testing ( which I all do discreetly and secretive!)

Growing up only a few people and close family members knew of my CF but didnt know much about it. When having girlfriends and dating and stuff I have always kept it a secret and I wonder if secretly I am shamed embaraassed of my cf or is it just fear of others reactions.

I want to take a chance and tell people or try it out on someone just not sure who or how. I also wonder how close to a true relationship I can have with another person being a friend or girlfriendd/wife if I cant be 100% honest with someone regarding the cf.

Do other people have these issues??? I know for some it is harder to hide than for others.

Sorry if this post is long and all over the place Id appreciate peoples thoughts or expereinces.

Jake
27
Melbourne Australia
CFRD
 
T

thelizardqueen

New member
I use to hide my CF and diabetes from people all the time. One day I woke up and wondered why I was doing that. To hide my condition to me, was like saying that I was ashamed of myself. I find that now that I tell people, I find the good friends accept it and stay around, and anyone who doens't want to understand it I don't need in my life. People always have issues with what it is I have until they find out what it is and I've explained it to them. After that they're fine.
 
T

thelizardqueen

New member
I use to hide my CF and diabetes from people all the time. One day I woke up and wondered why I was doing that. To hide my condition to me, was like saying that I was ashamed of myself. I find that now that I tell people, I find the good friends accept it and stay around, and anyone who doens't want to understand it I don't need in my life. People always have issues with what it is I have until they find out what it is and I've explained it to them. After that they're fine.
 
J

JazzysMom

New member
I think its a combination of the fear of rejection, judgement & the unknown responses. I personally have NEVER held my CF a secret. I dont want to make it sound like I am proud of the fact that I have CF, but I most certainly am not ashamed because that means I would be ashamed of me. I am one of those that will answer any ??? since I rather have U ask (even if U dont present it properly) than to walk around assuming incorrectly. There are times that I dont feel like going into detail or dont have the time to explain my cough etc. Tho it irks me that I cant. I HATE people thinking something that might be wrong in their thinking. I also never held back with my CF in relationships. I guess I figure if they like me enough they will stick around to get a better idea of what to expect & by then I have them hooked & they dont want to leave. A little pat on the back to myself there....Seriously I would rather know right up front they arent the type of person to handle a chronic illness at all. I dont think its "fair" to let someone into your world & they dont even know they stepped thru the door!
 
J

JazzysMom

New member
I think its a combination of the fear of rejection, judgement & the unknown responses. I personally have NEVER held my CF a secret. I dont want to make it sound like I am proud of the fact that I have CF, but I most certainly am not ashamed because that means I would be ashamed of me. I am one of those that will answer any ??? since I rather have U ask (even if U dont present it properly) than to walk around assuming incorrectly. There are times that I dont feel like going into detail or dont have the time to explain my cough etc. Tho it irks me that I cant. I HATE people thinking something that might be wrong in their thinking. I also never held back with my CF in relationships. I guess I figure if they like me enough they will stick around to get a better idea of what to expect & by then I have them hooked & they dont want to leave. A little pat on the back to myself there....Seriously I would rather know right up front they arent the type of person to handle a chronic illness at all. I dont think its "fair" to let someone into your world & they dont even know they stepped thru the door!
 
A

anonymous

New member
Hi Jake,

Before I meet my husband, all my boyfriends left me when I told them I had CF. I knew I found the right guy when I told him I had CF and he said so. He didn't care. He said it didn't change who I was. Now, I am pretty up front with people about my CF. I figured if people don't ubderstand my CF, I don't need them in my life. I get a sense of pride now when I tell people I have CF. When I was diagnosised I was told not to expect to live past 18. Now I am 30. I take pride that I can work full time, have a husband, raise 3 dogs, keep up with household duties and maintain my CF. I don't miss much work and try to stay out of the hospital. I am proud of what I have accomplished and am not ashamed to tell anyone about my CF because I know I AM A SURVIVER!
 
A

anonymous

New member
Hi Jake,

Before I meet my husband, all my boyfriends left me when I told them I had CF. I knew I found the right guy when I told him I had CF and he said so. He didn't care. He said it didn't change who I was. Now, I am pretty up front with people about my CF. I figured if people don't ubderstand my CF, I don't need them in my life. I get a sense of pride now when I tell people I have CF. When I was diagnosised I was told not to expect to live past 18. Now I am 30. I take pride that I can work full time, have a husband, raise 3 dogs, keep up with household duties and maintain my CF. I don't miss much work and try to stay out of the hospital. I am proud of what I have accomplished and am not ashamed to tell anyone about my CF because I know I AM A SURVIVER!
 
C

coltsfan715

New member
When I was younger I hated telling people. My close friends knew but that was really it. I dated one guy in high school that I didn't tell he ended up finding out through mutual friends and asked me about it. When we broke up he gave one piece of advice - which though he was a pain it made me rethink things. He told me that I may want to tell my next b/f before we get real serious that way they can know what is going on if I don't feel well, end up sick or in the hospital or need assistance or anything.
Since I graduated H.S. I have been more open about it. I realized that my fear of people not wanting to be around me or people treating me different (this was a big one for me) was in my head. Pretty much all of my friends are aware of the situation - whether or not they fully understand CF is a different story I answer questions the best I can, but if they don't ask who knows if they get it or not. Most people have questions initially, so I would be prepared to answer basic what is it, what does it affect, how long have you had it/is it genetic questions if and when you tell people.
My friends have never treated me different in a bad way. Sometimes they tend to be a little more protective of me, but other than that they treat me just like everyone else because I do not want to be treated any different. In relationships I have had one guy have an issue with CF. He stuck around and tried to work through it, but couldn't get past some of the long term affects CF will probably have on me so we went our separate ways - no big deal it just wasn't meant to be. Besides after we broke up I met my fiance and we started dating.
I would take a leap of faith if there is someone you want to tell. Most people deserve more credit than we initially give them - I am saying that from experience. I didn't think some of my friends would get it or would be okay with it and the ones I thought would have a hard time with it actually handled it the best. Also I think about this - imagine what things some of your friends might be going through that they don't want to tell anyone either - maybe you making the first step will help someone you know make a first step of their own. I had several friends with health problems that I wasn't aware of until I told them I had CF and then they told me they had Lyme's Disease, Diabetes, Bi-Polar Disorder, Endomytriosis (sp?) and Anorexia even and so on, so it really can be amazing the things that people hold in.

Good Luck with it.
I am sure everything will work out fine regardless of what you decide to do.

Lindsey
 
C

coltsfan715

New member
When I was younger I hated telling people. My close friends knew but that was really it. I dated one guy in high school that I didn't tell he ended up finding out through mutual friends and asked me about it. When we broke up he gave one piece of advice - which though he was a pain it made me rethink things. He told me that I may want to tell my next b/f before we get real serious that way they can know what is going on if I don't feel well, end up sick or in the hospital or need assistance or anything.
Since I graduated H.S. I have been more open about it. I realized that my fear of people not wanting to be around me or people treating me different (this was a big one for me) was in my head. Pretty much all of my friends are aware of the situation - whether or not they fully understand CF is a different story I answer questions the best I can, but if they don't ask who knows if they get it or not. Most people have questions initially, so I would be prepared to answer basic what is it, what does it affect, how long have you had it/is it genetic questions if and when you tell people.
My friends have never treated me different in a bad way. Sometimes they tend to be a little more protective of me, but other than that they treat me just like everyone else because I do not want to be treated any different. In relationships I have had one guy have an issue with CF. He stuck around and tried to work through it, but couldn't get past some of the long term affects CF will probably have on me so we went our separate ways - no big deal it just wasn't meant to be. Besides after we broke up I met my fiance and we started dating.
I would take a leap of faith if there is someone you want to tell. Most people deserve more credit than we initially give them - I am saying that from experience. I didn't think some of my friends would get it or would be okay with it and the ones I thought would have a hard time with it actually handled it the best. Also I think about this - imagine what things some of your friends might be going through that they don't want to tell anyone either - maybe you making the first step will help someone you know make a first step of their own. I had several friends with health problems that I wasn't aware of until I told them I had CF and then they told me they had Lyme's Disease, Diabetes, Bi-Polar Disorder, Endomytriosis (sp?) and Anorexia even and so on, so it really can be amazing the things that people hold in.

Good Luck with it.
I am sure everything will work out fine regardless of what you decide to do.

Lindsey
 
L

littledebbie

New member
Hi, I tell people a little at a time. I'm not ashamed, embarressed, etc. It's just personal to me. I tell peopel I'm close to and people I want to be close to, but at a pace I'm comportable with. Usually when getting to know someone I'm dating, I tell them a little about it and that I'll tell them more as we get to know each other, it's kind of a trust issue. i want someone to understand what it means when i say I have CF. Most people have never heard of it so it can take a while before they get a full understanding, it's almost like basically telling someone "hey I'm dying" which really we all are, but since our health is such a constant reminder of that fact it feels a little different sometimes. Like I said for me it's personal.

I've had a lot of different reactions, only one guy split because he couldn't hang, (the rest ran away becasue I'm a pill..ha ha) Others have thought it over and decided it was no biggy, one said "well I've thought it over and if i get to keep riding my motorcycle I'll be cool with this CF thing". He's still a friend <img src="i/expressions/face-icon-small-smile.gif" border="0"> I've never had a friend that was not understanding, people will probably be cooler about it than you think, you have to lay some trust out there sometimes, if you get kicked in the face a few times, it will be worth it for the few times you come up with a true friend.....or love ***big sigh***
 
L

littledebbie

New member
Hi, I tell people a little at a time. I'm not ashamed, embarressed, etc. It's just personal to me. I tell peopel I'm close to and people I want to be close to, but at a pace I'm comportable with. Usually when getting to know someone I'm dating, I tell them a little about it and that I'll tell them more as we get to know each other, it's kind of a trust issue. i want someone to understand what it means when i say I have CF. Most people have never heard of it so it can take a while before they get a full understanding, it's almost like basically telling someone "hey I'm dying" which really we all are, but since our health is such a constant reminder of that fact it feels a little different sometimes. Like I said for me it's personal.

I've had a lot of different reactions, only one guy split because he couldn't hang, (the rest ran away becasue I'm a pill..ha ha) Others have thought it over and decided it was no biggy, one said "well I've thought it over and if i get to keep riding my motorcycle I'll be cool with this CF thing". He's still a friend <img src="i/expressions/face-icon-small-smile.gif" border="0"> I've never had a friend that was not understanding, people will probably be cooler about it than you think, you have to lay some trust out there sometimes, if you get kicked in the face a few times, it will be worth it for the few times you come up with a true friend.....or love ***big sigh***
 
A

anonymous

New member
Hi JAke

I would start out telling someone who appears intelligent and caring. I would not tell someone just for the sake. Before my transplant if I would have a coughing attack in a public place, I would say do not worry I have CF..... because i would not want them to worry that they could catch something. They would smile. I remember the first person I told I had cf I could not believe the feeling. I was seventeen in the NY Catskills and the DJ liked me, We walked together just talking one night and he said, "There is something that you are not telling me" We were not friends and he did not know me at all but he had a great sense for people's feelings. I remember telling him I have CF and his reaction was "so" how does that make you different. i cannot remember the conversation as I am 46 today and this was so many centuries ago lol but I will never forget the feeling. I remember telling my sister that I could fly and for days I felt as if I was flying and felt I was an amazing ego trip. I did not date this man as he was so much older but he was a great sounding board and great for my confidence. I had a much easier time telling guys when I started to date because of Mr. DJ HE must be an oldie by now.

Since your CF is so healthy it will not be an issue for you but since you are really smart and take great care of yourself you owe it to yourself and to the person's who you trust or want to trust to let them know.

Have no fear just take a few chances so you can enhance your own life. You might feel more accepting of yourself. A bonding experience is what I am talking about.
TAke Care
Risa
 
A

anonymous

New member
Hi JAke

I would start out telling someone who appears intelligent and caring. I would not tell someone just for the sake. Before my transplant if I would have a coughing attack in a public place, I would say do not worry I have CF..... because i would not want them to worry that they could catch something. They would smile. I remember the first person I told I had cf I could not believe the feeling. I was seventeen in the NY Catskills and the DJ liked me, We walked together just talking one night and he said, "There is something that you are not telling me" We were not friends and he did not know me at all but he had a great sense for people's feelings. I remember telling him I have CF and his reaction was "so" how does that make you different. i cannot remember the conversation as I am 46 today and this was so many centuries ago lol but I will never forget the feeling. I remember telling my sister that I could fly and for days I felt as if I was flying and felt I was an amazing ego trip. I did not date this man as he was so much older but he was a great sounding board and great for my confidence. I had a much easier time telling guys when I started to date because of Mr. DJ HE must be an oldie by now.

Since your CF is so healthy it will not be an issue for you but since you are really smart and take great care of yourself you owe it to yourself and to the person's who you trust or want to trust to let them know.

Have no fear just take a few chances so you can enhance your own life. You might feel more accepting of yourself. A bonding experience is what I am talking about.
TAke Care
Risa
 
A

anonymous

New member
Hey ALL,

Its Jake the orginal poster!

Thanks to all for sharing your stories and experiences it helps a great deal this is a great web community and I am sure I will take some of the advice given.

Thanks Liz, Melissa, Lindsey, Debbie and Risa its heartwarming to know people like you are all out there and we are not alone in or struggles with CF
 
A

anonymous

New member
Hey ALL,

Its Jake the orginal poster!

Thanks to all for sharing your stories and experiences it helps a great deal this is a great web community and I am sure I will take some of the advice given.

Thanks Liz, Melissa, Lindsey, Debbie and Risa its heartwarming to know people like you are all out there and we are not alone in or struggles with CF
 
W

wuffles

New member
I judge on a person-to-person basis whether they should know or not <img src="i/expressions/face-icon-small-smile.gif" border="0"> My criteria are that I feel comfortable telling them, and I think that they will feel comfortable knowing <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

wuffles

New member
I judge on a person-to-person basis whether they should know or not <img src="i/expressions/face-icon-small-smile.gif" border="0"> My criteria are that I feel comfortable telling them, and I think that they will feel comfortable knowing <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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