desperately need advice

rayoflight · Dec 16, 2010

Hey guys,well, this is a big issue for me, I wrote about this in my first post here. About no one knowing about my cf except my parents and close family. absolutely no one knows. When I was a kid I didn't completely understand what I have, and then only thing I had to do was to take my Creon before meal, I had luck that my lungs were great because I was always active, swimming , running, I went to dance classes... When I was at 5th grade I got sick more often, every month with bronchitis and other stuff, my condition got worse, missed school a lot and I started to have daily inhalations that are now my usual daily routine. That was the first time I realized what I really have, that I am sick, and i do have a serious condition and that I have to take care of myself. But, I didn't want to tell anyone, I was so afraid that no one will play with me, you know how kids can be very cruel. I wasn't the most popular girl in school .but people liked me, and I didn't want them to see me in a different light, or as a sick person or stop hanging out with me.( I now completely understand that it was ridiculous that I thought that way, now I know my parents wouldn't abandon me). My parents used to tell me that I don't have to be afraid, that my friends wont abandon me just because I have cf, but I was very strong willed and stubborn even then and decided that I am not gonna tell anyone. Well, here I am 21 years old, and still no one knows. I still don't want to tell the whole world or some random people and friends, but what bothers me is that I have a best friend, we are friends for ten years now and she doesn't know. And we share absolutely everything, I mean we are very, very close. And I know someone might say "how is it possible that she doesn't know" but I always used to hide to take my Creon or lie that it was for something else. When we went to the sea together I took my Creons in front of her and told her I have a problem digesting food and I must take them but I never told her thats been like that forever. And she never saw me do inhalations, I do them at my home, of course. I tell her everything else, I mean everything, and I kinda feel bad about hiding this. I never thought much about this, I always took care of my health, took my Creons, inhalations, went regulary to appointments at the doctor, workout but I also lived normal as anyone else, hang out with my friends, travel, everything,never felt any different and no one ever noticed that I have a disease. But, now, I don't know anymore, I really think I should tell this to my best friend because she knows everything and the fact that she doesn't know this ,feels weird, you know. But I am so scared how will she react, I am not scared that she will reject me or something, but I don't want her to get mad that I kept this from her for so long, I mean, its gonna be a shock, and most of all I don't want her to pity me, I was ALWAYS so scared and always hated that, for someone to pity me, I just don't want that, never. I know this girl who has diabetes since birth and she is open a about it, but every time someone says "oh, do you know she has diabetes" people respond with "oh poor her," I don't want that. I want to be treated as everyone else, because I feel normal and I wont benefit form pity. Its very complex, it would seem like I completely ignore my situation or am in denial about my illness but that's not the case, like I said I know what I have and I know I must take care of myself and I do that, I never neglected my health, NEVER.
I just don't know what to do, I am so scared that I am not ready to take this step and tell it to her, I mean things would change. my life and a relationship with her would change( I don't mean for the worst) but It would be different. I had huge problems with anxiety last year, and panic attacks, I am doing good now, but I am still so vulnerable. I don't know If I am strong enough to take this step and cope with change that will come. I tell myself I am a fraud, like I am living 2 separate lives, but again, I have a right to tell or not tell anyone.
I thought maybe I should start slowly, tell her that I have some problems with chest, lungs and that doctors told me I should start inhalations and start from that, I just don't know...
I really, really need an advice and hope someone can help me. hug to all<img src="i/expressions/face-icon-small-smile.gif" border="0">

rayoflight · Dec 16, 2010

Hey guys,well, this is a big issue for me, I wrote about this in my first post here. About no one knowing about my cf except my parents and close family. absolutely no one knows. When I was a kid I didn't completely understand what I have, and then only thing I had to do was to take my Creon before meal, I had luck that my lungs were great because I was always active, swimming , running, I went to dance classes... When I was at 5th grade I got sick more often, every month with bronchitis and other stuff, my condition got worse, missed school a lot and I started to have daily inhalations that are now my usual daily routine. That was the first time I realized what I really have, that I am sick, and i do have a serious condition and that I have to take care of myself. But, I didn't want to tell anyone, I was so afraid that no one will play with me, you know how kids can be very cruel. I wasn't the most popular girl in school .but people liked me, and I didn't want them to see me in a different light, or as a sick person or stop hanging out with me.( I now completely understand that it was ridiculous that I thought that way, now I know my parents wouldn't abandon me). My parents used to tell me that I don't have to be afraid, that my friends wont abandon me just because I have cf, but I was very strong willed and stubborn even then and decided that I am not gonna tell anyone. Well, here I am 21 years old, and still no one knows. I still don't want to tell the whole world or some random people and friends, but what bothers me is that I have a best friend, we are friends for ten years now and she doesn't know. And we share absolutely everything, I mean we are very, very close. And I know someone might say "how is it possible that she doesn't know" but I always used to hide to take my Creon or lie that it was for something else. When we went to the sea together I took my Creons in front of her and told her I have a problem digesting food and I must take them but I never told her thats been like that forever. And she never saw me do inhalations, I do them at my home, of course. I tell her everything else, I mean everything, and I kinda feel bad about hiding this. I never thought much about this, I always took care of my health, took my Creons, inhalations, went regulary to appointments at the doctor, workout but I also lived normal as anyone else, hang out with my friends, travel, everything,never felt any different and no one ever noticed that I have a disease. But, now, I don't know anymore, I really think I should tell this to my best friend because she knows everything and the fact that she doesn't know this ,feels weird, you know. But I am so scared how will she react, I am not scared that she will reject me or something, but I don't want her to get mad that I kept this from her for so long, I mean, its gonna be a shock, and most of all I don't want her to pity me, I was ALWAYS so scared and always hated that, for someone to pity me, I just don't want that, never. I know this girl who has diabetes since birth and she is open a about it, but every time someone says "oh, do you know she has diabetes" people respond with "oh poor her," I don't want that. I want to be treated as everyone else, because I feel normal and I wont benefit form pity. Its very complex, it would seem like I completely ignore my situation or am in denial about my illness but that's not the case, like I said I know what I have and I know I must take care of myself and I do that, I never neglected my health, NEVER.
I just don't know what to do, I am so scared that I am not ready to take this step and tell it to her, I mean things would change. my life and a relationship with her would change( I don't mean for the worst) but It would be different. I had huge problems with anxiety last year, and panic attacks, I am doing good now, but I am still so vulnerable. I don't know If I am strong enough to take this step and cope with change that will come. I tell myself I am a fraud, like I am living 2 separate lives, but again, I have a right to tell or not tell anyone.
I thought maybe I should start slowly, tell her that I have some problems with chest, lungs and that doctors told me I should start inhalations and start from that, I just don't know...
I really, really need an advice and hope someone can help me. hug to all<img src="i/expressions/face-icon-small-smile.gif" border="0">

rayoflight · Dec 16, 2010

Hey guys,well, this is a big issue for me, I wrote about this in my first post here. About no one knowing about my cf except my parents and close family. absolutely no one knows. When I was a kid I didn't completely understand what I have, and then only thing I had to do was to take my Creon before meal, I had luck that my lungs were great because I was always active, swimming , running, I went to dance classes... When I was at 5th grade I got sick more often, every month with bronchitis and other stuff, my condition got worse, missed school a lot and I started to have daily inhalations that are now my usual daily routine. That was the first time I realized what I really have, that I am sick, and i do have a serious condition and that I have to take care of myself. But, I didn't want to tell anyone, I was so afraid that no one will play with me, you know how kids can be very cruel. I wasn't the most popular girl in school .but people liked me, and I didn't want them to see me in a different light, or as a sick person or stop hanging out with me.( I now completely understand that it was ridiculous that I thought that way, now I know my parents wouldn't abandon me). My parents used to tell me that I don't have to be afraid, that my friends wont abandon me just because I have cf, but I was very strong willed and stubborn even then and decided that I am not gonna tell anyone. Well, here I am 21 years old, and still no one knows. I still don't want to tell the whole world or some random people and friends, but what bothers me is that I have a best friend, we are friends for ten years now and she doesn't know. And we share absolutely everything, I mean we are very, very close. And I know someone might say "how is it possible that she doesn't know" but I always used to hide to take my Creon or lie that it was for something else. When we went to the sea together I took my Creons in front of her and told her I have a problem digesting food and I must take them but I never told her thats been like that forever. And she never saw me do inhalations, I do them at my home, of course. I tell her everything else, I mean everything, and I kinda feel bad about hiding this. I never thought much about this, I always took care of my health, took my Creons, inhalations, went regulary to appointments at the doctor, workout but I also lived normal as anyone else, hang out with my friends, travel, everything,never felt any different and no one ever noticed that I have a disease. But, now, I don't know anymore, I really think I should tell this to my best friend because she knows everything and the fact that she doesn't know this ,feels weird, you know. But I am so scared how will she react, I am not scared that she will reject me or something, but I don't want her to get mad that I kept this from her for so long, I mean, its gonna be a shock, and most of all I don't want her to pity me, I was ALWAYS so scared and always hated that, for someone to pity me, I just don't want that, never. I know this girl who has diabetes since birth and she is open a about it, but every time someone says "oh, do you know she has diabetes" people respond with "oh poor her," I don't want that. I want to be treated as everyone else, because I feel normal and I wont benefit form pity. Its very complex, it would seem like I completely ignore my situation or am in denial about my illness but that's not the case, like I said I know what I have and I know I must take care of myself and I do that, I never neglected my health, NEVER.
 I just don't know what to do, I am so scared that I am not ready to take this step and tell it to her, I mean things would change. my life and a relationship with her would change( I don't mean for the worst) but It would be different. I had huge problems with anxiety last year, and panic attacks, I am doing good now, but I am still so vulnerable. I don't know If I am strong enough to take this step and cope with change that will come. I tell myself I am a fraud, like I am living 2 separate lives, but again, I have a right to tell or not tell anyone.
 I thought maybe I should start slowly, tell her that I have some problems with chest, lungs and that doctors told me I should start inhalations and start from that, I just don't know...
 I really, really need an advice and hope someone can help me. hug to all<img src="i/expressions/face-icon-small-smile.gif" border="0">

mag6125 · Dec 16, 2010

It can definitely be hard to tell someone you've known for a long time about CF. I know how you feel to some extent, I have several friends who I've known for years that still don't know I have CF and I'm waiting for transplant now, so I'm facing the same thing. How do I tell them I'm waiting for a lung transplant when they knew nothing about my CF to begin with. On the other hand I have some friends that I've gotten very close to over the past couple of years who knew I was sick but not much more, and lately with being more sick and having to go through the whole transplant eval process its actually kind of helped me to open up and be more honest with them. I guess I have kind of levels of confiding about my health, my best friend who happens to be my ex is actually the only friend who knows absolutely everything and that's because he's been through a lot of it with me, going to doctor's appointments and hospital stays with me. I still talk to him after every doctor's appointment I have to update him and talk things through. I know you're worried about telling your friend about everything but having someone besides family that you can really talk to about things is a huge support. My best friend is my sounding board for everything and when things get tough he's the one who keeps me sane.

I'd say be honest with your friend and tell her that you've kept it a secret because you don't let it define you as a person. I'm sure if you tell her about your fears about being pitied or treated differently she'll understand, its even ok to say you were embarrassed about having to take medicine in front of people, I was like that growing up and still am to some extent. You could say that you are choosing to tell her now because there are things about your health that are changing. I guess these are just a few of my ideas, I don't know if it will help at all. But you are definitely not alone. If you figure out a way for me to explain a lung transplant to someone who knows nothing about my CF let me know <img src="i/expressions/face-icon-small-wink.gif" border="0">

mag6125 · Dec 16, 2010

It can definitely be hard to tell someone you've known for a long time about CF. I know how you feel to some extent, I have several friends who I've known for years that still don't know I have CF and I'm waiting for transplant now, so I'm facing the same thing. How do I tell them I'm waiting for a lung transplant when they knew nothing about my CF to begin with. On the other hand I have some friends that I've gotten very close to over the past couple of years who knew I was sick but not much more, and lately with being more sick and having to go through the whole transplant eval process its actually kind of helped me to open up and be more honest with them. I guess I have kind of levels of confiding about my health, my best friend who happens to be my ex is actually the only friend who knows absolutely everything and that's because he's been through a lot of it with me, going to doctor's appointments and hospital stays with me. I still talk to him after every doctor's appointment I have to update him and talk things through. I know you're worried about telling your friend about everything but having someone besides family that you can really talk to about things is a huge support. My best friend is my sounding board for everything and when things get tough he's the one who keeps me sane.

I'd say be honest with your friend and tell her that you've kept it a secret because you don't let it define you as a person. I'm sure if you tell her about your fears about being pitied or treated differently she'll understand, its even ok to say you were embarrassed about having to take medicine in front of people, I was like that growing up and still am to some extent. You could say that you are choosing to tell her now because there are things about your health that are changing. I guess these are just a few of my ideas, I don't know if it will help at all. But you are definitely not alone. If you figure out a way for me to explain a lung transplant to someone who knows nothing about my CF let me know <img src="i/expressions/face-icon-small-wink.gif" border="0">

mag6125 · Dec 16, 2010

It can definitely be hard to tell someone you've known for a long time about CF. I know how you feel to some extent, I have several friends who I've known for years that still don't know I have CF and I'm waiting for transplant now, so I'm facing the same thing. How do I tell them I'm waiting for a lung transplant when they knew nothing about my CF to begin with. On the other hand I have some friends that I've gotten very close to over the past couple of years who knew I was sick but not much more, and lately with being more sick and having to go through the whole transplant eval process its actually kind of helped me to open up and be more honest with them. I guess I have kind of levels of confiding about my health, my best friend who happens to be my ex is actually the only friend who knows absolutely everything and that's because he's been through a lot of it with me, going to doctor's appointments and hospital stays with me. I still talk to him after every doctor's appointment I have to update him and talk things through. I know you're worried about telling your friend about everything but having someone besides family that you can really talk to about things is a huge support. My best friend is my sounding board for everything and when things get tough he's the one who keeps me sane.
 
 I'd say be honest with your friend and tell her that you've kept it a secret because you don't let it define you as a person. I'm sure if you tell her about your fears about being pitied or treated differently she'll understand, its even ok to say you were embarrassed about having to take medicine in front of people, I was like that growing up and still am to some extent. You could say that you are choosing to tell her now because there are things about your health that are changing. I guess these are just a few of my ideas, I don't know if it will help at all. But you are definitely not alone. If you figure out a way for me to explain a lung transplant to someone who knows nothing about my CF let me know <img src="i/expressions/face-icon-small-wink.gif" border="0">

welshwitch · Dec 16, 2010

Hello!

I can perhaps shed some light on this <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm 31, and struggled with this issue all my life.

For the longest time I felt incredibly guilty that my entire outer circle, college friends, and work friends didn't know about my condition. I would beat myself up about it and feel like a horrible friend.

THe only people who really knew what was going on was my family, close (since kindergarten) friends, and my boyfriend.

Eventually, I made a huge discovery. (Note: I went to a counselor to talk some of this out, I HIGHLY RECOMMEND IT!!!!) The discovery was this:

I felt like my CF made me of less value as a person.

Over time, I realized that CF is NOT MY FAULT and the only thing I can do is TAKE CARE OF MYSELF and that my friends LOVE ME for who I am (okay, this is all sounding completely cliche, but it's true!)

I talked to my CLOSE friends about it, but I no longer feel the need to broadcast it to everyone. The people who need to know, know. The people who don't, don't. In due time, if stuff comes up, I will fill people in, but only if they need to know.

The biggest lesson I learned was that I had to really start loving myself in spite of my CF and that everything else would follow. The guilt, fear, and feeling like I'm living a double life has eradicated.

I'm lucky too, 'cause my PFTs are still in the 100s and I've never been in the hospital! Which helps. But again, if things were to change I would be OK with letting those who need to know what's going on.

Again, talk to a counselor! And eventually you will feel safe enough to let your best friend know what's going on. You know deep in your heart that it won't change that she loves you.

Just my 2 cents. Feel free to write anytime!

welshwitch · Dec 16, 2010

Hello!

I can perhaps shed some light on this <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm 31, and struggled with this issue all my life.

For the longest time I felt incredibly guilty that my entire outer circle, college friends, and work friends didn't know about my condition. I would beat myself up about it and feel like a horrible friend.

THe only people who really knew what was going on was my family, close (since kindergarten) friends, and my boyfriend.

Eventually, I made a huge discovery. (Note: I went to a counselor to talk some of this out, I HIGHLY RECOMMEND IT!!!!) The discovery was this:

I felt like my CF made me of less value as a person.

Over time, I realized that CF is NOT MY FAULT and the only thing I can do is TAKE CARE OF MYSELF and that my friends LOVE ME for who I am (okay, this is all sounding completely cliche, but it's true!)

I talked to my CLOSE friends about it, but I no longer feel the need to broadcast it to everyone. The people who need to know, know. The people who don't, don't. In due time, if stuff comes up, I will fill people in, but only if they need to know.

The biggest lesson I learned was that I had to really start loving myself in spite of my CF and that everything else would follow. The guilt, fear, and feeling like I'm living a double life has eradicated.

I'm lucky too, 'cause my PFTs are still in the 100s and I've never been in the hospital! Which helps. But again, if things were to change I would be OK with letting those who need to know what's going on.

Again, talk to a counselor! And eventually you will feel safe enough to let your best friend know what's going on. You know deep in your heart that it won't change that she loves you.

Just my 2 cents. Feel free to write anytime!

welshwitch · Dec 16, 2010

Hello!
 
 I can perhaps shed some light on this <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 I'm 31, and struggled with this issue all my life.
 
 For the longest time I felt incredibly guilty that my entire outer circle, college friends, and work friends didn't know about my condition. I would beat myself up about it and feel like a horrible friend.
 
 THe only people who really knew what was going on was my family, close (since kindergarten) friends, and my boyfriend.
 
 Eventually, I made a huge discovery. (Note: I went to a counselor to talk some of this out, I HIGHLY RECOMMEND IT!!!!) The discovery was this:
 
 I felt like my CF made me of less value as a person.
 
 Over time, I realized that CF is NOT MY FAULT and the only thing I can do is TAKE CARE OF MYSELF and that my friends LOVE ME for who I am (okay, this is all sounding completely cliche, but it's true!)
 
 I talked to my CLOSE friends about it, but I no longer feel the need to broadcast it to everyone. The people who need to know, know. The people who don't, don't. In due time, if stuff comes up, I will fill people in, but only if they need to know.
 
 The biggest lesson I learned was that I had to really start loving myself in spite of my CF and that everything else would follow. The guilt, fear, and feeling like I'm living a double life has eradicated.
 
 I'm lucky too, 'cause my PFTs are still in the 100s and I've never been in the hospital! Which helps. But again, if things were to change I would be OK with letting those who need to know what's going on.
 
 Again, talk to a counselor! And eventually you will feel safe enough to let your best friend know what's going on. You know deep in your heart that it won't change that she loves you.
 
 Just my 2 cents. Feel free to write anytime!

AleksandraKaczynska · Dec 16, 2010

Hi, I'm not cf - my daughter is. I always wonder do i have the right to tell others about her cf.
After 3 years I found out I must... to protect her. Some people ask questions, some pitty at first - but, after seeing Joanna - they smile - say she looks great and start treating her normal - apart from not comming over with health issues - also I usually don't have to feel bad when I ask them to wash their hands or something. This, offcourse is much more complicated - but the truth is the only way I can protect her and keep in touch with firends.
I think you should tell your friend - the whole thing about your cf - so she won't have to go to interent for advice or read articles on her own. I can also see you need to tell her.
Don't take it step by step - it won't do - it's better to tell her how it is with you - don't make her feel as you don't trust her. And I think you may trust her not to tell others.
Maybe you can ask your mom or dad to be close to you when you start talking - if it'll make you feel better - I know I prefere doing such talks alone - but everybody is different. Maybe ask them just to keep silent but be there.... I don't know. I know I can count on my mom - but I can't on my dad since he would want to take over the talk and do it for me - and he's no expert on my daughters cf....
I have a friend from school- propobly with cf - living with someone who has it also - she hides it from the world - and even won't tell me - and she knows my daughter is sick. She won't come over - and she is the one feeling quilty about her being different. When I said about Joanna I could see her go pale and that she wanted to run away - since then she never vistis - and I can see she is just a very scared person. I guess if she was frank with it - we could still be friends....and she could be a great advice for me also...
I guess she was scared to tell when she was younger and she's even more scared now.... <img src="i/expressions/face-icon-small-sad.gif" border="0">
I don't think you need this. Besides - it's not like telling the whole world about this - this is your closest friend. We all get scared - even moms with children with cf.
Many warm hugs from a very cold Poland <img src="i/expressions/face-icon-small-happy.gif" border="0">

AleksandraKaczynska · Dec 16, 2010

Hi, I'm not cf - my daughter is. I always wonder do i have the right to tell others about her cf.
After 3 years I found out I must... to protect her. Some people ask questions, some pitty at first - but, after seeing Joanna - they smile - say she looks great and start treating her normal - apart from not comming over with health issues - also I usually don't have to feel bad when I ask them to wash their hands or something. This, offcourse is much more complicated - but the truth is the only way I can protect her and keep in touch with firends.
I think you should tell your friend - the whole thing about your cf - so she won't have to go to interent for advice or read articles on her own. I can also see you need to tell her.
Don't take it step by step - it won't do - it's better to tell her how it is with you - don't make her feel as you don't trust her. And I think you may trust her not to tell others.
Maybe you can ask your mom or dad to be close to you when you start talking - if it'll make you feel better - I know I prefere doing such talks alone - but everybody is different. Maybe ask them just to keep silent but be there.... I don't know. I know I can count on my mom - but I can't on my dad since he would want to take over the talk and do it for me - and he's no expert on my daughters cf....
I have a friend from school- propobly with cf - living with someone who has it also - she hides it from the world - and even won't tell me - and she knows my daughter is sick. She won't come over - and she is the one feeling quilty about her being different. When I said about Joanna I could see her go pale and that she wanted to run away - since then she never vistis - and I can see she is just a very scared person. I guess if she was frank with it - we could still be friends....and she could be a great advice for me also...
I guess she was scared to tell when she was younger and she's even more scared now.... <img src="i/expressions/face-icon-small-sad.gif" border="0">
I don't think you need this. Besides - it's not like telling the whole world about this - this is your closest friend. We all get scared - even moms with children with cf.
Many warm hugs from a very cold Poland <img src="i/expressions/face-icon-small-happy.gif" border="0">

AleksandraKaczynska · Dec 16, 2010

Hi, I'm not cf - my daughter is. I always wonder do i have the right to tell others about her cf.
 After 3 years I found out I must... to protect her. Some people ask questions, some pitty at first - but, after seeing Joanna - they smile - say she looks great and start treating her normal - apart from not comming over with health issues - also I usually don't have to feel bad when I ask them to wash their hands or something. This, offcourse is much more complicated - but the truth is the only way I can protect her and keep in touch with firends.
 I think you should tell your friend - the whole thing about your cf - so she won't have to go to interent for advice or read articles on her own. I can also see you need to tell her.
 Don't take it step by step - it won't do - it's better to tell her how it is with you - don't make her feel as you don't trust her. And I think you may trust her not to tell others.
 Maybe you can ask your mom or dad to be close to you when you start talking - if it'll make you feel better - I know I prefere doing such talks alone - but everybody is different. Maybe ask them just to keep silent but be there.... I don't know. I know I can count on my mom - but I can't on my dad since he would want to take over the talk and do it for me - and he's no expert on my daughters cf....
 I have a friend from school- propobly with cf - living with someone who has it also - she hides it from the world - and even won't tell me - and she knows my daughter is sick. She won't come over - and she is the one feeling quilty about her being different. When I said about Joanna I could see her go pale and that she wanted to run away - since then she never vistis - and I can see she is just a very scared person. I guess if she was frank with it - we could still be friends....and she could be a great advice for me also...
 I guess she was scared to tell when she was younger and she's even more scared now.... <img src="i/expressions/face-icon-small-sad.gif" border="0">
 I don't think you need this. Besides - it's not like telling the whole world about this - this is your closest friend. We all get scared - even moms with children with cf.
 Many warm hugs from a very cold Poland <img src="i/expressions/face-icon-small-happy.gif" border="0">

rayoflight · Dec 16, 2010

First of all, thank you all for taking time to give me advice, I cant explain how much it means to me. It's 11 am where I live and I still haven't slept. I just keep imagining myself telling her, her reaction and it's just feels so scary and unreal, I mean I kept this from her for 10 years, and now its gonna change, its always something I imagined will eventually happen one day, but in a distant future, not NOW, if you know what I mean. We have a very special relationship, I tell her absolutely everything, even the most intimate things and problems in my family, love life, when I battled OCD and panic attacks, but I never told her this. And I know its gonna be a huge shock for her! But, like I said I never wanted to tell anyone or even felt the need, but for a year now i felt that I should tell her, because after my family I love her the most and she is the only person I trust.
But what scares me, Aleksandra, you said I should tell her so she wont go on the internet, but I know her, and I am 100% sure she will google like crazy( just like I would do if I was in her position). And on google she will find a lot of scary information, I mean even the name "cystic fibrosis" sound awful.lol. And she will read about life expectancy of 37 and probably freak out, I mean, then what? It's just so complicated. I mean, there are some scary things about our condition that I just found out going to forums that I never really understood and knew before, imagine what it will feel like for her... I am afraid if she reads all that, that she will live in fear that I might die every second ( not literally , I am sure you know what I mean) and then I would feel awful about that.
I think I should tell her that I have lung problems, that they are weak ( I did mention once that when i was a kid I had problems with lungs) I can get infections more easily than other people and because of that I must take inhalations and take care of myself. And then see how that goes and then slowly, after time, add more information and tell her the name and heavier stuff. What do you think about that? I think that would be easier for me...
mag 6125- i really would love to have her like you have your ex to go to doctors with me, i would love to talk to her and have her support and not hide every time I go to doctors and lie. It would be such a relief. And I wish you all the best, you have support of your friend, if you told him,you can tell other people about transplant, you can do it!
hugs<img src="i/expressions/face-icon-small-smile.gif" border="0">

rayoflight · Dec 16, 2010

First of all, thank you all for taking time to give me advice, I cant explain how much it means to me. It's 11 am where I live and I still haven't slept. I just keep imagining myself telling her, her reaction and it's just feels so scary and unreal, I mean I kept this from her for 10 years, and now its gonna change, its always something I imagined will eventually happen one day, but in a distant future, not NOW, if you know what I mean. We have a very special relationship, I tell her absolutely everything, even the most intimate things and problems in my family, love life, when I battled OCD and panic attacks, but I never told her this. And I know its gonna be a huge shock for her! But, like I said I never wanted to tell anyone or even felt the need, but for a year now i felt that I should tell her, because after my family I love her the most and she is the only person I trust.
But what scares me, Aleksandra, you said I should tell her so she wont go on the internet, but I know her, and I am 100% sure she will google like crazy( just like I would do if I was in her position). And on google she will find a lot of scary information, I mean even the name "cystic fibrosis" sound awful.lol. And she will read about life expectancy of 37 and probably freak out, I mean, then what? It's just so complicated. I mean, there are some scary things about our condition that I just found out going to forums that I never really understood and knew before, imagine what it will feel like for her... I am afraid if she reads all that, that she will live in fear that I might die every second ( not literally , I am sure you know what I mean) and then I would feel awful about that.
I think I should tell her that I have lung problems, that they are weak ( I did mention once that when i was a kid I had problems with lungs) I can get infections more easily than other people and because of that I must take inhalations and take care of myself. And then see how that goes and then slowly, after time, add more information and tell her the name and heavier stuff. What do you think about that? I think that would be easier for me...
mag 6125- i really would love to have her like you have your ex to go to doctors with me, i would love to talk to her and have her support and not hide every time I go to doctors and lie. It would be such a relief. And I wish you all the best, you have support of your friend, if you told him,you can tell other people about transplant, you can do it!
hugs<img src="i/expressions/face-icon-small-smile.gif" border="0">

rayoflight · Dec 16, 2010

First of all, thank you all for taking time to give me advice, I cant explain how much it means to me. It's 11 am where I live and I still haven't slept. I just keep imagining myself telling her, her reaction and it's just feels so scary and unreal, I mean I kept this from her for 10 years, and now its gonna change, its always something I imagined will eventually happen one day, but in a distant future, not NOW, if you know what I mean. We have a very special relationship, I tell her absolutely everything, even the most intimate things and problems in my family, love life, when I battled OCD and panic attacks, but I never told her this. And I know its gonna be a huge shock for her! But, like I said I never wanted to tell anyone or even felt the need, but for a year now i felt that I should tell her, because after my family I love her the most and she is the only person I trust.
 But what scares me, Aleksandra, you said I should tell her so she wont go on the internet, but I know her, and I am 100% sure she will google like crazy( just like I would do if I was in her position). And on google she will find a lot of scary information, I mean even the name "cystic fibrosis" sound awful.lol. And she will read about life expectancy of 37 and probably freak out, I mean, then what? It's just so complicated. I mean, there are some scary things about our condition that I just found out going to forums that I never really understood and knew before, imagine what it will feel like for her... I am afraid if she reads all that, that she will live in fear that I might die every second ( not literally , I am sure you know what I mean) and then I would feel awful about that.
 I think I should tell her that I have lung problems, that they are weak ( I did mention once that when i was a kid I had problems with lungs) I can get infections more easily than other people and because of that I must take inhalations and take care of myself. And then see how that goes and then slowly, after time, add more information and tell her the name and heavier stuff. What do you think about that? I think that would be easier for me...
 mag 6125- i really would love to have her like you have your ex to go to doctors with me, i would love to talk to her and have her support and not hide every time I go to doctors and lie. It would be such a relief. And I wish you all the best, you have support of your friend, if you told him,you can tell other people about transplant, you can do it!
 hugs<img src="i/expressions/face-icon-small-smile.gif" border="0">

AleksandraKaczynska · Dec 16, 2010

Yes - you're right - if your friend will read (and you say she will) and find out scary stuff. But if you explain her condition to her first, tell her that that each cf is acctuallly different and that statistisc are only for docs since some children pass away quickly and some people live their lives not knowing they have cf or find out when they are 40 over even more. Tell her that this changes since there are new and better drugs and so on.... I mean you know all this. If she hears it from you - she'll manage the interent scary facts better - or even tell her that what she will read will be scary. Help her prepare for the scary facts she can read by telling how it's with you.... not others.
The media always like the most shocking stuff.....
And by the way - our (polish) statistics 5 years ago - gave ife expectancy of 12 - now they are up to 25! I mean statistics are diffucult and yet easy - if you have a child pass away at 5 and an adult ar 55 the statistic will be 25! Doesn't it confuse emotions....
I believe you can go through this since your mind is already made up and I bet your friend is stronger then you think.

AleksandraKaczynska · Dec 16, 2010

Yes - you're right - if your friend will read (and you say she will) and find out scary stuff. But if you explain her condition to her first, tell her that that each cf is acctuallly different and that statistisc are only for docs since some children pass away quickly and some people live their lives not knowing they have cf or find out when they are 40 over even more. Tell her that this changes since there are new and better drugs and so on.... I mean you know all this. If she hears it from you - she'll manage the interent scary facts better - or even tell her that what she will read will be scary. Help her prepare for the scary facts she can read by telling how it's with you.... not others.
The media always like the most shocking stuff.....
And by the way - our (polish) statistics 5 years ago - gave ife expectancy of 12 - now they are up to 25! I mean statistics are diffucult and yet easy - if you have a child pass away at 5 and an adult ar 55 the statistic will be 25! Doesn't it confuse emotions....
I believe you can go through this since your mind is already made up and I bet your friend is stronger then you think.

AleksandraKaczynska · Dec 16, 2010

Yes - you're right - if your friend will read (and you say she will) and find out scary stuff. But if you explain her condition to her first, tell her that that each cf is acctuallly different and that statistisc are only for docs since some children pass away quickly and some people live their lives not knowing they have cf or find out when they are 40 over even more. Tell her that this changes since there are new and better drugs and so on.... I mean you know all this. If she hears it from you - she'll manage the interent scary facts better - or even tell her that what she will read will be scary. Help her prepare for the scary facts she can read by telling how it's with you.... not others.
 The media always like the most shocking stuff.....
 And by the way - our (polish) statistics 5 years ago - gave ife expectancy of 12 - now they are up to 25! I mean statistics are diffucult and yet easy - if you have a child pass away at 5 and an adult ar 55 the statistic will be 25! Doesn't it confuse emotions....
 I believe you can go through this since your mind is already made up and I bet your friend is stronger then you think.

mag6125 · Dec 16, 2010

Yeah definitely tell her if she looks up things online not to believe everything she reads, there is a lot of out of date info out there! I've told people before that I have lung problems and that I get infections easier and that's why I have to take medicines and do ivs. That may be a good way to start for you. I wish you all the luck and I'm sure you'll feel a huge relief! <img src="i/expressions/face-icon-small-smile.gif" border="0">

mag6125 · Dec 16, 2010

Yeah definitely tell her if she looks up things online not to believe everything she reads, there is a lot of out of date info out there! I've told people before that I have lung problems and that I get infections easier and that's why I have to take medicines and do ivs. That may be a good way to start for you. I wish you all the luck and I'm sure you'll feel a huge relief! <img src="i/expressions/face-icon-small-smile.gif" border="0">

desperately need advice

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