Opening up about CF

Mommafirst · Jun 20, 2010

I'm so glad that your friends have responded positively. I worry a lot about how my daughter will fare in the future with friends and support. I'm trying to teach her that CF is just one part of her and we try and teach others, while not making too big of a deal of it all.
 
 I always appreciate seeing the input of those who have been there before us. Thanks for your post.

Lance2020x · Jun 20, 2010

This is something I've been pondering for quite some time (recently posted a topic about it) so it's neat to see someone who has done it and is sharing the results.

But in my opinion.... after reading that description, it makes CF sound pretty cushy. I mean that's probably good since you don't want to freak anybody out, but it sounds like CF is 'nothing special' and sound impersonal. Reading the technical aspects of the process of cancer on a patients body is MUCH different than talking with someone who is suffering through cancer...
My point being, after reading that, I feel like I know a lot about CF, but I know nothing about you, or how CF has effected you.

Lance2020x · Jun 20, 2010

This is something I've been pondering for quite some time (recently posted a topic about it) so it's neat to see someone who has done it and is sharing the results.

But in my opinion.... after reading that description, it makes CF sound pretty cushy. I mean that's probably good since you don't want to freak anybody out, but it sounds like CF is 'nothing special' and sound impersonal. Reading the technical aspects of the process of cancer on a patients body is MUCH different than talking with someone who is suffering through cancer...
My point being, after reading that, I feel like I know a lot about CF, but I know nothing about you, or how CF has effected you.

Lance2020x · Jun 20, 2010

This is something I've been pondering for quite some time (recently posted a topic about it) so it's neat to see someone who has done it and is sharing the results.
 
 But in my opinion.... after reading that description, it makes CF sound pretty cushy. I mean that's probably good since you don't want to freak anybody out, but it sounds like CF is 'nothing special' and sound impersonal. Reading the technical aspects of the process of cancer on a patients body is MUCH different than talking with someone who is suffering through cancer...
 My point being, after reading that, I feel like I know a lot about CF, but I know nothing about you, or how CF has effected you.

welshwitch · Jun 20, 2010

I think this is great. However "works" for you to open up about CF, that's f-in awesome. I'm still in the same boat w. Lance re: deciding the best way to be open about it. For me what's worked in the past is just having a chat with my friends about it. But be it in person or FB, what works for you, works for you.

welshwitch · Jun 20, 2010

I think this is great. However "works" for you to open up about CF, that's f-in awesome. I'm still in the same boat w. Lance re: deciding the best way to be open about it. For me what's worked in the past is just having a chat with my friends about it. But be it in person or FB, what works for you, works for you.

welshwitch · Jun 20, 2010

I think this is great. However "works" for you to open up about CF, that's f-in awesome. I'm still in the same boat w. Lance re: deciding the best way to be open about it. For me what's worked in the past is just having a chat with my friends about it. But be it in person or FB, what works for you, works for you.

Shine · Jun 20, 2010

Hi Ashk.

Good for you putting it out there for your friends, people to read <img src="i/expressions/face-icon-small-smile.gif" border="0">
Honesty is the best policy <img src="i/expressions/face-icon-small-happy.gif" border="0">

Back in my teens I use to try hide c.f. Now that I'm in my 20s can't be bothered! Lol So most of the time I'm quite open about it. In fact recently I went into a maternity clothing store try on some jeans and the shop assistant lady asked if I needed any help and when I was due. To which I replied : "Oh I'm not pregnant! just need to accommodate my belly b.c I have Cystic Fibrosis."
To which she replied: "My best friend's daughter has c.f."
She seem to what to know a lot about the condition, as she told me she wanted to become more knowledgeable so she could help out/support her friend and her friends daughter that had c.f.

Anyway the point to this story is that I was more than happy to share my life experiences with c.f with her and in turn she said it gave her hope for her friends little girl to see me living and breathing at 29 with c.f.
It was really nice to hear and very touching! <img src="i/expressions/face-icon-small-smile.gif" border="0">

So anyway good Askh on you for sharing! I think it's very cool that you can be open about it.

All the best with life,

Hugs Sarah <img src="i/expressions/face-icon-small-smile.gif" border="0">

Shine · Jun 20, 2010

Hi Ashk.

Good for you putting it out there for your friends, people to read <img src="i/expressions/face-icon-small-smile.gif" border="0">
Honesty is the best policy <img src="i/expressions/face-icon-small-happy.gif" border="0">

Back in my teens I use to try hide c.f. Now that I'm in my 20s can't be bothered! Lol So most of the time I'm quite open about it. In fact recently I went into a maternity clothing store try on some jeans and the shop assistant lady asked if I needed any help and when I was due. To which I replied : "Oh I'm not pregnant! just need to accommodate my belly b.c I have Cystic Fibrosis."
To which she replied: "My best friend's daughter has c.f."
She seem to what to know a lot about the condition, as she told me she wanted to become more knowledgeable so she could help out/support her friend and her friends daughter that had c.f.

Anyway the point to this story is that I was more than happy to share my life experiences with c.f with her and in turn she said it gave her hope for her friends little girl to see me living and breathing at 29 with c.f.
It was really nice to hear and very touching! <img src="i/expressions/face-icon-small-smile.gif" border="0">

So anyway good Askh on you for sharing! I think it's very cool that you can be open about it.

All the best with life,

Hugs Sarah <img src="i/expressions/face-icon-small-smile.gif" border="0">

Shine · Jun 20, 2010

Hi Ashk.
 
 Good for you putting it out there for your friends, people to read <img src="i/expressions/face-icon-small-smile.gif" border="0">
 Honesty is the best policy <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
 Back in my teens I use to try hide c.f. Now that I'm in my 20s can't be bothered! Lol So most of the time I'm quite open about it. In fact recently I went into a maternity clothing store try on some jeans and the shop assistant lady asked if I needed any help and when I was due. To which I replied : "Oh I'm not pregnant! just need to accommodate my belly b.c I have Cystic Fibrosis."
 To which she replied: "My best friend's daughter has c.f."
 She seem to what to know a lot about the condition, as she told me she wanted to become more knowledgeable so she could help out/support her friend and her friends daughter that had c.f.
 
 Anyway the point to this story is that I was more than happy to share my life experiences with c.f with her and in turn she said it gave her hope for her friends little girl to see me living and breathing at 29 with c.f.
 It was really nice to hear and very touching! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 So anyway good Askh on you for sharing! I think it's very cool that you can be open about it.
 
 All the best with life,
 
 Hugs Sarah <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ashk · Jun 22, 2010

Thanks all for your feedback,

Colinmaydahl - I think it is great you are very open about CF, yeah I have some truly great people who support me and I can be weak in front (you know the days where you just go Rarrr at CF)

Mommafirst - I think your daughter will be fine as she grows, seeing how many people are out there pushing information on CF by the time she grows up it will be well known (we can hope), to be honest with you I have only ever had 1 negative person respond to it, so I am sure she will have a great support network.

Lance2020x - You made a great point, one thing I was trying to do was not have people feel sorry for me, but I think I overdid it by making it sound too easy. On the bright side, any one that read that and wanted to know more then came and spoke to me to learn more, maybe I will do a follow up piece about how it has affected me. One of the reasons I posted this up was because I was put in hospital 2 weeks ago and I hadn't told anyone at church that I had CF so when I got back I was bombarded with questions, so I just thought I would try to raise some awareness.

Welshwitch - I definately think in person is best, I just wanted to address as many people as possible. I really hope you find the way that suits you best.

Shine - Thats awesome that you are open, I am now becoming more and more open, I had to preach at church the other day, afterwards a lady came up and said "I see you have lung problems" not usually I just say I have a cold or it is the air cond, but this time I was like yeah I have CF, and she knew all about it and spoke to me for a while, it was really cool.

Once again thanks to all of you for your feed back, for those who are not yet open about it, I hope you open up more and just own it, this is a great community with great support.

Cheers
Ash
Face book <a target=_blank class=ftalternatingbarlinklarge href="http://www.facebook.com/#!/profile.php?id=620287464">http://www.facebook.com/#!/profile.php?id=620287464</a>

Ashk · Jun 22, 2010

Thanks all for your feedback,

Colinmaydahl - I think it is great you are very open about CF, yeah I have some truly great people who support me and I can be weak in front (you know the days where you just go Rarrr at CF)

Mommafirst - I think your daughter will be fine as she grows, seeing how many people are out there pushing information on CF by the time she grows up it will be well known (we can hope), to be honest with you I have only ever had 1 negative person respond to it, so I am sure she will have a great support network.

Lance2020x - You made a great point, one thing I was trying to do was not have people feel sorry for me, but I think I overdid it by making it sound too easy. On the bright side, any one that read that and wanted to know more then came and spoke to me to learn more, maybe I will do a follow up piece about how it has affected me. One of the reasons I posted this up was because I was put in hospital 2 weeks ago and I hadn't told anyone at church that I had CF so when I got back I was bombarded with questions, so I just thought I would try to raise some awareness.

Welshwitch - I definately think in person is best, I just wanted to address as many people as possible. I really hope you find the way that suits you best.

Shine - Thats awesome that you are open, I am now becoming more and more open, I had to preach at church the other day, afterwards a lady came up and said "I see you have lung problems" not usually I just say I have a cold or it is the air cond, but this time I was like yeah I have CF, and she knew all about it and spoke to me for a while, it was really cool.

Once again thanks to all of you for your feed back, for those who are not yet open about it, I hope you open up more and just own it, this is a great community with great support.

Cheers
Ash
Face book <a target=_blank class=ftalternatingbarlinklarge href="http://www.facebook.com/#!/profile.php?id=620287464">http://www.facebook.com/#!/profile.php?id=620287464</a>

Ashk · Jun 22, 2010

Thanks all for your feedback,
 
 Colinmaydahl - I think it is great you are very open about CF, yeah I have some truly great people who support me and I can be weak in front (you know the days where you just go Rarrr at CF)
 
 Mommafirst - I think your daughter will be fine as she grows, seeing how many people are out there pushing information on CF by the time she grows up it will be well known (we can hope), to be honest with you I have only ever had 1 negative person respond to it, so I am sure she will have a great support network.
 
 Lance2020x - You made a great point, one thing I was trying to do was not have people feel sorry for me, but I think I overdid it by making it sound too easy. On the bright side, any one that read that and wanted to know more then came and spoke to me to learn more, maybe I will do a follow up piece about how it has affected me. One of the reasons I posted this up was because I was put in hospital 2 weeks ago and I hadn't told anyone at church that I had CF so when I got back I was bombarded with questions, so I just thought I would try to raise some awareness.
 
 Welshwitch - I definately think in person is best, I just wanted to address as many people as possible. I really hope you find the way that suits you best.
 
 Shine - Thats awesome that you are open, I am now becoming more and more open, I had to preach at church the other day, afterwards a lady came up and said "I see you have lung problems" not usually I just say I have a cold or it is the air cond, but this time I was like yeah I have CF, and she knew all about it and spoke to me for a while, it was really cool.
 
 Once again thanks to all of you for your feed back, for those who are not yet open about it, I hope you open up more and just own it, this is a great community with great support.
 
 Cheers
 Ash
 Face book <a target=_blank class=ftalternatingbarlinklarge href="http://www.facebook.com/#!/profile.php?id=620287464">http://www.facebook.com/#!/profile.php?id=620287464</a>

chrissyd · Jun 22, 2010

I don't think dbtoo was trying to be insensitive, just honest. Your post was/is a good one, but when referencing someone elses work they should be cited. Maybe I'm just not as sensitive about his comment because in my college classes they beat it into us! <img src="i/expressions/face-icon-small-wink.gif" border="0">

I just wrote a letter on my blog to my friends and family about my illnesses. Its felt strange while writing it but it really helped me sort out my feelings a lot. I think yours is good!

<img src="i/expressions/rose.gif" border="0">

chrissyd · Jun 22, 2010

I don't think dbtoo was trying to be insensitive, just honest. Your post was/is a good one, but when referencing someone elses work they should be cited. Maybe I'm just not as sensitive about his comment because in my college classes they beat it into us! <img src="i/expressions/face-icon-small-wink.gif" border="0">

I just wrote a letter on my blog to my friends and family about my illnesses. Its felt strange while writing it but it really helped me sort out my feelings a lot. I think yours is good!

<img src="i/expressions/rose.gif" border="0">

chrissyd · Jun 22, 2010

I don't think dbtoo was trying to be insensitive, just honest. Your post was/is a good one, but when referencing someone elses work they should be cited. Maybe I'm just not as sensitive about his comment because in my college classes they beat it into us! <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
 I just wrote a letter on my blog to my friends and family about my illnesses. Its felt strange while writing it but it really helped me sort out my feelings a lot. I think yours is good!
 
 <img src="i/expressions/rose.gif" border="0">

sawyer · Jun 22, 2010

Wow Ash that's a really great way to let people know! I don't tell many people I have CF, not necessarily because I'm secretive about it but because I think not everybody needs to know. I think I'd be kind of scared to post something like that on facebook because I don't know how people would respond. All of my close friends know but my work colleagues and people at uni have no idea (as far as I know!) so I'd be worried they'd start treating me differently. You'd hope not, but I guess I'm just not as brave as you to try and find out!

sawyer · Jun 22, 2010

Wow Ash that's a really great way to let people know! I don't tell many people I have CF, not necessarily because I'm secretive about it but because I think not everybody needs to know. I think I'd be kind of scared to post something like that on facebook because I don't know how people would respond. All of my close friends know but my work colleagues and people at uni have no idea (as far as I know!) so I'd be worried they'd start treating me differently. You'd hope not, but I guess I'm just not as brave as you to try and find out!

sawyer · Jun 22, 2010

Wow Ash that's a really great way to let people know! I don't tell many people I have CF, not necessarily because I'm secretive about it but because I think not everybody needs to know. I think I'd be kind of scared to post something like that on facebook because I don't know how people would respond. All of my close friends know but my work colleagues and people at uni have no idea (as far as I know!) so I'd be worried they'd start treating me differently. You'd hope not, but I guess I'm just not as brave as you to try and find out!

static · Jun 22, 2010

Good for you. A situation comming up in my life may make me open up more about my CF to friends and this was great encouragement to be more open.

Opening up about CF

Mommafirst

Guest

New member

New member

New member

welshwitch

Guest

welshwitch

Guest

welshwitch

Guest

Member

Member

Member

New member

New member

New member

New member

New member

New member

New member

New member

New member

New member