Do you tell people...?

[CowTown]

I was going to write this in my blog, but decided to put it here.

Eventhough I've been starting to feel much stronger in the past month or so, I still have made it successfully (I think) into that transition of being sicker than I used to be, and wanting to put my CF care and treatments out in the open. I feel myself being more open about what I have to do to take care of myself and what I don't want to expose myself to any longer like sitting next to smoking people, etc, etc. It's still relatively new to me though to be so open and share so much info about what I feel. I think at this point it is the smartest thing for my health, to try and be more open about it even to strangers so that I don't mess up my treatment and exericise regime. I used to always hide stuff which led me to missing treatments just to appear "normal".

Why I'm writing this is b/c I ran into someone I went to elementary school with. I continue to run into him once every 6 years or so. He never knew about CF, and still doesn't, we were never all that close, just would run into eachother and catch up. When we got to talking he of course wanted to know "what do you do (but not work related) and what have you been up to?" That can be such a lame question. I don't think I really had much to say, I mean do I go into the more entertaining things i've done (eventhough they might be things you can't really do anymore?), or do you actually lay it out on the table since he asked and say well...I've been focusing on my health and that's been my main focus? I don't have a good answer for people anymore.

What do you all say when someone asks what you do, if what you really do is spend most of your time taking care of yourself and doing treatments? Do you catch people up by telling them you have CF and are dealing with all that? It jjust seems so heavy to unload to someone that you know you won't spend much time with. But then I feel like it's such a shallow conversation without the guts of what I'm up to.

I've intentionally been trying to open up to my close friends and family about the complications i've experience in the past year to two, just so that they understand me better. Things have changed for me with my health and it doesn't feel good to think my close friends and family don't "get" what I'm dealing with especially if it's b/c I haven't shared. So that part of it is going well, but now what to do about aquaintences?

Another example is, I was strangely enough asked by an aquaintence (who is also a client of mine) if I was interested in going on a long bike ride through Ireland! Of all things, it sounds really fun! First, I don't do long road bike trips, but she is under the impression that I am a very athletic person. I can proudly say that I have been a very athletic person in the past and she has heard through the grape vine of things that I've done, like rock climbing and skiing.....but I can't do what I used to! Is it worth it to clear the air with an aquaintence like that, or what? I still hope I will be able to be that athletic person I used to be not long ago.



This is my Dear Abby note for the week!

Any insight would be really appreciated.
Thanks!

 

[CowTown]

I was going to write this in my blog, but decided to put it here.

Eventhough I've been starting to feel much stronger in the past month or so, I still have made it successfully (I think) into that transition of being sicker than I used to be, and wanting to put my CF care and treatments out in the open. I feel myself being more open about what I have to do to take care of myself and what I don't want to expose myself to any longer like sitting next to smoking people, etc, etc. It's still relatively new to me though to be so open and share so much info about what I feel. I think at this point it is the smartest thing for my health, to try and be more open about it even to strangers so that I don't mess up my treatment and exericise regime. I used to always hide stuff which led me to missing treatments just to appear "normal".

Why I'm writing this is b/c I ran into someone I went to elementary school with. I continue to run into him once every 6 years or so. He never knew about CF, and still doesn't, we were never all that close, just would run into eachother and catch up. When we got to talking he of course wanted to know "what do you do (but not work related) and what have you been up to?" That can be such a lame question. I don't think I really had much to say, I mean do I go into the more entertaining things i've done (eventhough they might be things you can't really do anymore?), or do you actually lay it out on the table since he asked and say well...I've been focusing on my health and that's been my main focus? I don't have a good answer for people anymore.

What do you all say when someone asks what you do, if what you really do is spend most of your time taking care of yourself and doing treatments? Do you catch people up by telling them you have CF and are dealing with all that? It jjust seems so heavy to unload to someone that you know you won't spend much time with. But then I feel like it's such a shallow conversation without the guts of what I'm up to.

I've intentionally been trying to open up to my close friends and family about the complications i've experience in the past year to two, just so that they understand me better. Things have changed for me with my health and it doesn't feel good to think my close friends and family don't "get" what I'm dealing with especially if it's b/c I haven't shared. So that part of it is going well, but now what to do about aquaintences?

Another example is, I was strangely enough asked by an aquaintence (who is also a client of mine) if I was interested in going on a long bike ride through Ireland! Of all things, it sounds really fun! First, I don't do long road bike trips, but she is under the impression that I am a very athletic person. I can proudly say that I have been a very athletic person in the past and she has heard through the grape vine of things that I've done, like rock climbing and skiing.....but I can't do what I used to! Is it worth it to clear the air with an aquaintence like that, or what? I still hope I will be able to be that athletic person I used to be not long ago.



This is my Dear Abby note for the week!

Any insight would be really appreciated.
Thanks!

 

[CowTown]

I was going to write this in my blog, but decided to put it here.

Eventhough I've been starting to feel much stronger in the past month or so, I still have made it successfully (I think) into that transition of being sicker than I used to be, and wanting to put my CF care and treatments out in the open. I feel myself being more open about what I have to do to take care of myself and what I don't want to expose myself to any longer like sitting next to smoking people, etc, etc. It's still relatively new to me though to be so open and share so much info about what I feel. I think at this point it is the smartest thing for my health, to try and be more open about it even to strangers so that I don't mess up my treatment and exericise regime. I used to always hide stuff which led me to missing treatments just to appear "normal".

Why I'm writing this is b/c I ran into someone I went to elementary school with. I continue to run into him once every 6 years or so. He never knew about CF, and still doesn't, we were never all that close, just would run into eachother and catch up. When we got to talking he of course wanted to know "what do you do (but not work related) and what have you been up to?" That can be such a lame question. I don't think I really had much to say, I mean do I go into the more entertaining things i've done (eventhough they might be things you can't really do anymore?), or do you actually lay it out on the table since he asked and say well...I've been focusing on my health and that's been my main focus? I don't have a good answer for people anymore.

What do you all say when someone asks what you do, if what you really do is spend most of your time taking care of yourself and doing treatments? Do you catch people up by telling them you have CF and are dealing with all that? It jjust seems so heavy to unload to someone that you know you won't spend much time with. But then I feel like it's such a shallow conversation without the guts of what I'm up to.

I've intentionally been trying to open up to my close friends and family about the complications i've experience in the past year to two, just so that they understand me better. Things have changed for me with my health and it doesn't feel good to think my close friends and family don't "get" what I'm dealing with especially if it's b/c I haven't shared. So that part of it is going well, but now what to do about aquaintences?

Another example is, I was strangely enough asked by an aquaintence (who is also a client of mine) if I was interested in going on a long bike ride through Ireland! Of all things, it sounds really fun! First, I don't do long road bike trips, but she is under the impression that I am a very athletic person. I can proudly say that I have been a very athletic person in the past and she has heard through the grape vine of things that I've done, like rock climbing and skiing.....but I can't do what I used to! Is it worth it to clear the air with an aquaintence like that, or what? I still hope I will be able to be that athletic person I used to be not long ago.



This is my Dear Abby note for the week!

Any insight would be really appreciated.
Thanks!

 

[JennifersHope]

I struggle with this all the time... Work is not really an issue since everyone knows.. because I work the hospital I am treated at... and I have no chance of any single person there not knowing because everyone talks....and in a way I hate it because I want to be seen as an equal but more and more I am starting to see just how much I am not equal and I am starting more and more to see my self in a different way then I ever have.. I am a nice nurse, loving and caring, not to stupid but I can't keep up with the big boys and girls of nursing.. I pay so dearly when I try to.. and for me to admit that well this is probably the first time.. but it is a relief in some ways.. because at least in my old spot in the ER.. they always could tell when I didn't feel good and they always protected me... The new floor was different..now I am thrown to the wolves till I get to go back

Anyway..I like you am newer to this so sometimes I just tell ppl what ever comes out of my mouth.. (somtimes dangerous) I in general with people that I am not going to be in a long term friendship/relationship never would tell them, but now for me someone that is going to be my friend, I do tell.. but I always stress how mild it is and that I am fine....I feel like people are going to think I am looking for attention so I am real careful not to make it sound bad.. (because it isn't in my case)..

I never stress how much time I spend doing my treatments but even with the ppl that I am close to, I don't talk about it with them either.. Once in a while I will complain to my doctor and cry to him.. but never to the ppl I am close to.. I don't want to burden them and I think I am afraid of looking like a whiney head.. and I think I am afraid if I seem like a whiner all the time no one will want to be around me.. and I need the people in my life to much..

I don't know if that helped or confused you more.. but I feel like I have the same situation and questions as you...

Jennifer

 

[JennifersHope]

I struggle with this all the time... Work is not really an issue since everyone knows.. because I work the hospital I am treated at... and I have no chance of any single person there not knowing because everyone talks....and in a way I hate it because I want to be seen as an equal but more and more I am starting to see just how much I am not equal and I am starting more and more to see my self in a different way then I ever have.. I am a nice nurse, loving and caring, not to stupid but I can't keep up with the big boys and girls of nursing.. I pay so dearly when I try to.. and for me to admit that well this is probably the first time.. but it is a relief in some ways.. because at least in my old spot in the ER.. they always could tell when I didn't feel good and they always protected me... The new floor was different..now I am thrown to the wolves till I get to go back

Anyway..I like you am newer to this so sometimes I just tell ppl what ever comes out of my mouth.. (somtimes dangerous) I in general with people that I am not going to be in a long term friendship/relationship never would tell them, but now for me someone that is going to be my friend, I do tell.. but I always stress how mild it is and that I am fine....I feel like people are going to think I am looking for attention so I am real careful not to make it sound bad.. (because it isn't in my case)..

I never stress how much time I spend doing my treatments but even with the ppl that I am close to, I don't talk about it with them either.. Once in a while I will complain to my doctor and cry to him.. but never to the ppl I am close to.. I don't want to burden them and I think I am afraid of looking like a whiney head.. and I think I am afraid if I seem like a whiner all the time no one will want to be around me.. and I need the people in my life to much..

I don't know if that helped or confused you more.. but I feel like I have the same situation and questions as you...

Jennifer

 

[JennifersHope]

I struggle with this all the time... Work is not really an issue since everyone knows.. because I work the hospital I am treated at... and I have no chance of any single person there not knowing because everyone talks....and in a way I hate it because I want to be seen as an equal but more and more I am starting to see just how much I am not equal and I am starting more and more to see my self in a different way then I ever have.. I am a nice nurse, loving and caring, not to stupid but I can't keep up with the big boys and girls of nursing.. I pay so dearly when I try to.. and for me to admit that well this is probably the first time.. but it is a relief in some ways.. because at least in my old spot in the ER.. they always could tell when I didn't feel good and they always protected me... The new floor was different..now I am thrown to the wolves till I get to go back

Anyway..I like you am newer to this so sometimes I just tell ppl what ever comes out of my mouth.. (somtimes dangerous) I in general with people that I am not going to be in a long term friendship/relationship never would tell them, but now for me someone that is going to be my friend, I do tell.. but I always stress how mild it is and that I am fine....I feel like people are going to think I am looking for attention so I am real careful not to make it sound bad.. (because it isn't in my case)..

I never stress how much time I spend doing my treatments but even with the ppl that I am close to, I don't talk about it with them either.. Once in a while I will complain to my doctor and cry to him.. but never to the ppl I am close to.. I don't want to burden them and I think I am afraid of looking like a whiney head.. and I think I am afraid if I seem like a whiner all the time no one will want to be around me.. and I need the people in my life to much..

I don't know if that helped or confused you more.. but I feel like I have the same situation and questions as you...

Jennifer

 

[EnergyGal]

If someone walks into my space, I tell them all about it. I was like that since I was twenty.
Telling others became very easy with time. While I was dating, I spilled the beans around the third date if I liked the guy.

After my transplant, I told them right away and I had a bunch of questions that I asked them before I would even consider meeting them. Questions that I would never have asked in the past.

I was more afraid of catching cold with the transplant than with the cf lungs. Luckily, I met my husband after only dating two other frogs. My husband and I are doing great these days.

When it comes to meeting people in public (shopping or whatever I am doing) I find a purpose in sharing a second with someone if it is appropriate that I had a transplant. It is kind of strange, I know but I am spreading awareness about organ donation.

I have a trach scar (I decided not to surgical fix it) so I wear pretty pendants covering it up. I often receive compliments on the pendant and I say thank you, It is covering up a scar. They always ask what happened so I just say, I had a complicated transplant. Brief and short and make sure i tell them that I am doing well. Most people smile and say, I never know they can do that.

I made an appointment with a plastic surgeon for this easy surgery but decided cutting skin is sill risky and I decided not to do this.

I decided to embrace it rather than erase it <img src="i/expressions/face-icon-small-smile.gif" border="0">

The same with CF, I always thought of CF as my child that I had to take care of.

We are so different.

 

[EnergyGal]

If someone walks into my space, I tell them all about it. I was like that since I was twenty.
Telling others became very easy with time. While I was dating, I spilled the beans around the third date if I liked the guy.

After my transplant, I told them right away and I had a bunch of questions that I asked them before I would even consider meeting them. Questions that I would never have asked in the past.

I was more afraid of catching cold with the transplant than with the cf lungs. Luckily, I met my husband after only dating two other frogs. My husband and I are doing great these days.

When it comes to meeting people in public (shopping or whatever I am doing) I find a purpose in sharing a second with someone if it is appropriate that I had a transplant. It is kind of strange, I know but I am spreading awareness about organ donation.

I have a trach scar (I decided not to surgical fix it) so I wear pretty pendants covering it up. I often receive compliments on the pendant and I say thank you, It is covering up a scar. They always ask what happened so I just say, I had a complicated transplant. Brief and short and make sure i tell them that I am doing well. Most people smile and say, I never know they can do that.

I made an appointment with a plastic surgeon for this easy surgery but decided cutting skin is sill risky and I decided not to do this.

I decided to embrace it rather than erase it <img src="i/expressions/face-icon-small-smile.gif" border="0">

The same with CF, I always thought of CF as my child that I had to take care of.

We are so different.

 

[EnergyGal]

If someone walks into my space, I tell them all about it. I was like that since I was twenty.
Telling others became very easy with time. While I was dating, I spilled the beans around the third date if I liked the guy.

After my transplant, I told them right away and I had a bunch of questions that I asked them before I would even consider meeting them. Questions that I would never have asked in the past.

I was more afraid of catching cold with the transplant than with the cf lungs. Luckily, I met my husband after only dating two other frogs. My husband and I are doing great these days.

When it comes to meeting people in public (shopping or whatever I am doing) I find a purpose in sharing a second with someone if it is appropriate that I had a transplant. It is kind of strange, I know but I am spreading awareness about organ donation.

I have a trach scar (I decided not to surgical fix it) so I wear pretty pendants covering it up. I often receive compliments on the pendant and I say thank you, It is covering up a scar. They always ask what happened so I just say, I had a complicated transplant. Brief and short and make sure i tell them that I am doing well. Most people smile and say, I never know they can do that.

I made an appointment with a plastic surgeon for this easy surgery but decided cutting skin is sill risky and I decided not to do this.

I decided to embrace it rather than erase it <img src="i/expressions/face-icon-small-smile.gif" border="0">

The same with CF, I always thought of CF as my child that I had to take care of.

We are so different.

 

[coltsfan715]

Kelly,

I have struggled with this as well. My main struggles come from being afraid to be treated differently and with my health changing as well recently I have been afraid that I would say something about how I felt and not be taken seriously because I do not act as though there is a serious problem.

I have found though that people are more compassionate and understanding then we give them credit for and if you tell them they will most likely receive the information with an open mind. I have many times asked people at ball games to put out cigarettes (esp since it is a non smoking facility anyway) I just say I'm sorry but do you think you could put your cigarette out - I have breathing problems and it is difficult for me to breathe with the smoke. I don't go into detail with people in that respect. I have actually never had someone be rude to me when I say that though most always they put out their cigarette.

With acquaintances, I judge by the person. I am usually pretty good at judging how receptive people are to certain information. If I think they will be receptive to it I tell them. ALL of my friends know I have CF - whether they are close or not whether I see them once a week or once every 2-3 months - They all know. Even people I don't REALLY know but have met through Kurt they know. They ask how I am and what I do and I say I volunteer on occasion with the CF Foundation and other than that I try to focus on taking care of myself and doing things around the house. If they make a negative comment I just tell them - yeah I wish I could work or do whatever but with my health lately I can't. You can only do what you can do.

I have been trying to be more open and honest in recent years. I have told pretty much anyone who asks about my health that I have CF. Even people that don't ask - if they just comment about my cough I just say yeah ... I have CF the cough kind of comes with the territory.

I would just try to work it into the convo. Something like this .. when they ask what you have been doing just say well I have had a rough go with my health due to the Cystic Fibrosis and I have been trying to get back on track for several months. As for the bike ride, I would love to but unfortunately can't handle that long of a ride right now. Maybe we could go for a walk or do such and such and suggest something you CAN do that may interest the person. That way the person doesn't think you are just making excuses to keep from doing something with them and you also may still get to do something enjoyable that is exercise.

Take Care,
Lindsey

 

[coltsfan715]

Kelly,

I have struggled with this as well. My main struggles come from being afraid to be treated differently and with my health changing as well recently I have been afraid that I would say something about how I felt and not be taken seriously because I do not act as though there is a serious problem.

I have found though that people are more compassionate and understanding then we give them credit for and if you tell them they will most likely receive the information with an open mind. I have many times asked people at ball games to put out cigarettes (esp since it is a non smoking facility anyway) I just say I'm sorry but do you think you could put your cigarette out - I have breathing problems and it is difficult for me to breathe with the smoke. I don't go into detail with people in that respect. I have actually never had someone be rude to me when I say that though most always they put out their cigarette.

With acquaintances, I judge by the person. I am usually pretty good at judging how receptive people are to certain information. If I think they will be receptive to it I tell them. ALL of my friends know I have CF - whether they are close or not whether I see them once a week or once every 2-3 months - They all know. Even people I don't REALLY know but have met through Kurt they know. They ask how I am and what I do and I say I volunteer on occasion with the CF Foundation and other than that I try to focus on taking care of myself and doing things around the house. If they make a negative comment I just tell them - yeah I wish I could work or do whatever but with my health lately I can't. You can only do what you can do.

I have been trying to be more open and honest in recent years. I have told pretty much anyone who asks about my health that I have CF. Even people that don't ask - if they just comment about my cough I just say yeah ... I have CF the cough kind of comes with the territory.

I would just try to work it into the convo. Something like this .. when they ask what you have been doing just say well I have had a rough go with my health due to the Cystic Fibrosis and I have been trying to get back on track for several months. As for the bike ride, I would love to but unfortunately can't handle that long of a ride right now. Maybe we could go for a walk or do such and such and suggest something you CAN do that may interest the person. That way the person doesn't think you are just making excuses to keep from doing something with them and you also may still get to do something enjoyable that is exercise.

Take Care,
Lindsey

 

[coltsfan715]

Kelly,

I have struggled with this as well. My main struggles come from being afraid to be treated differently and with my health changing as well recently I have been afraid that I would say something about how I felt and not be taken seriously because I do not act as though there is a serious problem.

I have found though that people are more compassionate and understanding then we give them credit for and if you tell them they will most likely receive the information with an open mind. I have many times asked people at ball games to put out cigarettes (esp since it is a non smoking facility anyway) I just say I'm sorry but do you think you could put your cigarette out - I have breathing problems and it is difficult for me to breathe with the smoke. I don't go into detail with people in that respect. I have actually never had someone be rude to me when I say that though most always they put out their cigarette.

With acquaintances, I judge by the person. I am usually pretty good at judging how receptive people are to certain information. If I think they will be receptive to it I tell them. ALL of my friends know I have CF - whether they are close or not whether I see them once a week or once every 2-3 months - They all know. Even people I don't REALLY know but have met through Kurt they know. They ask how I am and what I do and I say I volunteer on occasion with the CF Foundation and other than that I try to focus on taking care of myself and doing things around the house. If they make a negative comment I just tell them - yeah I wish I could work or do whatever but with my health lately I can't. You can only do what you can do.

I have been trying to be more open and honest in recent years. I have told pretty much anyone who asks about my health that I have CF. Even people that don't ask - if they just comment about my cough I just say yeah ... I have CF the cough kind of comes with the territory.

I would just try to work it into the convo. Something like this .. when they ask what you have been doing just say well I have had a rough go with my health due to the Cystic Fibrosis and I have been trying to get back on track for several months. As for the bike ride, I would love to but unfortunately can't handle that long of a ride right now. Maybe we could go for a walk or do such and such and suggest something you CAN do that may interest the person. That way the person doesn't think you are just making excuses to keep from doing something with them and you also may still get to do something enjoyable that is exercise.

Take Care,
Lindsey

 

[NoExcuses]

.

 

[NoExcuses]

.

 

[NoExcuses]

.

 

[ihatecf]

Kelly,

This is a very touchy subject. I'm in your dilemma also. However, I dont tell. I leave things to uncover on their own. Eventually, secrets dont stay forever. People tell each other, and no body asks "why didnt you tell me?" because I had the right to remain silent.

Many are not ready to hear that you have a chronic " terminating" illness. Some wont be ur friends for this simple reason if you tell them from the beginning.

However, I noticed that by the time I get sicker I lose more acquiantances and even friends. They simply pull out slowly because I'm not able to catch up with them or because they think that they can do nothing about it now and its better to leave "him" alone.

There is the opposite way around, but I dont think this is the case in CF patients even in end stage cystic fibrosis. Some cancer young patients I knew, preferred rather to be alne in the later or even first stages of their disease, and some tended to hide the fact they are sick.

The hardest of all is telling your sppouse or bf or gf. This is a huge issue. In this field I prefer to tell the moment things get serious because its cheating if I hide it, and eventually she'll hear it from someone else.

Still a debatable issue what so ever.

 

[ihatecf]

Kelly,

This is a very touchy subject. I'm in your dilemma also. However, I dont tell. I leave things to uncover on their own. Eventually, secrets dont stay forever. People tell each other, and no body asks "why didnt you tell me?" because I had the right to remain silent.

Many are not ready to hear that you have a chronic " terminating" illness. Some wont be ur friends for this simple reason if you tell them from the beginning.

However, I noticed that by the time I get sicker I lose more acquiantances and even friends. They simply pull out slowly because I'm not able to catch up with them or because they think that they can do nothing about it now and its better to leave "him" alone.

There is the opposite way around, but I dont think this is the case in CF patients even in end stage cystic fibrosis. Some cancer young patients I knew, preferred rather to be alne in the later or even first stages of their disease, and some tended to hide the fact they are sick.

The hardest of all is telling your sppouse or bf or gf. This is a huge issue. In this field I prefer to tell the moment things get serious because its cheating if I hide it, and eventually she'll hear it from someone else.

Still a debatable issue what so ever.

 

[ihatecf]

Kelly,

This is a very touchy subject. I'm in your dilemma also. However, I dont tell. I leave things to uncover on their own. Eventually, secrets dont stay forever. People tell each other, and no body asks "why didnt you tell me?" because I had the right to remain silent.

Many are not ready to hear that you have a chronic " terminating" illness. Some wont be ur friends for this simple reason if you tell them from the beginning.

However, I noticed that by the time I get sicker I lose more acquiantances and even friends. They simply pull out slowly because I'm not able to catch up with them or because they think that they can do nothing about it now and its better to leave "him" alone.

There is the opposite way around, but I dont think this is the case in CF patients even in end stage cystic fibrosis. Some cancer young patients I knew, preferred rather to be alne in the later or even first stages of their disease, and some tended to hide the fact they are sick.

The hardest of all is telling your sppouse or bf or gf. This is a huge issue. In this field I prefer to tell the moment things get serious because its cheating if I hide it, and eventually she'll hear it from someone else.

Still a debatable issue what so ever.

 

[Scarlett81]

omg, I know just how you feel. But, despite that I truly believe it is more uncomfortable for US than it is for them.-think of it this way, if you knew of someone who got dx'd with say cancer, then needed all that rest to stay out of remission, you'd understand if they said 'I'm just focusing on my health right now.'

I pretty much tell everyone. First, b/c I want to tell people about Cf, so that more know about it-I still run into healthcare workers that have never heard of it-omg. Also b/c I want people to understand what I go through. And they can't understand if I don't give them that chance.

I went through this after I moved to a new area, I was kinda prejudging people to not understand before telling them. Anyway, people ask what I do? -I don't work secularly right now, b/c I'm trying to focus on my health, I have Cf and its alot of work to maintain it, and we don't really need me to work right now. But I keep very busy with my volunteer work in the congregation, with the horses on the farm I live on, and my house.

People ususally reply with-oh, cf now what is that again/how does it affect you?-And it gives me chance to briefly explain it. Sure, I've heard of things through the grapevine-1 or 2 people saying stupid things like oh, she's pampered she doesn't work/she just sits at home all day...that happens to everyone b/c there's ignorant people in the world. BUT, for the most part, 99% of my friends and accquaintances are awesome with it. Cf isn't me, but its a big part of me, and I want people to know me.

This is the thing-if/when I "go"- I don't want people to say, wow if I only knew, why didn't she explain this, ect...That's just me. Everyone has to find their own comfort zone. I'm sure you'll find yours.<img src="i/expressions/heart.gif" border="0">

 

[Scarlett81]

omg, I know just how you feel. But, despite that I truly believe it is more uncomfortable for US than it is for them.-think of it this way, if you knew of someone who got dx'd with say cancer, then needed all that rest to stay out of remission, you'd understand if they said 'I'm just focusing on my health right now.'

I pretty much tell everyone. First, b/c I want to tell people about Cf, so that more know about it-I still run into healthcare workers that have never heard of it-omg. Also b/c I want people to understand what I go through. And they can't understand if I don't give them that chance.

I went through this after I moved to a new area, I was kinda prejudging people to not understand before telling them. Anyway, people ask what I do? -I don't work secularly right now, b/c I'm trying to focus on my health, I have Cf and its alot of work to maintain it, and we don't really need me to work right now. But I keep very busy with my volunteer work in the congregation, with the horses on the farm I live on, and my house.

People ususally reply with-oh, cf now what is that again/how does it affect you?-And it gives me chance to briefly explain it. Sure, I've heard of things through the grapevine-1 or 2 people saying stupid things like oh, she's pampered she doesn't work/she just sits at home all day...that happens to everyone b/c there's ignorant people in the world. BUT, for the most part, 99% of my friends and accquaintances are awesome with it. Cf isn't me, but its a big part of me, and I want people to know me.

This is the thing-if/when I "go"- I don't want people to say, wow if I only knew, why didn't she explain this, ect...That's just me. Everyone has to find their own comfort zone. I'm sure you'll find yours.<img src="i/expressions/heart.gif" border="0">