Do you tell people...?

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Scarlett81

New member
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">
 
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anonymous

New member
On a lighter note you could always have a little fun and tell people you have things you know will warp their mind<img src="i/expressions/face-icon-small-shocked.gif" border="0">. Make up an illness, something that sounds scientific and see what how they react. Kind of like a twisted little social experiment. Tell one person you have CF and then another you have...<i>well whatever</i>. It's really fun to watch their reactions. And you know they go home later googling the he!! out of the net to find this made up illness. AHHHHH, CF does have it's humorous moments<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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anonymous

New member
On a lighter note you could always have a little fun and tell people you have things you know will warp their mind<img src="i/expressions/face-icon-small-shocked.gif" border="0">. Make up an illness, something that sounds scientific and see what how they react. Kind of like a twisted little social experiment. Tell one person you have CF and then another you have...<i>well whatever</i>. It's really fun to watch their reactions. And you know they go home later googling the he!! out of the net to find this made up illness. AHHHHH, CF does have it's humorous moments<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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anonymous

New member
On a lighter note you could always have a little fun and tell people you have things you know will warp their mind<img src="i/expressions/face-icon-small-shocked.gif" border="0">. Make up an illness, something that sounds scientific and see what how they react. Kind of like a twisted little social experiment. Tell one person you have CF and then another you have...<i>well whatever</i>. It's really fun to watch their reactions. And you know they go home later googling the he!! out of the net to find this made up illness. AHHHHH, CF does have it's humorous moments<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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coltsfan715

New member
Anon.
Your post made me laugh because I have often wanted to do this to some people I know. Not to make them search for hours for a made up illness, but because they are always saying they have everyone else's health problems.

I had gallstone attacks .. so did they (funny they never went to the doc). I get bouts of pleurisy .. so do they. I have a lung infection .. so do they. I hurt my ankle so did they anything and everything they have, have had or are getting it.

I have often wanted to make up some totally bizarre illness that doesn't even exist with symptoms that are so random and off the wall that it would prove that they are a hypochondriac if they said they had the problem as well. Just like oh I went to the do with headaches, my left foot is swelling while causing me to have the urge to stand on my head and do the hokie pokie while sipping milk through a coffee stirrer. The doc told me I have hokie-pokie-itis or something retarded like that and just wait for the response ... oh really I may have that .. I get the urge to stand on my head and do the hokie pokie while sipping milk through tiny straws too lol.

Sorry ... just a little peak into my sick mind. Sorry for going off topic on your thread Kelly.

Lindsey
 
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coltsfan715

New member
Anon.
Your post made me laugh because I have often wanted to do this to some people I know. Not to make them search for hours for a made up illness, but because they are always saying they have everyone else's health problems.

I had gallstone attacks .. so did they (funny they never went to the doc). I get bouts of pleurisy .. so do they. I have a lung infection .. so do they. I hurt my ankle so did they anything and everything they have, have had or are getting it.

I have often wanted to make up some totally bizarre illness that doesn't even exist with symptoms that are so random and off the wall that it would prove that they are a hypochondriac if they said they had the problem as well. Just like oh I went to the do with headaches, my left foot is swelling while causing me to have the urge to stand on my head and do the hokie pokie while sipping milk through a coffee stirrer. The doc told me I have hokie-pokie-itis or something retarded like that and just wait for the response ... oh really I may have that .. I get the urge to stand on my head and do the hokie pokie while sipping milk through tiny straws too lol.

Sorry ... just a little peak into my sick mind. Sorry for going off topic on your thread Kelly.

Lindsey
 
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coltsfan715

New member
Anon.
Your post made me laugh because I have often wanted to do this to some people I know. Not to make them search for hours for a made up illness, but because they are always saying they have everyone else's health problems.

I had gallstone attacks .. so did they (funny they never went to the doc). I get bouts of pleurisy .. so do they. I have a lung infection .. so do they. I hurt my ankle so did they anything and everything they have, have had or are getting it.

I have often wanted to make up some totally bizarre illness that doesn't even exist with symptoms that are so random and off the wall that it would prove that they are a hypochondriac if they said they had the problem as well. Just like oh I went to the do with headaches, my left foot is swelling while causing me to have the urge to stand on my head and do the hokie pokie while sipping milk through a coffee stirrer. The doc told me I have hokie-pokie-itis or something retarded like that and just wait for the response ... oh really I may have that .. I get the urge to stand on my head and do the hokie pokie while sipping milk through tiny straws too lol.

Sorry ... just a little peak into my sick mind. Sorry for going off topic on your thread Kelly.

Lindsey
 
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CowTown

New member
Amy, you seem to handle it well and have it under control in conversations. That's awesome. I wish I was more comfortable with it then I am. That could be the main issue for me.

Christian, I think you might be right about that it is more uncomfortable for us then it is for them. So basically I'm just projecting my insecurities about it on them, and that seems about right. I think that definitely happens with me, and I would like to stop that! Funny you mentioned the scenario about someone you know who just got dx with cancer and them saying they need to take a break and focus on health. That was something the guy I ran into from elementary school mentioned, that one of the friends he was traveling with had to deal with. So I was aware of how he dealt with "cancer" and he was fine, mellow and matter of fact about his friend needing to refocus, etc. There I am thinking, gosh if I tell him right now that I have CF and have refocused on health and taking care of myself that it would somehow throw the conversation off the tracks. I didn't want that to happen so I didn't mention it and carried on like it doesn't exist. I need to get a grip and I'm working on how I can make MYSELF feel more comfortable about sharing this part of me.

Lindsey, you seem to have it all worked out for you too. That's great!

After seeing a shrink for years, about 15-20 years ago, I learned that one issue I carry with me is that growing up I got a lot of attention but it was "negative attention" from the cf. I'd get other positive attention for things, but the extra negative attention from parents like, "Kelly do you have a jacket with you?, Are you getting a cold?, How do you feel?, Don't do too much, where my sister didn't get as much attention since she didn't have cf and the extra health concerns everyday. I think all this effected me in how I handle/feel telling people. I don't want that negative attention and yet I probably connect talking about cf with negativity. I feel much better and have a brighter perspective when CF is not in the front of my thoughts. So when I do fill someone in on it, it just feels like I've taken the conversation down several levels. And why do that if you don't need to? You know? Well, that's my psycho babble for the day, and I am working on this.

I am by far the most open about cf stuff with my husband b/c he really needs to know everything so that he doesn't get hit over the head with a 2x4 when things take a fall. He's super with me about keeping that open communication going.

Thanks for everyone's repsonses! It's great to hear other people's perspective on this! I've seen other threads on this subject before, but it's different when you're dealing with it right now versus a while ago.
 
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CowTown

New member
Amy, you seem to handle it well and have it under control in conversations. That's awesome. I wish I was more comfortable with it then I am. That could be the main issue for me.

Christian, I think you might be right about that it is more uncomfortable for us then it is for them. So basically I'm just projecting my insecurities about it on them, and that seems about right. I think that definitely happens with me, and I would like to stop that! Funny you mentioned the scenario about someone you know who just got dx with cancer and them saying they need to take a break and focus on health. That was something the guy I ran into from elementary school mentioned, that one of the friends he was traveling with had to deal with. So I was aware of how he dealt with "cancer" and he was fine, mellow and matter of fact about his friend needing to refocus, etc. There I am thinking, gosh if I tell him right now that I have CF and have refocused on health and taking care of myself that it would somehow throw the conversation off the tracks. I didn't want that to happen so I didn't mention it and carried on like it doesn't exist. I need to get a grip and I'm working on how I can make MYSELF feel more comfortable about sharing this part of me.

Lindsey, you seem to have it all worked out for you too. That's great!

After seeing a shrink for years, about 15-20 years ago, I learned that one issue I carry with me is that growing up I got a lot of attention but it was "negative attention" from the cf. I'd get other positive attention for things, but the extra negative attention from parents like, "Kelly do you have a jacket with you?, Are you getting a cold?, How do you feel?, Don't do too much, where my sister didn't get as much attention since she didn't have cf and the extra health concerns everyday. I think all this effected me in how I handle/feel telling people. I don't want that negative attention and yet I probably connect talking about cf with negativity. I feel much better and have a brighter perspective when CF is not in the front of my thoughts. So when I do fill someone in on it, it just feels like I've taken the conversation down several levels. And why do that if you don't need to? You know? Well, that's my psycho babble for the day, and I am working on this.

I am by far the most open about cf stuff with my husband b/c he really needs to know everything so that he doesn't get hit over the head with a 2x4 when things take a fall. He's super with me about keeping that open communication going.

Thanks for everyone's repsonses! It's great to hear other people's perspective on this! I've seen other threads on this subject before, but it's different when you're dealing with it right now versus a while ago.
 
C

CowTown

New member
Amy, you seem to handle it well and have it under control in conversations. That's awesome. I wish I was more comfortable with it then I am. That could be the main issue for me.

Christian, I think you might be right about that it is more uncomfortable for us then it is for them. So basically I'm just projecting my insecurities about it on them, and that seems about right. I think that definitely happens with me, and I would like to stop that! Funny you mentioned the scenario about someone you know who just got dx with cancer and them saying they need to take a break and focus on health. That was something the guy I ran into from elementary school mentioned, that one of the friends he was traveling with had to deal with. So I was aware of how he dealt with "cancer" and he was fine, mellow and matter of fact about his friend needing to refocus, etc. There I am thinking, gosh if I tell him right now that I have CF and have refocused on health and taking care of myself that it would somehow throw the conversation off the tracks. I didn't want that to happen so I didn't mention it and carried on like it doesn't exist. I need to get a grip and I'm working on how I can make MYSELF feel more comfortable about sharing this part of me.

Lindsey, you seem to have it all worked out for you too. That's great!

After seeing a shrink for years, about 15-20 years ago, I learned that one issue I carry with me is that growing up I got a lot of attention but it was "negative attention" from the cf. I'd get other positive attention for things, but the extra negative attention from parents like, "Kelly do you have a jacket with you?, Are you getting a cold?, How do you feel?, Don't do too much, where my sister didn't get as much attention since she didn't have cf and the extra health concerns everyday. I think all this effected me in how I handle/feel telling people. I don't want that negative attention and yet I probably connect talking about cf with negativity. I feel much better and have a brighter perspective when CF is not in the front of my thoughts. So when I do fill someone in on it, it just feels like I've taken the conversation down several levels. And why do that if you don't need to? You know? Well, that's my psycho babble for the day, and I am working on this.

I am by far the most open about cf stuff with my husband b/c he really needs to know everything so that he doesn't get hit over the head with a 2x4 when things take a fall. He's super with me about keeping that open communication going.

Thanks for everyone's repsonses! It's great to hear other people's perspective on this! I've seen other threads on this subject before, but it's different when you're dealing with it right now versus a while ago.
 
A

anonymous

New member
Kelly I understand as well, I have started being a lot more open with my CF, I guess you can say sort of 'forced' into it when I get sick and then carry around a bag of IV meds all day!!! I also don't like to tell people alot because I don't like the extra 'negative attention' as you call it, the 'are you sure you can do it'? 'We don't want you to over do it'! 'You'r health is more important'. I know all that and I will base my decision on what I feel is right with my health, I just hate people assuming I can't do stuff because I have CF.

Also I don't work anymore so I'm also in that boat of 'what do you do'. Still getting use to that one. I do agree though that we need to share with others because we need to get the awareness out more. Then people will associate CF with people that aren't just sick all the time, that we can work and be athletic.

Lindsey and Amy thanks for your comments.
 
A

anonymous

New member
Kelly I understand as well, I have started being a lot more open with my CF, I guess you can say sort of 'forced' into it when I get sick and then carry around a bag of IV meds all day!!! I also don't like to tell people alot because I don't like the extra 'negative attention' as you call it, the 'are you sure you can do it'? 'We don't want you to over do it'! 'You'r health is more important'. I know all that and I will base my decision on what I feel is right with my health, I just hate people assuming I can't do stuff because I have CF.

Also I don't work anymore so I'm also in that boat of 'what do you do'. Still getting use to that one. I do agree though that we need to share with others because we need to get the awareness out more. Then people will associate CF with people that aren't just sick all the time, that we can work and be athletic.

Lindsey and Amy thanks for your comments.
 
A

anonymous

New member
Kelly I understand as well, I have started being a lot more open with my CF, I guess you can say sort of 'forced' into it when I get sick and then carry around a bag of IV meds all day!!! I also don't like to tell people alot because I don't like the extra 'negative attention' as you call it, the 'are you sure you can do it'? 'We don't want you to over do it'! 'You'r health is more important'. I know all that and I will base my decision on what I feel is right with my health, I just hate people assuming I can't do stuff because I have CF.

Also I don't work anymore so I'm also in that boat of 'what do you do'. Still getting use to that one. I do agree though that we need to share with others because we need to get the awareness out more. Then people will associate CF with people that aren't just sick all the time, that we can work and be athletic.

Lindsey and Amy thanks for your comments.
 
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Allie

New member
Ry told everyone he had CF, if they cared to hear about it. Coworkers, friends, the guy who works at the corner store, Ry was basically an open book. He told them all about it, then moved on to the next topic to show it was just another thing about him, like him being Jewish or having a kid. It was something different about him, but the need for more than basic consideration wasn't called for. He tried to avoid the negative attention thing.

If anyone did try to baby him about it in an annoying way, he just told them that he'd lived with it this long, he was pretty sure he knew how to handle it, and he wanted to live while he was alive anyhow.

I don't blame you for being apprehensive about telling people, but I hope you don't have to be <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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