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Non-CF friends not "getting it"

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EB24

New member
I have lost 95% of my friends due to them not understanding. My best friend is in total denial and thinks if he never mentions it, it doesn't exist.
At least he still talks to me, every once in awhile.<img src="i/expressions/face-icon-small-frown.gif" border="0">
 
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EB24

New member
I have lost 95% of my friends due to them not understanding. My best friend is in total denial and thinks if he never mentions it, it doesn't exist.
At least he still talks to me, every once in awhile.<img src="i/expressions/face-icon-small-frown.gif" border="0">
 
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thelizardqueen

New member
My family completly understands my CF, as does my boyfriend, and one of my friends. My other "close" friends get mad at me when I tell them I can't go out when I'm sick, and always complain that I'm sick. One of my "close" friends, goes so far as to ask me if I'm dieing everytime I'm sick. I HATE it. I only say close friends losely, because if they were true friends, they would understand that I'm sick, and be ok with me missing stuff every once and awhile.
 
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thelizardqueen

New member
My family completly understands my CF, as does my boyfriend, and one of my friends. My other "close" friends get mad at me when I tell them I can't go out when I'm sick, and always complain that I'm sick. One of my "close" friends, goes so far as to ask me if I'm dieing everytime I'm sick. I HATE it. I only say close friends losely, because if they were true friends, they would understand that I'm sick, and be ok with me missing stuff every once and awhile.
 
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JennifersHope

New member
Sonia,

For some reason this post made me cry.. A long time ago, when I was in my early 20's and younger, I was in the hospital a lot and I was by myself, I had a jerky boyfriend, no friends, no family that I talked to , nothing... I didn't even have a ride home from the hospital sometimes when I was discharged.... I felt so sad because no one used to call me when I was in the hospital, I had no health insurance so I was on the doctors poop list, and I was downright embarrased that no one was there...but that was a long time ago before I was DX and I think your post reminded me of those feelings.. which is good so that I never take for granted what I have now....

Since being diagnoised, I have never ever felt more loved and supportive by my family and friends... and I know for sure that is their love that keeps me going forward... so I am glad that you have your husband to help you...

My friends are always there for me with more love than I can bare, and after reading your post, I am even more humbled by the fact that I have them.

You know I hate to say this about your friends, but they don't sound like friends to me, and being afraid to say something to them because they are all you have is something I understand....I know you already know this already but if they are going to stop being your friend because you raise issues with them, then they are not true friends.

True friendships stand by each other through thick and thin.... Now in all fairness to your friends, maybe they dont' know how to be with you, so they deny anything is wrong... Maybe they have a reason for doing it, and even though it is hurtful to you, they may have the best intentions.. Can I tell you that I spent the last few years mad about something because I didn't understand His intention toward me. and as it turned out I concocked something in my head, that wasn't even reality, I just thought I knew the intentions, and I was wrong....

I would talk to them and be truthful, say your feelings are hurt, and that you value the friendship so much that you were afraid to say something, but you are just wondering... tell them maybe you misunderstand, but it FEELS like they don't care...

See what they say.....

You know that we all support you, understand what you are feeling, and please post when you go in the hosptial.. I am pretty good about sending cards.. We all need each other to support each other...

Jennifer
 
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JennifersHope

New member
Sonia,

For some reason this post made me cry.. A long time ago, when I was in my early 20's and younger, I was in the hospital a lot and I was by myself, I had a jerky boyfriend, no friends, no family that I talked to , nothing... I didn't even have a ride home from the hospital sometimes when I was discharged.... I felt so sad because no one used to call me when I was in the hospital, I had no health insurance so I was on the doctors poop list, and I was downright embarrased that no one was there...but that was a long time ago before I was DX and I think your post reminded me of those feelings.. which is good so that I never take for granted what I have now....

Since being diagnoised, I have never ever felt more loved and supportive by my family and friends... and I know for sure that is their love that keeps me going forward... so I am glad that you have your husband to help you...

My friends are always there for me with more love than I can bare, and after reading your post, I am even more humbled by the fact that I have them.

You know I hate to say this about your friends, but they don't sound like friends to me, and being afraid to say something to them because they are all you have is something I understand....I know you already know this already but if they are going to stop being your friend because you raise issues with them, then they are not true friends.

True friendships stand by each other through thick and thin.... Now in all fairness to your friends, maybe they dont' know how to be with you, so they deny anything is wrong... Maybe they have a reason for doing it, and even though it is hurtful to you, they may have the best intentions.. Can I tell you that I spent the last few years mad about something because I didn't understand His intention toward me. and as it turned out I concocked something in my head, that wasn't even reality, I just thought I knew the intentions, and I was wrong....

I would talk to them and be truthful, say your feelings are hurt, and that you value the friendship so much that you were afraid to say something, but you are just wondering... tell them maybe you misunderstand, but it FEELS like they don't care...

See what they say.....

You know that we all support you, understand what you are feeling, and please post when you go in the hosptial.. I am pretty good about sending cards.. We all need each other to support each other...

Jennifer
 
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kybert

New member
cant really add much. just wanted to say that most people stink and im sure all of us have experienced or are still experiencing this.
 
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kybert

New member
cant really add much. just wanted to say that most people stink and im sure all of us have experienced or are still experiencing this.
 
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shauna

New member
i've felt like this a lot (more with family than friends though). i think sometimes people just think "she's in hopsital again, but she doesnt look unwell so it cant be too bad." i think that lots of people just dont understand but hey in a way i guess we can consider ourselves lucky...we'll always know who are true friends are.
 
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shauna

New member
i've felt like this a lot (more with family than friends though). i think sometimes people just think "she's in hopsital again, but she doesnt look unwell so it cant be too bad." i think that lots of people just dont understand but hey in a way i guess we can consider ourselves lucky...we'll always know who are true friends are.
 
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anonymous

New member
I've experienced all this too. I wish I could say I understand it. I think sometimes people do feel bad, but don't know how to show it so they run away from the problem. I also think people in general are inherently selfish.
But part of my problem is not speaking up. Sometimes you do have to say to people, I could use a little help here! I think people get so wrapped up in their own lives that they forget, and maybe some fo your closer friends need a shot of your reality. If you think these people are worth it, meet them for lunch and telll them they're never there when you need a friend. Maybe you need to take the initiative and speak up more. You sound like me, how you chipped in on the flowers for that other girl. I would have probably given in too, but it was probably not the best thing to do.

And yes, you do have people here that truly understand!

Christian
 
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anonymous

New member
I've experienced all this too. I wish I could say I understand it. I think sometimes people do feel bad, but don't know how to show it so they run away from the problem. I also think people in general are inherently selfish.
But part of my problem is not speaking up. Sometimes you do have to say to people, I could use a little help here! I think people get so wrapped up in their own lives that they forget, and maybe some fo your closer friends need a shot of your reality. If you think these people are worth it, meet them for lunch and telll them they're never there when you need a friend. Maybe you need to take the initiative and speak up more. You sound like me, how you chipped in on the flowers for that other girl. I would have probably given in too, but it was probably not the best thing to do.

And yes, you do have people here that truly understand!

Christian
 
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anonymous

New member
I don't think this is all the friends fault though. My best friends have all done the same things that your did Sonia and yes it hurt a lot at the time. But we have no idea how it feels to be them, just as though they have no idea what it is like to be us. My friends don't have serious diseases so they can't understand how it feels. My friends do get mad when I get sick all the time, although they don't say it. I think that it is hard for them to understand how we can't always go to bars because they are breathing fine and can't imagine not. I think that maybe it is a constant worry about us so when we get really sick then it is not shown as much. I feel bad when my friends get really sick, even though it is not as bad as me, because they are not used to it. Us CFers are strong and we hide our emotions about the disease well. No one can always worry and understand us but that does not make them bad friends. Maybe you should try talking to them and say that it bothers you that they do certain things and really talk about the issues.
My mom had severe panic disorder and whenever she got the attacks I would get mad at here for acting "strange" and just want her to stop. I knew that she couldn't but I could never understand it because I don't have that problem. In my mind, there is no reason for panic so it is so hard to understand why she needs to. And when she had it every day it got tiring and annoying. I hated myself for thinking like that but I realize that I have no idea what it is like to have a mental disease like that, just like our friends don't know what it is like to be us. That doesn't make them worth not being your friends I don't think

Sue 23
 
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anonymous

New member
I don't think this is all the friends fault though. My best friends have all done the same things that your did Sonia and yes it hurt a lot at the time. But we have no idea how it feels to be them, just as though they have no idea what it is like to be us. My friends don't have serious diseases so they can't understand how it feels. My friends do get mad when I get sick all the time, although they don't say it. I think that it is hard for them to understand how we can't always go to bars because they are breathing fine and can't imagine not. I think that maybe it is a constant worry about us so when we get really sick then it is not shown as much. I feel bad when my friends get really sick, even though it is not as bad as me, because they are not used to it. Us CFers are strong and we hide our emotions about the disease well. No one can always worry and understand us but that does not make them bad friends. Maybe you should try talking to them and say that it bothers you that they do certain things and really talk about the issues.
My mom had severe panic disorder and whenever she got the attacks I would get mad at here for acting "strange" and just want her to stop. I knew that she couldn't but I could never understand it because I don't have that problem. In my mind, there is no reason for panic so it is so hard to understand why she needs to. And when she had it every day it got tiring and annoying. I hated myself for thinking like that but I realize that I have no idea what it is like to have a mental disease like that, just like our friends don't know what it is like to be us. That doesn't make them worth not being your friends I don't think

Sue 23
 
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AllansGirl

Guest
A friend of mine often says, "People suck, except when they don't." Ya'll have just listed so many examples of people sucking, it boggles the mind. It seems that most of the friends a lot of you have mentioned either aren't aware of how serious CF is, or they are, and are terrified of any mention of it.

I'm sorry.

I know that it was always difficult for me to talk to Allan about it, especially when we lived on opposite sides of the country and I wasn't able to communicate how I felt non-verbally by hugging him whenever he told me something new and terrifying about his health. When the person I cared most about was telling me about another life-threatening complication, it was hard to find the words to say anything, really.

It's no excuse for your friends to not call or show any concern, though.
 
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AllansGirl

Guest
A friend of mine often says, "People suck, except when they don't." Ya'll have just listed so many examples of people sucking, it boggles the mind. It seems that most of the friends a lot of you have mentioned either aren't aware of how serious CF is, or they are, and are terrified of any mention of it.

I'm sorry.

I know that it was always difficult for me to talk to Allan about it, especially when we lived on opposite sides of the country and I wasn't able to communicate how I felt non-verbally by hugging him whenever he told me something new and terrifying about his health. When the person I cared most about was telling me about another life-threatening complication, it was hard to find the words to say anything, really.

It's no excuse for your friends to not call or show any concern, though.
 
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anonymous

New member
I learned a long time ago to have good friends we need to have empathy or at least try and relate somehow in the conversation. If someone is pouring their heart out about their illness and the listener has no idea what to say, they could say something like, "I have no idea what you are going through but I would be willing to listen more and you can further describe how it makes you feel." Ignoring someone when they are sick to me, is just a sign of weakness and selfishness. Do you really need friends who appear to be fair weather friends? There are very young people who have compassion and they know how to be gentle with words. People who care just a little will not ignore you and what you have to say or not call you when you are not well. If people do not want to visit you in the hospital then at least call or send a card. I have a friend who I hardly see and he was trying to get in touch with my hubbie and could not connect but he managed to come and visit me when I had my transplant. He is a true friend. I hardly see him because he is always getting colds but we talk on the phone often.
 
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anonymous

New member
I learned a long time ago to have good friends we need to have empathy or at least try and relate somehow in the conversation. If someone is pouring their heart out about their illness and the listener has no idea what to say, they could say something like, "I have no idea what you are going through but I would be willing to listen more and you can further describe how it makes you feel." Ignoring someone when they are sick to me, is just a sign of weakness and selfishness. Do you really need friends who appear to be fair weather friends? There are very young people who have compassion and they know how to be gentle with words. People who care just a little will not ignore you and what you have to say or not call you when you are not well. If people do not want to visit you in the hospital then at least call or send a card. I have a friend who I hardly see and he was trying to get in touch with my hubbie and could not connect but he managed to come and visit me when I had my transplant. He is a true friend. I hardly see him because he is always getting colds but we talk on the phone often.
 
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