Non-CF friends not "getting it"

[coltsfan715]

I am so sorry that you had/have to or are feeling this way. I have had and do have friends and people in my life that don't get it. I have had the same thing happen in the past - where I am sick and in the hospital and do not recieve a call or anything. I had this happen over my birthday one year ( my 20th b-day to be exact) - I was laid up and didn't get a call from a single person - not a get well - not a happy birthday nothing. Then two weeks after my b-day my "best" friend showed up at my door - her first words to me were "Well I figured I would stop by since YOU haven't bothered to call me for the past month." (it wasn't so much what she said, but add to it the attitude with which she said it and it pissed me off) I just looked at her and told her to go f-- herself basically. She stepped back and looked at me like she didn't deserve that - I reminded her that I had called to tell her I was sick and in the hospital a month prior, that my B-Day had passed and she never even acknowledged it and that she had some nerve to show up at my front door when I was still sick and imply that I should have called her - like she didn't have my phone number too. We ended up not talking for almost 6 months after that. I hear from her occasionally now, but we still aren't as close as we had been in the past.

I have alot of people in my life now that do visit me and do care and may not fully understand, but they at least try. The people I am closest to get it, but there are still several that don't fully get it and probably never will. I contribute alot of that to the fact that I don't walk around with a flashing sign that says I have a problem, I get sick, I go in the hospital, it hurts, it sucks, I get scared and I like to have people at least act like they care sometimes. I tend to walk around acting like it is no big deal that I have CF because it is something I have always had to deal with and I don't want people feeling sorry for me or treating me differently because of it. It just makes you realize who your true friends are and who you can count on I guess.

I do hope that you start feeling better about this. I know it sucks to feel how you are feeling now. I am sure alot of people with CF have experienced similar things, I know I have.
If you want to talk feel free to email me at xiao07@hotmail.com

Hope you start feeling better,
Lindsey

 

[coltsfan715]

I am so sorry that you had/have to or are feeling this way. I have had and do have friends and people in my life that don't get it. I have had the same thing happen in the past - where I am sick and in the hospital and do not recieve a call or anything. I had this happen over my birthday one year ( my 20th b-day to be exact) - I was laid up and didn't get a call from a single person - not a get well - not a happy birthday nothing. Then two weeks after my b-day my "best" friend showed up at my door - her first words to me were "Well I figured I would stop by since YOU haven't bothered to call me for the past month." (it wasn't so much what she said, but add to it the attitude with which she said it and it pissed me off) I just looked at her and told her to go f-- herself basically. She stepped back and looked at me like she didn't deserve that - I reminded her that I had called to tell her I was sick and in the hospital a month prior, that my B-Day had passed and she never even acknowledged it and that she had some nerve to show up at my front door when I was still sick and imply that I should have called her - like she didn't have my phone number too. We ended up not talking for almost 6 months after that. I hear from her occasionally now, but we still aren't as close as we had been in the past.

I have alot of people in my life now that do visit me and do care and may not fully understand, but they at least try. The people I am closest to get it, but there are still several that don't fully get it and probably never will. I contribute alot of that to the fact that I don't walk around with a flashing sign that says I have a problem, I get sick, I go in the hospital, it hurts, it sucks, I get scared and I like to have people at least act like they care sometimes. I tend to walk around acting like it is no big deal that I have CF because it is something I have always had to deal with and I don't want people feeling sorry for me or treating me differently because of it. It just makes you realize who your true friends are and who you can count on I guess.

I do hope that you start feeling better about this. I know it sucks to feel how you are feeling now. I am sure alot of people with CF have experienced similar things, I know I have.
If you want to talk feel free to email me at xiao07@hotmail.com

Hope you start feeling better,
Lindsey

 

[anonymous]

Debbie..... too funny! Course, then I'd have to pay a secretary, and don't have that kind of money..... he he he!

Sean.... I agree, I usually don't want visitors either.... Its tough enough to get a good sleep in the hospital. But, a card or even an email showing me that in the 3 weeks I'm sick someone is thinking of me, would be nice. Or when I've spent an overnight visit in the ER, a phone call to ask if I'm feeling better would be appreciated. That's all. I would never launch into my 50% lung function... that's not who I am. I just think that if you're going to give flower to "cheer" someone up who has a sinus infection, the least you can do in 12 years is send a card or even email to someone who has a collapsed lung. Oh well. Like Debbie said, and now I see, people understand a sinus infection and sick child, and they don't understand CF.

Sonia

 

[anonymous]

Debbie..... too funny! Course, then I'd have to pay a secretary, and don't have that kind of money..... he he he!

Sean.... I agree, I usually don't want visitors either.... Its tough enough to get a good sleep in the hospital. But, a card or even an email showing me that in the 3 weeks I'm sick someone is thinking of me, would be nice. Or when I've spent an overnight visit in the ER, a phone call to ask if I'm feeling better would be appreciated. That's all. I would never launch into my 50% lung function... that's not who I am. I just think that if you're going to give flower to "cheer" someone up who has a sinus infection, the least you can do in 12 years is send a card or even email to someone who has a collapsed lung. Oh well. Like Debbie said, and now I see, people understand a sinus infection and sick child, and they don't understand CF.

Sonia

 

[anonymous]

Lindsey.... I can't believe your friend did that to you!!!! WOW! Makes my slight seem, well.... slight! I'm glad you've moved on.

Sonia

 

[anonymous]

Lindsey.... I can't believe your friend did that to you!!!! WOW! Makes my slight seem, well.... slight! I'm glad you've moved on.

Sonia

 

[CowTown]

Sonia, That really does suck! It's kind of strange you just posted this, because I'm in a somehwhat similar situation right now. I've been thinking about posting my thoughts and questions about it too. How weird. I've had a friend for about 11 years, we went to art school together, went on a trip to Hawaii together and like to hang out on occasion when we're in the same town. Our relationship has grown and gotten closer recently over the past few years, and but still we have know eachother and "hung out" since school which was a long time ago. She has known that I have CF, but I've never talked to her about it before. She's known I go in the hospital for tune-ups and this and that, but we've never had a conversation about CF, I just try and be "normal" because I don't want the sympathy or to sound like a weakling or to scare her. Anyways, last week, we talked briefly about CF for the first time, this was through email though not on the phone which the phone may have been better. She said she didn't really know much about it and wondered how bad it got for me because she thought I must be doing so much better than most since I seem so well, and how bad CF is general. She asked me! So I wrote an email over a week ago explaining how it effects me, what the facts are about CF and ended on a positive note (that you get a great ab workout everyday and it helps you to appreciate life which is nice, etc) because I was aware that I didn't want to scare her in any way. Well......it's been over a week now and I haven't heard a peep from her! Not one thing. It's really been on my mind and I've been wondering if it was just too much for her to take in since she's never really been around 'sick' stuff before. I've been trying to look at it from the outside. Maybe some non-CFers just don't know how to handle it, what do you say since CF is a world away from what they encounter, maybe it's just too strange, too serious. I don't know. I do know that my other friends I can talk to about it and eventhough they don't have CF, they can get their minds to a place where they can somehow 'get it' and be there for me eventhough they don't actually go through it and live with me or whatever. Hopefully my friend will eventually acknowledge this CF email and not write me off, which would be so bizarre. I can't imagine she would do that, but for her not to have written anything yet seems so strange to me. It must have effected her somehow or she doesn't want to deal with it because she's in a brand new relationship with a guy and maybe this new would spoil her high. I don't know.

I wonder if your friends who live 1500 miles away might feel uncomfortable with the big CF since it's so much bigger than their usual stuff. That's not to say that eventhough they might not send flowers or acknowledge when you're in the hospital that they don't truly love you and appreciate you. Maybe they just don't know how to handle it? I don't know, this friend of mine is the first time I've encountered something to that effect too, and I don't really know. Maybe it's outside of their comfort zone to face. I think it was nice of you to send the other friend flowers. I don't think there's any reason to neglect her just because they neglected you. At least you get it and maybe that's all that counts! I know when I'm in the hospital, it can be so lonely. So I feel for you that you want your friends to acknowledge what you go through sometimes and that they're not. I wish they would grow tougher skin for themselves and for you!

 

[CowTown]

Sonia, That really does suck! It's kind of strange you just posted this, because I'm in a somehwhat similar situation right now. I've been thinking about posting my thoughts and questions about it too. How weird. I've had a friend for about 11 years, we went to art school together, went on a trip to Hawaii together and like to hang out on occasion when we're in the same town. Our relationship has grown and gotten closer recently over the past few years, and but still we have know eachother and "hung out" since school which was a long time ago. She has known that I have CF, but I've never talked to her about it before. She's known I go in the hospital for tune-ups and this and that, but we've never had a conversation about CF, I just try and be "normal" because I don't want the sympathy or to sound like a weakling or to scare her. Anyways, last week, we talked briefly about CF for the first time, this was through email though not on the phone which the phone may have been better. She said she didn't really know much about it and wondered how bad it got for me because she thought I must be doing so much better than most since I seem so well, and how bad CF is general. She asked me! So I wrote an email over a week ago explaining how it effects me, what the facts are about CF and ended on a positive note (that you get a great ab workout everyday and it helps you to appreciate life which is nice, etc) because I was aware that I didn't want to scare her in any way. Well......it's been over a week now and I haven't heard a peep from her! Not one thing. It's really been on my mind and I've been wondering if it was just too much for her to take in since she's never really been around 'sick' stuff before. I've been trying to look at it from the outside. Maybe some non-CFers just don't know how to handle it, what do you say since CF is a world away from what they encounter, maybe it's just too strange, too serious. I don't know. I do know that my other friends I can talk to about it and eventhough they don't have CF, they can get their minds to a place where they can somehow 'get it' and be there for me eventhough they don't actually go through it and live with me or whatever. Hopefully my friend will eventually acknowledge this CF email and not write me off, which would be so bizarre. I can't imagine she would do that, but for her not to have written anything yet seems so strange to me. It must have effected her somehow or she doesn't want to deal with it because she's in a brand new relationship with a guy and maybe this new would spoil her high. I don't know.

I wonder if your friends who live 1500 miles away might feel uncomfortable with the big CF since it's so much bigger than their usual stuff. That's not to say that eventhough they might not send flowers or acknowledge when you're in the hospital that they don't truly love you and appreciate you. Maybe they just don't know how to handle it? I don't know, this friend of mine is the first time I've encountered something to that effect too, and I don't really know. Maybe it's outside of their comfort zone to face. I think it was nice of you to send the other friend flowers. I don't think there's any reason to neglect her just because they neglected you. At least you get it and maybe that's all that counts! I know when I'm in the hospital, it can be so lonely. So I feel for you that you want your friends to acknowledge what you go through sometimes and that they're not. I wish they would grow tougher skin for themselves and for you!

 

[anonymous]

Some people are just too self absorbed to get it. I had a good friend in high school with lupus and I can remember another classmate telling me that we just shouldn't get too attached 'cuz when she was diagnosed at 8 they were told she wasn't going to make it thru high school. I apparently "didn't get it" She was my friend. I couldn't write her off. A couple of years ago she died -- she was in her mid-30s. One of our so-called friends, who is a minister and made such a great show of visiting her in the hospital, calling us to give us updates on her condition, couldn't even be bothered to show up for her funeral. I haven't spoken to him since. I'm a firm believer in what goes around comes around -- karma!

I know some people figure that hospitals are a place to heal and that patients just want to be left alone to get better. I usually at least send a card, email or call. Geez! My friend was in the hospital for two months before she died and every day I'd send her some silly postcard, letter, decorations for her room. It really doesn't take all that much effort. Especially a goofy postcard from the grocery store or from some tourist trap.

 

[anonymous]

Some people are just too self absorbed to get it. I had a good friend in high school with lupus and I can remember another classmate telling me that we just shouldn't get too attached 'cuz when she was diagnosed at 8 they were told she wasn't going to make it thru high school. I apparently "didn't get it" She was my friend. I couldn't write her off. A couple of years ago she died -- she was in her mid-30s. One of our so-called friends, who is a minister and made such a great show of visiting her in the hospital, calling us to give us updates on her condition, couldn't even be bothered to show up for her funeral. I haven't spoken to him since. I'm a firm believer in what goes around comes around -- karma!

I know some people figure that hospitals are a place to heal and that patients just want to be left alone to get better. I usually at least send a card, email or call. Geez! My friend was in the hospital for two months before she died and every day I'd send her some silly postcard, letter, decorations for her room. It really doesn't take all that much effort. Especially a goofy postcard from the grocery store or from some tourist trap.

 

[coltsfan715]

<blockquote>Quote<br><hr>I know some people figure that hospitals are a place to heal and that patients just want to be left alone to get better.<hr></blockquote>

It is funny that you posted this. I actually had an acquiantance ( they knew I had CF, but weren't aware of what it was and everything) say that they didn't go to hospitals because that is where people go to die. I had to kind of laugh at her - and just say - dang I guess I am failing at that cause I go in the hospital about once a year and haven't died yet.

As for my prior post Sonia. I just wanted to let you know that you are not alone. Sometimes people don't realize that the things they do and the actions they take will have the affects that they have on people. I'll bet some of your friends don't even know you are bothered by not receiving a card, a get well email or a call. Others probably think that it isn't a big deal when you go in the hospital because it is something that you are "used to" (meaning you do it frequently or w/e not that it is enjoyable or anything). I know most of my friends look at it that way - okay yeah she is in the hospital, but she will be out and at home in about a week then a few weeks later when she gets her IV out she will be able to come out and do everything she was able to do before, so it is no big deal. They act this way because I act this way about it (CF and hospitalizations) to them. My closest friends, family and Kurt (my fiance) know me better. I can tell them that I am bummed or I can cry to them about being couped up and they will listen and not make me feel bad and they will take the extra step to cheer me up.

If this continues to bother you I would try saying something. Just a call and a hey you know when we got flowers for so and so, well it got me to thinking why you guys don't really even acknowledge me when I am sick and in the hospital - but you were beatin down the door to send her flowers cause she didn't feel well. Not that you minded sending her flowers - but that it was just bothering you - because you like to feel cared about and like you are important enough for people to send a card too or call or w/e, but instead feel like you are just pushed out of their minds when you are sick. Like I said - and others may have mentioned on here too - they may not realize that they are doing anything - or in this case that they are NOT doing anything - and that it hurts your feelings.

Take Care,
Lindsey

 

[coltsfan715]

<blockquote>Quote<br><hr>I know some people figure that hospitals are a place to heal and that patients just want to be left alone to get better.<hr></blockquote>

It is funny that you posted this. I actually had an acquiantance ( they knew I had CF, but weren't aware of what it was and everything) say that they didn't go to hospitals because that is where people go to die. I had to kind of laugh at her - and just say - dang I guess I am failing at that cause I go in the hospital about once a year and haven't died yet.

As for my prior post Sonia. I just wanted to let you know that you are not alone. Sometimes people don't realize that the things they do and the actions they take will have the affects that they have on people. I'll bet some of your friends don't even know you are bothered by not receiving a card, a get well email or a call. Others probably think that it isn't a big deal when you go in the hospital because it is something that you are "used to" (meaning you do it frequently or w/e not that it is enjoyable or anything). I know most of my friends look at it that way - okay yeah she is in the hospital, but she will be out and at home in about a week then a few weeks later when she gets her IV out she will be able to come out and do everything she was able to do before, so it is no big deal. They act this way because I act this way about it (CF and hospitalizations) to them. My closest friends, family and Kurt (my fiance) know me better. I can tell them that I am bummed or I can cry to them about being couped up and they will listen and not make me feel bad and they will take the extra step to cheer me up.

If this continues to bother you I would try saying something. Just a call and a hey you know when we got flowers for so and so, well it got me to thinking why you guys don't really even acknowledge me when I am sick and in the hospital - but you were beatin down the door to send her flowers cause she didn't feel well. Not that you minded sending her flowers - but that it was just bothering you - because you like to feel cared about and like you are important enough for people to send a card too or call or w/e, but instead feel like you are just pushed out of their minds when you are sick. Like I said - and others may have mentioned on here too - they may not realize that they are doing anything - or in this case that they are NOT doing anything - and that it hurts your feelings.

Take Care,
Lindsey

 

[Diane]

I know this isnt exactly the same thing but,,,, when i had to have my sinus surgery, my sister-in-law told me that my fathers wife was telling people i was having a nose job. Luckily my sister in law corrected her, but it goes to show since we tend to look healthy and make everthing look so easy because we have been doing it for so long, no-one believes there really is anything wrong.i could go on and on about how my "best friend" of 24 years totally screwed me and betrayed me in some horrible ways right after my second embolization, when i needed my friends the most and yes it does hurt to have the people we think we can count on hurt us. It's no wonder some of us want to run and hide..............

 

[Diane]

I know this isnt exactly the same thing but,,,, when i had to have my sinus surgery, my sister-in-law told me that my fathers wife was telling people i was having a nose job. Luckily my sister in law corrected her, but it goes to show since we tend to look healthy and make everthing look so easy because we have been doing it for so long, no-one believes there really is anything wrong.i could go on and on about how my "best friend" of 24 years totally screwed me and betrayed me in some horrible ways right after my second embolization, when i needed my friends the most and yes it does hurt to have the people we think we can count on hurt us. It's no wonder some of us want to run and hide..............

 

[anonymous]

You know what really worries me about telling them how I feel (which is a great idea, BTW)? I worry that they'll think I'm selfish and a b*tch for making them feel bad. I don't know why I feel this way.... maybe its because whenever they want to go out and go to a bar, I have to explain to them how the smoking bothers me, and I always feel like they think I'm making this up. I've also had issues in the past where I've had to do something like stop somewhere to eat cause of low blood sugar, and it just seems like they think I'm "using" my CF and CFRD as a way to get my way. I even had one friend get angry at me for making us late going somewhere cause we had to stop at mcdonald's on the way for me.... I HAD told her its cause of my blood sugar at the time. Maybe she forgot, cause she just recently emailed me that she was very upset by that and how I'm very selfish. Maybe its cause no one really says anything when I say, "I can't cause of the smoke." I mean, you would think after awhile, they would stop ASKING me to meet them at bars, right? Our class reunion is coming up, and one of my friends emailed that the friday night is social night at a local bar..... I asked them if it was non- smoking and no one even replied to me! Plus, when I mentioned in an email that if its smoking, I probably won't go, no one emailed a word back. I just end up feeling guilty cause no one seems to put my mind at ease.

I appreciate all the responses. I figured ya'll would understand. It just really hurts, cause these are my only close friends, and I'm terrified to lose them, but I want them to know how I feel.

Sonia

 

[anonymous]

You know what really worries me about telling them how I feel (which is a great idea, BTW)? I worry that they'll think I'm selfish and a b*tch for making them feel bad. I don't know why I feel this way.... maybe its because whenever they want to go out and go to a bar, I have to explain to them how the smoking bothers me, and I always feel like they think I'm making this up. I've also had issues in the past where I've had to do something like stop somewhere to eat cause of low blood sugar, and it just seems like they think I'm "using" my CF and CFRD as a way to get my way. I even had one friend get angry at me for making us late going somewhere cause we had to stop at mcdonald's on the way for me.... I HAD told her its cause of my blood sugar at the time. Maybe she forgot, cause she just recently emailed me that she was very upset by that and how I'm very selfish. Maybe its cause no one really says anything when I say, "I can't cause of the smoke." I mean, you would think after awhile, they would stop ASKING me to meet them at bars, right? Our class reunion is coming up, and one of my friends emailed that the friday night is social night at a local bar..... I asked them if it was non- smoking and no one even replied to me! Plus, when I mentioned in an email that if its smoking, I probably won't go, no one emailed a word back. I just end up feeling guilty cause no one seems to put my mind at ease.

I appreciate all the responses. I figured ya'll would understand. It just really hurts, cause these are my only close friends, and I'm terrified to lose them, but I want them to know how I feel.

Sonia

 

[coltsfan715]

Hey Sonia,
The more you post and the more I read the worse I feel for you. I have been in similar situations and it is scary to say anything. I think it is great for you that you don't just cave in and go out with them even though it is smoking and they seem to not understand. I just wanted to let you know that I think it is great that you are standing up and saying you can't go because of the smoke or that you need to eat regardless of their reactions. I know it can be hard. Just rest assured that you are doing what you need to do to take care of you. If you do say something to them and they turn on you, I hate that for you but you may be better off. You and your health are more important than their reactions to you - you are the only person you are going to spend your ENTIRE life with. I hate when people can not step outside of their situation to view something from a different point of view. Hopefully if you do choose to say something to them it will work out.

Kurt had a hard time at first when we were starting to date because we would go somewhere and I would say I need to sit down or slow down because I don't feel well or I need to eat cause my blod sugar is dropping (I have CFRD too). He was a constantly on the go person and it bothered him that I was "slowing things down" at first. After we talked about it and he got to ask questions about how things affect me and all he understood more and he knew that sometimes I just need to eat because whatever we are doing causes my sugar to drop or that I get worn out easier than Joe Schmo next door and so on.

I was going to private message that to you - but I wasn't able too <img src="i/expressions/face-icon-small-smile.gif" border="0">.

PS. If you do say something and the do call you selfish - forget about them -- I will be friends with you and I am sure there are a ton of people on here that would love to be friends with you too.

Lindsey

 

[coltsfan715]

Hey Sonia,
The more you post and the more I read the worse I feel for you. I have been in similar situations and it is scary to say anything. I think it is great for you that you don't just cave in and go out with them even though it is smoking and they seem to not understand. I just wanted to let you know that I think it is great that you are standing up and saying you can't go because of the smoke or that you need to eat regardless of their reactions. I know it can be hard. Just rest assured that you are doing what you need to do to take care of you. If you do say something to them and they turn on you, I hate that for you but you may be better off. You and your health are more important than their reactions to you - you are the only person you are going to spend your ENTIRE life with. I hate when people can not step outside of their situation to view something from a different point of view. Hopefully if you do choose to say something to them it will work out.

Kurt had a hard time at first when we were starting to date because we would go somewhere and I would say I need to sit down or slow down because I don't feel well or I need to eat cause my blod sugar is dropping (I have CFRD too). He was a constantly on the go person and it bothered him that I was "slowing things down" at first. After we talked about it and he got to ask questions about how things affect me and all he understood more and he knew that sometimes I just need to eat because whatever we are doing causes my sugar to drop or that I get worn out easier than Joe Schmo next door and so on.

I was going to private message that to you - but I wasn't able too <img src="i/expressions/face-icon-small-smile.gif" border="0">.

PS. If you do say something and the do call you selfish - forget about them -- I will be friends with you and I am sure there are a ton of people on here that would love to be friends with you too.

Lindsey

 

[anonymous]

I think there's a tension between wanting to be thought of as "normal" and wanting people to "get it".
At least thinking about Rip, I know he put a premium on being thought of as "just like everyone else" to the point of doing what we called "passing as well".
Didn't talk about his treatment schedule, hardly every mentioned being in the hospital or on IVs - and referred to the latter as "cleanouts" as others do here (while if I was in the hospital with such things I would have said I was in the hospital with MRSA pneumonia). And, of course, only going to events when he was feeling really well.
And, of course, it was so hectic when they did decide he needed to go in for a cleanout that lots of times we didn't even tell anyone until he was out.
He passed as well so well that one sister told me that "he's not really sick. He's just faking it."
And most of the friends he made while passing as well were completely thrown for a loop when he went on O2 24/7.
At that point he had to "come out" as someone with a progressive illness.
Some folks stayed around and became real friends that "got it" - friends he could be really intimate with.
Some folks just dropped just dropped away.
Still the only ones who really got it (I think) were his nieces with CF and me (to the extent anyone without a chronic illness can "get it").

I'm sorry you didn't get the support you wanted. That can be real disappointing and lonely.

 

[anonymous]

I think there's a tension between wanting to be thought of as "normal" and wanting people to "get it".
At least thinking about Rip, I know he put a premium on being thought of as "just like everyone else" to the point of doing what we called "passing as well".
Didn't talk about his treatment schedule, hardly every mentioned being in the hospital or on IVs - and referred to the latter as "cleanouts" as others do here (while if I was in the hospital with such things I would have said I was in the hospital with MRSA pneumonia). And, of course, only going to events when he was feeling really well.
And, of course, it was so hectic when they did decide he needed to go in for a cleanout that lots of times we didn't even tell anyone until he was out.
He passed as well so well that one sister told me that "he's not really sick. He's just faking it."
And most of the friends he made while passing as well were completely thrown for a loop when he went on O2 24/7.
At that point he had to "come out" as someone with a progressive illness.
Some folks stayed around and became real friends that "got it" - friends he could be really intimate with.
Some folks just dropped just dropped away.
Still the only ones who really got it (I think) were his nieces with CF and me (to the extent anyone without a chronic illness can "get it").

I'm sorry you didn't get the support you wanted. That can be real disappointing and lonely.