Non-CF friends not "getting it"

[anonymous]

I agree perhaps I should confront them, but remember, we live 1500 miles away, so in order to talk to everyone I'd pretty much have to either call everyone seperately and explain my situation over and over OR a mass email....

I want to add that when I HAVE told my friends EXACTLY what I needed, still, no one did a thing. For example, when I had a collapsed lung, I was put on IV's and was staying on an air force base in temporary housing (still 1500 miles away from my friends) with just my hubby. I made a special trip to go to the library to email everyone and let them know. I also told them I was VERY weak and VERY scared about all of this, as I'd never had a collapsed lung b-4. I told them I'd have my cell phone with me the entire time I was on IV's and they could call anytime to chat. How could I have been more clear???? Everynight I'd plug in my phone to recharge and be reminded again that I hadn't had a single call that day. This went on for 2 1/2 weeks. And, when I ran a high fever and went to the ER, once I felt better, I emailed everyone again letting them know what was going on. Again, not a single call. So, its not that I'm not communicating to them how scared and sick I feel. I mean, what more could I do????

Sonia

 

[anonymous]

I agree perhaps I should confront them, but remember, we live 1500 miles away, so in order to talk to everyone I'd pretty much have to either call everyone seperately and explain my situation over and over OR a mass email....

I want to add that when I HAVE told my friends EXACTLY what I needed, still, no one did a thing. For example, when I had a collapsed lung, I was put on IV's and was staying on an air force base in temporary housing (still 1500 miles away from my friends) with just my hubby. I made a special trip to go to the library to email everyone and let them know. I also told them I was VERY weak and VERY scared about all of this, as I'd never had a collapsed lung b-4. I told them I'd have my cell phone with me the entire time I was on IV's and they could call anytime to chat. How could I have been more clear???? Everynight I'd plug in my phone to recharge and be reminded again that I hadn't had a single call that day. This went on for 2 1/2 weeks. And, when I ran a high fever and went to the ER, once I felt better, I emailed everyone again letting them know what was going on. Again, not a single call. So, its not that I'm not communicating to them how scared and sick I feel. I mean, what more could I do????

Sonia

 

[thelizardqueen]

There's really nothing much else you can do, short of flying to see them, and shaking all of them seperatly till they get it, and even then they might not.<img src="i/expressions/face-icon-small-smile.gif" border="0"> Seems to me, that maybe you should step up and tell them that it hurts when they don't seem to care. Tell them what you're telling us. Maybe, and this is a big maybe - maybe they don't realize that they're hurting you?

 

[thelizardqueen]

There's really nothing much else you can do, short of flying to see them, and shaking all of them seperatly till they get it, and even then they might not.<img src="i/expressions/face-icon-small-smile.gif" border="0"> Seems to me, that maybe you should step up and tell them that it hurts when they don't seem to care. Tell them what you're telling us. Maybe, and this is a big maybe - maybe they don't realize that they're hurting you?

 

[anonymous]

To me I think these are signs that they do not care and if they do not care they are not friends period. Some people never get it.

 

[anonymous]

To me I think these are signs that they do not care and if they do not care they are not friends period. Some people never get it.

 

[anonymous]

1500 miles is a long long way away.
I wonder if your friends sort of "dropping away" is as much a function of your being a military spouse now and living far away as much as anything.
That happens to lots of people when they have a "life change" like marrying, moving, etc.
Might search the web for a military spouse forum and post your concerns there too.
Find out what others do to make new friends when they are military wives?
How they build new support networks on new bases?
How they handle health issues in that new setting?
just a thought,
lisav

 

[anonymous]

1500 miles is a long long way away.
I wonder if your friends sort of "dropping away" is as much a function of your being a military spouse now and living far away as much as anything.
That happens to lots of people when they have a "life change" like marrying, moving, etc.
Might search the web for a military spouse forum and post your concerns there too.
Find out what others do to make new friends when they are military wives?
How they build new support networks on new bases?
How they handle health issues in that new setting?
just a thought,
lisav

 

[anonymous]

I know some of it is probably "out of sight out of mind", but these are friends that I do still talk to on the phone, email, and they even fly out to see me, and vice versa, so to me, being a far way away when I'm sick is no excuse. Again, they think to call me when one of them needs flowers and everyone is going in on them, so why wouldn't they think of me when I'm sick?

I may add, they didn't come visit me when I was IN the hospital when we were all in high school and for the 4 years I lived there AFTER high school either. So, the distance couldn't have been the problem then. I didn't really ever mind too much then, cause I figured, "well, I don't let them know how sick I am to be in, and don't want them to worry...." So, I always just ignored it figuring they just didn't think it was too bad, and they'd be there when I really needed them. But, now that I do live all alone with just my hubby and no family around, I really do need to know they're thinking of me. I mean, that is why I emailed them.... to let them know how alone I felt and how sick I really was. And, its not that I just sat down to email them for the first time in years... I mean, I usually email them "how are you?" type crap at least a couple times a week. So, for that, they will reply or call back, but for a sickness or loneliness, they don't.

As far as meeting other military spouses, I have done that at all our stations so far.... and, I keep in contact via email with a couple of them, but it is hard since most spouses work or have families to run, so it is tough to "bond" with them and let them into my world of CF and treatments and sickness and everything without looking needy. I usually downplay it when meeting other spouses, until I really get to know them and bond with them. This happened with one other lady in Texas, however, since then, I've moved (again) so I don't feel comfortable calling or emailing her to vent about my health after knowing her 1 1/2 years. I don't know. I'm not trying to make excuses. Its just hard enough to let people in, and even tougher when you know you'll be leaving them in 2-3 years. Ya know?

I know what I'm getting at with all these posts is like others say, "they just aren't your friends if they're not there for you when you reach out to them." I feel maybe that is the case at this point. I don't know how I could make it more clear that I needed them, and the fact that I'm terrified to tell them how hurt I am cause I think they'll drop me, may say a lot about the way I feel about the friendship already. Obviously, I'm not comfortable with it and, for some reason, am not comfortable enough to say so. Yet, I'm also hurting keeping up this charade. But, I guess a friendship based on me "faking it" and feeling like at least I have friends, is better to me than having no friends at all.

Sorry to vent. I just don't know what to do. And, the truth about all this really hurts.

Sonia

 

[anonymous]

I know some of it is probably "out of sight out of mind", but these are friends that I do still talk to on the phone, email, and they even fly out to see me, and vice versa, so to me, being a far way away when I'm sick is no excuse. Again, they think to call me when one of them needs flowers and everyone is going in on them, so why wouldn't they think of me when I'm sick?

I may add, they didn't come visit me when I was IN the hospital when we were all in high school and for the 4 years I lived there AFTER high school either. So, the distance couldn't have been the problem then. I didn't really ever mind too much then, cause I figured, "well, I don't let them know how sick I am to be in, and don't want them to worry...." So, I always just ignored it figuring they just didn't think it was too bad, and they'd be there when I really needed them. But, now that I do live all alone with just my hubby and no family around, I really do need to know they're thinking of me. I mean, that is why I emailed them.... to let them know how alone I felt and how sick I really was. And, its not that I just sat down to email them for the first time in years... I mean, I usually email them "how are you?" type crap at least a couple times a week. So, for that, they will reply or call back, but for a sickness or loneliness, they don't.

As far as meeting other military spouses, I have done that at all our stations so far.... and, I keep in contact via email with a couple of them, but it is hard since most spouses work or have families to run, so it is tough to "bond" with them and let them into my world of CF and treatments and sickness and everything without looking needy. I usually downplay it when meeting other spouses, until I really get to know them and bond with them. This happened with one other lady in Texas, however, since then, I've moved (again) so I don't feel comfortable calling or emailing her to vent about my health after knowing her 1 1/2 years. I don't know. I'm not trying to make excuses. Its just hard enough to let people in, and even tougher when you know you'll be leaving them in 2-3 years. Ya know?

I know what I'm getting at with all these posts is like others say, "they just aren't your friends if they're not there for you when you reach out to them." I feel maybe that is the case at this point. I don't know how I could make it more clear that I needed them, and the fact that I'm terrified to tell them how hurt I am cause I think they'll drop me, may say a lot about the way I feel about the friendship already. Obviously, I'm not comfortable with it and, for some reason, am not comfortable enough to say so. Yet, I'm also hurting keeping up this charade. But, I guess a friendship based on me "faking it" and feeling like at least I have friends, is better to me than having no friends at all.

Sorry to vent. I just don't know what to do. And, the truth about all this really hurts.

Sonia

 

[coltsfan715]

Hey Sonia,
I am not going to make some long post -- again. I just wanted to let you know I was thinking about you and I am hoping that you are starting to feel even a bit better about the situation you are in.
If you want to rant or just talk - feel free to email me whenever - just put Cystic Fibrosis or something along those lines in the Subject line. I know you don't know me, but I will listen and talk to you if you are looking for someone to talk too.

My email is xiao07@hotmail.com. I do hope you start feeling better about all this.

If you need someone to talk too just email me <img src="i/expressions/face-icon-small-smile.gif" border="0">
Lindsey

 

[coltsfan715]

Hey Sonia,
I am not going to make some long post -- again. I just wanted to let you know I was thinking about you and I am hoping that you are starting to feel even a bit better about the situation you are in.
If you want to rant or just talk - feel free to email me whenever - just put Cystic Fibrosis or something along those lines in the Subject line. I know you don't know me, but I will listen and talk to you if you are looking for someone to talk too.

My email is xiao07@hotmail.com. I do hope you start feeling better about all this.

If you need someone to talk too just email me <img src="i/expressions/face-icon-small-smile.gif" border="0">
Lindsey

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>IAs far as meeting other military spouses, I have done that at all our stations so far.... and, I keep in contact via email with a couple of them, but it is hard since most spouses work or have families to run, so it is tough to "bond" with them and let them into my world of CF and treatments and sickness and everything without looking needy. I usually downplay it when meeting other spouses, until I really get to know them and bond with them. This happened with one other lady in Texas, however, since then, I've moved (again) so I don't feel comfortable calling or emailing her to vent about my health after knowing her 1 1/2 years. I don't know. I'm not trying to make excuses. Its just hard enough to let people in, and even tougher when you know you'll be leaving them in 2-3 years. Ya know?

Sorry to vent. I just don't know what to do. And, the truth about all this really hurts.
Sonia<hr></blockquote>


I am so sorry, Sonia. I can feel your pain all the way across the web.

About the opening up and bonding with people that you KNOW will be moving away.....
That's the part that is absolutely unique to being a military wife (tho' professors without tenure move and move too).

I haven't known many military wives. But when I was growing up on a state university campus I always knew the army and air force "brats" of the folks that were on campus to run ROTC and such. Those kids were extraordinarily skilled at moving into new communities and bonding. Partly they did open up right away and also they immediately joined something.
Not saying you should do either, just commenting on the obvious - the military is a completely different life style than any other. You will probably have to learn completely new ways of dealing to have the support you need.

I'm not sure how people learn to do this.
I started a separate thread to see if anyone else does.
Please think of me as a member of your support team at least.
-lisav
randev AT verizon.net

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>IAs far as meeting other military spouses, I have done that at all our stations so far.... and, I keep in contact via email with a couple of them, but it is hard since most spouses work or have families to run, so it is tough to "bond" with them and let them into my world of CF and treatments and sickness and everything without looking needy. I usually downplay it when meeting other spouses, until I really get to know them and bond with them. This happened with one other lady in Texas, however, since then, I've moved (again) so I don't feel comfortable calling or emailing her to vent about my health after knowing her 1 1/2 years. I don't know. I'm not trying to make excuses. Its just hard enough to let people in, and even tougher when you know you'll be leaving them in 2-3 years. Ya know?

Sorry to vent. I just don't know what to do. And, the truth about all this really hurts.
Sonia<hr></blockquote>


I am so sorry, Sonia. I can feel your pain all the way across the web.

About the opening up and bonding with people that you KNOW will be moving away.....
That's the part that is absolutely unique to being a military wife (tho' professors without tenure move and move too).

I haven't known many military wives. But when I was growing up on a state university campus I always knew the army and air force "brats" of the folks that were on campus to run ROTC and such. Those kids were extraordinarily skilled at moving into new communities and bonding. Partly they did open up right away and also they immediately joined something.
Not saying you should do either, just commenting on the obvious - the military is a completely different life style than any other. You will probably have to learn completely new ways of dealing to have the support you need.

I'm not sure how people learn to do this.
I started a separate thread to see if anyone else does.
Please think of me as a member of your support team at least.
-lisav
randev AT verizon.net

 

[JazzysMom]

I dont think a true friend would let distance interfere. My best friend from high school moved to FLorida right after graduation. She then traveled the world, returned to Florida & relocated to Texas. She has since moved back home near me after her step mom died. Even with all the miles in between us I felt closer to her then anyone that was within driving distance to me. The only thing she couldnt do for me being so far away was give me a hug when I needed it, but she was there. When I was pregnant she was living in Ireland. When I delivered my baby she was living in Italy. Her fiances job required a lot of traveling. She was on top of the good/bad things happening to me. She knew more than my family did at times. ON the same note I had "friends" nearby that when push came to shove I found out werent real friends. I was devistated to think that I was being bs'd this whole time. I try to make excuses that they are busy with their lives, jobs, kids etc, but that only works for sooo long and then you have to admit to yoursel its not the type of people you need/want in your life. I have said this time & time again, unless you are living in the life of a CFer on a daily basis......you dont get it. Even my Mom doesnt completely get it. She is living in the era of my childhood. She doesnt understand the challenges I face as an adult, wife & mom day in & day out. BUT she has a better idea then those that who never had exposure to my CF!

 

[JazzysMom]

I dont think a true friend would let distance interfere. My best friend from high school moved to FLorida right after graduation. She then traveled the world, returned to Florida & relocated to Texas. She has since moved back home near me after her step mom died. Even with all the miles in between us I felt closer to her then anyone that was within driving distance to me. The only thing she couldnt do for me being so far away was give me a hug when I needed it, but she was there. When I was pregnant she was living in Ireland. When I delivered my baby she was living in Italy. Her fiances job required a lot of traveling. She was on top of the good/bad things happening to me. She knew more than my family did at times. ON the same note I had "friends" nearby that when push came to shove I found out werent real friends. I was devistated to think that I was being bs'd this whole time. I try to make excuses that they are busy with their lives, jobs, kids etc, but that only works for sooo long and then you have to admit to yoursel its not the type of people you need/want in your life. I have said this time & time again, unless you are living in the life of a CFer on a daily basis......you dont get it. Even my Mom doesnt completely get it. She is living in the era of my childhood. She doesnt understand the challenges I face as an adult, wife & mom day in & day out. BUT she has a better idea then those that who never had exposure to my CF!

 

[anonymous]

Charlotte here - how's it going? Hope you don't mind me asking, but what age did you find out that you had CF?

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

 

[anonymous]

Charlotte here - how's it going? Hope you don't mind me asking, but what age did you find out that you had CF?

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

 

[mcbrash]

I used to get very angry over the lack of visitors that my son used to have while he was in the hospital. You are so right in that people just don't get it. A couple of years ago I started to email every person that my son knew, even friends of mine that he had never met before. I then had them email me a personal message to Matt and then I cut them all out and put them into a huge get well card. The look on my son's face while reading all of these messages told me how much this meant to him. Matt was list for his transplant in April of 2005 and as soon as he was listed I set up carepages for him where I could go and update everyone with what was going on with him and in turn people could send in messages. When he first saw these pages, he emailed me from the hospital to thank me so much for these carepages they were just awesome and I know he got a lot of pleasure from reading them. Unfortunately Matt only read a few pages of messages as he passed away on May 15th but I kept these pages going for quite some time and eventullly there were over 300 messages from family and friends that I was able to make into a book.
If you are interested in taking a look at these pages just go to www.carepages.com and matts carepage name is: mattsupdatepage. Some of you might like to set up your own pages when you are in the hospital they are a great idea.

Sandy

 

[mcbrash]

I used to get very angry over the lack of visitors that my son used to have while he was in the hospital. You are so right in that people just don't get it. A couple of years ago I started to email every person that my son knew, even friends of mine that he had never met before. I then had them email me a personal message to Matt and then I cut them all out and put them into a huge get well card. The look on my son's face while reading all of these messages told me how much this meant to him. Matt was list for his transplant in April of 2005 and as soon as he was listed I set up carepages for him where I could go and update everyone with what was going on with him and in turn people could send in messages. When he first saw these pages, he emailed me from the hospital to thank me so much for these carepages they were just awesome and I know he got a lot of pleasure from reading them. Unfortunately Matt only read a few pages of messages as he passed away on May 15th but I kept these pages going for quite some time and eventullly there were over 300 messages from family and friends that I was able to make into a book.
If you are interested in taking a look at these pages just go to www.carepages.com and matts carepage name is: mattsupdatepage. Some of you might like to set up your own pages when you are in the hospital they are a great idea.

Sandy