Non-CF friends not "getting it"

[anonymous]

Hello. OK, this is going to turn into a rant, I can feel it.

Well, here's the situation.... My friends just don't seem to get it. I've been in the hospital and on IV's about once a year for the last 12 years, right? Well, never in that time have me friends sent a card, flowers, phone calls, ANYTHING! I had ONE friend that actually came to visit me in the hospital, but none of my other friends did. None of them seemed to care. Granted, most of the time I've been on IV's, I've caught it before I've gotten really really sick, but I've always done a course of 2-3 weeks IVs. Do I just look really healthy to my friends and they think me getting IVs is no big deal?!?

On my last course of IVs last year, I had a partially collapsed lung... well, I emailed me friends the situation. I also ended up in the ER one night about half way into my IVs and had a fever of 104. I emailed my friends. Can you believe I didn't get a single "get well" email back, nor did anyone send a card, flowers, anything. Keep in mind, I live about 1500 miles from these "friends" and didn't have anyone except my husband in the state I was living. So, I was bascially all alone reaching out for someone to give a damn.

Now, I'm not expecting pity or "poor girl", but SOME amount of acknowledgment would be nice!

Then, last week, I was crushed.... let me tell you why....

I get a call from a friend from 1500 miles away (I still keep in touch with all these "friends"). She asks me if I want to go in on flowers for another friend to "cheer her up" .... Right away, I worry, right? Like, oh no, what happenend to her?!? Well, I guess her little boy had been in the hospital on IVs for all of 3 days and was now home and doing better, but now this friend has a sinus infection and she's 7 months pregnant. OH NO! A sinus infection!!! How devastating!!!! I couldn't believe what I was hearing. Shall I tell her how many sinus infections I'VE had in the past year??? Or, how about how many time I'VE been in the hospital on IV's not knowing if I'd get better at all. URGH!!!!

.... But, I kept my mouth shut and acted like the good little friend and said, "oh, that's too bad" (in a rather sarcastic tone, I might add, but I don't think my friend caught onto this.) I told her I'd go in on the flowers, all the while wondering why no one had thought of ME in the last decade and a half.... How did my 5 friends all think "oh, no! she has a sinus infection, so we better get her some flowers!" and have never (even when I had a collapsed lung) even thought to send me a "get well" card.

I was crushed. I got off the phone and just cried. They just don't get it. They just don't. I mean, I know the lady with the sinus infection had been calling in hysterical tears to my friends when all this was happening to her. Well, is that what I have to do? For them to understand the seriousness of MY condition?!?! I won't, because I'm not like that, but if that's what it takes for your "friends" to see you're suffering, it pretty sad. I mean, they all have seen me do my hours of treatments, my hundreds of pills, my shortness of breath sometimes doing the easiest tasks. But, they just don't get it.

I just don't know what to do. I shoulda told her I wouldn't go in on flowers since I'd never so much as gotten a card from that friend in all the times I'd been sick, but then my "friends" would have all thought I was a b*tch for not going in on them. Since my husband is military, these "friends" are really all I have, so I don't want to jeoperdize it with them. So, I pretend.

I just feel so sad right now. I thought I'd feel better and just think, "oh, they're the close minded ones" after a few days, but it still weighs heavy on my mind and heart. I just can't believe it and am so hurt.

Does anyone else have friends that just don't get it? Or, am I an exception? How do you make them "get it" if you don't appear sick, but feel like crap?

Thanks for listening to my vent.
Sonia
28 w/ CF and CFRD

 

[anonymous]

Hello. OK, this is going to turn into a rant, I can feel it.

Well, here's the situation.... My friends just don't seem to get it. I've been in the hospital and on IV's about once a year for the last 12 years, right? Well, never in that time have me friends sent a card, flowers, phone calls, ANYTHING! I had ONE friend that actually came to visit me in the hospital, but none of my other friends did. None of them seemed to care. Granted, most of the time I've been on IV's, I've caught it before I've gotten really really sick, but I've always done a course of 2-3 weeks IVs. Do I just look really healthy to my friends and they think me getting IVs is no big deal?!?

On my last course of IVs last year, I had a partially collapsed lung... well, I emailed me friends the situation. I also ended up in the ER one night about half way into my IVs and had a fever of 104. I emailed my friends. Can you believe I didn't get a single "get well" email back, nor did anyone send a card, flowers, anything. Keep in mind, I live about 1500 miles from these "friends" and didn't have anyone except my husband in the state I was living. So, I was bascially all alone reaching out for someone to give a damn.

Now, I'm not expecting pity or "poor girl", but SOME amount of acknowledgment would be nice!

Then, last week, I was crushed.... let me tell you why....

I get a call from a friend from 1500 miles away (I still keep in touch with all these "friends"). She asks me if I want to go in on flowers for another friend to "cheer her up" .... Right away, I worry, right? Like, oh no, what happenend to her?!? Well, I guess her little boy had been in the hospital on IVs for all of 3 days and was now home and doing better, but now this friend has a sinus infection and she's 7 months pregnant. OH NO! A sinus infection!!! How devastating!!!! I couldn't believe what I was hearing. Shall I tell her how many sinus infections I'VE had in the past year??? Or, how about how many time I'VE been in the hospital on IV's not knowing if I'd get better at all. URGH!!!!

.... But, I kept my mouth shut and acted like the good little friend and said, "oh, that's too bad" (in a rather sarcastic tone, I might add, but I don't think my friend caught onto this.) I told her I'd go in on the flowers, all the while wondering why no one had thought of ME in the last decade and a half.... How did my 5 friends all think "oh, no! she has a sinus infection, so we better get her some flowers!" and have never (even when I had a collapsed lung) even thought to send me a "get well" card.

I was crushed. I got off the phone and just cried. They just don't get it. They just don't. I mean, I know the lady with the sinus infection had been calling in hysterical tears to my friends when all this was happening to her. Well, is that what I have to do? For them to understand the seriousness of MY condition?!?! I won't, because I'm not like that, but if that's what it takes for your "friends" to see you're suffering, it pretty sad. I mean, they all have seen me do my hours of treatments, my hundreds of pills, my shortness of breath sometimes doing the easiest tasks. But, they just don't get it.

I just don't know what to do. I shoulda told her I wouldn't go in on flowers since I'd never so much as gotten a card from that friend in all the times I'd been sick, but then my "friends" would have all thought I was a b*tch for not going in on them. Since my husband is military, these "friends" are really all I have, so I don't want to jeoperdize it with them. So, I pretend.

I just feel so sad right now. I thought I'd feel better and just think, "oh, they're the close minded ones" after a few days, but it still weighs heavy on my mind and heart. I just can't believe it and am so hurt.

Does anyone else have friends that just don't get it? Or, am I an exception? How do you make them "get it" if you don't appear sick, but feel like crap?

Thanks for listening to my vent.
Sonia
28 w/ CF and CFRD

 

[Allie]

And I was all set to say "Of course we don't get it, we can't" But this isn't even remotely what I was expecing. I can't believe no one has sent you anything in all the times you've been in the hospital. People are awful, plain and simple. Post your address next time you go in, and I'll send you a card, because I don't know of anything that I can say about your friends' thoughtlessness.

 

[Allie]

And I was all set to say "Of course we don't get it, we can't" But this isn't even remotely what I was expecing. I can't believe no one has sent you anything in all the times you've been in the hospital. People are awful, plain and simple. Post your address next time you go in, and I'll send you a card, because I don't know of anything that I can say about your friends' thoughtlessness.

 

[Emily65Roses]

I have a lot of friends and/or family that just don't get it. The last few times I've been in the hospital, the only visitors I've had are Mike (not that that's a bad thing<img src="i/expressions/face-icon-small-smile.gif" border="0">), and my immediate family. I stopped trying to get other people to come. As long as I have Mike, I'm happy enough.

One of the things that always bugged me was when no one cared if I was on home IVs. Like the hospital makes it bad, but if you're doing the <b>exact same thing</b> at home, it suddenly doesn't count. Really, people just do NOT get it.

I don't know what to tell you, I know it sucks, and I'm sorry. When it comes to my feeling a little neglected (and like you said, we don't want a "oh poor dear" we just want a little bit of recognition, attention), I'll tell Mike. But he's the only one I feel comfortable enough telling. I'll say to him "I know I'm on home IVs, which is better than being in... but it still sucks, and it still gets me lonely, so could you hang around maybe a little more than you might normally?" I can never see myself saying that to anyone else, though.

I'm sorry I'm useless, I don't know what to tell you. Heh. <img src="i/expressions/sad_eyes.gif" border="0">

 

[Emily65Roses]

I have a lot of friends and/or family that just don't get it. The last few times I've been in the hospital, the only visitors I've had are Mike (not that that's a bad thing<img src="i/expressions/face-icon-small-smile.gif" border="0">), and my immediate family. I stopped trying to get other people to come. As long as I have Mike, I'm happy enough.

One of the things that always bugged me was when no one cared if I was on home IVs. Like the hospital makes it bad, but if you're doing the <b>exact same thing</b> at home, it suddenly doesn't count. Really, people just do NOT get it.

I don't know what to tell you, I know it sucks, and I'm sorry. When it comes to my feeling a little neglected (and like you said, we don't want a "oh poor dear" we just want a little bit of recognition, attention), I'll tell Mike. But he's the only one I feel comfortable enough telling. I'll say to him "I know I'm on home IVs, which is better than being in... but it still sucks, and it still gets me lonely, so could you hang around maybe a little more than you might normally?" I can never see myself saying that to anyone else, though.

I'm sorry I'm useless, I don't know what to tell you. Heh. <img src="i/expressions/sad_eyes.gif" border="0">

 

[princessjdc]

Well, I dont have friends that are very close to me so that is out of the question, but I do have a supportive family and husband I might add, and that is enough for me, but if it bothers you that much, you should of asked your friend "How come you guys never sent flowers or cards to me when I was sick and in the hospital, needing your guyses support?" Then you would know why. Thats all I can think of to say, but I hope your friends come to their senses and give your flowers or cards once in awhile.

 

[princessjdc]

Well, I dont have friends that are very close to me so that is out of the question, but I do have a supportive family and husband I might add, and that is enough for me, but if it bothers you that much, you should of asked your friend "How come you guys never sent flowers or cards to me when I was sick and in the hospital, needing your guyses support?" Then you would know why. Thats all I can think of to say, but I hope your friends come to their senses and give your flowers or cards once in awhile.

 

[anonymous]

Oh, Allie.... you're too sweet. I know my friends on here "get it". Sometimes, I want to tell MY friends they should spend some time on these boards to see what people go through, but honestly, I don't think it would help, cause "Well, Sonia's still healthy".... Hmmm..... I have half my lung function, is that "healthy"?

... this also reminds me of a time one of my friends was going to do a CF walk for great strides and told me about it. I thought that was the sweetest thing any of them had ever done for me. Then, the day came along, and she was "too busy" to go. Again, I was very hurt. I wish I could be "too busy" to have CF.

.... Sorry, I digress. Just hurting today and ya'll get an "eyeful" cause of it. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Sonia

 

[anonymous]

Oh, Allie.... you're too sweet. I know my friends on here "get it". Sometimes, I want to tell MY friends they should spend some time on these boards to see what people go through, but honestly, I don't think it would help, cause "Well, Sonia's still healthy".... Hmmm..... I have half my lung function, is that "healthy"?

... this also reminds me of a time one of my friends was going to do a CF walk for great strides and told me about it. I thought that was the sweetest thing any of them had ever done for me. Then, the day came along, and she was "too busy" to go. Again, I was very hurt. I wish I could be "too busy" to have CF.

.... Sorry, I digress. Just hurting today and ya'll get an "eyeful" cause of it. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Sonia

 

[anonymous]

Hi Sonia

I do not hear they are your true friends. They sound like acquaintences to me. I would call up that "so called" friend of yours and tell her you cannot give her the money. IF she ask why, just tell her I have my reasons. Sometimes it is good to express how you really feel but it is very difficult to decide when to express if these so called friends really care. Why do you call these friends your "friends" a real friend will ask you how you feel and want to get to know what treatments you take when and why you go to the hospital. Perhaps it is time to start to make new friends. Do you go out to places? You can join clubs (book clubs)and start to find one true friend. Sometimes all it takes to find a friend is to just listen. I hope you start a new life with new people and blow off these so called buddies to the wind. They will never get it because they cannot deal with themselves. They all have their crap in life and if it is not crap they make it into that. I know many people like this. A good place to start to get involved are civic groups like the Jaycees. IF you are under 30 this group of people (if you have a group in your area) do great things for the community and are very sincere people. Jaycees stands for Junior Chamber of Commerce. I was involved in these groups for years. I also met friends where I lived and in College. People drift apart for many reasons. Keep on searching and I hope you find some real people in your life
Risa

 

[anonymous]

Hi Sonia

I do not hear they are your true friends. They sound like acquaintences to me. I would call up that "so called" friend of yours and tell her you cannot give her the money. IF she ask why, just tell her I have my reasons. Sometimes it is good to express how you really feel but it is very difficult to decide when to express if these so called friends really care. Why do you call these friends your "friends" a real friend will ask you how you feel and want to get to know what treatments you take when and why you go to the hospital. Perhaps it is time to start to make new friends. Do you go out to places? You can join clubs (book clubs)and start to find one true friend. Sometimes all it takes to find a friend is to just listen. I hope you start a new life with new people and blow off these so called buddies to the wind. They will never get it because they cannot deal with themselves. They all have their crap in life and if it is not crap they make it into that. I know many people like this. A good place to start to get involved are civic groups like the Jaycees. IF you are under 30 this group of people (if you have a group in your area) do great things for the community and are very sincere people. Jaycees stands for Junior Chamber of Commerce. I was involved in these groups for years. I also met friends where I lived and in College. People drift apart for many reasons. Keep on searching and I hope you find some real people in your life
Risa

 

[anonymous]

Thanks, all. It's nice to know I'm not alone.... although it irks me to know others go through the same thing. <img src="i/expressions/face-icon-small-frown.gif" border="0">

 

[anonymous]

Thanks, all. It's nice to know I'm not alone.... although it irks me to know others go through the same thing. <img src="i/expressions/face-icon-small-frown.gif" border="0">

 

[Faust]

When i'm sick and in the hospital, I generally want to be left alone, if it's a clean out. My lady stays with me on weekends (private room with couch) and visits me during the week, and my family members stop on by here and there during the week. But my family and friends have their own responsibilities and massive time demands, so me asking them to come visit me when i'm fairly far away is kind of selfish for me. I'm a big boy, i'm nearly 35 years old and have been through a ton of stuff. I'd rather deal with my problems solo. Having friends or family come and visit me and me tell them "Well i'm down to 49% lung capacity, and now I have an unknown organism growing in my lungs, how was your day?" would do nothing but seriously bum them out. CF sucks enough to live with it, throwing the depression around on others isn't a good thing. I'm just speaking for myself, not judging anyone else.

 

[Faust]

When i'm sick and in the hospital, I generally want to be left alone, if it's a clean out. My lady stays with me on weekends (private room with couch) and visits me during the week, and my family members stop on by here and there during the week. But my family and friends have their own responsibilities and massive time demands, so me asking them to come visit me when i'm fairly far away is kind of selfish for me. I'm a big boy, i'm nearly 35 years old and have been through a ton of stuff. I'd rather deal with my problems solo. Having friends or family come and visit me and me tell them "Well i'm down to 49% lung capacity, and now I have an unknown organism growing in my lungs, how was your day?" would do nothing but seriously bum them out. CF sucks enough to live with it, throwing the depression around on others isn't a good thing. I'm just speaking for myself, not judging anyone else.

 

[littledebbie]

This does happen to me too. It's part of the reason I have very few friends...they don't get me. I'm not ALL about my CF but it has changed me and made it diificult for me to relate to my peers, I think that was covered in another thread on here. I'll share my guess at what happens here, this is the theory I've always gone with anyway...

Very few people know what CF is. And people are generally self centered creatures, so they don't care what CF is either. They've never had it and there not going to. No one in their imidiate family has it, so not really their problem. It's not contagious, so again not their problem. Now a sinus infection...ahhh, that something they can relate too. A sick child, yep they can relate. And since they can relate they are comfortable that they know what to say or do to be helpful, be comforting. CF is just scary, and technical and serious (terminal) and they are out of their league so they AVOID it. Pretend it's not happening, close their eyes and hope it goes away. It might be worth a try to tell them exactly what you need. I know it seems like you shouldn't have to. But maybe say "hey chuckle heads, I'm all alone in the hospital and I don't feel good, a phone call or a card would really make me feel less suicidal". If they don't get, then who needs eeemmm. Give us your address and eventually you'll be so burried in well wishers you will need a secretary to take your messages.

 

[littledebbie]

This does happen to me too. It's part of the reason I have very few friends...they don't get me. I'm not ALL about my CF but it has changed me and made it diificult for me to relate to my peers, I think that was covered in another thread on here. I'll share my guess at what happens here, this is the theory I've always gone with anyway...

Very few people know what CF is. And people are generally self centered creatures, so they don't care what CF is either. They've never had it and there not going to. No one in their imidiate family has it, so not really their problem. It's not contagious, so again not their problem. Now a sinus infection...ahhh, that something they can relate too. A sick child, yep they can relate. And since they can relate they are comfortable that they know what to say or do to be helpful, be comforting. CF is just scary, and technical and serious (terminal) and they are out of their league so they AVOID it. Pretend it's not happening, close their eyes and hope it goes away. It might be worth a try to tell them exactly what you need. I know it seems like you shouldn't have to. But maybe say "hey chuckle heads, I'm all alone in the hospital and I don't feel good, a phone call or a card would really make me feel less suicidal". If they don't get, then who needs eeemmm. Give us your address and eventually you'll be so burried in well wishers you will need a secretary to take your messages.

 

[anonymous]

Thanks, Risa. I know you're right. I've got to learn to move on if my "friends" are unhealthy for me. But I do treasure their friendships, believe it or not.
I have tried to get involved in stuff, but its really tough cause we move duty stations every 2-3 years. So, by the time I'm really getting to know someone and letting them into my life, we move. I did meet a good friend our last station in Texas, and felt a real conncetion to her (we still email), but we moved after 1 1/2 years, so I never got to "that place" to really confide in her.
I have thought about joing a book club cause I love to read. And, my husband and I plan on volunteering again at an animal shelter and at fundraisers, so maybe that will help. But, my experience is with these sorts of things, people see each other so infrequently that they never extablish "tell me everything" friendships. Sorry, I'm being negative again....

Sonia<img src="i/expressions/face-icon-small-blush.gif" border="0">

 

[anonymous]

Thanks, Risa. I know you're right. I've got to learn to move on if my "friends" are unhealthy for me. But I do treasure their friendships, believe it or not.
I have tried to get involved in stuff, but its really tough cause we move duty stations every 2-3 years. So, by the time I'm really getting to know someone and letting them into my life, we move. I did meet a good friend our last station in Texas, and felt a real conncetion to her (we still email), but we moved after 1 1/2 years, so I never got to "that place" to really confide in her.
I have thought about joing a book club cause I love to read. And, my husband and I plan on volunteering again at an animal shelter and at fundraisers, so maybe that will help. But, my experience is with these sorts of things, people see each other so infrequently that they never extablish "tell me everything" friendships. Sorry, I'm being negative again....

Sonia<img src="i/expressions/face-icon-small-blush.gif" border="0">