Partner having fears of being alone

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erock77

Member
So this issue comes up maybe once or twice a year in our relationship, me and my girlfriend have been going out for over 4 years now. Two of the last years unfortunately she's away at school in Seattle and I'm in San Diego. Anyway, occasionally something happens where she can't stop thinking about my demise and being alone in the future. Yesterday I sent her an email about a CF friend we met at CFRI retreat getting called for lungs, it turned out to be bad lungs and didn't happen btw. Anyway, I guess this triggered the thoughts of our future understandably, in addition she started feeling really alone b/c of our long distance thing which makes her consider this alone feeling could be commonplace if I go when statistics say I will. And of course this scares her. She says she loves me very much but this scares her and there's no one she can talk to about it.

I wrote back this morning offering the common encouragement of we don't know the future, let's enjoy our time together now, lots of new treatments in the pipeline, either one of us could get in a car wreck, etc. let's just live for now. Can anything really be said for encouragement? It's kind of odd to console someone about my own death, especially since I'm relatively well now. Does someone just need to experience the sad mind projections and wait for them to pass? As the CF'er I can admit I do feel guilty about the possibility that I could leave my partner alone someday. Which I just admitted in the email this morning. Like I've heard other CF'ers say, I generally take the role of sugarcoating things as to not worry them. Also I don't want to remind my girlfriend of the dark possibilities of her future, as I'd very much like to hold on to her. She doesn't feel she has anyone else to talk to about these things. I suggested this board of course. I've been dealing with these thoughts since I was a young kid so they don't overwhelm me. I guess that's why.

Anyway, I'm sure many of you have dealt with this issue. Anyone have any advice to add to what I'm doing? From a CF or partner perspective?
 
E

erock77

Member
So this issue comes up maybe once or twice a year in our relationship, me and my girlfriend have been going out for over 4 years now. Two of the last years unfortunately she's away at school in Seattle and I'm in San Diego. Anyway, occasionally something happens where she can't stop thinking about my demise and being alone in the future. Yesterday I sent her an email about a CF friend we met at CFRI retreat getting called for lungs, it turned out to be bad lungs and didn't happen btw. Anyway, I guess this triggered the thoughts of our future understandably, in addition she started feeling really alone b/c of our long distance thing which makes her consider this alone feeling could be commonplace if I go when statistics say I will. And of course this scares her. She says she loves me very much but this scares her and there's no one she can talk to about it.

I wrote back this morning offering the common encouragement of we don't know the future, let's enjoy our time together now, lots of new treatments in the pipeline, either one of us could get in a car wreck, etc. let's just live for now. Can anything really be said for encouragement? It's kind of odd to console someone about my own death, especially since I'm relatively well now. Does someone just need to experience the sad mind projections and wait for them to pass? As the CF'er I can admit I do feel guilty about the possibility that I could leave my partner alone someday. Which I just admitted in the email this morning. Like I've heard other CF'ers say, I generally take the role of sugarcoating things as to not worry them. Also I don't want to remind my girlfriend of the dark possibilities of her future, as I'd very much like to hold on to her. She doesn't feel she has anyone else to talk to about these things. I suggested this board of course. I've been dealing with these thoughts since I was a young kid so they don't overwhelm me. I guess that's why.

Anyway, I'm sure many of you have dealt with this issue. Anyone have any advice to add to what I'm doing? From a CF or partner perspective?
 
E

erock77

Member
So this issue comes up maybe once or twice a year in our relationship, me and my girlfriend have been going out for over 4 years now. Two of the last years unfortunately she's away at school in Seattle and I'm in San Diego. Anyway, occasionally something happens where she can't stop thinking about my demise and being alone in the future. Yesterday I sent her an email about a CF friend we met at CFRI retreat getting called for lungs, it turned out to be bad lungs and didn't happen btw. Anyway, I guess this triggered the thoughts of our future understandably, in addition she started feeling really alone b/c of our long distance thing which makes her consider this alone feeling could be commonplace if I go when statistics say I will. And of course this scares her. She says she loves me very much but this scares her and there's no one she can talk to about it.
<br />
<br />I wrote back this morning offering the common encouragement of we don't know the future, let's enjoy our time together now, lots of new treatments in the pipeline, either one of us could get in a car wreck, etc. let's just live for now. Can anything really be said for encouragement? It's kind of odd to console someone about my own death, especially since I'm relatively well now. Does someone just need to experience the sad mind projections and wait for them to pass? As the CF'er I can admit I do feel guilty about the possibility that I could leave my partner alone someday. Which I just admitted in the email this morning. Like I've heard other CF'ers say, I generally take the role of sugarcoating things as to not worry them. Also I don't want to remind my girlfriend of the dark possibilities of her future, as I'd very much like to hold on to her. She doesn't feel she has anyone else to talk to about these things. I suggested this board of course. I've been dealing with these thoughts since I was a young kid so they don't overwhelm me. I guess that's why.
<br />
<br />Anyway, I'm sure many of you have dealt with this issue. Anyone have any advice to add to what I'm doing? From a CF or partner perspective?
 
W

welshwitch

Guest
Just a note to add YES YES YES I have been through it....I was with a really really great guy for 3 years and he got really scared about it.

Obviously I didn't end up marrying the guy (other issues-ha!) but I would just say that in general it takes a strong and special person to be a partner to a CFer. I think all this stuff is normal. You are doing everything you possibly can to deal with this, but the bottom line is, ANYONE would get stressed out in our situation, and ANYONE who is a partner would get stressed out. The question is, can she handle it in the long term?

I bet it would be helpful for some partners to chime in on this! But your girlfriend sounds really great and it sounds like she's worried 'cause she loves you.

How does she respond to the positive encouragement you give her? Does she come to doctor's appointments with you? Does the know the "full story" not just about CF but with you in particular? (ie, she knows the horrible statistics, but does she know your specific case and your prognosis that your doctor gives you? Maybe too much to ask but still helpful too--sometimes you have to differentiate between "You" and "CF")

Just want to close with saying I really hate that we're in this position with relationships.....as if they're not hard enough....I question how I am going to approach this with future kids one day....

Anyway take care and I'm curious to hear how things go!
 
W

welshwitch

Guest
Just a note to add YES YES YES I have been through it....I was with a really really great guy for 3 years and he got really scared about it.

Obviously I didn't end up marrying the guy (other issues-ha!) but I would just say that in general it takes a strong and special person to be a partner to a CFer. I think all this stuff is normal. You are doing everything you possibly can to deal with this, but the bottom line is, ANYONE would get stressed out in our situation, and ANYONE who is a partner would get stressed out. The question is, can she handle it in the long term?

I bet it would be helpful for some partners to chime in on this! But your girlfriend sounds really great and it sounds like she's worried 'cause she loves you.

How does she respond to the positive encouragement you give her? Does she come to doctor's appointments with you? Does the know the "full story" not just about CF but with you in particular? (ie, she knows the horrible statistics, but does she know your specific case and your prognosis that your doctor gives you? Maybe too much to ask but still helpful too--sometimes you have to differentiate between "You" and "CF")

Just want to close with saying I really hate that we're in this position with relationships.....as if they're not hard enough....I question how I am going to approach this with future kids one day....

Anyway take care and I'm curious to hear how things go!
 
W

welshwitch

Guest
Just a note to add YES YES YES I have been through it....I was with a really really great guy for 3 years and he got really scared about it.
<br />
<br />Obviously I didn't end up marrying the guy (other issues-ha!) but I would just say that in general it takes a strong and special person to be a partner to a CFer. I think all this stuff is normal. You are doing everything you possibly can to deal with this, but the bottom line is, ANYONE would get stressed out in our situation, and ANYONE who is a partner would get stressed out. The question is, can she handle it in the long term?
<br />
<br />I bet it would be helpful for some partners to chime in on this! But your girlfriend sounds really great and it sounds like she's worried 'cause she loves you.
<br />
<br />How does she respond to the positive encouragement you give her? Does she come to doctor's appointments with you? Does the know the "full story" not just about CF but with you in particular? (ie, she knows the horrible statistics, but does she know your specific case and your prognosis that your doctor gives you? Maybe too much to ask but still helpful too--sometimes you have to differentiate between "You" and "CF")
<br />
<br />Just want to close with saying I really hate that we're in this position with relationships.....as if they're not hard enough....I question how I am going to approach this with future kids one day....
<br />
<br />Anyway take care and I'm curious to hear how things go!
 
W

welshwitch

Guest
Oh yes I would also like to add that talking to a counselor is a GREAT way to deal with some of this stuff....could she talk to a professional about this stuff so it wouldn't be all thrown on you, especially since you are long distance? Just an idea.
 
W

welshwitch

Guest
Oh yes I would also like to add that talking to a counselor is a GREAT way to deal with some of this stuff....could she talk to a professional about this stuff so it wouldn't be all thrown on you, especially since you are long distance? Just an idea.
 
W

welshwitch

Guest
Oh yes I would also like to add that talking to a counselor is a GREAT way to deal with some of this stuff....could she talk to a professional about this stuff so it wouldn't be all thrown on you, especially since you are long distance? Just an idea.
 
E

erock77

Member
Yeah I mentioned looking into seeking a counselor, they probably have them at the University. Like I said it's tough to console someone about my own eventual demise. It makes me feel bad/guilty that I may leave her that way, and it feels weird b/c I'm the one with the illness.

Yes you're right I totally understand she's coming from a caring place. Yes she knows me and my condition very well, and she's also been very exposed to others cases. Like I mentioned we went to the CFRI retreat for 2 years before I got MRSA and it was the highlight of her year. We got to meet about 15 CF'ers, about half who had transplants. She comes to doc appointments if she's in town, which isn't often. She's stayed with me in the hospital, sharing a little hospital bed multiple times. So yeah, she's well schooled.

Glad to have someone confirm I'm on the right track. Be nice if there was a fix to these situations. Another issue is who am I supposed to talk to about these issues? I think my only option is this board. That was her issue too, was she had to hide what was upsetting her all day at school yesterday. I could understand, what advice can a classmate say? And her family is lame, she's convinced if I do die they'll just say "told you so, shouldn't have gotten involved." My family would probably be a better support network to her.
I called her this morning and she didn't answer. She could be putting off talking, there's no way to really solve this issue other than letting it pass and focus on the good times.
Btw, I hate long-distance relationships.
 
E

erock77

Member
Yeah I mentioned looking into seeking a counselor, they probably have them at the University. Like I said it's tough to console someone about my own eventual demise. It makes me feel bad/guilty that I may leave her that way, and it feels weird b/c I'm the one with the illness.

Yes you're right I totally understand she's coming from a caring place. Yes she knows me and my condition very well, and she's also been very exposed to others cases. Like I mentioned we went to the CFRI retreat for 2 years before I got MRSA and it was the highlight of her year. We got to meet about 15 CF'ers, about half who had transplants. She comes to doc appointments if she's in town, which isn't often. She's stayed with me in the hospital, sharing a little hospital bed multiple times. So yeah, she's well schooled.

Glad to have someone confirm I'm on the right track. Be nice if there was a fix to these situations. Another issue is who am I supposed to talk to about these issues? I think my only option is this board. That was her issue too, was she had to hide what was upsetting her all day at school yesterday. I could understand, what advice can a classmate say? And her family is lame, she's convinced if I do die they'll just say "told you so, shouldn't have gotten involved." My family would probably be a better support network to her.
I called her this morning and she didn't answer. She could be putting off talking, there's no way to really solve this issue other than letting it pass and focus on the good times.
Btw, I hate long-distance relationships.
 
E

erock77

Member
Yeah I mentioned looking into seeking a counselor, they probably have them at the University. Like I said it's tough to console someone about my own eventual demise. It makes me feel bad/guilty that I may leave her that way, and it feels weird b/c I'm the one with the illness.
<br />
<br />Yes you're right I totally understand she's coming from a caring place. Yes she knows me and my condition very well, and she's also been very exposed to others cases. Like I mentioned we went to the CFRI retreat for 2 years before I got MRSA and it was the highlight of her year. We got to meet about 15 CF'ers, about half who had transplants. She comes to doc appointments if she's in town, which isn't often. She's stayed with me in the hospital, sharing a little hospital bed multiple times. So yeah, she's well schooled.
<br />
<br />Glad to have someone confirm I'm on the right track. Be nice if there was a fix to these situations. Another issue is who am I supposed to talk to about these issues? I think my only option is this board. That was her issue too, was she had to hide what was upsetting her all day at school yesterday. I could understand, what advice can a classmate say? And her family is lame, she's convinced if I do die they'll just say "told you so, shouldn't have gotten involved." My family would probably be a better support network to her.
<br />I called her this morning and she didn't answer. She could be putting off talking, there's no way to really solve this issue other than letting it pass and focus on the good times.
<br />Btw, I hate long-distance relationships.
 
L

Lisapatg

New member
My husband has cf and I know very much how she feels. We've been married for 11 years and have 3 kids. It is very scary thinking about our future without him, but my family keeps me strong. Your gf is lucky that she can share her feelings with you. You seem to have the same outlook on things as my husband does. Yes, anything could happen. I could die tomarrow in an accident, but this cf just lingers around and the bad thoughts of death creep up on us. I know I'm not really giving you any advice but it is helpful to know that you are not alone. She should get on this website and talk to us other people who are going through the same kinds of feelings. I am glad that your health is good. Btw my husband is 42 and he is also doing very well.
 
L

Lisapatg

New member
My husband has cf and I know very much how she feels. We've been married for 11 years and have 3 kids. It is very scary thinking about our future without him, but my family keeps me strong. Your gf is lucky that she can share her feelings with you. You seem to have the same outlook on things as my husband does. Yes, anything could happen. I could die tomarrow in an accident, but this cf just lingers around and the bad thoughts of death creep up on us. I know I'm not really giving you any advice but it is helpful to know that you are not alone. She should get on this website and talk to us other people who are going through the same kinds of feelings. I am glad that your health is good. Btw my husband is 42 and he is also doing very well.
 
L

Lisapatg

New member
My husband has cf and I know very much how she feels. We've been married for 11 years and have 3 kids. It is very scary thinking about our future without him, but my family keeps me strong. Your gf is lucky that she can share her feelings with you. You seem to have the same outlook on things as my husband does. Yes, anything could happen. I could die tomarrow in an accident, but this cf just lingers around and the bad thoughts of death creep up on us. I know I'm not really giving you any advice but it is helpful to know that you are not alone. She should get on this website and talk to us other people who are going through the same kinds of feelings. I am glad that your health is good. Btw my husband is 42 and he is also doing very well.
 
E

erock77

Member
Lisa, so how do you get over it? Or do you just let the moment pass. I don't think all this time apart is good for us, we spend more time Thinking about the relationship rather than Experiencing and enjoying it.
 
E

erock77

Member
Lisa, so how do you get over it? Or do you just let the moment pass. I don't think all this time apart is good for us, we spend more time Thinking about the relationship rather than Experiencing and enjoying it.
 
E

erock77

Member
Lisa, so how do you get over it? Or do you just let the moment pass. I don't think all this time apart is good for us, we spend more time Thinking about the relationship rather than Experiencing and enjoying it.
 
P

Printer

Active member
OK. I have CF and im 70 years old (71 in January) in September 2010 we celebrated our 48 wedding anniversary.
Two things come to mind. First you need to prepare for a long life and two a CURE will be found in your lifetime.

If you go to the CFF website, you can acess the latest annual report (2008) there you will find that in that year the oldest person with CF was 83.

Bill
 
P

Printer

Active member
OK. I have CF and im 70 years old (71 in January) in September 2010 we celebrated our 48 wedding anniversary.
Two things come to mind. First you need to prepare for a long life and two a CURE will be found in your lifetime.

If you go to the CFF website, you can acess the latest annual report (2008) there you will find that in that year the oldest person with CF was 83.

Bill
 
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