Relationships with CF Patients

[natalie]

Hi there! My name is Natalie and I live in Toronto, Canada. I've got a lot I need to discuss and I hope you guys can perhaps give me some advice.

My boyfriend has CF and was diagnosed with it around 13 years of age. He had it since he was a baby, but the doctors didn't perform the necessary tests at the time to diagnose it. We've been dating for about 3 years. I know I'm still young (only 21) but I am scared about our future together. We've discussed marriage and living together, but I'm scared because I will have to be the main provider. He does not work and is on disability because of his condition. He is also sick quite frequently. I'm finishing university and have led a fairly comfortable life. I care about him and love him, but sometimes I feel that I am doing everything and will end up doing everything down the road. Working and making money, paying for bills and insurance, renovating, moving, and many other things. It's so much responsibility. I also have dreams of worldwide travel and he is not fit enough to travel out of Canada. I do love him and care for him, but I don't want to sacrifice my dreams for a decision I may regret later on.

I'm wondering if there are any others on this forum who are married to an unemployed CF patient. How are your standards of living? Is it difficult? Did you have to give up your dreams? I want to marry for love but I don't want to live a strickened life.

Any advice would be helpful at this time.

Love,
Natalie

 

[natalie]

Hi there! My name is Natalie and I live in Toronto, Canada. I've got a lot I need to discuss and I hope you guys can perhaps give me some advice.

My boyfriend has CF and was diagnosed with it around 13 years of age. He had it since he was a baby, but the doctors didn't perform the necessary tests at the time to diagnose it. We've been dating for about 3 years. I know I'm still young (only 21) but I am scared about our future together. We've discussed marriage and living together, but I'm scared because I will have to be the main provider. He does not work and is on disability because of his condition. He is also sick quite frequently. I'm finishing university and have led a fairly comfortable life. I care about him and love him, but sometimes I feel that I am doing everything and will end up doing everything down the road. Working and making money, paying for bills and insurance, renovating, moving, and many other things. It's so much responsibility. I also have dreams of worldwide travel and he is not fit enough to travel out of Canada. I do love him and care for him, but I don't want to sacrifice my dreams for a decision I may regret later on.

I'm wondering if there are any others on this forum who are married to an unemployed CF patient. How are your standards of living? Is it difficult? Did you have to give up your dreams? I want to marry for love but I don't want to live a strickened life.

Any advice would be helpful at this time.

Love,
Natalie

 

[Emily65Roses]

I myself have CF and there will be people here with more elaborate advice for you than I can give. But my two cents is as follows:
If you're worried about being the sole provider, and taking care of him, and missing out on things like traveling, I would seriously consider leaving him. It may not always be that way, but it will at least part of the time, be that way. I don't know whether or not you know, because you didn't mention this, but chances are he can't have kids naturally. So unless you guys are willing to adopt or can afford IVF or don't want kids at all, that might be another thing you need to seriously consider.

I'm not saying "leave him, leave him now"... But if you're really this unsure, then you need to take some serious thinking time. If you're incapable of taking care of him, it will be better in the end for both you and him if you figure this out sooner rather than later.

 

[Emily65Roses]

I myself have CF and there will be people here with more elaborate advice for you than I can give. But my two cents is as follows:
If you're worried about being the sole provider, and taking care of him, and missing out on things like traveling, I would seriously consider leaving him. It may not always be that way, but it will at least part of the time, be that way. I don't know whether or not you know, because you didn't mention this, but chances are he can't have kids naturally. So unless you guys are willing to adopt or can afford IVF or don't want kids at all, that might be another thing you need to seriously consider.

I'm not saying "leave him, leave him now"... But if you're really this unsure, then you need to take some serious thinking time. If you're incapable of taking care of him, it will be better in the end for both you and him if you figure this out sooner rather than later.

 

[Allie]

I had to think about this a lot before I responded. I married a Cfer who was the absolute love of my life, and I couldn't imagine life without him. We traveled a bit in the nearby parts of the US, adopted a beautiful daughter, and had a perfect love. I couldn't imagine my life without his love and his life intertwined with mine.

BUT... I ended up having to be the siole provider as his health deteriorated. I ended up having to do the chores, take care of Ahava, and help take care of Ry. To me, it didn't matter. I loved him, and knew that day would come when I married him. Marrying a Cfer is a lot of responsibility. If not immediately, eventually. Anyone who tells you otherwise has either never done it or is smoking something. Love is what pulls you through it. I never gave a second thought to marrying Ry, I knew I wanted him for as long as possible, under whatever circumstances.

I'm going to be very straight with you here. This :

<blockquote>Quote<br><hr>I want to marry for love but I don't want to live a strickened life. <hr></blockquote>

To me, sounds like : "I want to marry for love if it fits into my idea of a life" Which is fine, but you have to know yourself. I could never have given up Ry for my little dreams, like going to Israel or owning a bookstore. He was my overwhelming dream. My love was stronger than those things. Now that he's gone, I am saving up to eventually do those things. But I'd still pick Ry over thiose things. You sound like you already regretting this decision to be with him long term. You need to re-evaluate this quickly, and if you decide you can't do it, let go of him before you hurt him worse.

I'm a straightforward person, and consider you smart enough not to hand you some happy bunny idea of Cf marriage. Try reading this : <a target=new class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=4989&FTVAR_MSGDBTABLE=">http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=4989&FTVAR_MSGDBTABLE=</a> What Emily wrote about CF spouses.

I'll answer any other questions you have.

 

[Allie]

I had to think about this a lot before I responded. I married a Cfer who was the absolute love of my life, and I couldn't imagine life without him. We traveled a bit in the nearby parts of the US, adopted a beautiful daughter, and had a perfect love. I couldn't imagine my life without his love and his life intertwined with mine.

BUT... I ended up having to be the siole provider as his health deteriorated. I ended up having to do the chores, take care of Ahava, and help take care of Ry. To me, it didn't matter. I loved him, and knew that day would come when I married him. Marrying a Cfer is a lot of responsibility. If not immediately, eventually. Anyone who tells you otherwise has either never done it or is smoking something. Love is what pulls you through it. I never gave a second thought to marrying Ry, I knew I wanted him for as long as possible, under whatever circumstances.

I'm going to be very straight with you here. This :

<blockquote>Quote<br><hr>I want to marry for love but I don't want to live a strickened life. <hr></blockquote>

To me, sounds like : "I want to marry for love if it fits into my idea of a life" Which is fine, but you have to know yourself. I could never have given up Ry for my little dreams, like going to Israel or owning a bookstore. He was my overwhelming dream. My love was stronger than those things. Now that he's gone, I am saving up to eventually do those things. But I'd still pick Ry over thiose things. You sound like you already regretting this decision to be with him long term. You need to re-evaluate this quickly, and if you decide you can't do it, let go of him before you hurt him worse.

I'm a straightforward person, and consider you smart enough not to hand you some happy bunny idea of Cf marriage. Try reading this : <a target=new class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=4989&FTVAR_MSGDBTABLE=">http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=4989&FTVAR_MSGDBTABLE=</a> What Emily wrote about CF spouses.

I'll answer any other questions you have.

 

[Landy]

Here's my two cents worth. I have to agree with what Emily said.
It sounds like you do love him but maybe not <i>deeply</i> enough to make it through the good, the bad and the ugly without regretting your decision later.
I only base this on the fact that if I loved someone unconditionally, I would be willing to live in a 2 room shack, give up my dreams of world wide travel, and live paycheck to paycheck (hey, that does describe my life, well except for the 2 room shack part-lol) because spending time with this person and being happy is far more important to me than the other things.
One other thing you need to check into before you would marry him is; if he is collecting any type of state aid, he stands a chance of loosing some/all state benefits if you get married. If he is on Social Security Disablility, I don't think that should be affected if you marry but again, check into it first.
You will probably have to be the one to work, mow the lawn, clean the house, etc a lot of the time from how you've described his health.
Again, like Emily said you need to think seriously about all of this before making a serious commitment.
Good luck with whatever you decide.

 

[Landy]

Here's my two cents worth. I have to agree with what Emily said.
It sounds like you do love him but maybe not <i>deeply</i> enough to make it through the good, the bad and the ugly without regretting your decision later.
I only base this on the fact that if I loved someone unconditionally, I would be willing to live in a 2 room shack, give up my dreams of world wide travel, and live paycheck to paycheck (hey, that does describe my life, well except for the 2 room shack part-lol) because spending time with this person and being happy is far more important to me than the other things.
One other thing you need to check into before you would marry him is; if he is collecting any type of state aid, he stands a chance of loosing some/all state benefits if you get married. If he is on Social Security Disablility, I don't think that should be affected if you marry but again, check into it first.
You will probably have to be the one to work, mow the lawn, clean the house, etc a lot of the time from how you've described his health.
Again, like Emily said you need to think seriously about all of this before making a serious commitment.
Good luck with whatever you decide.

 

[thelizardqueen]

I'm with Emily on this one too. If you have all of these factors that you don't think you can give up, then you shouldn't be with him. I know that a relationship is about compromise, but you may end up regreting this decision later on in life, and possibly be angry with your boyfriend over this decision. You have to seriously think hard about what it is in life you want to do. Don't stay in the relationship because you're worried you may end up hurting him. Think about 10-20 years down the road or even sooner, when you want to travel and can't. When you want to have kids naturally and can't. When he takes a turn for the worst (and this inevitably will happen), and you have to take time off work to be there for him, helping him with his treatments. Do you know 100% what you're getting into?

I'm thankful that my CF is not serious enough, where I have to give up traveling. I can travel anywhere I want to at the moment, but I can never move to another country. My boyfriend understands this, and is willing and wanting to stay in Canada to be with me. He doesn't feel like he's had to give up moving somewhere else for me. My boyfriend knows that I may not be able to have kids, and he's perfectly fine with adopting. He also knows that more then likely I will not be around to take care of the kids when they are somewhat older, and he is fine with this. He tells me everytime that I am sick, and ask him if being with me is worth it, that he would rather have 10 years of happiness with me, then all the traveling and perks of being with a healthy spouse for the rest of his life.

He has no regrets, he doens't feel like he is giving anything up for me. If you feel that you will have to "give" a lot of things up for him, then you should really think about your relationship, and if its something you want long term. That's the best advice I can give you. There are a lot of people out there who can't handle being with a person with a terminal illness that they will have to support for life, and that's perfectly fine. There are people who can deal with this, and people who can't. We're lucky in that my boyfriend has a great job where I don't even have to think about working.

My boyfriend would gladly live in a one room shack with me, making barely ends meet, if that meant that he was with me. He tells me daily that he would rather give up everything in life to be with me for only a short time. That's the type of love you need to have, to sustain a relationship with someone with CF.

Think about what sort of relationship you want long term, and decide soon whether this is the relationship for you, before you go too far and begin to regreat things.

ps. I hope I haven't come off harsh, but I just want you to see the whole picture.

 

[thelizardqueen]

I'm with Emily on this one too. If you have all of these factors that you don't think you can give up, then you shouldn't be with him. I know that a relationship is about compromise, but you may end up regreting this decision later on in life, and possibly be angry with your boyfriend over this decision. You have to seriously think hard about what it is in life you want to do. Don't stay in the relationship because you're worried you may end up hurting him. Think about 10-20 years down the road or even sooner, when you want to travel and can't. When you want to have kids naturally and can't. When he takes a turn for the worst (and this inevitably will happen), and you have to take time off work to be there for him, helping him with his treatments. Do you know 100% what you're getting into?

I'm thankful that my CF is not serious enough, where I have to give up traveling. I can travel anywhere I want to at the moment, but I can never move to another country. My boyfriend understands this, and is willing and wanting to stay in Canada to be with me. He doesn't feel like he's had to give up moving somewhere else for me. My boyfriend knows that I may not be able to have kids, and he's perfectly fine with adopting. He also knows that more then likely I will not be around to take care of the kids when they are somewhat older, and he is fine with this. He tells me everytime that I am sick, and ask him if being with me is worth it, that he would rather have 10 years of happiness with me, then all the traveling and perks of being with a healthy spouse for the rest of his life.

He has no regrets, he doens't feel like he is giving anything up for me. If you feel that you will have to "give" a lot of things up for him, then you should really think about your relationship, and if its something you want long term. That's the best advice I can give you. There are a lot of people out there who can't handle being with a person with a terminal illness that they will have to support for life, and that's perfectly fine. There are people who can deal with this, and people who can't. We're lucky in that my boyfriend has a great job where I don't even have to think about working.

My boyfriend would gladly live in a one room shack with me, making barely ends meet, if that meant that he was with me. He tells me daily that he would rather give up everything in life to be with me for only a short time. That's the type of love you need to have, to sustain a relationship with someone with CF.

Think about what sort of relationship you want long term, and decide soon whether this is the relationship for you, before you go too far and begin to regreat things.

ps. I hope I haven't come off harsh, but I just want you to see the whole picture.

 

[lilMeggies]

** Message has been deleted **

 

[lilMeggies]

** Message has been deleted **

 

[Bengalsfan]

If you are truly IN love with him, his CF won't matter....my husband is 30 w/cf and is starting to become ill more often......it does cut into where you go and what you can do, and I am the sole supporter besides his disability.....but I also look at it this way....he may not work, but he does bring in the money for his disability, which helps pay the bills, he does WHAT HE CAN around the house, and for a CF patient has raised our twins for the first two years of their life until it was overwhelming him a bit and now they are in daycare 3 days a week. All I can say is if you are not in love with him enough to commit to the responsibility, I agree with the above comments....let him find true love elsewhere. It will only hurt him more in the end if he becomes terribly ill and you haven't prepared yourself for this and cannot be the support he needs. And unless you don't want children, or can afford IVF, that is a big obstacle also. Just think about what you are ready to do FOR him....not what he can do for YOU. He is the one with the illness, not you.

 

[Bengalsfan]

If you are truly IN love with him, his CF won't matter....my husband is 30 w/cf and is starting to become ill more often......it does cut into where you go and what you can do, and I am the sole supporter besides his disability.....but I also look at it this way....he may not work, but he does bring in the money for his disability, which helps pay the bills, he does WHAT HE CAN around the house, and for a CF patient has raised our twins for the first two years of their life until it was overwhelming him a bit and now they are in daycare 3 days a week. All I can say is if you are not in love with him enough to commit to the responsibility, I agree with the above comments....let him find true love elsewhere. It will only hurt him more in the end if he becomes terribly ill and you haven't prepared yourself for this and cannot be the support he needs. And unless you don't want children, or can afford IVF, that is a big obstacle also. Just think about what you are ready to do FOR him....not what he can do for YOU. He is the one with the illness, not you.

 

[natalie]

<blockquote>Quote<br><hr><i>Originally posted by: <b>lilMeggies</b></i><br>Sorry guys I have to say it I can no longer hold these types of comments in

I think your pretty selfish and you don't clearly love him so leave him so he can find someone better<hr></blockquote>

That is where you are wrong. Perhaps I am being selfish by thinking of myself, I will admit that. I feel pretty lousy that I am thinking these things. But I do love him. I want to spend the rest of my life with him yet I am scared because I do not know what will happen and what our life will truly be like. I don't want to assume what our life will be like together in a little fantasy bubble. I want to know the reality of the situation. That is why I came to this forum, to ask some questions and see what others have experienced. I appreciate your blunt comments, but do not accuse me of not loving him. That is simply not true.

 

[natalie]

<blockquote>Quote<br><hr><i>Originally posted by: <b>lilMeggies</b></i><br>Sorry guys I have to say it I can no longer hold these types of comments in

I think your pretty selfish and you don't clearly love him so leave him so he can find someone better<hr></blockquote>

That is where you are wrong. Perhaps I am being selfish by thinking of myself, I will admit that. I feel pretty lousy that I am thinking these things. But I do love him. I want to spend the rest of my life with him yet I am scared because I do not know what will happen and what our life will truly be like. I don't want to assume what our life will be like together in a little fantasy bubble. I want to know the reality of the situation. That is why I came to this forum, to ask some questions and see what others have experienced. I appreciate your blunt comments, but do not accuse me of not loving him. That is simply not true.

 

[Allie]

Yep, Ry raised my girly too. Raised her extremely well, i might add. And cooked, and helped with whatever he could.

But the truth is still that you will be in control of financial matters. And when his health gets really bad, you wil be taking care of him. It's the reality. So can you accept that? Like I said, you can travel later. If you love him, you can do it. But you really, really need to evaluate it. IF you have specific questions, i would be more than happy to help, either here or at my email. RyAllieAhava AT yahoo DOT com

 

[Allie]

Yep, Ry raised my girly too. Raised her extremely well, i might add. And cooked, and helped with whatever he could.

But the truth is still that you will be in control of financial matters. And when his health gets really bad, you wil be taking care of him. It's the reality. So can you accept that? Like I said, you can travel later. If you love him, you can do it. But you really, really need to evaluate it. IF you have specific questions, i would be more than happy to help, either here or at my email. RyAllieAhava AT yahoo DOT com

 

[Emily65Roses]

<blockquote>Quote<br><hr><i>Originally posted by: <b>natalie</b></i><br><blockquote>
That is where you are wrong. Perhaps I am being selfish by thinking of myself, I will admit that. I feel pretty lousy that I am thinking these things. But I do love him. I want to spend the rest of my life with him yet I am scared because I do not know what will happen and what our life will truly be like. I don't want to assume what our life will be like together in a little fantasy bubble. I want to know the reality of the situation. That is why I came to this forum, to ask some questions and see what others have experienced. I appreciate your blunt comments, but do not accuse me of not loving him. That is simply not true.<hr></blockquote>

It's better that you think of these things sooner than later, like I said. Like Allie said, you have to know yourself. If it's too unbalanced for you to want to stay with him, it's better that you know now. Either you can or you can't, and I won't judge you for it. There are, quite frankly, some people who can deal with CF, and some who can't. If you're one of the ones who can't, the sooner you know, the better. If you decide you can't, just be sure to break it off ASAP. The longer you wait, the harder it will be for both of you.

I hadn't thought of that post I made a while back that Allie linked you to, but I think it's worth taking a look at. It's very honest, and would be worth your while to read.

 

[Emily65Roses]

<blockquote>Quote<br><hr><i>Originally posted by: <b>natalie</b></i><br><blockquote>
That is where you are wrong. Perhaps I am being selfish by thinking of myself, I will admit that. I feel pretty lousy that I am thinking these things. But I do love him. I want to spend the rest of my life with him yet I am scared because I do not know what will happen and what our life will truly be like. I don't want to assume what our life will be like together in a little fantasy bubble. I want to know the reality of the situation. That is why I came to this forum, to ask some questions and see what others have experienced. I appreciate your blunt comments, but do not accuse me of not loving him. That is simply not true.<hr></blockquote>

It's better that you think of these things sooner than later, like I said. Like Allie said, you have to know yourself. If it's too unbalanced for you to want to stay with him, it's better that you know now. Either you can or you can't, and I won't judge you for it. There are, quite frankly, some people who can deal with CF, and some who can't. If you're one of the ones who can't, the sooner you know, the better. If you decide you can't, just be sure to break it off ASAP. The longer you wait, the harder it will be for both of you.

I hadn't thought of that post I made a while back that Allie linked you to, but I think it's worth taking a look at. It's very honest, and would be worth your while to read.