How to make my partner more comfortable with CF

[thelizardqueen]

Hi - I'm new here. I've been lurking for about a week, and have contributed to a couple of threads. I have a question - I've been in a relationship for the past 2 years now with a wonderful guy who loves me and knows about my CF and CFRD. However, he never seems to be comfortable talking about my condition when it comes to long term. I'm wondering how can I make this conversation easier for him? I want him to be a part of everything in my life, and him knowing the ins and outs of CF would be wonderful. Any ideas?

 

[Allie]

coming as a lover of someone with Cf, it is HARD to accept the inevitable in your loved one. WE don't like to think about it. I hated think about it, until it was thrown in my face and I had to.

Just keep trying to tackle important stuff in little doses. It's hard to grasp all at once. And Love each other, above all, just love each other.

One thing that helped me was Ry was always honest about it, but he could see when I needed a break from it. Know when you need to back off. That being said, tears are okay, and expected when talking about certain realities. I fell apart a lot a the thought.

Educate him however you can, while complaining about some meds you're on, or having to go in, or whatever.

Hope this helped, if not, get more specific, and I'll try again.

 

[anonymous]

I'm very patient with him when it comes to talking, and I do know when to lay off. He seems fine talking about certain things, but sometimes it just seems that he listens to me to put me off you know, I know he loves me and wants to take an active role in my health, but I know that he finds it very hard to talk about. Sometimes I just want to grab him and shake him and tell him listen this is what I go through, and this is what may happen!<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[Allie]

haha...Ry used to do that to me. He used to tell me "listen, this isn't fun. But we have to talk about this. I'll take you out for ice cream afterwards like a good girl"

Sometimes you do have to shake us and make us see reality, but we don't have to be happy about it. lol.

 

[Faust]

My lady used to cry all the time when we talked about it, said how unfair it is and all that. Now she just tells me to go run through mine fields. I think shes cool with it now <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[cdale613]

Hi Liz,

I've been in a similar situation - my girlfriend and I have been together for about 2 1/2 years. She knew I had CF when we started dating, but didn't know very much specifically. To help her learn about it, I gave her a copy of "CF: A guide for patients and families" (which you should be able to get for free from your clinic). I think its a fair, thorough introduction to CF. After she read it, we talked about a bunch of stuff she had questions about.

We haven't had to deal with a lot of the long term stuff yet - we are very serious, and will have to figure out the infertility stuff eventually, but besides that, we take what comes are way, and work through it, not looking too far ahead into the future. She's been wonderful... she has learned Chest PT, and does it a few times a week for me (I use the vest most of the time). She's been with me at the hospital, and is in the process of getting carrier testing done.

I know that Christine isn't particularly comfortable talking about CF in the long term too - its uncertain, and it can be scary, and its easier not too.
I can see her point... what's there to say? When we have the really serious conversations every so often, I am very honest with her. I do not tell her I'll be around 40 or even 20 years from now, I tell her that I will do everything I possibly can to be here 40 years from now. We don't dwell on what could go wrong, because that doesn't prevent it from happening.

I think talking about CF is important - and every so often I make sure to check and make sure that Christine's ok with everything - my quarterly appointments offer me the opportunity do so, even if its just asking her to come along with me, or if she has any questions. I am pretty sure that as the one in the relationship with CF that I think about this stuff a lot more than she does, and for a long time felt guilty and selfish for being with her. I've realized that she's an adult, and loves me, and that its not my job to "save her from CF."

I hope this was somewhat helpful...

Chris

25 w/cf

 

[shauna]

Hi Liz, I don't know how much help I'll be to you because I'm the complete oppisite to you. I've been with my boyfriend for 2 years too but I'm the one who isn't comfortable talking about CF long term. He asks me questions and tries to get me to open up but it scares me! We have spoken about it, I mean we've had to of course, but I prefer not to. I think somehow you just have to find a balance and I guess all you can do is be patient and I'm sure he'll come around, just like I guess I'm going to have to as well.

 

[Grendel]

If you are not married to him, and I was just someone's boyfriend, much less the boyfriend to a CF girl, I wouldn't want to talk about the future either. If you are married or engaged, perhaps he doesn't want to invest thought in your passing, which is ultimately apart of any discussion on future. Also, discussions of the long-term future always bother my wife, even if I speak with absolute optimism. Some people are just afraid of death, yours and theirs.

Good luck with that.

One thing I did was requiring my wife, before we got married, to go to two CF conventions (local and national). I wanted her to be fully aware of what she was getting into. Also, I figured her experience would promote our discussions of how CF relates to me.

Grendel

 

[serendipity730]

Liz,
I have the same problem. My fiancee and I don't discuss it much. He knows a lot about CF - he does my Chest PT from time to time, has visited me countless times in the hospital, even helped me with home IV med. In fact, he carried enzymes on him. I love his willingness to help out, but he never wants to have that long term discussion. Every time I bring it up, he says he doesn't want to think about every being w/o me. So, anyway, good luck.

 

[JazzysMom]

I think people in general (CF or not) feel uncomfortable talking about this stuff then you throw CF in which makes it seem closer or more of a reality & it seems to get even more difficult. My husband doesnt like to address death nor does he show a lot of emotion which scares me because when handling situations I dont know how far to tread. This year things were very bad for me early on & I told him he didnt have choice. He had to have this talk. Although it went well overall we have different views om things which of course will happen when one is living it & the other is living with it (if you know what I mean......the CFer versus the spouse of the CFer). Fortunately things have improved for me, but that talk needs to come up again & in more detail eventually. A little info at a time is the best way to handle it.

 

[andrusjc]

Hey I have been with Martha (30 w/CF) for over 10 years. Martha is fairly sick, her FEV1 is in the mid 20?s, and we have probably only had 10 hours of serious gloom and doom discussion during our entire relationship (most of them in the past few months). Martha was a bit healthier when we met and I had no clue what CF was all about, but I didn?t care cause she was hot! Then I fell in love with her and learned more about CF than I really ever wanted to!

I have known for a while that there is a good chance Martha is going to die young, and I don?t feel the need to discuss that with her. Talking really won?t change anything for me, I am too busy enjoying our time together to worry about when or how she is going to die all the time.

Martha is concerned about me the way you are concerned about your guy. I know you guys mean well and I know I am just a stupid guy, but I get it (and I bet your man does too) you don?t really have to beat it into me.

Like I have told you before, knowing what I know now I would never change my life at all (including my life with Martha). You know as a guy, sometimes I don?t want to listen to anything my wife says whether it?s about CF, taking the trash out, or how my in-laws are doing! Sometimes it?s all just blah?blah?blah?blah. Maybe it?s just a man thing?

 

[cfgirl2008]

I hope Martha gets better!!


tiffany 15 w/cf

 

[andrusjc]

<blockquote>Quote<br><hr><i>Originally posted by: <b>cfgirl2008</b></i><br>I hope Martha gets better!!





tiffany 15 w/cf<hr></blockquote>

Thanks...Me Too...She is an awsome person...I am afraid I would be lost without her.

 

[thelizardqueen]

My guy and I are talking about getting engaged in the new year, with a summer wedding, so I do know that he is invested in my future. He realizes that I may not be around 10, 20, even 15 years from now. I'm lucky that I haven't had any serious problems with my CF since we've been together, so he really hasn't seen the serious/scary side of CF yet. He does do my therapy every once and awhile when I can't do it myself, and he does know the basics about CF, but it seems that when we get into the serious side of things, he listens - but sometimes it seems like he doesn't want to accept that this is a serious illness. I am patient with him, and we talk about CF in small doeses. I'm going to check into that book one of you mentioned - 'a guide for patients and families', and just hope that this will help him. It just bugs me that sometimes when I want to talk about lung transplants, or our kids maybe having CF, its like he turns the off switch and doesn't want to deal with it. I just don't want something bad to happen to me, and him be totally unprepared.

 

[Allie]

It's hard not to mentally check out when talking about lung transplants. Especially if you're still healthy, thinking in the now is all he's probably doing. If you think of any small question, just bring it up to him like you're asking for advice or something, his opinion. That's how we got into a lot of conversations. And after you're married, these things will come up more, I'm sure.

One note, from the surviving perspective. If he turns out to be a carrier, PLEASE do embryo selection or adoption. The only thing that would have made losing Ry worse was knowing I was going to lose Ahava to the same thing.

 

[thelizardqueen]

I'm a little green around the ears when it comes to this, but what is embryo selection? I'm fine with adopting as a last resort, but I would love to have my own kids.

 

[Allie]

Julie's better at this than I am, but embryo selection is when they fertilize embryos and then implant the non-CF having ones.


In defense of adoption, from the moment they place that child in your arms, they are yours. I would have died to protect Ahava from the moment I saw her. Like any other mom. She IS my child. Genetics has nothing to do with love. think of how much you love your husband,boyfriend, etc. AND you save a child from being alone and unwanted.

*sorry, I get a little defensive whenever people talk about thier 'own' kids. I've had people say that you love your kids more if they share your genetic material, so I get a little defensive*

 

[thelizardqueen]

I'm not saying that I'd love an adopted child any less, but in my defense, I want to give birth, I want to go through the pain and feeling of childbirth. I want to carry that child in my womb for 9 months. That is just something I want to do, I have nothing against adoption as my brother is adopted. ANd I don't love him any less because we do not share genetics.

 

[Allie]

Wasn't saying that. Just my gut reaction, sorry. Happens after awhile.

Links to embryo selection:

<a target=new class=ftalternatingbarlinklarge href="http://www.drary.com/pgd.htm
">http://www.drary.com/pgd.htm
</a>

<a target=new class=ftalternatingbarlinklarge href="http://www.ucl.ac.uk/~ucbhjow/b241/pgd.html
">http://www.ucl.ac.uk/~ucbhjow/b241/pgd.html
</a>

 

[thelizardqueen]

Thanks for the links Allie!