Relationships

[gunelle]

Hi all, I want to ask if you have any experience or good advise about cf and relationships?

I have been with my partner for 7 years now. I was diagnosed 5 years ago. He has always been very supportive and a great aid. And always been there for me.

Last week he confessed to me that he was feeling sad. He was sad about the challenges my illness brings with it. He was sad that I have limitations. Sad that we cannot do all the things normal couple do. He thinks that if we go somewhere and it gets late, I will feel worse the day after and become sick and eventually miss a day of work. That is his fear. I tell him to not to treat me like a china doll. That I can do many things. But his nature is to worry. He confessed to being sad about the issue of children. That it's so complicated. That my doctor "almost" advised us against it. He sad that he was not happy about the way things were. He was sad.

I wish I could say that I comforted him and that we had a good conversation about it. But unfortunatly my own fears and worries came in the way and we ended up having a fight. I confessed to him some days earlier about my fears that he will leave me because of my illness. That it will all become too much to him. He said at the time that he would not leave me for my illness. I still worry about that tough. I have other issues also. Lot of emotional baggage.

So I wish I could turn back time and listen to him, listen to his fears. We have tried to talk about it since, but it's hard. He doesn't like to talk and says that everyting he says I turn against him. Believe me I've tried, but I suppose my own baggage comes in the way. We have though talked about doing more things together, like "normal" people. We have also decided to try for a baby after summer.

Please does anyone have any experience with this? Something to help me see things from his perspetice and help him? I just want him happy...

 

[John O]

Hi,

Well dealing with CF from the other side does come with emotions. I am married to an awesome woman and she supports me everyday. She has told me she has fears of losing me. I mean I tell her that I am doing everything I can to put myself at the best everyday. I tell her she gives me motivitation to live everyday. One thing WE all have to understand is that WE all could die one day and you do not have to have CF to have your life early. So we do not dwell on that death topic. You have to live everyday and enjoy it because no one is guaranteed anything. If it was me I would just reassure him that your in this for the long fight. No disease will define who you are. As for making a baby it is very much possible to have a child. Is your partner going to get screened for CF? I just want you to know that my wife and I had the deck of cards stacked against us and we were able to have a child. My wife was infertile and also a CF carrier. Our daugther was born and is as healthy as can be and NO CF! Here is my blog about IVF and my blog about my CF life. Enjoy and would love to talk to you.

http://livingmydreamswithcf.blogspot.com/p/ivf.html

http://livingmydreamswithcf.blogspot.com/

John 28 years old Cfer.

 

[Melissa75]

I'm surrounded by people who are married/in committed relationships (I'm raising kids and in that world right now), and I would say that from what I see, there is no such thing as normal, especially if you define normal as worry-free.

Some couples have kids with serious issues, some couples have parents/ILs with serious issues, some people are chronically sick, some people are stricken with depression, some couples have messed up careers and finances, some people marry the wrong person for them, some people have life-changing accidents, some use alcohol too heavily, some have eating disorders, some cheat on their spouses. The list could go on.

I suppose somewhere out there exists a couple with none of these problems, but even they are probably not going out late very often, especially after they have kids.

I think it makes sense for you partner to be worried about you and to recognize the ramifications of having CF. Like John said, you can reassure him and appreciate that he is thinking of you. It's even okay to think of himself too--how will this affect me and our child down the road?

I guess the questions I would ask myself and him are 1) does he realize EVERY marriage/committed relationship has it's hardships 2) can he commit to the hardships he foresees with you? and 3) can he commit to you even through the hardships he CAN'T foresee with you?

Of course, all these questions go in reverse and you should ask them of yourself too.

 

[gunelle]

Thank you for your answers. I don't know if my partner is worried about me dying. I mean I know he wants me to be ok, but I don't think that that is the core of his worries. Are there any partners out there who want to tell their story? thx

 

[LittleLab4CF]

As CFers decline, it can put an unnatural strain on a mate or close family. Don't eliminate CF dialog from your relationship but it may help to just manage the "usual" issues with your medical team, including the usual messing with doses and such. Also it is natual and fairly common for people to mourn at times when something important is lost. It doesn't have to be a DLT or fatal liver failure, but low pulmonary numbers or MRSA, CFRD, PI and such are a battle. Any one would kill a lesser person.

Take the useless weight off his shoulders?

LL

PS. I have been married since 1980 to a woman who has possibly suffered far more from my CF than I have. As best as I can determine, CF is a rollercoaster ride for all involved. At a point the ride wears away everybody's resilience but the ride continues til nobody can tolerate another twist or turn.

Three years ago my wife was diagnosed with stage 1 uterine cancer. This was her first serious health issue. Delighted to finally help her, I assured she had a perfect convalescence. This year a very early breast cancer was found and it had some aggressive cancer cells. I had been hiding my decline for almost two years and I was soon to be her focus instead of taking care of herself.

Everything fell in place so quickly that we had less that a week from biopsy to surgery. Then we got the news that they needed to remove more. During all this my CF flared and it took some outright contrivance to shift her attention back on her second surgery.

After the dust settled we both realized how traumatic everything really had been. Another three months have passed and she is healthy and working. We are far from normal. We've started seeing a psychiatrist to air our fears and try to keep from killing ourselves with worry over the other.

 

[azdesertrat]

I am very fortunate to have the best girl in the world in my life. My Wife (she IS my Wife, even though we've never been officially married) has literally slept on a window sill in my hospital room for 3 weeks. She has sacrificed in every way possible to help me through the decline I (we) suffered pre-transplant right up to this day. Her biggest worry is I'm going to get sick again & wind up in the hospital. I could write a book about all we've been through & how she has been nothing less than saintly in her love, devotion & concern for me. I have no idea what I ever did to deserve a woman this special; I'm just forever grateful she chose to share her life with me. Now, I'm a 'house-husband'. She is the primary bread-winner. I stay home & do my best to keep our house livable. There are times when she gets overwhelmed & says that what we've been forced to live with is unfair. We all know that in the life of a CF'er, there is no such thing as 'Fair'. She deals with huge amounts of stress. There are many times I feel completely worthless. Watching the woman I love go out & bust her ass doing a man's job is very frustrating. She is a landscaper, in Arizona no less. when she comes home after 12-16 hours of manual labor in brutal summer temps,she is just wrung out. Many times it makes me feel like less of a man because even though I receive disability, its my Wife pulling all the load. There is nothing easy when a man/woman gets involved with a person with CF. The only way I get through sometimes is because I'm always thinking; no matter how bad you have it, you don't have to look around too much to find someone who has it a lot worse. I guess that's about the best I can do for you. It may be useless, but I guess I got this off my chest anyway. Our best to you & yours.

 

[gunelle]

Thank you Pat, this was no usless, but very usefull. My "husband" admits to feeling frustrated, sad and angry at times. We have been able to communicate better about it now, which makes me happy. I understand his emotions, but on the other hand, and as Pat mentions, it could be much worse. Also considering that my cf is "mild". Just coming on this site, reminds me that I am fortunate -there are people suffering more than me. And hence also partners.

 

[Simba15]

wish i could help

Hi all, I want to ask if you have any experience or good advise about cf and relationships?

I have been with my partner for 7 years now. I was diagnosed 5 years ago. He has always been very supportive and a great aid. And always been there for me.

Last week he confessed to me that he was feeling sad. He was sad about the challenges my illness brings with it. He was sad that I have limitations. Sad that we cannot do all the things normal couple do. He thinks that if we go somewhere and it gets late, I will feel worse the day after and become sick and eventually miss a day of work. That is his fear. I tell him to not to treat me like a china doll. That I can do many things. But his nature is to worry. He confessed to being sad about the issue of children. That it's so complicated. That my doctor "almost" advised us against it. He sad that he was not happy about the way things were. He was sad.

I wish I could say that I comforted him and that we had a good conversation about it. But unfortunatly my own fears and worries came in the way and we ended up having a fight. I confessed to him some days earlier about my fears that he will leave me because of my illness. That it will all become too much to him. He said at the time that he would not leave me for my illness. I still worry about that tough. I have other issues also. Lot of emotional baggage.

So I wish I could turn back time and listen to him, listen to his fears. We have tried to talk about it since, but it's hard. He doesn't like to talk and says that everyting he says I turn against him. Believe me I've tried, but I suppose my own baggage comes in the way. We have though talked about doing more things together, like "normal" people. We have also decided to try for a baby after summer.

Please does anyone have any experience with this? Something to help me see things from his perspetice and help him? I just want him happy...

Hi I wish I could help you. I can't even meet anyone and havent been in a relationship in a long time. So, I'm battling why that even is.

 

[mgl]

Are there any partners out there who want to tell their story? thx

I'm a partner. We've been together 21 years and my partner was diagnosed about 13 years ago. We joke that I must have a 'caring' gene because if anything, CF has only brought us closer together. I do worry too much and I'm over protective, but I'm not sad, I stay positive. I know we might not get to do everything we planned, but that's true for many people, and I still consider us to be very fortunate.

 

[TexasTapdog]

I'm a 35y/o male with DDF508 and CFRD, so I don't have much to add on the non-cf point of view. My supportive wife has a made a blog to help share recipes and experiences of living with a CFer; plus a couple other off CF topic interests of hers. Maybe her blog could provide insight into his shoes, or simply give him another resource to someone living with a CFer.

https://boldbluebonnet.wordpress.com

 

[jaimers]

Counseling may be helpful just to have someone help you both think through all of your questions as well as some questions you not have thought about!