How to deal with the anxiety of your partner with CF?

[anonymous]

Dear members,
I have had a roller coaster ride of four years after i fell in love with a girl with CF.She was my best friend and everything i could wish smart,funny and gorgeous just an amazing person.When i'm with her everything is perfect but when i have time on my own my mind goes into overdrive with the result of me panicking and stressing over the future and whether i'm strong enough to deal with seeing her sick and maybe not being able to have children.I lost someone very close to me a few years ago and the fear of that happening again made me break up with her a few months ago for good as i thought it was better for her health.The problem is i have tried this before have gotten back and then ended up doing it all over again.I just want to see if anybody has experienced this or knows how to try and deal with anxiety of Cf and losing someone.Is better to try and forget and walk away or to just deal with and enjoy your time with the person who ya love.

 

[Emily65Roses]

My boyfriend would tell you it's better to stick around and enjoy any time you can. Whenever I give him the option of walking away, he tells me no, that he'd rather stay and have any time he can. He'd rather be with me and have even just a year with me, than walk away and have nothing.

 

[anonymous]

You are going to get many different responses to this question because it's all a matter of personal opinion but here is my personal situation and two cents.

My husband and I met when he was 19 and I was 16, we are now 21 and 24. He told me from the beginning about his Cf and thought it might scare me way but it didn't phase me. We have had our ups and downs, and luckly only one hospital trip as an inpatient, but quite a few to the ER. It's hard to see him when he gets sick, throws up, doens't feel good and there isn't a damn think I can do about it. It's hard and it doesn't really get easier because CF doesn't ever really get better.

But for me, I always try to remember this quote, "it is better to have loved and lost, than to never have loved at all". Think about all the good times the two of you do have together, there are going to be many more. Do you want to give that up, just because sometimes it feels like its too hard? and even if you decide you just can't handle it (and honestly there is nothing wrong with that), there are no guarantees that any other path you might choose is going to be any easier.

Another thing that I always remind myself is, there are no guarantees in life. At least, knowing that my hubbie has CF almosts forces me and is a constant reminder to cherish every moment. I never thought of life like that before I met him, it was always, "there's always tomorrow, it doesn't matter, who cares, I have forever..." but after he and I got together I learned to cherish every moment. Laugh, take pictures, do crazy and fun things, what good is life if you can't look back and say you enjoyed it? But as far as people who are "healthy", most of them haven't learned to cherish the small things and the truth is that accidents happen every day, and it could be their last without them or anyone they love knowing it. At least we get the knowledge that our life, or lives together might not be as long as "normal", so we learn to make every moment count. Sometimes knowing can be a blessing as well as difficult.

Whatever choice you make about not being with her, or being with her will be a very personal one and will not be easy. I can't tell you how many times in the past I have wanted to leave when things got difficult, both relationship wise and concerning the CF but my love and desire to be with him was stronger than the difficulty we were facing. And even since we have been married (2.5 years ago) things have not been easy, but we have had as much fun as possible and it makes the hard things much easier.

Best of luck with whatever decision you make, but ultimately you have to do what makes you happy. And about the children part, many CF women have successful pregnancies, and if not even though it's not the same, there is always adoption and if you have the money-a surrogate mother (a woman who is fertilized with her egg, your sperm and just carries the baby to term because the biological mother can't).

Good luck and if you ever want to talk my email is division902@hotmail.com

Julie (wife to mark 24 w/CF)

 

[BlueFox]

Hi,

Julie makes a log of good points, but I thought I would add my two cents as well. My name is Erik and im 22 years old, and recently got engaged to Mary who is 22 also and has CF. We have been together now for over 3 years, and I knew her a year or so more then that. Being with someone with a disease like CF obviously brings up a lot of other complications, something relationships dont need more of. I have spent a lot of time thinking about the things that you mentioned. Mosly of the future of course. And like Julie said, its not something that you can totally ignore, but you can learn to live with the reality of it. You can learn to take each day as what it is, a chance to have new wonderful experiences and memories. A lot of times when people I know find out about Mary and CF, and I explain what it is, they say "oh that must be hard on you". And I think, "well no its not really hard at all, I love her, theres nothing hard about that". Not to say that its not draining at times ofcourse. Ive spent many days in the hospital with Mary, and many weeks with her when she is on home IVs, driven her to the ER, and gotten up early to set up her meds so she can sleep. But to me it is worth it. CF is a part of who she is. If it werent for her having CF, she very well may have been a different person. The qualitys that her growing up with CF have enstilled in her may very well be the reasons that you feel the way you do about her. Not to say that anyone would consider you a bad person for breaking up with her. Relationships end all the time. And in the end you have to do what will keep you the happiest. Believe me I've thought about how difficult it would be if I ever had to be in that situation, because I would feel bad about 'leaving because of CF' or something like that (Mar, since Im sure youll read this, Im not planning on leaving!!!). But I guess in that situation you would have to realise that it is most likely a combination of other things that would make you want to break up with her, not the CF. Julie already mentioned the options about pregnancy and such, and ofcourse that could be for a latter discussion. In the end I think that you have to do what will make you the happiest. If you know that it is wonderful to be with her, then understand what the reality is, let yourself be optimistic, and cherish every moment that you have with her. For all of us life is too short to not follow the path that will make us the happiest. Dealing with the lose of someone close to you is never easy... but if between now and then you have the most wonderful life you think you could have, it is worth it.

If you want you can email me at erikhudzik@yahoo.com . Ive read these boards with Mary for a while, but havent posted before, so I dont know how frequently Ill be on.

Good luck with everything!!

 

[jamesjoyce]

hi erik,
Thanks for your response it definitely helps to talk to someone who has gone thru it.I have talked to many doctors but its not the same as talking to someone who is experiencing it.My ex-girlfriend is 30 and is a truly amazing person i just have to learn to how to deal with my anxiety's and fears of death which is easier said then done.Its not fair on her as she needs an 100% support.I will keep in contact with you and let ya know what happens.I don't know if she would take me back at this stage anyway as i have messed her about already.Life is strange and makes you wonder why some people get sick and others not.I know i love this person as i think about her everyday i just have to deal with my fears.In my head i thought it was easier to walk away from her and her CF and replace her with another girlfriend but it hasn't being the case.Take care and hopefully a cure will be found and we will all enjoy good lives

 

[Starfall99]

Everyone made really good points, and I haven't had much experience in the significant other department so I don't know how much my opinion counts for... but speaking as a girl with CF, I think it's also important to consider that if you really can't handle it, then it isn't fair to "lead her on." NOT that I think you're purposely trying to play with her emotions AT ALL! Just in general... there are going to be some people in this world who can deal with these things, and some people who just can't, and I feel like that's ok. But if someone can't handle it, and is going to spend so much of the relationship worrying and miserable over dealing with the realities of CF, then I kinda feel like it's better to just admit it and let the person go.

I went out with someone for a little while, we really liked each other, and he really WANTED to be able to cope with CF and fears for the future and whatnot, but when it came down to it he just couldn't do it -- which I understand. I'm glad he broke things off when he realized that, because the longer it went on the harder it would have been for both of us... and as much as I enjoyed my time with him, there's part of me that wished he had thought about that and ended it sooner.

Aside from the difficulty the non-CF partner could have -- I don't think I could handle a relationship with someone if I knew I was causing him so much pain on a regular basis. The pain is going to be there no matter what, I'm sure, but if it's so great that it overshadows everything else I don't know that the relationship is going to be the best thing for anyone involved.

I guess what I'm trying to say is, you need to seriously take time to sit down and try to evaluate just what is going on in your head and whether or not you can REALLY do this. Because if you can't, it's not fair to her to try to start the relationship again. That guy did not want to break up with me, but he did it anyway because he knew in the long run it wouldn't be fair to me if he kept trying to handle something he just wasn't going to be able to handle. You definitely need to think about what will make you happy -- but you also need to think about what will be best for her.

I don't know if I'm expressing myself clearly or making any sense whatsoever... Just my opinion.

 

[anonymous]

hi,
I'm also in the same position u are thank god thank i've kinda gotten over it. my boyfriend has cf. we're together now nearly three years and he is the BEST thing that has ever happened to me. I went through a stage of being upset everytime we cuddled thinking to myself theres gonna be a day where i won't be able to turn around and say can i have a cuddle or a kiss and i got upset but really went into it to much in my mind if that makes sense. Everything the person in the first response said i totally agrre with every last word. most people take life for granted and like that person said theres always tomorrow but when ur with a person that has a long term illness its today not tomorrow. Luckily i've gotten out of this because i said to myself 1 i could be run over by a truck tomorrow because really we just don't know and 2 theres not point in dwelling about what gonna happen in the future its now you have to make fun and memerable.

lol oh look at me i didn't think all that was in me!!! go me!!!

 

[anonymous]

sorry i meant the second response not the first. not that the first wasn't good just the second basically read my mind!! good luck anyway.

 

[anonymous]

Hi eliana,
Of all the responses i got regarding my situation yours probably hit home the most as your points about some people being able to handle and others not.I guess i always thought i was strong enought to handle it.You also said about if someone worries about it all time which was me then it was not worth it.I lost my mother suddenly which was was devasting and i have never recovered from that fully as i still think about her every single day and it was the fear of that happening to me again that bulit up all this anxiety.I'm doing my best regards not calling my x and trying to move on but unfortunately its easier said done.I know its best for her thats why i broke up.I didn't do it for my benefit but so she can move on and stay healthy without dealing of the stress i caused her.I know i love this girl so i never led her on in anyway.She is mentally 100 times stronger than me as she has being dealing with Cf she was born.I know myself i have to let her go as mentally i'm not strong enough.Just from reading the e-mails and responses all of you are 100% and have no doubts about what you are doing.I suppose untill i feel the same i know i have to let her move on.I will keep an eye on the posting's.Which organisation do you feel is the best to give donations?Again i would like to thank everyone for their help and insight.God Bless.

 

[anonymous]

on www.cff.org they take tax deductible donations for CF research. You can also choose to "sponsor" somebody who is doing some sort of CF walk, because that money gets turned into the CF foundation. There is also the milan foundation which directly helps those with CF by providing them financial assistance if they need it. Like when the bills start piling up because paying for meds and doctors is more important...stuff like that.
Something I started doing a few years ago was mailing my local businesses that I used in my town (post office, grocery store, car insurance, daycare, college, highschool, doctors, dentists, orthodontist, family and friends too...) information on the CF foundation and Milan foundation (which you can get pre printed from the CF foundation for sure) and requesting that they donate in any way possible, even a dollar makes a diffrence in the end. Most of the time, I actually took the envelopes into the business so it was more personal. I did spend some money out of my pocket for envelopes and stamps (I pre stamped all envelopes back to the CF and milan foundations) but it's worth it. All together, but businesses helped a lot that year. That's just an idea if you are ever looking for something to do.

Good luck with your decision and you should feel good about whatever you choose to do, I agree with both sides that although it is hard and difficult at times, if you aren't 100% sure and are still struggling constantaly sometimes that makes it harder for the other person. But if you ever are able to "heal" from all the hardship you went through with your mom, (and I am very sorry that happened to you), sometimes if love is meant to be it does wait! Good luck and you will make the decision that is best for both of you.


Julie

 

[anonymous]

Although I agree with both sides of the situation, I don't think walking away is the best answer for anyone.
First, you said you've already broken up with your ex before, and you say you know you love her, so it seems that you've tried to move on before, but something brought you two back together.
I know it is extremely hard to get over your emotional feelings or the way someone's brain can constantly worry, but what I've learned is that you must let go of those feelings, because if you don't, you may never be fully happy in your life.
I'm very sorry about the loss of your Mother. Dealing with loss is the hardest thing- the "why did this happen" and the "how will I deal". I've been through some significant losses in my life, and thought that I'd never get passed them...and thought, what does life really mean after all this? But no matter how hard the loss is, there is a light at the end of the tunnel and sometimes we need to go through these things to realize and appreciate life more fully. I think loss is like a wound that never heals completely, it is like a cut that develops a scab- it is always with you, but it heals to a point where you can move on and continue life and enjoy life. I really think you should talk to someone to work through your Mom's passing so that you can move forward not only possibly with your ex, but in the future as well. Maybe a church or group can help. I think if you don't work through that, it will hold you back with anyone you are in a relationship with. As far as the CF concerns, I believe in this day and age, there are so many tragedies around us, that we must all live day by day........and if we are lucky enough to meet someone that makes us smile and feel love, then we should cherish every moment with that person and not worry about tomorrow...because in reality....none of us know just how long we will be here. We all take a chance in life when we decide to be in a relationship...you can meet someone who is "healthy" but then people get sick out of nowhere, and then what? This is just how life is and we must all take a leap of faith! Good luck and I hope you can get through all these anxieties you are having.

 

[anonymous]

[No message]

 

[anonymous]

I would suggest the Cystic Fibrosis Foundation (cff.org)

 

[anonymous]

I completly agree with the last anonymous poster. Because if you don't get help with letting go of these feelings you have what is going to happen if you really do move on and 1) your full of regrets because you didn't give the woman you love a chance because of a disease and 2) what if you fall in love with another woman and she finds out she has a disease. You can't run from your feelings. I beleive we've all been in your place to some degree but if we didn't work through things life would stand still. It's a learning expeirence and if you don't take any initiative for hardships in life to change your mind set than your not really doing yourself justice. Are you? Eva

 

[anonymous]

To all thanks for your insights and help.I just needed to talk to people in a similar situation as its not something your friends or family can help you with as you have to be in it to expeirence it.I do believe i have to be 100% if anything does ever happen and get rid of the demons of my mams death but its probably gone too far at this stage and like many of you said its better for me to let her go if i'm unsure if i can handle it.I don't think i will stop loving this girl and thats my problem but i know she is probably better off without who is so uncertain.I guess i thought i would find someone who went thru the same thing of me of being uncertain and worrying too much but i guess thats my downfall.All the best Say a Prayer for All

 

[anonymous]

Usually I just read these boards for support and comfort and I don't usually respond to them, but the last response invoked a lot of mixed feelings such as hurt, pain and anger. It seems as though you are looking for someone to tell you that it is okay for you to feel the way that you do rather than someone to help you work through the feelings that you have. If you read most of the responses carefully you would see that those who have responded have been in similar situations as you have and have had similar feelings as you have...but these people have worked through their feelings and issues and have offered advice to you on how to do the same...but it seems as though that is not what you want to hear.

At the end of each day, you are the one who has to live with your choices...and like Eva said...this is something you may regret for the rest of your life...if you can live everyday without the woman that you love sooo much, so be it....but from what I have read (and since you have been together for 4 yrs) it does not seem like you can...

I apologize if I sound upset... and I do understand that these past few years have been difficult for you and I am very sorry to hear abour your mothers passing. But I think the best thing for you to do is to stop running away from your worries and anxiety and face them...seek bereavement counseling for your mom's death and possibly couples counseling so that the two of you can discuss your fears together openly and honestly. She may have fears of her own...and this could possibly make the relationship stronger and closer.

Teresa

 

[anonymous]

Hi teresa,
thanks for your reply and i know what you said is right.I know myself i have to deal with both situations .So its just a matter of doing it.I'm sorry if i came across cold thats not what i intended.I'm just trying to handle whats going on and needed to talk and hear from other people and to hear i wasn't the only one with such fears.Your very right in what you said and again thanks for taking the time out to reply.Its now just a matter of doing what you said and talking to the right people.Take care Luke

 

[EmilysMini]

I only read the first 2 posts on this thread before deciding to post myself so forgive me if im beating a dead horse here. I can imagine what your thinking. It eats away at you everytime you even think about the possibility of losing her. but think of it this way, ether way you lose her. someone it seems you love, and seems to love you. so really your not accomplishing anything here. And dont think your doing her any favors by doing this ether. if anything it probably hurt her when you did that. My advice: spend as much time as you physically can with the girl, and treasure ever second of it till the end. Really its your choice, but in my mind it just seems stupid to deprive both of you of something you obviously want, when the only thing it accomplishes is doing the same thing, but sooner. and really, what does that help.

 

[anonymous]

Hi all,
Like the rest of you i have read all the postings and everyone will have a differrent view on this.Its not an easy decision as its life decision and its a big sacrifice to give up a major part of your life as your life is not your own once you decide to stick with your partner who has CF.There are a lot of great times but also alot of hard times and you have to be a mentally tough person to be able to handle it.I thought i was and it took everything out of me.Its an easy thing to be able to say lets live day by day without planning for the future.Nobody can make up your mind and say everything will be fine because thats not the case.You have to look into your heart and see how much you really love this person and thats all it comes down to.Are you ready to take everything on?I wish you and your partner the best.Mark