hi, my name is paula and my heart goes out to you I have a Fiancee' who is 47 and has CF, so I know exactly how you feel, and we have days that seam like things are going down hill latley and all have to talk to about it is his mom, she lost her first child at the age of 9 but I wish their was a support group for spouses. If you have any questions just send me a measage, On a lighter note how to you like having twins, I'm a twin, don't have any just one son who has Aspbergers and is 14. so I need 2 support groups. God Bles

Hi Shenwoman, I was looking for the same thing a few months ago and this seemed like the best thing I could find. It had a nice interface and the amount of people weren't so much that you get lost in the crowd.

Please mail me if you have any questions or anything. My wife (30) has CF and has many CF adult issues (diabetes, arthritis, GERD) so I'd be happy to talk to you about anything I can.

thank you paula and arthur. I do not know anyone else on earth who is in this situation so your responses are very meaningful to me. I met my husband when i was a freshman in college and fell in love with him almost immediately. we have been together for 12 and a half years. the times of crises are becoming closer together. i am noticing that i am not really handling it all that well. i am an acupuncturist and pride myself on being calm and spiritual...but in these times of illness my nerves and fear and panic take over. the twins just add to the stress right now as much as i love them. i am afraid of raising them alone, even though all along it has been my choice to be here and do this. i know i did not have to. the anticipatory greif is really the hardest part. and...obviously seeing your best friend suffer and being helpless to help him.

I have so much respect for you guys, going into what you knew would be a difficult situation and loving your spouses through it all. I know that it must be hard. I will keep you all in my prayers

I just joined this site in hopes of finding support for CF spouses. I cannot find any face-to-face support groups, which is a shame (in my opinion). The CF clinic where I live tries to get spouses together twice a year for a dinner, but that is only if they have time to plan it. I think there needs to be an organization out there that offers support groups to the families, spouses, and friends of people with CF. Even if the different groups met monthly that would help out so many people (in my opinion, anyway).
I tried to talk to a professional once for support about dating someone with CF, but I spent most of the time explaining to the therapist what CF was and how it affects my boyfriend.

It is nice to know that there are others out there looking for the same kind of support/guidance. I hope that there will be a better support system someday.

I am always happy to talk, though. :)

-Katie

Most people don't know what CF is, so yeah, you spen forever explaining it and don't get the vent you need.

Well I dont know if I can help you but I was kinda of wondering if anyone could give me some words of wisdom... I am 29 with cf, and in a relationship with a mother of a child with cf...The doctors are telling us that we can not be together because it is bad for me and the child...What do you do??????

tell em to blow it up their arrses :oP It really shouldn't be a problem unless one of you had B Cepacia or PA. What are you gonna do???

Did anyone every find a group/place where we can all chat? I am the wife of a 29yo CFer. I'm have an horrible time dealing with everything right now. Anyone to talk to would be a huge benefit!

Hey everyone. My name is Lilie. I'm 21 and just married my husband Scott in June. He has cf. Our marriage has been great, we love eachother so much and are perfect for eachother. However, it has suddently gotten really difficult. My husband has gotten very sick. He can't keep any food down and his lungs are filling up fast. He is very scared and he wants to get well, but he knows that he has to focus on himself to get well, which is hard to do since he wants to put me first.

I am more than willing to do anything to help him, but he thinks the only way he can get well is if he doesn't have to ever worry about me. He doesn't want to end our marriage, but he thinks he has to be alone to get well.

It's really hard, and we need answers now. I'm hoping to connect with a couple that has had a similar experience, or has some advice. Any advice is welcome. Thank you.

Hi, I am also looking for a support group for spouses of those with CF. I am engaged to a 27 year old with CF and we are to be married in less than 5 weeks. I love him, but I am starting to get scared about the wedding and future. I have read that pre-wedding anxiety/depression is normal, but I am also having some second thoughts about everything related to CF and the unknown that goes with it. I am feeling a little trapped and don't have a lot of people to talk to.

I am in the same situation as you and am also in a long term relationship with my boyfriend who has CF, we live together and are planning I get married in the future. I feel a face to face support group would be appreciated by many and is something maybe some of us need to actively set up?

It is incredibly difficult to find support online for people who are in a relationship with someone with CF. I recently wrote an article about losing my fiance, and brought up this fact. My post does list a few resources however, though it's still pretty scarce. It's here: https://www.breatheforbea.org/story-of-a-cystic-fibrosis-spouse/