Cystic Fibrosis Support Group

It is common. He does not want you to worry. But you need to talk about it so you understand his needs.

How do I get him to talk to me? I am in nursing school so I know alot about it and after meeting him I read and read and read everything I could but it isnt the same comming from him. There are also times where he wont want to do his treatments. He says he has been doing it for 21 years and just doesnt feel like doing it. I dont understand that. If you know somethign will make you live longer why not do t. I dont live it and he doesnt talk about it so I just dont understand. Thanks for the advice.

My aunt has CF, and I know she won't always do her treatments, I think she is better now about it, but she is also now 25 years old. As children she would always dump the treatments in the carpet so she wouldn't have to finish it.
As an adult, I think it's more she feels like she didn't have enough time to do everything.
So why do they avoid doing treatments I'm not sure, But I just thought I'd let you know he isn't the only one who doesn't like to do it. As for if they wanted to live longer why wouldn't they do it? Well I don't think it's that simple. I think they keep a lot of feelings about the whole thing buried.
Just my thought on it.

Ha ha Bamachick...I read what you said about your aunt dumping part of it out on the floor to my fiance and he laughed and said he used to do that often. He would wait until his mom would leave the room them dump out half or all of it into the carpet. I think that is pretty funny.

Thanks for the insight tho. Ugh I think boys just drive me crazy in general.

My husband and I have been married for 7 years and there are days where he still won't talk about it. My advice is to keep asking. Some days it drives my husband crazy and other days he'll talk. He will never talk about anything long range. I think it scares him to think about it, but I don't know for sure. The best thing that I did was to get involved with his drs appointments. I have learned a lot from them and he is pretty open with all of them. Hang in there and remember that you are not alone.

I am adult with CF, and have struggled with talking about CF my whole life.

Yes, I think it is very common for us to not want to talk about CF and what is going on with us. We don't want to worry you. I have always had this feeling of "why spread the pain and fear?". I think there is no need for more people to suffer because of this disease. I am enough suffering.

But, with that said, I had a friend go through a terrible time in her life. I felt so helpless. I just wanted to help her. And her not talking about it, made me worry more.

So, now, I imagine my friends must feel that way too, and I am trying to be more open, but it is hard. Even though I know this disease inevitably effects the people around me, and it is easier for them if they know what is going on, I sometimes find it traumatic to talk about.

Also, we all like to feel normal as much as possible. This is not a fun disease to experience and therefore, not a fun disease to talk about and relive at times.

I think the advice above is good. Ask often. Try not to take offense when your fiance is not up to talking about it, and try to understand, listen, and be supportive when he can talk about it.

Lastly, responding to comments above about doing treatments:
We don't like to do treatments because they hurt, make us feel sick, or are uncomfortable. While we know they will help us to live longer in the long run, sometimes it is hard to overcome the short term pain and discomfort. I think of it a lot like exercise for normal people. It is common knowledge that you will live longer and healthier if you exercise at least 4 days a week, but do you?

I hope this helps somehow. I can only imagine how hard it must be to watch CF from the outside too.

I know it has been a little bit but I wanted to give my experiences as well. When I first started dating my now fiance, he only told me he had "respiratory problems." He didn't want me to know what he really had so he would not do his meds and would avoid anything about it. That was until he ended up in the hospital for a week. He was still able to keep it from me (I just thought he had pneumonia) until the last day when the doctor had mentioned the cf. I went home, looked it up and just cried! Once the cat was out of the bag I think he thought I would leave him. I stuck with him and wanted to know more, but didn't push because he was very quiet about it. I agree with an earlier comment where it didn't get much better until he actually let me come to the doctors appts with him. Once I was in there hearing what the doctors were saying, he was much more willing to talk about it and he realized how much I truly do love him and how I will not leave him just because he is "sick." Keep on him!! It may hurt when he shuts you out, but after a while it will become much better when he gets more comfortable!

I am 53 years old and I have CF. I can't speak for him, I can only share why I didn't talk about it. I was afraid that they would feel sorry for me.. I just wanted so much to feel normal. I was also afraid that people would avoid me.. that men would leave me. I still struggle with that.. which is why I am here now.
Just be supportive of him, show that you love him and that you won't leave no matter what you will be there.. don't try and control him, he knows what to do, let him do it. Just ebjoy him and your relationship with him.