question from a non-CFer

[anonymous]

This is just a general question for cfers or relatives/friends/significant others... different points of view would be appreciated, actually. When I first started dating my boyfriend, CF was a relatively new concept for me. I didn't know much about it, nor did I realize the seriousness as he is extremely healthy and his quality of life (from an outsider's perspective) is no different from that of anyone else. He's got to be the most positive person I know and he lives life for every second. He's very open to talking about CF with anyone who has questions and he rarely gets down about things.

That having been said, my question deals with the rare times when the statistics start to get to him and the absence of a cure overshadows his excellent health and perspective. I've come a long way with my knowledge of CF, but I still have a long way to go. That fact along with just not knowing what it's like to live with a genetic disease makes it hard when it comes to saying and doing things to raise his spirits. I want to support him in anyway that I can and will go to any length to do so, but like I said, as it is he's already the most positive person I know. How do I help a positive kid through his low times?

 

[littlemisssilly]

Hi there,

I can only answer from my own experience. Also, it's a bit hard to answer without knowing his or your age as I find that as I get older, my perceptions, fears, priorities change (and that's normal for anyone). When I was younger I honestly believed that CF was just some 'thing' I had without really appreciating the seriousness of it.

Also, I was (now when I look back on things) naive back then as I honestly thought that with a positive mind i could 'conquer all' inlcuding CF but later discovered that 'conquering CF' has more to do with your genetic makeup than positive attitude (obviously doing treatments helps enormously, but ulimtately it's genetics and some unknown X factor that determines the course of someones CF).... I think anyway.

I'm not for one minute suggesting that your partner is wrong to have a positive attitude, a postive attitude is great but I know from my own experience that that positive attitude sometimes fades, especially during times of feeling sick and being unwell (I still to this day find it really confronting being sick because it stirs up all these emotions and fear of the unknown, because like you said, it's a progressive and uncurable illness).

Best advice I can give is to just listen to him when he tries to open up about his feelings about CF. That's easier said than done because you obviously care about him and he may say things that you may find hard to hear. Don't push him to open up, everyone is different with how they process things, just let him be. The hardest thing I found with loved ones is that they themselves get / got upset when I tried to talk about my fears regarding CF etc. (because they love me and it's hard on them also) so, it often feels 'lonely' because people try to 'pep' me up without realising that all I want to do is just vent my fears / sadness when feeling flat.

It seems like he's lucky to have you, so all I can say is 'be there' for him (sorry for sounding cliche).

Lastly, thanks for letting me vent, you've indirectly helped me get things off my chest also!!

Take care