Looking for input from the partners of someone with CF

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Hi all,

I'm a 31 year old female with CF. I have been dating my boyfriend for 4 years and we have been living together for 2,5 years. This means he has seen the ins and outs of this disease. I cough up a lot of mucus and blow my nose all the time (I always cough up in the bathroom, so never in front of him but I blow my nose in front of him all the time, it is almost unavoidable). I also use oxygen when I'm home most of the time (doctor said 16 hours a day helps prolong life for someone with low long function) so I do what I can. I have always been very independant, have lived on my own for years before, have travelled extensively and pretty much had a pretty crazy life with lots of adventures while I could, which he knows and has been there for some of it.

I stopped working 2,5 years ago (same time we moved in together) and am on disability. I lead a pretty calm life now, mostly taking care of myself.
I am starting to feel very self conscious about it. I am home most of the time, I feel i am just going through the motions. I think it's hard for someone to still find their partner appealing with all the coughing, mucus, oxygen, medications. CF is not a sexy disease.

I guess I am just wondering what the partners of someone with CF think about when it comes to all this. Are you ever grossed out (even if it is hard to admit..)?

My other question is how much do you and your partner discuss CF other than the usual "How do you feel today? Did you have a good day?" I consider that i have a good relationship and I do feel very comfortable in my relationship, but truth is, he does not talk about this, he never brings it up or addresses it. And if i talk about it because i need to vent for example, he listens but never has anything to say. It's like it is so much over his head and he has so little control over it (or none I guess) that he prefers to avoid the subject all together.
I'm curious about other couples!

Any input will be appreciated! Cf'ers and partners alike.

Thanks!

Vera

 

[ethan508]

I'm not my wife, but from what I know of kids, it isn't the gross stuff (diapers, vomit, boogers) that is hard to love. No, the times that they are harder to love is when they are whiney. My kids will get my utmost sympathy and care when they are producing the ugliest of goo but when they whine and grump those are the times I question myself on the adventure known as love.

For your partner's silence, maybe he has a keen understanding that you need to vent. Maybe he doesn't feel like anything he says will help, and that just being there for you is the best he can do.

I need to talk through the mortality or failing health aspect of CF at times, and my wife doesn't do well with this subject. I've learned not to expect too much when I need to vent on this topic. I suppose she is working out some challenging ideas on her own time and doesn't need me to force her through these thoughts. If you need more support than your boyfriend can supply, maybe turn to a counselor or trusted family/friend. Or maybe couples counseling could help you find a way to work together to offer each other support.