I've come to the sad realization that my husband does not "get" CF. I truly believe he wants to be supportive, but because he is rather uneducated about Cf, he is failing.
When we met, I did no treatments. I wasn't very interested in Cf. Denial was my middle name. I was probably at a lower lung function than I am now. I was abusing my body in ways I won't mention and just did not have my health very high on my priority list. I think I just mentioned CF in passing once like "oh, I have Cf. It's no big deal. I am not like everyone else who has it." blah blah blah - we already know this story.
But I think that mentality has stuck with him. Last night we argued about me working. I am not against working, though I certianly like NOT working, I just mentioned I was a little scared. That it would be hard to handle treatments and exercise and a full time job and I am afraid of teaching again because I can see in hindsight how often I was sick while I was teaching - I mean schools are GROSS.
My husband told me I was using Cf as a crutch to be lazy, that I was never like this before - that teaching is a cushy job, one that requires little of me and should have no effect on my health. I know in typing this, on a blog read primarily by other CFers, that it is making him sound like a total dick - and he isn't, but he just doesn't know and I don't know how to make him get it.
I was thinking last night that next time I get sick I should just get admitted. that maybe 2 weeks of mom in the hospital would show him where this could be headed. But I don't really want that. I know that day will come soon enough. He doesn't know that that day will come though, and that is the problem.
I feel sort of dejected (rejected). How do you get someone to see something that they just don't/can't see? You can't, obviously.
I am more afraid now than I ever was because right now I truly feel I am alone in this fight.
7 comments:
*hugs*
-christine
Yep, you and I are much alike. It's really difficult to get someone to understand how much CF really entails - what it takes from you, what it requires of you - when your whole relationship is predicated on the fact that "it's really no big deal." My denial wasn't blatant or overt - I accepted I had cf - but my attitude was as you describe yours: I'm not like those other CFers. It's really easy to believe that lie, too, when you're not in lockup every other month, when you're able to basically pretend to live your life like a 'normal' person. That subtle denial though, puts us where we are now; we can't deny it anymore and the people who love us are left thinking 'I didn't sign up for this.'
I feel for you Shannon. I know that is a really tough thing to try and stick in someone else's head, when they can't see it first. It's a tough one.
Does your family get it? At least I hope you have someone (in your physical life) that gets it even if it's another family member. That way it might end up being a waiting game for your husband to get one day, and meanwhile you'll have someone else to truly understand this side of you.
-CowTown
I had another thought.... lol
Maybe tell him that his view of CF and you is hurting your feelings and that what you really want from him is his support. He might think, what am I doing that isn't supportive, and you can tell him that he needs to work on understanding what you have. Be straight out, and tell him you really need him on your side and to put some effort in understanding CF b/c you feel alone without him.
Maybe honesty and emotions would show him the light more.
Just a thought. Good luck.
-CowTown
I am sorry to hear about that Shannon. Thank you for sharing. For me it is so hard to know what I am supposed to do to be supportive sometimes, so I wonder if there are days (or lots of days) when my husband says that I just don't get it. I try to, but know that I mess up sometimes. It was particularly hard when my husband started to make the transition from denial to an uneasy acceptance of CF. When I read your blogs, I am very much reminded of him. Anyway, as the "other" the only suggestion I would have is to talk about it when you are not fighting and explain it. "We" (spouses/partners) often really don't know what to do at all.
Shannon,
I have a couple of thoughts. First of all, I think you need to take full responsibility for the rosy picture of CF in your husband's mind. Afterall, you are who he has gotten his information from all of these years. You can't undo that quickly. Maybe you have already done that...but what I heard was you trying to describe how CF really is, and not necessarily addressing how it is you got to where you are now (with him thinking it's no big deal, etc.) It's totally understandable what you have gone through. Heck, almost all of us have. But telling the story with the emphasis on you (I didn't want to do my treatments because it would mean admitting I have this horrible disease/I smoked because I could get away with it/I didn't want to think about how this might lead to death or associate with others who reminded me of that) might be a good angle to work.
In terms of wanting more understanding (and support) from him, I have definitely felt that from partners before. Unfortunately this current one is the only one who's been willing to step up to it! What worked for me was being specific about what I wanted - going with me to an appt to meet my doctor or offering to help with something when I'm sick - instead of generalities.
But the education thing kind of came in time. Like, I sent him a basic facts of CF type of thing early on. And then he'd learn about new things as I went through them. I think it's hard for people to grasp concepts unless they have something to tie them to. Maybe it works best to email him something, maybe to go to the doctor with you and have your doc give him an explanation, maybe get him a book - whatever you think is the best way for him.
Anyway, I hope I haven't been too harsh. I wish you lots of luck, this ain't easy stuff.
laura
I understand your hesitancy to go back to work. I agree that schools are a terrible place for a CFer to work. The only place worse would be a hospital. Also, no matter how healthy you are with CF (I've got PFTs > 100), I know that you need a lot of time to take of yourself. And as we get older, we need even more time. One of the reasons I think I'm so healthy is that I've had (and taken) that luxury. So be as selfish as humanly possible. You don't do anyone any good if you're dead. -James 32 w/cf
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