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Question:
Hi Ronnie! I didn't know where to ask this question and thought it would be one to hear your (and other CFer's) thoughts on!
As we all know, having CF is not just an illness or an excuse to eat whatever we want, but also a responsibility. This responsibility is ours and our families burden and requires a lot of support. I'm having trouble with how much this responsibility spills onto other. Like friends, and let's be honest, mostly BOYfriends. I don't feel it's okay to place such a burden on someone you've just met, so I normally wait a while. But since being at college it's hard to find the balance between what I tell them (him) and what I don't. When it comes down to it, if you're spending a lot of time with me you're spending a lot of time with me at the doctor, doing my therapies and reminding me to take my enzymes. I'm wondering how you find the balance between what they should know/do for you/ worry about and how to stop it if you think they're over stepping?
Answer:
Here's my rule-of-thumb: I only hide stuff I am embarrassed about. Since I've never been embarrassed about CF, I was always very open about it with anyone I thought I would spend more than a few days with.
As far as other people, "loving" or accepting this life, I've been there. What I always said to myself was "If I really loved them, I wouldn't bring them into this life with me". I mean, I love and embrace CF, but that doesn't mean they have to.
That changed when I met me wife. She told me that she fell in-love with me BECAUSE of CF not in spite of it. She's convinced it played a huge role in shaping me into the man that she fell in-love with. Frankly, I can't disagree with her on that.
To answer your questions...
1. What should they know? If it's a serious relationship, everything. Not telling someone we care about everything about something that's such an integral part of our lives would be akin to lying. Just think about it this way, if the shoe were on the other foot, would you want him to leave anything out?
2. What do I want someone who I'm in a relationship to do for me? Well, the answer might depend on wether you're a guy or a girl, but I know for me, I don't mind being "taken care of". Maybe my mom did too good of a job with me growing up or something, because I don't mind at all when my wife steps up to the plate and does "health stuff" for me. Mandi is great about putting my health #1 and reminding me that they need me to be healthy in order to best serve my family.
3. We will never be in a place in which we're able to control what anybody else worries about. Mandi may say she's not worried about my health or about the future, but how do I really know? Here's what I do know however, the only way I can control any amount of worry is by showing her that I'm doing anything and everything to put myself in the best position to succeed with my health.
4. How do we tell loved ones they're overstepping their role? As honestly, lovingly and straight-forward as possible :) I've found that with any sort of communication in a relationship that with those three things guiding your words, you can't go wrong!
Hope this helps a bit.
