- Long-Time Dating
- My Relationship With My Child
A young woman asks:
I’m new to the mailing list and new to CF, too. You see, my boyfriend has CF. He’s 17 and I am 18. I never knew much about CF, and still don’t. It’s not as if his family excludes me from his “life”, I go to doctor visits and all that stuff…….but, I still know very little about his lifestyle, what medicines he’s on, what he is and isn’t allowed to do, it’s things like that that I would like to know. We are from Morgantown, West Virginia, and we travel to Pittsburgh, Pa. for his doctor appointments. It is about an hours drive to and from. I’m new to this relationship, we have only been dating 10 and a half months, a year in October. We’ve grown really attached to each other and I almost can’t imagine my life with out him. Sometimes, I get really upset because I’m afraid that at any moment he could be gone. Of course I don’t let him know this, it would really upset him. Other times, I get really mad at him for being sick, even though it’s far from his fault, it’s not as if he chose to have CF.
I’ve never felt like this before, my feelings for him, that is. And I get so afraid that the one thing that means the most to me in my life one day will be gone. I know I have to get over my fear, but I know really little about this disease. I am the first girlfriend he has told about his CF. He’s always been afraid that if his girlfriend knew, she wouldn’t want anything to do with him. He says that I have changed that for him. I just get really afraid for him, sometimes I just don’t know what to do or say. I need some advice and guidance.
I’m 21 years old and my now-fiance (who will be 21 next week) has cystic fibrosis. I don’t. We met when we were both 16 and we started going out when we were 17. In January it will be 5 years and boy has it been an interesting 5 years!
[my fiance] and I live in Pennsylvania too, only closer to Philly. He goes to the University of Philadelphia for clinic (maybe you’ve heard of it?) and whenever I’m home I go too. I live in Lancaster county, because I’m going to college out here, and he lives in Berks county, which is about an hour away. We went to high school together and survived the college split (yes, it can be done!) as well as any number of other catastrophes including his living in Vancouver Canada for a year and a half. (Vancover’s on the far end.)
When I first found out that [my fiance] had cystic fibrosis I didn’t understand it at all. The first time [my fiance] went into the hospital (which incidentally happened nine months into our relationship… approximately where you and your boyfriend are now…) I totally and in all ways freaked out. Cried the whole three weeks. Cried every time I passed the orchestra room at the high school (he played violin) and every time the song “I miss you” by some whiny group I now hate came on the radio and every time someone even mentioned the Schukyll Expressway, which is the highway we had to travel to get to the hospital… which made watching the news interesting because tie-ups on the Schukyll are a daily occurance. I’m generally not a cryer, so this had my friends totally confused. I was the epitome of pathetic, and he was just in for a “tune-up”. (A tune-up by the way is when they put you in the hospital ’cause you’re catching something (or caught something) and they want to beat it out of you before it turns into something serious. 85% of the time a tune-up is nothing to worry about and is totally routine, even if they do add a week to the hospital stay. Of course, [my fiance] didn’t say he was getting a tune up and even if he had, all I needed to hear was “[my fiance]” and “hospital” and “three weeks” and I was devastated. I was pathetic.)
Stuff I can tell you from direct experience:
Everybody who’s got CF is different and a lot of the things you hear may have absolutely no bearing on how your boyfriend feels at all.
Total strangers who know even less about CF than you do will tell you how sorry they are and ask you how you can be so brave, or call you an idiot for dating someone who’s “gonna die.” My favorite teacher in high school spent my entire senior year trying to convince me that [my fiance] and I weren’t right for each other. She was wrong and even though I think 5 years together proves this fairly well, I still need to remind her she’s wrong every time I see her. Anyone who tries to convince you that you’re wrong for dating your boyfriend just because of the CF factor is wrong. Smack them with a telephone pole, or point out loudly and impolitely that they are not immortal either, and they will usually either wise up or go away.
It can be really hard, especially when you’re really new to the “CF world” to find out about some of the stuff that’s involved with CF without freaking out. First, find out how your boyfriend reacts to this… [my fiance] put up with it at first because he knew I was new to all of it, but after a while he got tired of trying to convince me that he wasn’t going to die tomorrow. I worried him dropping dead overnight for almost a month. Luckily one of my friends let me cry and freak out to her instead of to [my fiance] and all three of us lived through it. From everything I’ve heard, the chances of your boyfriend dropping dead overnight without you receiving a lot of fair warning ahead of time (like a very extended hospital stay) are pretty slim… about equal to you getting hit by a bus. As long as you’re not regularly walking in front of moving busses, don’t worry about his dying overnight unless you’re *sure* it’s warranted.
If you’ve got a biology teacher kicking around your high school/college and you’re not sure how someone ‘gets’ CF, (dunno if you’ve graduated yet) then bug the teacher about genetics and cystic fibrosis. Most geneticists have at least heard of CF so they can explain to you how it is passed through a family…. UNDER NO CIRCUMSTANCES LISTEN TO WHAT THEY SAY ABOUT THE HEALTH OF SOMEONE WITH CF AS MOST BIOLOGY TEACHERS (and anyone else in the general public) ARE WORKING ON DATA 5 YEARS OLD OR OLDER…. If you want to know something about your boyfriend’s health, either ask him or his family, get permission from him to ask his doctor, or (if it’s a general question) ask us on CYSTIC-L 🙂
For a while I was really mad at [my fiance]’s CF for making it hard for him to do stuff. For a while I was mad at his parents for “giving” him CF. Of course, his parents didn’t even know what CF was when he was born, so blaming them didn’t work either. Sometimes I stand in a field and curse at God for the very existance of CF… and for the fact that [my fiance] has it and I don’t, ’cause I’d give anything for him to be okay… and for the fact that I can’t do anything about him having it… and for the fact that I can’t see the future.
In reality, [my fiance]’s CF is usually a very small part of our relationship. He’s only been in the hospital three(?) times since we started going out, though he’s had some very “close calls”. We’ve found some “fun” in it too… I know when he’s around before anyone else does ’cause I can pick up his cough from 500 feet away. And he nags me about losing weight while I nag him about gaining weight. I help him with his therapy when he wants me to (you should see the looks you get when, in the middle of a crowded party, you turn to your boyfriend and say “would you like me to beat the crap out of you now so you can breathe?”)
Usually if [my fiance] and I fight it’s about either money or work or something like that… we almost never fight about CF. When we started going out we almost never talked about CF at all… the more I’ve learned about the disease from the Cystic-L the more willing [my fiance]’s been to talk because I understand it better. He hasn’t subscribed to here because he feels I need somewhere to vent my frustrations. Take it slow and keep communicating… it takes a lot of time and a lot of compromise to keep you both comfortable 🙂 (and that’s true of any relationship!)
There have been a lot of posts lately about the success or failure of relationships with people who have CF. I’ll freely admit that CF hasn’t made my relationship any easier, and I’ll also admit that some of my friends (especially the shallow ones) couldn’t handle a relationship with someone who has CF. Hell, some of them can’t handle relationships with a fish bowl (sans fish). You’ve got to communicate, you’ve got to pray, you’ve got to fight… you’ve got to love.
If you ever need anyone to talk to, email the list (or me directly) ’cause we’ve been there and we’re here for you. *HUG* good luck!
The people on this list have given you some wonderful advice. Love and life are precious and fragile things for all of us, regardless of whether CF is a part of the equation or not. They should be cherished and embraced whenever possible.
That having been said, I would like to make some other points too. Being involved with a PWCF can be very very hard work. You may, at some point, have to make some serious sacrifices. If your primary goal in life is to be with the person you love (and I think thats a pretty tough one to top) then your number one priority may become keeping them alive and as healthy as possible. You may have to move when you would rather not or give up some of your own personal dreams in order to do this. There may be times when you resent having to make sacrifices and you may at times take your resentment out on your lover or others. There may be times when they take their anger about the desease out on you. You might even feel guilty for being heathy yourself. There may be times when you feel totally inadequate because you can’t protect or save the person you love from pain or fear. You may have to sit by and watch the love of your life die and there will be nothing you can do about it but hold them and tell them you love them. There may be many times when saying “I love you” is all you can do and it won’t feel like much.
I guess at this point I should introduce myself. My name is [male name] and my wife has CF. We’ve been married for 4 years and I’ve experienced all but one of the things I mentioned above. I’m not saying you will experience any of these things. Perhaps I’m the only person who has felt some of these things but I doubt it. Noone seems to talk about this part of the relationship experience very often so I really don’t know. I’ve never talked about it before because I didn’t want my wife to feel bad and I didn’t want others to say…..”What a loser. He’s been doing this all wrong.” I don’t know what your experiences have been but nothing in my life prepared me for this. It’s all been on the job training. I just felt a need to say this now because I’ve seen a number of spouses of pwcf who shouldn’t be. They end up hurting themselves and the people they were with. Maybe some of them just never gave any thought to how hard it might be.
Now that the hard part (hard to write and hard to read) is done. Here’s some postive stuff to end with. Marrying [my wife] was the best thing I’ve ever done. I have been blessed with the experience of true love. I love her more than anything in this world and I know that no man has ever been loved more than I am. I don’t know why she feels so strongly about me but I know its true and I ain’t complaining. If I could go back in time to the night I proposed to [my wife], with knowledge of all of the difficulties to come, I would still ask her to marry me and pray she’d say yes.
I’ve found there is one very big perk to being married to a PWCF. I hear my friends talk about the fights they have with their spouses and I just can’t relate. [My wife] and I never argue about money (that could be because we rarely have any) or sex or any of the other routine sticking points for relationships. I guess we figure our time together is too precious for that so we just concentrate on loving each other.
I know this was long and rambling but I hope it helped. I just wanted to let you know that there can be a hard aspect to being involved with a PWCF and that you’re right to give it some thought. I would suggest you learn as much as you can about CF. I would also suggest you talk to your boyfriend about it and about your feelings. I think the fact that he’s told you about his CF and lets you go to his doctor appointments are good signs that he would be open to it.
In closing, I would like to refer you to my first paragraph. (I’ll repeat it for those of you who fell asleep while reading or got lost and can’t remember it) – Love and life are precious and fragile things for all of us, regardless of whether CF is a part of the equation or not. They should be cherished and embraced whenever possible. Best of luck to you and your boyfriend.
My Relationship With My Child
As a parent of a child with CF, I wasn’t given a choice about having a relationship with someone with CF. Our first child was diagnosed at two. My husband and I almost split up during that first year of knowing [our daughter] had CF. And then, the most amazing thing happened. We learned that as in all relationships, there are obstacles placed in your path. How you deal with these, makes or breaks relationships. Each time you make it past an obstacle your love for one another deepens.
People say to me sometimes, “I’m so sorry to hear about your daughter. I can’t imagine what you must go through.” And, I say to them, ” I would never wish for my daughter to have CF but she does. And because she does, I have spent more time with her and my husband than most families ever experience. Because she has CF, the three of us have a special bond. Because she has CF, my husband and I have a very deep love and respect for one another. Because she has CF, we work harder and get more for it than alot of people.”
Don’t get me wrong, if life could’ve handed me a different card and given me a child without CF, I would have gladly taken it. But I would never trade anything for all the life lessons I have learned through this experience.
If you have feelings for this person, follow your heart. Listen to those who are married or in relationships with pwcf and you’ll understand one thing. The ones who overcame the obstacles were repaid a thousand times over in the love that was given them.