Having a relationship with someone with Cystic Fibrosis

[AaronBernstein]

I didn't know that my girlfriend had Cystic Fibrosis for several weeks, just until recently. Since I had been spending more time with her and being around her more and more, and making my continual interest in her very apparent, she thought I needed to know despite the risk of losing me (she thought I might not want to deal with it). When she told me that she was diagnosed as an infant and about the disease I told her I still wanted to continue our relationship and that I was glad she told me. After all, I was falling in love with her. She was so happy then. The joy in her big eyes was definitely there. You would never once think to look at her that she has this internal war waging on her body. I did wonder why she coughed often though and seemed quite congested a lot of the time despite looking so healthy. When I would ask she would just say that she had an ongoing cold and change the subject. She would also excuse herself to the bathroom often (to take her digestive enzymes before meals as I now know). She is very vivacious, sassy, and very active. She goes to college like many young adults (she's 21). She swims, surfs, loves the beach, loves to do yoga. She always likes to eat all the organic and all natural foods and fresh juices. On the outside she looks like the picture of perfect health, and she has the most gorgeous clear sun kissed skin I've ever seen. I know it was hard for her to tell me. After she told me she explained to me about all of the medications she has to take in a day, her vest and nebulizer treatments, digestive issues, etc... I've begun to spend more time with her in private as now that she's told me she feels more comfortable with that whole aspect. And with that I've really begun to see how this affects her life everyday. But since it's all new to me I honestly don't know how to react to what I see. I'm not really sure whether to offer to help her with treatments, act more concerned and be extra caring and attentive, or just go on as normal, like I was before she told me, and not do anything. What should I do? Has anyone else here had any similar experiences in their relationship?

Thanks,
Aaron

 

[Jellybaby]

Hey!
I'm 17 with cf and can kind of relate to your girlfriend although iv never been in a relationship long enough to tell someone but well done u seem like a great couple not letting it affect you
I can only imagine how hard it is telling someone and not knowing how they'll react!
All I can say is, majority of people with cf have been diagnosed at a very young age, this is wat they've grown up with and don't no any different so they get on with it.
A lot of us don't look for sympathy and I'm sure the best thing to do for your girlfriend is to act the same as normal (so she knows you don't think any different of her) I suppose all you really need to do is stay they same and while she's doing her vest or any other treatment keep her amused, make her laugh (best medicine ) and just be there. If you have any other questions about cf and aren't sure if you should ask her just ask here and you'll be an expert on cf in no time good luck for the future!

 

[Kimmiegirl]

I think your post is great. Good questions. I am a mother of a 3 yr old little girl with CF. She is just beginning her journey, but I appreciate what you wrote, knowing she will experience the same situations when she is old enough for dates. (Maybe like 40... just kidding) She told you because she trusts you, she likes you. I'm sure she does not want you to act differently. But I do think it is a good idea to ask her to teach you how her treatments are done, from beginning to end. If you do have a long future together, this will help you, her and those that love her, to have confidence in you being able to help her in those times she can not help herself. I would learn "hand CPT." It is like her vest but done by hand and helps a lot more mucus come out. It is something she can not do by herself. If you become even more serious I would accompany her to a clinic appt. You can learn a lot there. If it is okay with her of course. God Bless you guys.

 

[Printer]

Aaron:

I'm 73 and I have CF. In September we celebrated our 51st Wedding Anniversary.

My advise to you would be to treat her as you would any other, non CF, woman. Tell her that you want to be close and assist as much as she will let you. Volunteer to go to the CF Clinic on one, or more, of her visits.

Lastly, be happy that you have such a wonderful woman in your life.

Best of everything to both of you,

Bill

 

[Gentrygirl]

I'll agree...this is her "normal", even though it is brand new to you. When my son was first diagnosed, we went to visit his cousins. At first they stared at his vest like he was an alien, and then he let them try it on, told them it felt like a massage. He takes it with him to sleepovers and uses it when his friends come here. He made it their normal. He's gotten really slick about sliding enzymes in his mouth at the table without anyone noticing. If I see someone stare, I distract them with conversation, so that might help her- surrounding her with more "normal". She sounds active, that's the best thing for her. Also find activities that you can do with her that are indoors so she can do treatments and not feel like she should be entertaining you instead. Cards, chess, movies, etc. Nothing makes me happier than when I go to tell my son that dinner is ready and he's on the couch with his buddy, vest on, playing video games. There's just no problem with it- it's comfortable, normal. Ask questions so you understand it, but don't grill her about it. It could freak her out and make her feel like you are with her to "save" her instead of with her for her. If she's in good health now and keeps up her good habits, she'll grow old and wise like Bill. wink wink!

 

[JudyB]

What a nice person you are!

 

[azdesertrat]

When I started dating my Wife of 23 years, I never hid anything from her. When I would take her out for supper, I took my enzymes right there at the table. Finally, after about a month, she asked me what it was I was taking. I told her. Then she asked why. I told her that, too. Obviously, it never fazed her a bit. I was very healthy back then for a person with CF. I never started having any real problems, other than my gut issues, until I was in my early 30's. (33-34) So we had a good 10 years before I started being bitch-slapped by CF. Now she's pretty much come to terms with the fact she will most likely out-live me. She doesn't like it, but like the rest of this wicked disease, she's accepted it. This doesn't mean your girlfriend won't out-live you. In my lifetime I've seen & been the beneficiary of some great strides in the treatment of CF. My Wife has summed it up quite nicely. Most all of my problems are due to the fact that I'm "an old guy with CF". That's just the way it is. Best of luck with your relationship. I hope you can be as loving, compassionate & loyal to her as my Wife has been to me.

 

[azdesertrat]

That should have been almost 10 years. Do the math. It wouldn't add up, ya know?

 

[welshwitch]

They way I think about it, EVERYONE has something. Be it CF, or some other weight. Depression, a tough childhood, you name it. It's the baggage that people bring to the table. The key here is, how do you DEAL with it?

My advice to you is: keep doing what you're doing! It sounds like you are an extremely kind person and you like this girl a lot. Don't make CF a huge deal, but don't ignore it either. There are plenty of things you could do to support your GF with CF.

*Offer to come to dr. appointments
*pick up her meds for her
*be general moral support
*run in 5K or half marathon and raise funds for CF

*(Most important): Just "be there". Most of the time CF plays a background role in my life. But every now and then, it rears its ugly head. Maybe I get sick and am down for the count for a couple days. Maybe I read an update of someone I know who passes away from it. Maybe I have a rough dr. appointment. The best thing you can do is be there and listen. Be available for hugs. Ice cream never hurts too

Good luck!

 

[Iamqueenofeverything]

Ask her questions. Talk about what you and her feel about anything and everything. Respect her feelings when she doesn't want company while she is sick. But when she does want company bring her a little something to make her smile like a little movie you two enjoy. Take baby steps with each issue that is brought up.

 

[kbkbkb]

I can relate to your situation, but on the other side. I was just like your girlfriend. I would start relationships and then avoid the topic of CF until I felt comfortable enough to tell the person I was dating. Sometimes this turned out okay and sometimes not. I guess that is why I became a little gun shy about discussing it early in a relationship. I knew I would have to tell them sooner or later, but I wanted to know where someone's heart was before I told them.

I found that most men I dated would say, "I'm cool with it." I would later find out they had more of a problem with it than they let on. So, your girlfriend may be cautious about discussing too much. My advice is to let her take the lead in letting you know about things regarding her health. I'm not saying to ignore it altogether. I'm just saying that as the subject comes up, that is the time to ask questions. If you really care for her, she will know it. We woman are so much more intuitive than you can imagine

It is great that your girlfriend tries to keep herself healthy and exercises. These are great defenses against the effects of CF. The advances in research have made the disease so much more manageable.

It is wonderful that you have these concerns. It seems your heart is genuine. I too, was fortunate enough to find someone with a genuine heart and we've been married for 13 years.

 

[cfgf0417]

I have been with my boyfriend Dylan for a year and a half. He was diagnosed with CF at the age of one and he told me about his disease about a week before we officially started dating. My advice to you is to be supportive in every way you can. Become educated on CF and how it affects her body, that will keep some of the crazier sounding symptoms from surprising you so much. Dylan's salty sweat still gets me, because I forget until I kiss him and taste the ocean. I became so obsessed about learning about CF, I made cystic fibrosis awareness my graduation project. I raised almost $500 for the CFF on my own. Another thing, offer to go with her to doctor's appointments and care for her when she gets sick (because it will happen, and will worry you to death). Also, I try to prevent Dylan from getting sick as much as I can. I make sure that if I am coming down with something, I stay away, and I wash my hands all the time. I also try to encourage him to put his health before anything else, I remind him to do his treatments, take his enzymes, and avoid things that will harm his body. We, as a couple, have vowed not to drink or smoke for this reason. Honestly, the hardest thing about being with someone with CF is coming to terms with the fact that you will most likely outlive them, especially if the relationship becomes long term. For me, CF is just a mountain in our relationship that I have chosen to help Dylan climb. While we may not win, I will be there until the very end. Being in any relationship takes work, but to love someone with a disease like CF is a challenge itself, but if you can do it, it is truly a blessing. I would not trade my relationship with Dylan for the world, he is my best friend, and without CF, he would not be the same person. His illness has made our relationship stronger than I would have ever imagined. Good luck, Aaron. CF will change your life

 

[sk8ergirl1411]

Hey all, I am in much of the same situation. My boyfriend has CF, and told me about it before we ever started dating. I've researched a lot about it but its nothing we have really discussed together. I guess up until now it never really came up, and when he did have dr appointments I would ask him about it but all he would say is that they went fine, but could have been better. Although it's been nagging at me it's not a subject I've pushed because I feel as though he will tell me when he is ready. He knows that i'm here for him and that he can tell me anything. Although he has CF I have never really seen him as sick. Sure he is rather skinny, and takes a lot of medications but it's never bothered me and honestly I don't even notice when he takes his meds at dinner. When I think of him I see a boy that is incredibly smart and full of life that I love no matter what.

I've been trying to get him to exercise because I know it's good for his lungs, but he hates it lol. Recently he hasn't been feeling well, and seems to have no energy. He even finds it hard to walk to class (we are in college). He said he will probably have to be hospitalized before Christmas, so I think this weekend when we see each other I will finally ask him to talk more in depth about his CF, that way I can better understand what hes going through. In the mean time any advice or tips to help boost energy? Also any ideas on some fun "dates" that wouldn't involve to much energy on his part? I've already suggest a movie night at his place, but any other ideas?

-Thanks!

 

[CyrilCrodius]

cfgf0417 has great advices.

Also, make sure you don't treat her like anything lee than normal. She seems to not want people to treat her differently because of her CF, hence why she hides it.