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Cystic Fibrosis and Divorce

Love and MarriageDespite having cystic fibrosis, I live a charmed life. My fibros with their wonderful women by their sides know exactly what I’m talking about. As a kid, I had no concept that I would be a less-than-desirable partner when I grew up. As a teen, it started to become more evident that I wasn’t like the guys who had girls hanging off their arms, soon followed by the realization that CFers have the deck stacked against them when it comes to finding work that can support a family. Our wedding day was, without a doubt, my happiest day of my life – but the story doesn’t end there for couples, does it?

Divorce is rampant with rates around 50% for decades now and having a child born with CF sends those odds through the roof, certainly in the 60s and 70sย  when CFers were dying by the time they were 12, almost without exception. Money fights are still the biggest cause of divorce in America, and having a CFer will almost certainly put financial strain into all but the richest’s relationships. So…

A new era arrives

What happens when CFers start getting married? Will they conform to the norm in that area? We are known for breaking molds yet we are forced to be mindful of molds that we absolutely mus stay within, such as doing our treatments. I’ve been blessed to have parents who are still together after almost 4 decades (sheesh!, they’re old – “hi, guys!”) and Beautiful’s parents are nearing their 30th anniversary. We even attended my grandparents’ 60th anniversary together and absolutely love to go spend time with them to catch up for the years I couldn’t. In the general population, statistics show that these are very favorable conditions to marriage, but there are others, also. Having the following in the affirmative each decreases the statistical odds that a couple will become divorced: common faith, pre-marital counseling, not co-habitating before marriage, college education, dating at least 6 months, and so on.

Statistics got me wondering…

What role does having CF play in statistics?

I was pondering today that I don’t know of a single CF guy who has been married and then divorced. Not one. Now, I’m sure there are exceptions to this, but when you compare it to the number of single CFer moms out there (either by non-marriage or divorce) it sticks out like a sore thumb to me. I’ll just come out and say it because I know a significant number of you are thinking it because of bad relationships with guys: some guys are just douchebags. Plain and simple. They aren’t marriage material no matter what. Those guys who won’t commit to anything because they want to “keep their options open,” right?

There are a few things that could be at the root of this discrepancy that came to mind:

  • CF dudes take a while to be marriage material, but then they really have their stuff worked out
  • most women are nurturers by design and
  • some women just want the baby without the man to deal with, too
  • CF dudes appreciate their wives more knowing they were chosen among the flocks
  • there might be something wrong with wives of CFers who just need to take care of CFers

We discussed it today during lunch (yes, we have lunch together every day now that she works from home with me) and she was actually the one who suggested that there might be something wrong with women like her who marry sick guys like me (I saw the twinkle in her eye as she said it). However, to mostly credit her love and hard work, I’m far healthier today than when she said “I do” four years ago.

From what I figure, if most people get divorced over some huge, new issue that comes up in their lives, CFers have already had that happen in their life. Our big crap (aside from the transplant years) has already happened to us – it’s out there in the open. What would be the point over a divorce because you get cancer after going through all of the CF stuff already? Marriage is already a certain level of sign-off that the other person is ready to handle your crap – it’s just that so many people aren’t prepared for “the big things” like a couple entering it with CF as a third wheel that often likes to take control of things.

So, let’s hear it. Cysters, fibros, and parents of CFers… what are your thoughts on the matter about CFers and their marriage success or failure rate?


  1. Sean Edwards says

    I guess im gonna be the first to comment. I am divorced, been 3 years now. There was things that happened but I feel the underlying reason was she was affraid of me dying and leaving her stranded. Its a sad thought but she had read up on the life expectancy. I have dated a bit since but have still not entered into a relationship. I find after I describe everything im going thru with cf and being on the transplant list that is scares alot of women off, one response I got from one girl was “you scare me” So I still have not found that “strong” women yet. Like you said cf affects every part of our life…not just health wise. Im happy to see you found yourself a strong women to stick with you!

    • That is sad, Sean. I didn’t know, but I knew there had to be someone out there with that scenario. You’ll find her. I imagine it’ll be easier after transplant, eh? Hard to think about all of that with so many unknowns RIGHT in front of you. This also reminded me about a huge part of our lunch discussion that didn’t make it into the post, so check back later if you want. I’m always here to talk.

  2. I am glad that Sean spoke up….I have been married and divorced 3 times….underlying reason afraid of me dying, the issue of no biological children or the fear of them being born with cf…life expectancy…there were a number of other issues…all directly related to cf..even $$$..but a little hurtful to get into. I take comfort in knowing that my parents just celebrated their 45th anniversary. I believe that you are very blessed with a special angel.

    • Oh, crap! I almost feel like this is an “open mouth, insert foot” moment now, but it’s good to get this out there. I can’t be the only one seeing my view and you guys aren’t alone in your view. This is good.

      If I may – and this is totally optional – what sort of pre-marital discussions did you have about children before tying the knot or did they just change after the wedding when it became a missing part of your lives? I can definitely see that happening, as children (and how they come about) are a huge part of CFer relationships.

      • It actually feels very strange to discuss this… I don’t normally go there. The issue of children was mentioned in each situation but at the time…it did not seem that important (we believed our love would endure) ..we thought of adopting..but they were afraid I would not be alive long enough to help raise them…as time went on their was something missing…It may be strange but all three are remarried and now have beautiful children…even though it brings a lot of pain to me writing this I am actually happy for them. But it still does really hurt…

        • Hey, thanks, Ken. I’m sure that is bound to help someone in the same or future situation. I’ve heard you’re the nicest of guys around. If you ever want to go get a drink or hang out at Panera some day, hit me up – for reals. We don’t have an uber busy social life, so I can hit the road pretty much any day for a while.

  3. Wow, Sean & Ken! I can’t begin to comprehend the sense of betrayal you must feel after you put that much trust into a relationship and then they broke their vows. I don’t know if I could ever get over that.

    Perhaps that’s why God blessed me with such a rock solid wife. If I went through what you guys have experienced, I might just shut down & stop breathing. But you guys are trucking on. God bless ya! And thanks for being transparent.

    When Jesse was younger, I worked a 12 hour shift – roughly 4 days on & 4 days off. Jesse’s Dr. was convinced that our marriage would not last. Practically every set of CF parents he came across wound up divorced and he was sure that CF and my work schedule would do us in.

    I think most of us don’t take marriage and the vows seriously enough. We don’t always count the cost ahead of time and when unpleasant surprises come (often things that would not have surprised us if we’d been honest with ourselves & each other before tying the knot) we start to consider those vows as more like those “we’ll see” statements we used to get from our parents as kids.

    As Jesse grew older I wondered if he’d ever find a mate. Who’s going to fall in love with a guy that coughs all day and has gas that could knock a buzzard off a manure wagon? Marrying a CFer is a tall order

    Once two people do fall in love, there is this tendency in people in love to ignore the 600 lb gorilla in the corner and figure it will leave us alone. But it won’t, so it’s better to face it at the start and decide realistically if you can live with it in the room, because it’s not going away.

    When Jesse first told us about Kristin, I was frankly blown away. I thought, “Does she have ANY idea what she’s getting into?” But I think their long dating situation and the extensive counseling from some VERY godly men helped to ensure that they both took a good look at that gorilla and they had time to figure out how they could live with it.

    Next to salvation itself, I’d have to say that Kristin has to be the greatest blessing Jesse’s ever had. I know he already realizes that, but I’ve just gotta say it. In fact, her constancy is as much as blessing to Mildred & me as it is to Jesse.

    Sorry this got long, but I tend to “wax eloquent” when it comes to marriage. ๐Ÿ˜‰

  4. Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be gory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

  5. This is a great post, Jesse. I’ve definitely thought about it on behalf of Bennett. Brian and I have wondered, if we can’t get him off the feeding tube, what’s it going to be like at 15 when he wants to take a girl out to dinner and then he returns home to “hook up to the feeding pump.” But, my hope is that this situation will resolve itself in some way as he gets older. It is very very encouraging to see a good number of CFers in the community who are married. As far as keeping the marriage, I think that CF or not, it’s extremely hard. My hope would be that whomever my boys marry, many many issues and expectations would be worked out before they say their vows…and I am a *huge* advocate of counseling to continue working through issues and expectations. But this is for any marriage, not just a CF one. No matter what,

    • Marriage IS hard work. Expectations is a huge area that we were still somewhat unprepared for despite dating for 4 years and having pretty extensive counseling. I even saw a personal counselor for the better part of 6 or 9 months to get myself better at the instruction of our pastor before he would agree to marry us after our couple counseling. I needed it and am very glad we did it even though it was a humongous financial stretch for me to pay that much with what I made at the time.

      We really enjoy going to marriage seminars when they come around, just for the tips and for an occasional tune-up. One of our elders is a well-published marriage counselor, but this weekend we are attending the Art of Marriage seminar on Friday and Saturday. Really looking forward to it.

      Interestingly, it’s been her allergies that have been the big unknown, “for better, for worse” situation in our lives. I’d have to be mentally retarded to leave a woman as awesome as she is just because of health issues, no matter how severe they could ever be. Our pre-marriage counselors are long, long time friends and taught us that the “D” word does not exist in our vocabulary. I suppose it’s a noun in the past tense because of other people, but definitely not as a verb between us! Dave Ramsey says “divorce isn’t an option, but murder is.” I chuckle at that one.

  6. Lauramagsamen says

    This is a great topic and really makes one think, that’s for sure. I have to say that when Jordan was first diagnosed, I cried the most about not knowing whether one day she would have the promise of marriage and especially of becoming a mother, as these are two of my greatest joys. As she is now a teenager and I see the friends/boys that come into her life, I still wonder, but can see her strength in living with CF every day. I can only hope that one day she will find someone that is supportive and caring. I certainly do think that it will take someone very special and strong to jump in with both feet, and marry a CF’er, no matter how great her parents think she is. LOL! Jordan, like any girl, has dreams of getting married and having children and hopefully they will come to fruition. Marriage is hard work, with or without CF. But that little addition surely does add strain with so many unknowns, and most certainly the financial aspects, as you’ve discussed. Eric and I just celebrated our 17th wedding anniversary on Saturday and started dating almost 25 years ago. My parents will celebrate their 45th wedding anniversary in July. I can only hope that we are leading her by example and that she and whomever may come into her life understand that marriage vows are the most serious vows and are not meant to be broken, even through the worst of times.

    • Congrats on your long and happy marriage!! Read the story about Jamie Peery Warren on her site to see a man who stuck by his woman to the very very very (near) end. That was the post and video that made me become completely compliant.

  7. I am happily married, and hope to never have to go through a divorce. My husband is Amazing, i think it takes a very special man to deal with CF. I am so happy i found him. We have been through a lot with my Cf when we were dating. I know the whole dying thing weighed heavy on his mind for along time. But he wasn’t willing to let days go by without me, even if it God would take me sooner rather than later. We had a daughter in June of 2009, my health has struggled since having her. but he is always there for me. After we married in Oct. 2009 we found out i had thyroid cancer, it was devastating!! At that point i really thank Cf for being in my life, the cancer was tough but nothing i couldn’t handle. Sometimes nothing really surprises me. I am so blessed to have such an amazing man in my life!

  8. Ha! So Beautiful thinks there is something wrong with women like us? Really? ๐Ÿ™‚

    We have a joke in my family that all the women say: “We don’t believe in divorce. We have family to help bury the body so they cops won’t find it.” My CFer hubby knew this the day we got together and we still laugh at it today.

    Yes, there will be ups and downs but I have realized that if we can overcome his CF, we can overcome anything together. I am in love with his soul – not his body (although I don’t mind his body one bit *wink*). No matter what happens, he has a beautiful soul and I could never imagine being without him.

    Did I marry him because he was sick? No. I married him because he was the only man that ever cared about what I wanted in life and wanted me to be happy no matter what. He makes me happy so as long as we are together, he is doing his job. ๐Ÿ™‚

    • That was great, Shannon! Your comment about bodies reminds me of one of my favorite quotes. It’s from C.S. Lewis. “You don’t have a soul. You are a soul. You have a body.”

  9. ChronicMomSays... says

    I learned a lot from this post and from these comments. Thanks everyone!

  10. Mmurray0702 says

    Thank you so much for writing this post. I think there is a lot of truth in this post!! I have been very blessed in regard to marriage. I have a WONDERFUL husband who pushes me to triumph over this disease every day! I think that it takes a very unique and special man to marry a woman with CF. I specifically pushed him away when we first started dating because I knew all of the problems CF carries with it. He, however, pushed FORWARD in every regard. He has taken CF by the horns, so to speak, and although it is active in every decision we make, he handles it all in stride. In fact, he is the one who has pushed me to take an active role in my CF and increase treatments, exercise, and maintain a healthy, but high-calorie diet. He wants me to be around for as long as possible and he consistently reminds me of what I need to be doing to stay healthy and focus on our goal (a long and happy life together). It must be hard for him to be the sole bread-winner and still be positive and encouraging, but he doesn’t miss a beat. As I said, I’m so blessed. Thank you for making me think about this ๐Ÿ™‚

    • That’s fantastic! Sounds like we have very similar marriages with the
      exception of the CF and the encourager being flipped now that I’m the sole
      breadwinner. It is a lot of pressure, so I encourage you to cheer him on as
      he cheers you on to take good care of yourself. Keep up the good work!

  11. Boy do I have a story for you~ I’ve battled Atypical CF & Bronchiectasis since 19 yrs of age. It got worse as I aged. 39 now and the stress from chronic illness wreaked havoc in our marriage. I divorced my husband in December of 2009, we got back together in February of 2011. We tried for 14 years to have a baby. They said I couldn’t get pregnant. I never realized that dating someone for 5 months, I’d get pregnant, he walked and my husband and I got back together and he is adopting my daughter. Crazy huh? Our relationship is stronger now than ever and I went through terrible complications after the birth of my daughter last August. I’m so thankful for him, Hannah changed my perspective. I stopped being selfish and now I sacrifice everyday willingly. Thank God she does not have CF!

    • Wow, that’s a crazy story!

      • I have been with my CF hubby for 13 yrs and he told me he wants a divorce. Im crushed after everything weve been through. I love him more than anything in the world but he cheated and wants to be with other people. he is 39 with CF. He is my world I would die for him. I thougght wed make it but he doesn’t love me anymore his brother is dying and I don’t know if it is the fear of that. He too has CF but I vowed to be by his side no matter what I was scared but this is the life I chose but he wants to be free.

  12. Boy do I have a story for you~ I’ve battled Atypical CF & Bronchiectasis since 19 yrs of age. It got worse as I aged. 39 now and the stress from chronic illness wreaked havoc in our marriage. I divorced my husband in December of 2009, we got back together in February of 2010. We tried for 14 years to have a baby. They said I couldn’t get pregnant. I never realized that dating someone for 5 months, I’d get pregnant, he walked and my husband and I got back together and he is adopting my daughter. Crazy huh? Our relationship is stronger now than ever and I went through terrible complications after the birth of my daughter last August. I’m so thankful for him, Hannah changed my perspective. I stopped being selfish and now I sacrifice everyday willingly. Thank God she does not have CF!

    Sorry I meant to say “we got back together in February 2010”