CF Infertility: A Masculine Perspective
By Ryan Mincer
Why are men so reluctant to discuss infertility? It is rarely discussed in public by either women OR men because society has deemed it to be inappropriate, a faux pau! When you couple this with Hollywood’s vision of “the perfect masculinity” – men can feel unnecessarily shamed and silenced on a topic that needs to be discussed. Fertility is a physical aspect of humanity that has an intriguing connection to emotions and long-term family demographics. As someone who has CF-related infertility, my hope in the discussion below is to get people talking about this taboo subject.
During the human body’s development, male CFers develop normal testes/testicles, and they produce normal sperm, but the tubes that transport the sperm don’t form completely, thereby creating an obstruction with no detour. Even still, CF patients are often able to have relatively normal/healthy sex lives – but they are just unable to reproduce biologically. It’s effectively a natural form of birth control! CF infertility, AKA Congenital Absence of the Vas Deferens (CAVD) occurs in around 98% of male patients. If you’re reading this for the first time and you know a guy with Cystic Fibrosis, please do not go up to them and say “hey, I had no idea you were infertile!” This is a delicate topic; if you’re not sure how to address it with a male CFer in your life, but you feel like it’s important that you do so, I would recommend reaching out to a psychologist or counselor for guidance. Being infertile and not being able to have kids means that you are likely to experience some of the following: judgmental opinions from family and/or friends, fear of missing out, guilt for feeling defective, and feelings of emasculation/inadequacy/failure/sadness. There are, however, alternatives to consider with CF infertility like In Vitro Fertilization (IVF) or Adoption/Fostering, which you should absolutely discuss with Compass (at the CF Foundation) and your CF Clinic, if interested.
Society has placed on men the false idea that to be “perfectly masculine,” you must never show emotion under any circumstances, always be in control, never be afraid, express physical prowess, and be sexually desirable/virile.
Let’s be honest, if we gathered 100 random guys into a room, how many of them would fit into all of these categories at the same time? Probably none of them. But society says that we have to be all of these things at all times to be “successful males.” To be “infertile” has been interpreted by many men to be a sign that they have “failed as men” because the ability to father children has become a societal symbol of masculinity. When CF men begin to feel like “failures,” who are we supposed to talk about that? Afterall, society also tells us we are not supposed to have emotions! Going to a counselor, psychologist, or psychiatrist is completely out of the question because to “get help” means that we are “not in control.” Hopefully you see at this point where I’m going with this; infertile males have been metaphorically quarantined. Let me clarify that I am not advocating for a victimized mentality of defeat (by no means!), but rather a healthy mental framework through which we can view our present weakness. Having experienced all of these emotions and challenges personally, I firmly believe the sentiment that when we are weak, it is in those moments that we are strongest.
When I found out that I was infertile, I was heartbroken. From a very young age, I had always wanted to have kids. Something deep down in my soul just knew that someday I would really enjoy being a father, a dad, a role-model, a loving parent to my child(ren). I felt like the desire that God had placed in my heart to be a dad had been crushed. Naturally, I discussed the issue of CF infertility with my wife well before we got married – and told her that if it was *possible* for us to have kids with reproductive technology, I definitely wanted kids – and she was in agreement. Fast forward almost 7 years and we still do not have kids, nor have we even started the process of trying to get pregnant, for financial reasons. We live in California where rent and housing prices are often higher than those in the rest of the country. As such, even renting a two- or three-bedroom apartment on a two-income basis is very expensive (making adoption/fostering difficult)! When you couple that with the fact that our health insurance doesn’t cover any reproductive services, it makes it practically impossible to consider alternatives.
Recently, I received access to the drug Trikafta, which has completely and radically transformed both my own life and many others in the CF community. Before Trikafta, having kids by any means was out of the question. It would have amounted to dying prematurely and leaving my wife behind to take care of the, now fatherless, kid(s). And now, two months into Trikafta, I am facing the very real possibility that I may live to a much older age than previously imagined. I now allow myself to hope and dream about the future. But as I turn 34 this year, I feel robbed of time; when once I only considered my immediate future and death, I now allow myself to think about the distant future. This future now includes the remote possibility that my wife and I might consider either adopting/fostering or having kids via IVF at some point. That being said, Trikafta therapeutically corrects the root cause of the disease, but as far as modern medicine knows, it is unable to repair the damage already done to the reproductive system during development. I still hold out hope that one day in the future my wife and I will have the opportunity to have children, but if we don’t, I am learning to let go of that desire in my heart and be content in all circumstances. I choose to trust and believe that no matter how it is accomplished, God will find a way to fill the childless void that still resides in my heart with something good or even better than what I had planned. If Trikafta has shown me anything, it’s that with God, anything is possible.
About the Author: Ryan Mincer is a 33-year-old Cystic Fibrosis patient who lives in Azusa, CA. He is currently being seen at the UCLA Adult CF Clinic in Santa Monica. He is happily married (for 6 years) to his wife Mary. Favorite pastimes include reading, writing, and playing golf. He recently wrote a book on the topic of Faith and Disabilities (from a Christian perspective), and is in the final stages of editing. His Instagram handle is @hanginontograce.