Most clinical manifestations of cystic fibrosis (CF) are in the lungs, pancreas, gastrointestinal tract, and sometimes the sinuses, kidneys, and liver. Unsurprisingly, these concerns attract most of the attention. And CF’s main clinical manifestations should warrant most of the focus.
But it’s crucial that we don’t forget the “less serious” parts of living with CF. These concerns range from insecurities that stem from weight issues to the anxiety of dealing with the constant burden of treatments, to the numerous scars from gastrointestinal surgeries and clubbed fingers. We rarely discuss the topics of infertility and the prospect of raising children.
Almost all (up to 98 percent) of men with CF are infertile — not sterile, a crucial difference — either due to the congenital bilateral absence of, or blockage in, the vas deferens (the tube that connects the testes to the ducts). It’s still possible for men to have biological children through assistive reproductive technology. We learn about this presumption of infertility in men at an early age, either through our clinic or our own research into the disease. In addition to being inaccessible through the usual means, the sperm of men with CF can have other issues, such as poor motility or an abnormal shape.
I remember researching CF at age 11 or 12, back when Google wasn’t as ubiquitous as it is now, and discovering two facts about CF that shattered my world: shortened life expectancy and infertility. I wasn’t old enough to be aware of assistive reproductive technology, so I assumed I wouldn’t be able to have children biologically in the future. Later, I learned about in vitro fertilization, but thought it was a subject that I could push off forever.
Then, about a month ago, I had some life-altering news. I had an appointment with a urologist for an unrelated reason, and after a routine examination, was informed that I have vas deferens. While they could be blocked or have another issue that may still warrant assistive reproductive technology, the news was a shock. I left that appointment feeling like a new man.
I’ve spent some time writing about the complicated phenomenon of masculinity, but as a cisgender straight man, I don’t feel it is my place to speculate too deeply on the subject. Part of our cultural expectations are that straight men grow up, get married, and father children. Boys tend to assume that they will have the ability to procreate. They are not told that they may not be able to father children, and I’m unsure if that possibility is presented to girls either. But both the ability to father and mother children are prototypical qualities of manhood and womanhood in the U.S. That these issues are not adequately discussed in high school is probably representative of the broader topic of our poor standards of sexual education. I think that we, in the CF community, should explore the question: What are the long-term effects on boys and girls when they learn that they may be unable to have children, biologically or otherwise?
I consciously make an effort to combat toxic masculinity imposed on men by society. And yet, when I found out that it is within the realm of possibility that I may one day be able to father a child biologically with zero assistance, I felt different. Like I was a man in the traditional sense, and that I didn’t have to be defined by my CF or the limitations it has imposed on me so far.
While I thought that I’d overcome these feelings years ago, here they were back at the forefront of my mind again. It’s important for men and women to have these conversations because the desire to have children is in our nature as humans. We often hear how being a parent is the most fulfilling thing that we can accomplish. So when pre-teenage kids learn that they may never be a parent or live long enough even to ponder that decision, how does that affect them? The answer to this question could have potential ramifications for how we talk to kids with CF, how we empower them in their journey with CF, and how we discuss their long-term future with them. These topics are something we should explore on a deep level.
I wish that I could say that I’ve “beaten” toxic masculinity or overcome the need to adhere to traditional standards and expectations. I’m not sure that we can ever conquer those deeply embedded socializations in our brain, but this experience has served as a reminder to me to make an effort to keep growing.
Follow along with my other writings on my humbly named site, www.trelarosa.com.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.