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Opinion It's still hard to express the sadness that comes with being unable to have children

In the past, people with cystic fibrosis typically died in childhood. But now that we have longer lifespans we are often faced with a new problem: infertility.

And God blessed Noah and his sons and said to them, “Be fruitful and multiply, and fill the earth.

– Genesis 9:1

LAST NOVEMBER I reached the age of 40. There’s a celebratory aspect in reaching that landmark because at the age of 12 I almost died after vomiting copious amounts of blood. The diagnosis revealed I had unexplained cirrhosis of the liver. Two traumatic liver transplants saved my life in 1995 but 15 years later, inexplicably, the source of all my many medical problems was revealed: I had been born with cystic fibrosis (CF).

But the millstone around my neck was soon to be exacerbated by a cystic fibrosis fact I was unaware of. About 98% of men with CF are infertile because the vas deferens, the tube that carries sperm from the testis to the penis, does not develop properly.

In the past, people with cystic fibrosis typically died in childhood, but modern medicine has allowed men and women with cystic fibrosis to live well past puberty. Therefore, longer lifespans have produced new issues surrounding fertility. And in my experience it’s an issue that is very rarely discussed. I was told the news quite bluntly with a total lack of compassion. When I asked if it was possible to adopt again the word ‘No’ was uttered in an almost callous way.

There will always be a huge void in my life

There are new fertility treatments to help but they are often ineffective and the costs are prohibitive. Besides that, for diseases such as cystic fibrosis – caused by a pair of recessive genes – afflicted fathers who have children by this method unavoidably pass along one of these genes to their children.

When the children are ready to have children of their own, they will have to be concerned about whether their partners are also carriers and what that means for their children’s health.

I am blessed to have a sister who has four gorgeous girls whom I adore, and that has filled an emptiness. But there will always be a huge void in my life and it makes trying to start a relationship extraordinarily difficult. Going out with someone with my health problems already involves a lot of baggage, and I worry that the ultimate deal-breaker in finding a partner is the fact I can’t give them children.

I’ve always had a strong affinity with children and was always able to enjoy great relations with my very younger cousins. I once applied to be a primary school teacher to have a job working with children. The notion of continuing a genetic line has strong emotional connections for many men, particularly those who are only sons. Infertility can mean not only the inability to pass along the family name but also the family genes. I find myself looking at couples carrying kids around shops and towns in buggies not with jealousy, but with an intense regret that I will never experience that joy.

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Trevor with his sister and nieces. 

It’s hard to talk about this issue

Research suggests that men and women differ in their psychological responses to infertility. Samaira Malik, from the Institute of Work, Health and Organisations at the University of Nottingham, UK, said that “men are in fact equally affected by the unfulfilled desire for a child but are less open about their feelings.” Despite the fact that approximately 30% of infertility is attributed to male factors, in many cases it appears that men are not as willing or as able as their female partners to talk about their experience.

That is why I have never talked about this issue to anyone outside my family or a close CF friend, so it’s a huge step to put these feelings in print. Men may consider it an assault on their masculinity if they are the cause for the failure to conceive. But there are many reasons men experience infertility so many more men must suffer the heartbreak. Thankfully, today, depression as a ‘stigma’ is slowly being eliminated and I feel the issue of infertility needs to be highlighted just as voraciously.

There are certain aspects of life we all feel the right to experience. One of the biggest rites of passage is one day becoming a parent. Having that expunged from your life can confer many psychological problems. The diagnosis of infertility causes many males to question their masculinity. Research shows infertile men are likely to be depressive and anxious, and have lower masculinity scores and self-esteem. Often, males do not show stress in an attempt to be the emotional stability within the relationship. Men cannot suppress such feelings for long periods of time without repercussions.

Time is a great healer

Male factor infertility is proposed to have such a social stigma that it produces stress, and a culture of secrecy. In some cultures where masculinity or machismo is very important it is common to find the female partner taking public responsibility for the infertility as a way of protecting the man from the perceived shame of being the cause.

Time is a great healer and as I spend an abundant amount of time with my nieces, spoil them rotten, and even got them to appreciate my idol Elvis Presley, the sadness lessens. But it’s still hard to elucidate the sadness. To those who understand childlessness an explanation is not needed, and to those who don’t understand it an explanation is not possible.

But I think Laura Bush ex wife of former President George W Bush explained it immensely articulately:

The English language lacks the words to mourn an absence. For the loss of a parent, grandparent, spouse, child or friend, we have all manner of words and phrases, some helpful some not. Still we are conditioned to say something, even if it is only “I’m sorry for your loss.” But for an absence, for someone who was never there at all, we are wordless to capture that particular emptiness. For those who deeply want children and are denied them, those missing babies hover like silent ephemeral shadows over their lives. Who can describe the feel of a tiny hand that is never held?― Laura Bush, Spoken from the Heart

Trevor O’Sullivan has a degree in journalism from DCU, and tweets at @elvisrockysly.

Opinion: Infertility can be utterly devastating for a man – don’t allow him to suffer in silence

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