We need to understand better how infertile men feel

Sunday’s DCN conference in London was a triumph.  The panel of parents and one donor conceived adult talking about what their donor means to them were honest, reflective, warm and funny (yes, there was lots of laughter), the small groups worked, the conversations were lively and intense, the kids had fun in the creche or the children’s workshops, books were bought and borrowed, the coffee was good…but there were tears as well.  From panel members as they spoke of their gratitude to their donor but also in small groups as people struggled with mixed feelings about whether donor conception was right for them, if and how to share information with children and others and, perhaps more sadly when  reminded by someone else’s pain and plight, of scars remaining from their own or their partner’s infertility. I am enormously lucky to be married to a man who has no shame or sense of stigma or inferiority about his infertility.  I would not dream of using it against him in any way but neither do I feel I have to walk on egg-shells around subjects to do with who our children look like for instance.  I know a few other men like this but I think they are exceptions.  On Sunday I found myself in a group with women (without their partners) who praised their men as exceptional fathers but who were aware of taboo subjects that had to be avoided or negotiated carefully and a layer of pain that had not been excised by parenthood.  Two of these men were occasionally able to talk about how they felt.  Others could not. As Amy Schofield says in her compassionate chapter ‘It takes a second to be a father but a lifetime to be a daddy: Men’s experiences of infertility and donor conception’ in Donor Conception for Life (Karnac 2015) the literature about infertility and donor conception is heavily biased towards women.  “Men’s feelings about being told they are infertile or about choosing to engage in assisted reproductive technologies, such as the donor insemination of their partners, are less well understood or publicly discussed.” There was a strong feeling in our group, put forward initially and interestingly by the men who were dads by egg donation (so not infertile) that infertility is much more of a big deal for men than it is for women.  These men clearly would not have liked to be the one who had the problem, but they perceived that their women had managed egg donation without feeling bad about themselves because they had been able to carry the baby and contribute to it’s well-being this way.  We talked about the concept of ‘the infertile couple’ and all signed up to that, but when push comes to shove the partner who has the problem bears the greatest burden and the gender that has the greatest difficulty with this is men.  Schofield argues that “in social discourse, impregnation is portrayed as a demonstration of virility, and fatherhood can appear to be reduced merely to passing on one’s genes”.  The men in our group certainly felt that the confusion between infertility and sexual impotency remains alive and well in modern British society. What can be done to better support men both before and after becoming parents by donor conception?  The eight men interviewed by Schofield all felt that it would be helpful if male infertility were discussed more in the media so that positive images of ordinary blokes who happened to be infertile could show just how ordinary and normal they are.  Several of the men experienced pre-treatment counselling as a kind of examination to get through rather than an opportunity to share feelings and anxieties.  By contrast three of the men spoke very positively of the value of more open-ended therapy and of talking to counsellors who were neutral and not involved in the tangled emotions of family relationships.   All of the men felt marginalised by procedures at clinics where only the woman was registered and acknowledged. Schofield recommends that counselling be offered away from clinic sites and that it’s purpose as offering a space for feelings to be expressed rather than a hurdle to be jumped over, be made much clearer.   The men she interviewed also very much supported the idea of psychological therapies being made available at different points along the way to parenthood and afterwards as well.   As Sam, one of the men said, “It’s not over by a long shot. It never will be over for me or for Yasmin (his partner) or for our kids, but it’s just a different route”.  Many of the men in the research praised DC Network as being a place where feelings could be discussed.  One of the men in my group had taken part in a Preparation for Donor Conception Parenthood workshop run by DCN and reckoned that right at the beginning he could spot by their body language the infertile men as opposed to those who were partners of women needing egg donation.  However, by the end of the weekend the lowered heads, the chairs pushed back out of the group and the gruff contributions had changed enormously, indicating a real shift in confidence and positive thinking.  As a former facilitator of these workshops I recognise this change as beginning to occur following the session in which men and women are separated and given the opportunity to talk privately with others who share their situation.  Men are so rarely in a situation where it is OK to talk frankly about how they feel…and are really listened to.  DCN understands this and always offers ‘Men Only’ groups at national conferences and at workshops. I think one of the problems, and this may be as much for women as it is for men, is the expectation that once you become a parent all the pain and anguish of infertility and the treatment roller coaster should be over.  This is clearly not true and has never been true for large numbers of people, particularly men.  In most cases it doesn’t prevent people from being good parents – they are so grateful and thrilled to have children at last – but it does leave scars which are more or less prominent and occasionally become open wounds when issues, such as likenesses in the family, are talked about.  How much better it would be for it to be generally recognised that having some left over feelings from infertility is the normal and ordinary situation and that people like Walter are not the ‘gold standard’ but are actually unusual, if rather lucky.  And as the men in Amy Schofield’s research said, let’s talk about it.

Advertisements

About oliviasview

Co-founder and now Practice Consultant at Donor Conception Network. Mother to two donor conceived adults and a son conceived without help in my first marriage.
This entry was posted in Uncategorized and tagged , , , , , , , , , , , . Bookmark the permalink.

24 Responses to We need to understand better how infertile men feel

  1. Another excellent post and I’m so pleased you had a good conference; a reminder that independent counselling with specialist counsellors is always easy to find via the ‘find a counsellor’ button on the BICA website http://www.bica.net The British Infertility Counselling Association provide a list of counsellors who can work with couples and individual parents before, during and also after assisted conception.
    Tracey

  2. Sarah says:

    I was so sad that I couldn’t make the conference this year, but busy family life got in the way.

    I have one of those exceptions in my husband, whilst in the past when we began our journey he did struggle with his infertility, now he has no such issues.

    He has been involved with a couple of articles in the media, my favourite being in 2010 for Marie Claire, which was an article all about him. He does believe that male infertility is not given the coverage it should be and that men do not like to talk about it, its the stuff to laugh off over a pint down the pub, but never admit to.

    We had counselling together both through the clinic and via our GP. It was the best thing we did. The one through our GP made us focus on us as a couple and individuals before we even looked at our infertility. For us it was a marriage saver, I honestly am not sure we would have got through without it. It certainly focused us and made us talk more, something which is vital in order to come to terms with infertility.

    Today, we have 8yr old twins, who know all about our donor. It is something that is part of us as a family, and is often spoken about. Everything from who they get their eye colour from, to what his interest are, no subject is off limits.

    Infertility does leave a scar, and even all these years on, we can be taken back to those dark days when hearing of others pain. However, we have moved on, we now have our family, but that family would not be possible without our donor. Our donor is part of our life, after all he is part of our children.

    • oliviasview says:

      Thank you so much Sarah for your very positive comments about how counselling helped you and your husband communicate better in order to face infertility and it’s consequences together.

  3. Petra Thorn says:

    Hi Olivia,
    how important a subject! There are so many men who feel ignored during the medical process and who tend to withdraw as they cannot DO anything to alleviate the burden from their female partner. In addition, male infertility, at least here in Germany, still is more highly stigmatised than female infertility. Thus it may come quite “naturally” for men to feel more vulnerable.
    I would like to draw your attention and everybody else’s who is reading this to two books: One is written by an Australian man, David Rawling, together with Karen Looi (who worked as an infertility counsellor in Australia for many years). It is called “Swimming upstreams”. The other one is written by myself and available in German only. Interestingly, when my book came out, there was some criticism that a woman writes a book on male infertility. But “my” book is based on the story of over 10 men and I in a sense only acted as somebody who put their experiences into the shape of a book and added some of my experience as a counsellor. (Petra Thorn: Männliche Unfruchtbarkeit). It think we need more books like this to help men normalize their experiences!

  4. oliviasview says:

    Thanks Petra, particularly for reminding me about Swimming Upstream, which is indeed a very good book. I assume your book is only available in German…more’s the pity.

  5. gsmwc02 says:

    Olivia,

    Thank you so much for writing about a topic that is near and dear to my heart.

    This piece is dead on in so many areas that go under the radar. I think regardless of whether couples with infertile men on to third party reproduction, adoption, infertility treatments or live childless it’s important that they receive proper counseling to help cope with the wounds of infertility.

    Like with your husband I didn’t have feelings of not feeling like I was a “real man” when I received my diagnosis or in the two plus years since my diagnosis. But I did and still do have feelings of indaquecy and feeling like the reason I’m likely not able to have children is because I am too weak and a bad person. That I wasn’t meant to pass anything onto the next generation and there was a reason for that. For me it’s brought up many of the issues I had growing up with a learning disability. It’s tapped into many of those self esteem issues. All of this has led to me currently working through a deep depression as my wife and I figure out how we will move forward. Two years ago I spent seven months in therapy and two months ago I got back into therapy as I reinvestigate treatments and a second opinion of my infertility.

    I recognize I am in the minority of infertile men who are comfortable being vocal publicly about infertility. I don’t expect every infertile man out there to be as vocal or seek the therapy that they may need. My hope is though by speaking out other men won’t feel alone and won’t be afraid to seek out the help they may need.

    The best thing that can be done for infertile men is that they are supported by their wives and aren’t pushed into things they aren’t comfortable with. Friends and family should be supportive not shame them. I put the below piece together a little over a year ago for wives with infertile husbands that I hope can be helpful for couples out there with infertile husbands.

    https://afewpiecemissingfromnormalcy.wordpress.com/2013/12/15/tips-for-wives-with-infertile-husbands/

    Thanks again Olivia.

  6. oliviasview says:

    Greg, I was very moved by your response to my blog and your tips for wives with infertile husbands. I do hope your new round of counselling helps take you to a better place.
    Communication between partners really is the key but I know that many men find this hard generally and virtually impossible when they are feeling low. I will pass your blog post on to DC Network so that it can be linked on the web site.

  7. marilynn says:

    The thought of dying and ceasing to exist is terrifying and while we may do our best to leave a lasting impression with out interactions with others during our lifetime the only way to ensure the continued existence of our own bodies is to reproduce and live on in the body of our descendant generations. While not all humans express their fear of death and non existence the vast majority of human beings do have a primal urge to reproduce and continue living — to learn that we are infertile and incapable of survival a death sentence for the essence of our being and that is a very private and individual thing that cannot be felt by anyone else no matter how much love they have for us. A spouse will be impacted by their spouses cancer or heart disease out of love and pure compassion but a spouses care about their spouses infertility not so much out of love and compassion as fear that they too will die fully and completely and won’t live on because they have chosen sexual exclusivity with a partner that cannot give them immortality by reproducing with them. I think on a very deep level this is what’s going on. It’s not bad enough to be told essentially that you will not live on past the death of the body you wore this time around but then there is this burden that your partner should not have to face that death of their soul just because you have to. The healthy spouse knows that logically they don’t have to accept the death sentence but their sense of loyalty compels them to remain committed to the partner they love and I think that both start bargaining and making concessions but its really more about life and death than it is about the medical problem of infertility.

    It is very interesting that the person with the medical problem finds themselves in a doctors office with a physician who is not treating their body to correct their infertility at all while the physician is rendering services to their perfectly healthy spouse and billing that somehow as medical treatment. Physicians in this line of work don’t so much treat infertility through medical or surgical intervention as they are more like intermediaries arranging for perfectly healthy people to reproduce. The fact that the person who has the medical condition feels marginalized in their own doctor’s office is soboring.

    • Mac says:

      Not sure that is my experience of infertility or my husbands. I stay with my husband because I love him no matter what, not because I feel a duty to be loyal. Passing on your genes to the next generation is not so important. Howver, family life is important.

      Society needs to move on from life and death primitive thinking. Yes it is there, I don’t disagree with that but it creates a stigma where no one feels comfortable to speak up. It says you are less of a person because you haven’t reproduced and please don’t bother me with this trivia. That is not true but it’s how infertile couples are made to feel.

      I am certainly not in awe of the generations that gave me life. I am grateful to the generations above me that showed me love.

      Life and death is only at the surface. It’s the bits inbetween that couple -both women and men – need support with.

      • marilynn says:

        I was not at all meaning to say that it is helpful to feel like that or that we as elevated beings can’t choose to feel some other way, but rather I really feel (having experienced this first hand) that you feel as if your dying forever. Death itself is bad enough but it was very heavy my husband I felt like i did not want to hold him back. Quite complex

      • marilynn says:

        And you are so right in everything you said. I was just really thinking more about what drives the desperation and anguish. It is not love and yearning for a person who has never existed could it be? I hear so many people write about mourning the child they never had and really that level of anguish is not reasonable for someone who never existed. Imagine anguishing as if a loss over the spouse you never met. No I really think the anguish is over the perceived eminent death of their own body and life force their own spirt. They won’t get to nurture the body that will carry on their life into the next generation. They are grieving loss of a real human life and I think maybe its their own life it would explain the masive sense of grief. It is different than not getting what you want under other circumstances. I’ve been contemplating that. Why it is different.

        • gsmwc02 says:

          For me what I am grieving and a deep depression is the loss of the ability to do something that is supposed to come as natural to humans as walking and breathing. It’s a feeling of inadequacy.

    • oliviasview says:

      Very insightful Marilynn. Thank you.

    • gsmwc02 says:

      Wow, Marilynn I have to say I’m impressed by this post.

      The one point I have to disagree with you on is the impact on a spouse. At least for me (I know that I am just one example) for my wife the most important loss is the one of who I was and the person I’ve turned into due to the deep depression that has resulted from my infertility. Her desire for children isn’t as great as mine. She would be ok if it was just the two of us forever. So not every fertile spouse of an infertile couple feels as you described. For some people the spouse and being with them is more important than having children.

      • marilynn says:

        Greg and I hope I did temper my statement by saying certainly not everyone has the urge to reproduce so strongly and not every marriage would have that dynamic. But there is something far deeper and more traumatic going on with a person who is told they can’t have kids…the anguish can’t just be about not getting to have a baby the object or the experience of raising a child. I really believe that on some primal level the urge to reproduce is not about propogating the species (individuals are too selfish to care about the species) I think each individual is progammed with the goal of survival both protecting the current body we have and secondarily finding a body that we can live on within hopefully for many generations. The only way to do that is to reproduce. The other more abstract way to do it is to do something so memorable artistically, socially, politically, that has an impact on the lives of people born long after you die. Both are very valid ways to leave your mark on the world but still the life of the body itself our own body – that is a matter of survival. Most people would like to both survive and also do something memorable. When I think about it that was as a matter of self preservation the despiration is not so spoiled they wanted to live on preferably in a body shared by the life force of the person they love. They are also trying to leave behind their love with that other person and have it out live them both.

    • Very insightful Marilynn. I think there is much truth to this. My social/legal/non-biological father was infertile because of scarlet fever (when he was a young boy). Back in 1980’s he developed terminal cancer. As he was being brought home from the hospital, to die at home, I greeted him on his way from the ambulance into the house, with big smiles and a welcome home daddy – thinking that I was helping him – but instead of the positive reinforcement/support that I intended, he became hysterical, shouting “I hate her” over and over again. When my aunt asked him why he was saying this, he responded “because she has life and I don’t”. I was supposed to cure his infertility but instead, I fear I only made things worse. I found out shortly after he died that he was not my biological father. It all made sense then. God love him.

  8. oliviasview says:

    How awful for you ‘whose daughter’. And what pain, physical and mental, your dad must have been in. If only there had been the resources then for him to be able to talk about his infertility without fearing he would be judged for it.

    • Yes, thank you Olivia, he was in pain. My biological father had a similar response to me. He was in pain as well. I have enormous guilt over both of my father’s pain. I feel very very responsible. The guilt is so hard.

  9. oliviasview says:

    I hear what you say but am so sad you feel so guilty. In my opinion none of it is your fault.

    • No of course it’s not my fault, I did nothing personally to cause this, but the practice that brought me into the world did, so by default, I feel tremendous responsibility for all my father’s, mother as well as the effects of this on my own biological/genetic children. My guilt is because I exist because of this practice – the pain it causes through the gift of life it gives. .I (and those like me conceived via this practice) are called to be stronger than others. Our responsibility is towards others, not ourselves. But that is the exact opposite of the way things are supposed to be. I just have to live with this as do other ‘donor’ conceived – and be grateful.

  10. oliviasview says:

    I could argue with you about this as I know so very many donor conceived adults who don’t feel the same way, but I know your feelings are real and strong so I’m going to respect those and say no more.

    • I don’t know why you’d want or feel the need to argue with me about this. It’s real and strong for many so called ‘donor’ conceived as well as many others conceived in many other ways. I suspect that those other ‘donor’ conceived you think don’t feel the same way might actually agree with me that we are called to be strong and be grateful.

  11. As my mother once said to me when I expressed confusion and pain over this “You just have to deal with it”. She was right, it’s my existential debt. Just deal with it, pre-conception vs. post conception, that’s what I/we all have to do.

    • I’m grateful to have been there for my mother. She lives on in me and my children. That couldn’t have happened without my social/legal and biological father’s participation and sacrifices – which were passed on.

Comments are closed.