Individuals and couples experiencing difficulties conceiving often go through a wide range of emotional reactions. For some, these can be strong and overwhelming. As many of these emotional reactions are typical for infertility, it is vital to recognise them as normal reactions when conception does not occur spontaneously or when a treatment fails. This information sheet aims to provide an overview of emotional responses to infertility and outline strategies which may be helpful for managing these responses. It has been composed by ACT, the Assisted Conception Task Force, an alliance of expert patient leaders and health professionals from around the world who provide support for those requiring help to conceive.

The Assisted Conception Taskforce is a unique international group of expert patient leaders and physicians from more than 20 countries with special interest and expertise in the difficulties of conceiving. You can visit our website at www.assistedconception.net where further information can be downloaded in a variety of languages.

Infertility is not …

• a minor inconvenience. Many individuals and couples experiencing difficulties in conceiving have inner strength, are resilient and have a good network of friends on whom they can rely for support. They may be able to proceed in their decision-making process for or against medical treatment, adoption or a life without children and may be able to adapt to this new life situation without major difficulties. For some, however, infertility is a major life crisis which takes a lot of emotional energy and is difficult to resolve.
• a female problem. Men and women are affected by infertility in similar proportions. Although discussions about infertility are more seldom amongst men than amongst women, men tend to have similar emotional reactions. In many cases, however, they tend to be less verbal about their feelings.
• publicly discussed. Although the shame, taboo and stigma surrounding infertility has decreased in recent years, it remains a difficult issue to discuss with family members and friends.
• something that can be easily resolved. In many cases, it requires medical diagnosis and treatment in order to overcome infertility and facilitate conception. The emotional reactions can be exacerbated during medical treatment as a result of the high hopes and expectations associated with treatment.

As infertility represents a major life crisis for some, and as conception cannot always be achieved by medical treatment, feelings of helplessness and hopelessness are common emotional reactions. It is normal to wish for a family. Experiencing infertility provokes feelings of being different from the
majority. It also signifies a loss and a void in life: infertility implies a disruption of the normal course of events, of finding a partner and having children. As with all losses, feelings of depression, of anger and of denial are common and expected. As with other major life crises, resolution does not occur overnight. Those who cannot achieve pregnancy, with or without medical assistance, commonly take time to adapt to a life without children.

Although women tend to talk more about having children and related difficulties, the rate of infertility is equally distributed between male and female partners. There are several reasons why having children is more of an issue with women. As it is the woman who carries the child, at least physically they are more connected. In many societies, bringing up children remains the responsibility of women. Even in those countries where both fathers and mothers can enjoy parental leave from work, more women than men tend to take this up. This results in different social situations for women and men: a mother’s life changes more drastically after birth than a father’s. This also results in a different situation for men and women who experience difficulties in conceiving or remaining childless. Women feel they have been denied the “normal course of events” which is something they had anticipated, wished for and planned for; parenthood would be the major change in their lives. As for most men, their social life continues uninterrupted whether there is a child or not. In addition, men and women manage emotions differently. Whereas most women tend to share their feelings openly, including their anxieties and frustrations, men are often less verbal about their emotions. They often experience very similar feelings when confronted with infertility but their need to share is not as strong.

It is not always easy to discuss infertility with family members or friends. It is an intimate issue, intertwined with sexuality and loss, which are both challenging issues. Finding the right words and phrases and finding the right moment can be difficult for those experiencing conception difficulties and may be the reason why infertility is not easily shared with others. At the same time, family members and friends may sense that there are difficulties in conceiving a child. They may also have difficulties knowing how to address the subject, realizing how sensitive and delicate a topic this is. Furthermore, infertility is associated with shame and stigma. The inability to have children was, for many years, associated with deviating from the norm especially in societies which place a high value on children and family.

A common assumption is that couples with reproductive difficulties need only to seek medical assistance in order to conceive. Unfortunately, this is not always the case. In the last two decades, many important discoveries have been made both to diagnose and to treat infertility. Unfortunately, medical treatment is not successful in all cases. In addition, medical treatment can be physically invasive, as well as time-consuming and financially difficult. In almost all cases, the emotional roller coaster of hope and despair is more acute during treatment and can become difficult to manage.

What can I do to alleviate the emotional difficulties?
Neither difficult phases, losses or despair go away if they are ignored. It helps to acknowledge them, and it also helps to share them with family and close friends. To counter the helplessness, it can be important to retain control, for example by gathering information on family building alternatives and planning strategies. At the same time, many find it helpful to not only concentrate on having a child as the sole aim in life. Continuing to pursue a hobby, looking after oneself, and finding new challenges in life can constitute a healthy and constructive balance to the inability to have a family.

What can we do as a couple to strengthen our relationship?
Some couples experience difficulties in their relationship during their infertility experience. Men have less need to discuss infertility and it can be helpful for couples to create time and space for sharing feelings, thoughts and experiences regarding infertility: just as children require a structure and ageappropriate bed-times, infertility requires a structure so that it does not overshadow your entire life. To allocate half an hour every day to discuss infertility allows the female partner to share her feelings while the male partner can be certain that there is an ‘expiry date’ regarding this matter. Another issue which may lead to frustration with many couples is changes in their sexuality. Often they consider sexuality only in light of creating a child and neglect the emotional closeness and physical pleasures during intercourse. When medical treatment starts many have the feeling that intercourse is redundant because conception is achieved by technical means. Again, it is important to create time and space for an enjoyable sexual life. It is important to know that for many couples the experience of infertility has given them inner strength and a greater appreciation of what they are able to manage as a couple – in other words, it has strengthened their relationship.

How can we talk to others?
As a result of the stigma and shame often associated with infertility, it can be a lonely and isolating experience. It is important to have a network of family members and friends who understand what you are going through and who can support you, especially during medical treatment. Others can feel helpless and at a loss for words although they would like to be supportive. In many cases, it is the infertility patient who needs to raise awareness and de-stigmatize its meaning. This can break down barriers and result in others being able to understand your needs better and reacting appropriately.

Where can we find further support?
Sharing with others who experience infertility can be a gratifying experience. In many countries, there are patient organisations which provide support groups or self help groups. On the website of the international umbrella organisation iCSi (international consumer support for infertility) www.icsi.ws you can find links to many national patient organisations in Europe, the United States, Canada and the Asia Pacific region.

In some cases, it can be wise to seek the support of a professional counsellor. This is a truly viable option if you are uncertain about medical treatments, if the implications of certain treatment options for your future family are unclear (this is often the case when you undergo gamete donation), if you are unsure whether to continue treatment or if you suffer from ongoing depressive reactions. Counsellors can support you in difficult times and help you to develop management strategies so that you and your partner can lead a fulfilled life. In some countries, organisations of fertility counsellors can provide further information on how and where to get help (link to national organisation if available).