‘Infertility is still taboo’

It is a widely held expectation that if and when we choose to, we will be able to have a family. We don’t challenge this assumption until difficulties in conceiving arise. Some couples will conceive naturally, in time, but for those who do not, the pain and loss can be immense, and have a sudden and significant negative impact on relationships.

Infertility is a multi-layered and complex phenomenon, and a number of issues are involved for the people living with it, as it spans the biological, emotional, physical, social, financial and psychological aspects of lives and relationships.

The new, and sometimes destructive, emotions become commonplace for everyone struggling to have a child as close friends and relatives can appear to conceive with ease. It’s hard to look happy when you feel hollow and sad, and to cope with the intensity of grief, loss and desperation while facing up to the harsh reality of infertility.

It’s an emotional rollercoaster for couples who live in month-to-month cycles of hope and disappointment as they navigate a tight schedule of appointments, tests and treatments which place their lives on hold. Prolonged fertility problems invade every area of life, eroding self-confidence and straining friendships. Infertility is, quite simply, devastating.

It’s time for infertility to come out of the closet

Many people keep their feelings and struggles with infertility under wraps. Everyone has the right to privacy, but that secrecy can leave so many people to cope alone, in pain, and often uninformed. Most fertility specialists confirm that couples often conceal their fertility problems. In one survey of couples having difficulty conceiving, 61 per cent said they hid their infertility from family and friends, and nearly half didn’t even tell their mothers.

With the explosion of social media, it has never been easier to connect, share and get involved in online forums and seek support. Yet even when they find a community online, the exchanges are largely anonymous. It is a topic that we still shy away from discussing, shrouded in shame and mystery.

It’s frustrating that our society is not more open about infertility. Couples going through the treatment journey can feel stigmatised because of their infertility, that it is still a taboo subject, which makes them feel somehow they have failed.

In some countries, a woman failing to have a child is even more socially stigmatising. The necessity for a woman to have a child remains basic in sub-Saharan Africa. Motherhood continues to be a defining factor in an individual’s treatment by others in that community, in her self-respect and in her understanding of what it means to be a woman. The achievement of motherhood represents a milestone for women as it confers on them an adult identity and represents normative fulfilment of what is considered to be female destiny.

In the UK, which generally is considered a more tolerant society, we still fail to recognise the grief caused by infertility. People shouldn’t feel or be made to feel ashamed about something that is not their fault and they have no control over. It is a massively misunderstood disease that affects around 1 in 6 people who need help to deal with its consequences, just like any other disease.

The World Health Organization recognises infertility as a physical illness that requires treatment, yet society doesn’t. There’s still a long way to go and we need to move with the times, and raise much more awareness of the pain of infertility because it’s not going away. The more people put their names and faces to this disease, the more our society will understand the scale and impact of the problem. It’s time for infertility to come out of the closet. No one has the right to have a child. But surely everyone should be able to have the choice.

Karen Veness, 46, is a writer from Nottingham, who had her first child through IVF, and now campaigns for a better understanding of infertility. She recommends www.infertilitynetworkuk.com