Is infertility an illness? A perspective and call for increased advocacy for awareness

Link to the blog on the AFA: http://theafa.typepad.com/theafablog/2010/08/is-infertility-an-illness-a-personal-perspective-and-call-for-increased-advocacy-for-awareness.html

I was recently told that infertility was not an illness. In the speaker’s mind, infertility therefore did not merit emotional support in the same way as if the person was suffering from an illness.

This gave pause for thought. I hadn’t actually thought about it in those terms. Admittedly, it is not like having a life-threatening condition such as cancer. Without a doubt, however, it is a medical condition, and one which can have far-reaching consequences on the person suffering from it.

What analogies could you use to express what infertility feels like? Could you say that it is like having a tumor on your arm which you don’t know if can be controlled with treatments, or if they will have to cut off your arm? I was told that this could be a bit melodramatic. But I don’t think it is, as emotionally it evokes how a person suffering from infertility can feel - as if a part of them could potentially always be missing. There is a sense of grief. Infertility can also lead in some cases to mental illness – this is a well known fact from time immemorial.

If people are suffering, shouldn’t we be understanding and sympathetic? If the up-and-coming athlete suddenly has a fatal injury that means he can’t run in the Olympics, we would feel for that person and not tell them to ‘just get over it’. While we can’t all have the ambition of running in the Olympics, it is very natural for the majority of us to have the ambition of having a family of our own one day. Therefore, being potentially denied something which is taken as one of the natural and defining events in life, will affect a person to their core.

A dismissive reaction to infertility, however, can be very typical of many people in society.

Religious arguments are sometimes put forward. Religious thinking such as the Catholic Church sees any form of intervention, be it even for the creation of life, as a sin, as they view infertility as a sign from God that the person should look to an alternative in their lives.

Political and financial considerations can influence a person’s thinking on the topic: In the United Kingdom where there is a National Health Service (‘NHS’) (there is a monthly deduction from salaries to contribute to the national healthcare pot), there have been many objections along similar lines to those in the USA saying that insurance companies should not cover fertility treatments because it is not an illness. People react negatively because they do not want to see their monies being spent against fertility treatments when they would rather see it spent against saving lives which they consider more relevant to them. In economic terms what is the opportunity cost of spending on infertility? This is a very subjective evaluation.

There is a general lack of awareness of infertility as an issue: A large amount of the reaction that the man in the street has to infertility comes from the fact that it is not something that people talk about openly. Therefore the man in the street may not actually know what it actually feels like. Or be aware of how common it is. One in eight people in the USA is dealing with infertility. Infertility comes in many forms – PCOS, endometriosis, advancing age, low sperm count, sperm antibodies, miscarriages etc. These are all debilitating to a couple trying to start a family, and sadly conditions that they generally only learn about when they join the infertility world, and not before. So the person who has never been affected by fertility issues, or known someone affected by it, is definitely not going to know about it.

Even if the man in the street knows someone with fertility issues, it is a difficult topic to grapple with emotionally, and it is easier to turn the other cheek or to think of something else. Although it is time to change and bring discussing fertility issues out of the closet.

Human nature cannot be under-estimated: It is human nature for people to make quick judgments on a topic without questioning further as to whether they have all the information, considered all the angles and the legitimacy of the sources. This is even more the case in today’s world which is very much driven by people focusing on the headline and punch-line in a fast paced media environment.

A good example of this is when you read the online comments section on newspaper articles. You will see comments telling people going through infertility treatment to stop being selfish and to just adopt one of the needy children in the world. What people, however, do not realize is what struggles those people have gone through already and what the entire adoption process entails – it is not easy. The numbers of children available for local adoption, happily, are far less than they used to be. International adoption can be an expensive process. The adoption process is long and intrusive. In some cases you are required to maintain contact with the birth relatives (it can be direct or indirect contact). These are all things which the individuals have to come to terms with. Until you walk in another man’s shoes, it is easy to make off the cuff comments.

What would these people say if you told them that instead of having a second or third child, they should adopt and play back their own arguments to them – feed an existing needy or hungry child as opposed to bring another into the world? From an environmental footprint perspective it is said that families should seek to have less children. May be they should have had one less child or even have elected to have no biological children.

It is a different world today to before: My mother recently told me that she had a conversation with my aunt along the lines of ‘what is wrong with the world? Why is there so much more of this today than before?’ This was a very interesting comment. For one, people probably didn’t go to the doctor in those days for such things and just got on with life and accepted their fate as there was nothing to be done. So it was not considered something relevant to discuss, or was swept under the carpet. If we could go back in time with the knowledge we have today I think we would be surprised, for example, at the level of miscarriages occurring.

In today’s world it is a fact that your son or daughter is likely to have children later in life than before. The delayed timing of the child rearing years isn’t necessarily out of choice.

In today’s world it can take many years to meet Mr. or Mrs. Right.

We have created a society where many people spend much of their young lives in secondary and tertiary education in order to gain access to an average to decent job. In years gone by, often that same level job would not have required today’s level of advance study. This, therefore, involves personal debt and more years before young people are able to afford a home for a family.

The cost of housing is expensive and takes a far greater percentage of a person’s salary than it used to, so it can take people many more years to get on the property ladder and be able to put a roof to put over their children’s heads, as they feel responsible parents should do.

Parents today often want to live their own lives once their children are grown up. This means that even if they can, they may be less likely to offer to help their children financially or with childcare. Children know they need to find a way to pay their way on their own, which translates into a delay in child-rearing years. There are those parents, of course, who would love to be able to help their children but cannot do so financially, or due to poor health. And even if parents are willing to help with childcare, they may live far away from their children because their children have had to move to where the work was.

Take even only one of these factors, and you have the lives of many young adults today delaying when they start to try for a family, not out of choice but because it has taken them longer to find their ‘mate’ and build their ‘nest’. And consequently these couples end up with an increased risk of infertility issues. Which can come as an even harder blow to them when they see all their efforts into building that ‘nest’ could be redundant in terms of having biological children.

We need to remind people that we have a collective responsibility for the type of society that we live in today, and the fertility challenges that those of child-bearing age experience today. It isn’t all of somebody else’s making, and nothing to do with them. The person suffering infertility could well be themselves or their son or daughter.

Fertility may not be an illness as we understand the word ordinarily. It isn’t going to kill you physically necessarily. But it is, without doubt, a medical condition with a much higher level of incidence today than it should have and one which people should be supportive of. It can have a very serious and permanent effect on people mentally, made worse by the complications of growing up in today’s world. In November 2009, the World Health Organization in Geneva defined infertility as a disease, which is a great step in allowing people to validate the suffering that many are experiencing and people are ignoring. And people are starting to stand up and make a voice for their message to be heard – two good recent examples are the What IF: A portrait of infertility Video which won an award for promoting fertility awareness with a call for grassroots advocacy and the SELF Magazine Article on Breaking the Silence on Infertility. The man in the street should understand that the increased incidence of infertility is a modern day phenomenon not to be ignored. If people want to see less of this ‘medical condition’, they need to stop being critical or unsupportive. They need to start doing, taking part, speaking to their children and family about this important topic and helping to change society so that we are more supportive and encouraging to young couples. They need to support research aimed at reducing infertility, and funding to help those who need assistance.

Medical condition or not, without doubt, it is an ‘illness’ of our modern world. And it is in our hands whether to change this or not in an enlightened way. Not anybody else’s.