I have been writing and lobbying for about six months now to improve fertility and infertility awareness. There is one word which sums up how it has felt: frustrating.
My lobbying has extended to a blog, writing pieces which are posted on sites such as the AFA site, emailing friends and family and writing to government bodies, politicians and fertility specialists - all with a call for increased awareness. The frustration, however, comes from the responses received.
In the case of some family members, the response has been silence. What do this mean? That they don't approve? That they feel embarrassed? Are they in some sort of denial? Do they think that they do not have a role in raising awareness and being supportive to others? And this silence has extended to family members who themselves suffered from infertility, which is difficult to fathom.
Other family and friends have expressed admiration for my efforts, but in some of the responses I still detect that while they make encouraging noises, they don't seem to appreciate that they are actually a conduit themselves for improved awareness: they themselves have the ability to talk to people about (in)fertility issues, or even lobby for awareness. An example of this was from my mother who when asked for a reaction to my pieces said, 'let me know if anybody does anything about it'. It continued to be, in her eyes, somebody else's job to do, and not hers.
This sort of response is not limited to friends and family, however; the same sort of sentiment is expressed by the medical profession themselves. On the recommendation of the Human Fertilisation and Embrylogy Association, a letter was sent to the Royal College of General Practitioners ("RCGP") regarding the need for more pro-activity from the medical profession to inform patients wanting a family one day about the fertility challenges that can arise and how fertility declines with age. The Honorary Secretary of the RCGP did reply promptly but here is what she said,
My lobbying has extended to a blog, writing pieces which are posted on sites such as the AFA site, emailing friends and family and writing to government bodies, politicians and fertility specialists - all with a call for increased awareness. The frustration, however, comes from the responses received.
In the case of some family members, the response has been silence. What do this mean? That they don't approve? That they feel embarrassed? Are they in some sort of denial? Do they think that they do not have a role in raising awareness and being supportive to others? And this silence has extended to family members who themselves suffered from infertility, which is difficult to fathom.
Other family and friends have expressed admiration for my efforts, but in some of the responses I still detect that while they make encouraging noises, they don't seem to appreciate that they are actually a conduit themselves for improved awareness: they themselves have the ability to talk to people about (in)fertility issues, or even lobby for awareness. An example of this was from my mother who when asked for a reaction to my pieces said, 'let me know if anybody does anything about it'. It continued to be, in her eyes, somebody else's job to do, and not hers.
This sort of response is not limited to friends and family, however; the same sort of sentiment is expressed by the medical profession themselves. On the recommendation of the Human Fertilisation and Embrylogy Association, a letter was sent to the Royal College of General Practitioners ("RCGP") regarding the need for more pro-activity from the medical profession to inform patients wanting a family one day about the fertility challenges that can arise and how fertility declines with age. The Honorary Secretary of the RCGP did reply promptly but here is what she said,
'The College does have these issues in our curriculum and we appreciate their importance'.
There was no acknowledgement of the fact that while it is 'in the curriculum' that the point was that general practitioners are not always having the conversations with their patients at pill checks and other well-women checks as they should. I felt compelled to reply to the Honorary Secretary and highlight that, as a patient, I could inform her that the information was not being passed on as she might expect or anticipate, and that I recommended that they issue memoranda to GPS as reminders to the importance of their pro-activity in these areas and to reinforce it also as part of their continuing professional development.
So what can we do about this? To encourage people to be more responsible and to look out for each other in terms of raising awareness and being supportive of those with infertility.
For one, the key is to not loose hope, energy and determination. It is going to be a long and slow road to raise awareness, but it can be done. Rome wasn't built in a day so we shouldn't expect this to be an overnight change either. But with perserverance we can slowly chip away at the prejudices and help people to face the realities of fertility issues.
We should not feel that our efforts are in vain: in the memoirs of an emminent criminal defence barrister (attorney) in the United Kingdom, he states that what he has observed over his long career is that progress is brought about by the extraordinary efforts of ordinary groups of people who fight for what is right and change; you cannot rely on politicians. This gives me the hope that change is possible with a little effort from us all.
Teach people 'how' to have the conversation with the people they meet to raise fertility awareness. It has struck me just how much people don't know how to discuss the topic. Their own embarrassment to raise it prevents them from doing it. They may not stay silent out of malice, but their own insecurities can stop them from doing an act of kindness.
People fear sometimes that they will come across as nagging, or that they may get a bad reply from the person if they raise the topic, or do not know how to handle the reply if it is not what they had anticipated. They, therefore, hide behind statements such as 'you are a very private couple' or 'you are an adult' to defend their own fears of raising the topic.
So may be it would be good to have some way of teaching people how to have the confidence to have the conversation on fertility awareness. To feel equipped with a set reply when someone cuts them off briskly saying they don't want to discuss or they do not get the reception they had hoped for. What follows are my own thoughts and opinions, and not those of any professional in the fertility field - but it would be wonderful to see it developed by professionals to help friends and family have the conversations which can save people from uneccessarily difficult times.
Some people are not even comfortable asking a person if they would like children, but I personally see no issue with this. It is one of the steps in life which many, many people take. If they say they do, or say that they think they may one day, this gives you an opening to have more of a conversation. The key is to not come across as nagging, to not make the person feel belittled or stupid for any decisions or lack of information that they have had up to that point. And, of course, you never know if they are already battling with infertility issues privately and just have not told you. So as the initiator, you have to be prepared for an unexpected response possibly - but whatever the responses here is the most important thing to come out of your conversation: for the person to feel that you are non-judgmental and supportive whatever they decide, and that you are there to speak more if they would ever like to. And for those who have yet to start trying to conceive, to plant the seed of thought in the person's mind with a pointer as to where to get more information on the topic if they would like it - for example, a conversation with their doctor, or even better, a gynaecologist, or to websites such as the American Fertility Association.
If they say they do not want children, then I do think you can wrap up the conversation in a relatively quick fashion but in a manner that, again, leaves them feeling that you are non-judgmental and supportive whatever the case and which leaves the door open for more dialogue if they would like. They do not want your opinion on the correctness of their decision so make clear your respect but do tell them that if they ever have questions or feel they may change their mind, that you are happy to chat, or if you or they aren't comfortable to have the conversation, to speak with their doctor. People are complex creatures and they sometimes use this as a standard answer to avoid having a conversation on a topic that they havent quite sorted out in their head yet, and so aren't comfortable discussing. But they may be in a few months' time. Or again, they may use this response as a smoke screen to hide fertilty issues which they are struggling with privately. And, of course, there are those people who truly do not want children.
I have emailed friends and family members of child bearing age or with relatives of child-bearing age, articles regarding how fertility changes with age with a line saying, in case you would might like children one day otherwise feel to ignore. People have either been silent or expressed gratitude, but nobody has been rude. Sometimes it just needs a little courage and sensitivity to the issue, to stretch out a supportive hand to a friend or family member.
So yes, it may be frustrating but the key is to not give up, even if people don't seem to want to 'get with the program' with the positivity that you would expect. I am convinced that good does come of good. So spreading the word will eventually have a positive effect on somebody's life, even if you aren't aware of it. And if only just one couple is spared the challenges of (in)fertility because of your little attempt at advocacy, it will have been worth it.
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