Infertility: the totally misunderstood disease

25 04 2011

Infertility: a disease by any other name

What is it with these people who believe we’ve brought infertility on ourselves? Why do they think the way they do? Why are their attitudes so lacking in humanity and compassion? Why do others think it’s okay for them to have kids, but adoption is the only route for the rest of us? The answer is ignorance, and sadly it’s all too common.

In her recent article, Cristina Odone attacks the IVF industry for undermining adoption in the UK. She argues that if all those who want IVF on the NHS had to first attempt adoption that it would somehow force necessary changes needed to the adoption process in the UK.

To use infertility sufferers as some sort of battering ram to change adoption policy is obscene. What is she thinking? The truth is, she isn’t thinking at all. When we first discover that we, a loving couple, are infertile – because it really is about two people, whatever the circumstances – we’re devastated, we’re in mourning, we’re grief-stricken and our femininity or masculinity has some how been found wanting. We feel anxious, guilty and worried about the future. Everything we hoped for as a couple, those dreams of creating a new generation, the progeny of our love, all those hopes and aspirations, plans and fantasies all tied up together, are suddenly dashed. Most of us would never think that adoption was the next move. We were put on this earth for a reason and it is our right to try everything we possibly can to become the biological parents of children we wish to bring into this world.

Imagine, you troop up to an adoption counsellor and she asks ‘so why do you want to adopt?’ and you say, ‘…well, actually we don’t, we want to have our own kids, but we’ve been told we can’t until we’ve tried adoption first…’ Would she think you were suitable? You wouldn’t exactly be committed would you? Besides, you’ve just found out you’re infertile, so you’re all over the place psychologically anyway. Under this scenario and you tried to adopt, you would be turned down, so the whole exercise would be self defeating and what a waste of energy, time and money it would all have been. The whole suggestion is an absurd one.

Adoption comes to mind last, after every other possibility that can be afforded has been exhausted: IVF, donor egg or surrogacy then adoption, in that order. If you’re like we were, we had fire in our bellies and a desire to fight infertility every step of the way. We were going to try whatever medical science could offer us first, then we would look at other options. Only when you have no more money to throw at it, or as in our case, when the evidence was so heavily stacked against us, with a 1% chance of success it wasn’t worth it, did we move on, but not to adoption but to donor egg, surrogacy and then adoption.

In reality, adoption rules need changing, they are antiquated and in need of reform. It is though the decline in unwanted babies, the rise of freely available abortion that has impacted the adoption market, not IVF. I cannot verify this with numbers, but I think it’s a pretty good hunch that whereas thirty to forty years ago adoption was still frowned on, it is today far more accepted.

There are many who think somehow, because we’ve chosen to have children later in life, we should be denied the support of the state to conceive. The argument is that we’ve brought it upon ourselves, therefore we should be made to pay or to accept the consequences. ‘Tough’ seems to be the view that’s held. However, in a civilised society ‘tough’ won’t cut it. We’ve paid taxes, we’ve made a different choice to those who had children early, that choice isn’t wrong, it’s just different. We have a right to be supported to become parents, in the same way that it’s your right to a university place at any time of your life. There is simply no adequate argument that gives others the right to judge us, nor to condemn us or remove the support needed.

In the light of all this, I have come up with something that I call my ‘Articles of Faith‘, the truths that I hold dear:

  1. I believe infertility is a disability and like many disabilities whilst there’s no absolute cure it can be treated, with a modicum of success – in this instance, one chance in five (depending on age etc). It should be recognised as a disability and those suffering given protection under new legislation just enacted.
  2. I believe that it is everyone’s natural, God given right to become a parent.
  3. I believe that everyone should be entitled to three free IVF treatments by the NHS.
  4. I believe that  it is everyone’s right to choose when they wish to try to become parents.
  5. I believe that all those who have experienced infertility have a duty to speak up and fight ignorance and bigotry surrounding the issue.
It is really important that we try to remain calm and rational when debating these issues because for some of the protagonists out there, this is a bit of saloon bar sport. There’s this notion somehow, held by many,  that we’re all middle class, bleeding heart, lilly-livered liberals who wear open toe sandals, read the Guardian and vote Green, and that we’ve brought this all upon ourselves and therefore, they don’t see why they should have to pay for our largesse. How wrong they are.
So, let’s stand strong, tall and proud and fight these people who know nothing of our pain and anguish. There are none so blind as they who will not see. It is our job, the one’s who are free of the constraints of infertility, who must make them see and educate them. Who will join me in this crusade?




The loneliness of it all

23 02 2011

‘No body understands’ is a phrase I’d utter repeatedly to myself. I had had such visions of me, a dad, running around doing all those fatherly things. How could it be? But then how bad could it be, I wasn’t the infertile one. The guilt I felt was immense, but the sense of being utterly alone was even greater.

When I started looking at the family tree, I don’t know why, I started digging at this time, I could see that the line was a very fertile one. On Dad’s side, my great great grandfather was one of 10, my great grandfather was one of 9 and my grandfather was one of 24 (from two marriages). Dad was one of 10 (6 still born). Mum’s side we knew less about but she was one of four, her father was one of three and his mother was one of 9 or so. I was one of 5 (two marriages). When my father went to have a vasectomy, after two previously failed attempts, they told him he was probably one of the most fertile men for his age in West Sussex. Then of course, the evidence came back that I was ok biologically.

As I’ve said before, all that is no consolation, I might as well have declared myself infertile because actually, the predicament is acutally something that afflicts two people, you the couple – it’s a shared problem. But it’s a tricky business to share because one of you will turn round to the other at some point and say ‘you can’t know how I feel in all this’, and it would be true; but, my advice at that point would be not to argue that point, but to concede. However, my reposte would be that there are two people in this relationship and we both hurt but in different ways. This is what gets missed.

The truth is, you owe it to each other to recognise the different positions you find yourselves in. The focus is so naturally the one who is biologically or biochemically challenged, all the attention is on that half of the relationship, but the other half needs comfort too. The other half in all this is told that they ‘don’t have a problem’, but the reality is they do, and if  you ignore this, then, over time, the real problem will actually become your relationship, not infertility.

How many times have we all privately gone away to weep? How often, by contrast have we wept together? On how many occasions have we made time and stripped down to ‘yours and mine’ where we expose our true, deep feelings about all of this? In all probability, a lot at first, less so as time has moved on. My advice is that it should be ongoing. Make no assumptions, leave no hostages to fortune – the narrow focus on the end game can leave your partner silent, emotionally crushed and unable to express how they really feel. Both of you have a responsibility to monitor the temperature of your feelings and to resolve any issues that do exist before moving on.

The loneliness of deep inner feelings will gnaw into the fabric of your love for each other. It will be expressed in word or deed at some point, but surface it will and the shock could be devastating. So, remember, you are a couple, you’re doing this together, you need to know how the other really feels because the process you’re engaged in needs informed consent of the deepest kind. If it all seems too hard, slow the process right down to relieve the pressure of it all and get yourselves back on an even keel. Only then, when rational thought returns should you continue, along that well trodden path, together, whatever the outcome.





Approaching your emotions and feelings together

1 07 2010

I received a letter on this blog and replied to the specific points raised. As I did so, I though that a lot of what I was saying could be of value for a general audience. I have re-written my response and hopefully it will add some value to your thinking.

As in all activities where a deep, loving partnership is concerned especially where the emotions are so raw, we all need to cherish that other special person’s contribution, whatever it is. Occasionally, we should all stand back and see things from their perspective. Understanding, patience, consideration, support, tenderness etc goes both ways. Read the rest of this entry »





10 requests to family and friends during IVF

1 07 2010

With IVF and in fact any of the associated trials of assisted parenthood, when everyone knows you’re having problems, families and friends can’t help themselves. They love you, they care, some interfere, some say nothing, some are just silly and some simply couldn’t care less.

Whatever and whoever, we all need to set boundaries to make sure that our pain, anxiety, stress as individuals and as a couple is minimised.

I’ve prepared a list of  10 ‘requests’ to communicate to families and friends so that “you can keep your head when all around you are losing theirs.”* Read the rest of this entry »