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?
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6 responses

25 04 2011
Dory

Thank you David for fighting our corner, I know you have experienced the pain first hand. I hope that people look at infertility differently and with compassion, understanding the stress and strain that it causes. Unfortunately the perception of leaving it too late is all to real. If at a younger age I had a child then it’s very unlikely I’d still be in that relationship. It took me a while to find the right person and he is definitely the right person, the man that I know will help be raise happy well adjusted children. I think age can’t always be used as a reason for infertility, many couples in their 20’s struggle with the same issues, be it low sperm count, early inset of menopause or endometriosis. It is a real shame that the ignorance of those few in society, and I do hope this is a minority are blind to what it is to feel the pain of infertility and the longing to have and carry their own child.

25 04 2011
djpnz

Thanks so much for your comment. I am going to publish the facts about infertility, the causes etc, and try to educate as many people as I can. It really is the biggest problem we face, quite aside from those with moral or ethical issues! The age thing is a major issue of choice, it is also a major cause, but not the biggest one, I agree. Good luck with the parental quest, if you haven’t already succeeded.

25 04 2011
Nessylou

Having had 2 ectopic pregnancies by the time I was 27 (and lost both fallopian tubes in the process) to have a route such as IVF available was a light at the end of a dark tunnel. I felt useless and ‘different’ to everyone else. To take that medical support away and try to force people to adopt is an insult to the children awaiting adoption and to me. I do not understand why anyone would want to use people with a medical disability as leverage in a political forum. Yes, change adoption laws and yes, it is truly tragic that children need homes. But, that doesn’t mean it would be right to make people adopt when they have not reached a point where this is the best route for them. What if someone knew in their heart of hearts that they didn’t want to adopt – are they therefore a bad person? Adopting a child is a big step; that child deserves someone totally committed and that will love them – this is not something you can force someone to do to clear a collective conscience of a social issue. I think adoption is a course that all people should consider – to suggest it should be imposed on people with a medical disability as a ransom for medical treatment (which some people simply cannot afford) is a best ridiculous at worst prejudiced. IVF on the NHS needs sorting out – a postcode lottery system is a shocking way to correctly use the governments resources. A fair system should be in place. But to equate the 2 issues as a ‘pat’ answer seems shallow.

25 04 2011
djpnz

Nessylou, thank you for your kind but sad post here.

The Cristine Odones of this world only see things in black and white. The murky gray areas are too inconvenient for them, but sadly, it’s where most of us exist.

Your story is one such account that wouldn’t fit comfortably into their thinking, nor does another story from a respondent to my blog who finally met the man of her dreams later on in life. To be forced down the route of adoption, first, in either case would be immoral, and just plain wrong. As you say, you have to be committed – totally and absolutely – to the process of adoption because you’re dealing with innocent little lives. This means you have to be psychologically in the right place. Once you discover you’re infertile, you’re in the wrong head space for some considerable time afterward. Adopting children would not be the right thing to do for most people.

To lay at the feet of IVF problems with the adoption process or the lack of children for adoption, or to even suggest IVF has been a contributory factor is outrageous and frankly absurd. We need to do everything possible to lance this boil of a an argument once and for all.

9 02 2012
absense makes the heart grow……. « still counting stars

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18 07 2014
Mishel

Thanks for sharing your story. I was dieoagsnd with Endometriosis a year ago and have been dealing with two very large endometriomas on both both of my ovaries. I have seen a few dr’s and they all say the only the only way I will ever get pregnant is by IVF. Reading your blog and seeing that there is so many women out there that suffer from the same condition. It feels good to know your not alone. Thanks again!

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