Complicated choices lead to childlessness

Sue at Childless by Marriage recently wrote a piece titled Childless by Marriage vs Childless by Infertility. She concluded that the main difference between being childless by marriage rather than by infertility was choice. I didn't comment on her post, (though I read and comment regularly on her blog, and would love to see her here), because this one felt very specifically directed towards people who see themselves as childless by marriage. I understand the comfort that can come from talking to people who understand, who have been through similar experiences, and I didn't want to disturb that. Rather, I thought I might explore this issue here, putting my slightly different point of view.

When my husband and I got married, I was young, just graduated from university. I wasn't prepared at the time to discuss children, because I was far from ready, and I couldn't and didn't guarantee I would ever be ready. My husband married me anyway. So he was childless by marriage for years. Little did we know that when I would be ready, my body wouldn't be.

I have heard this this a lot. Women who talk about how carefully they avoided pregnancy in their 20s, only to find in their 30s that they had difficulties conceiving or carrying to term. I don't know if I had tried to get pregnant when I was younger if it would have been possible. It's a pointless question now anyway.

So we then dealt with pregnancy loss and infertility. The issues were mine - I kept having ectopic pregnancies, and then after the trauma of my second ectopic, my body effectively shut up reproductive shop! I have an online friend who had a compatibility issue with her husband that caused their combined infertility. But in most cases, the issue usually lies with one partner or other (or is unexplained). So the other partner, in our case this was my husband, then became childless by marriage. He wasn't infertile, after all. He was childless only because he was married to me. I worried that he would leave me, then I worried that by staying with me, I was denying him the children he so wanted. I wasn't alone in these thoughts. I've seen many many women grapple with the same issue over the years. My husband made the decision to stay, in just the same way as any of the childless by marriage partners who also chose to stay with the one they love. He had a choice. 

If we had lived elsewhere, there might have been more decisions or issues to discuss. Should we go further with IVF options? Should we look at donor egg, or surrogacy? These weren't issues in New Zealand, where assisted reproduction is carefully regulated. But at each step, there are choices to be made. Should we try? How much do we spend?  And at each step, there is a risk of opposing views, or differing limits, and doors closing.

We discussed adoption. Briefly. We had differing views on this. But I knew that I wanted my husband in my life more than I wanted any potential adopted child, knowing how difficult adoption can be. So did our roles switch then? Was I childless by marriage? Potentially. I might have had a choice, but it didn't feel like one. There was no question for me. I chose my husband.

So, we don't have children. Infertility/pregnancy loss is just one of the reasons for that. Anyone who has been through this can see that it can be very complicated. Whether someone is childless by marriage, chance, or circumstance, or all of the above, there will be a list of reasons why they don't have children.  They probably don't know for sure if infertility might have been one of those reasons - after all, none of us assumed infertility would be a problem until it was. We assume we are fertile until evidence is presented that proves otherwise. Does it matter? Not really, because none of these choices feel like choices. Those who are childless by marriage might choose love, and not having children becomes a consequence of that, rather than being their first choice. Life is very complicated, and the issue of choice is really complicated too. I guess it's why I don't really like labels, because things are never quite as clear-cut as they might seem.

I don't feel that how we got here is as important as what our lives look like now. We have all faced difficult decisions and difficult circumstances, and will continue to do so in this pronatalist society. Which is why I feel real solidarity with those who are involuntarily childless for whatever reason. And hope that we can all live full and happy No Kidding lives.

It's okay to quit

It’s funny where I get inspiration for my blog posts. I’m listening to an interview with an author* about early and late bloomers that is, essentially, criticising the pressure put on children and young people to achieve early, to go straight to university /college after high school, and to dive into a high-achieving career, regardless of whether it is right for the individual, regardless of the toll that the pressure takes from then, and regardless of whether they are mentally ready for that. He talks about the benefits of patience, of waiting to find out who you are, of not succumbing to pressure.

In the midst of the interview, he mentioned that it doesn’t help that there is a “cult of tenacity” in US culture. My ears pricked up. It’s not exclusive to the US, of course. It’s very strong in many (but not all) western societies, and perhaps even stronger in many of the Asian societies that are familiar to me. And as we know, it’s not exclusive to studying or career paths.

“It’s okay to quit,” he said. “Quitting is just a decision that our energy is better used elsewhere. Tenacity has its merits, but tenacity that is stupidly applied will burn you out, and not get you where you want to go.” He used the example of over-training physically, or focusing on only one way of training even when it is not working for you.

Is this ringing any bells? Tenacity in and of itself is not guaranteed to get you where you want to go. Those of us who are living No Kidding lives know that. But we’ve had the messages of tenacity thrown at us most of our lives, and certainly in terms of those efforts to conceive and carry a child.

“Never give up!” say people who think that tenacity will achieve anything.

“Apply yourself and you can achieve anything,” say the people who were lucky enough to have achieved through (or perhaps even despite, tenacity), assuming that this is all anyone needs, when clearly it is not.

“Keep going,” say the people who got their desired results, convinced that what they think worked for them would work for us.

“You gave up!” they judge, thinking that tenacity is a virtue, and clearly we weren’t as strong or dedicated as they were, or that we just didn’t want it enough to continue.

So it is refreshing to hear people say that it is okay to quit, even in different contexts. Not that I need someone to tell me it was okay to quit. It was/is not anybody’s business but my own (and my husband’s). I’m at peace now.

But if talking about this starts to chip away at the grip that the cult of tenacity has on our societies then I will be happy. If it makes people think about how they put pressure on others, how they judge others, and how unfair this is, then I approve. And I approve especially if it allows people who are stuck in infertility’s waiting room to feel better about taking one of the other doors in order to escape. If it helps them doing so without the sometimes cripplingguilt and self-doubt that many of us face at this stage of the journey, then I wholeheartedly approve.

After all, to repeat his comment, quitting is just a decision that our energy is better used elsewhere. And when we’re at the end of the road, and have no expectation of success despite continued tenacity, then it is logical and healthy to choose to direct our energy and our hopes somewhere else.

* Here’s a link to an excerpt of the book – Late Bloomers by Rich Karlgaard.

#Microblog Mondays: It's a Valid Choice

Aisha Tyler spoke again about infertility (as well as a lot of other interesting topics), and made some points I think are worth sharing.

1. Concentrating on your career, not family, at any time is a valid choice.  
2. Choosing to stop is a valid choice too.  
3. Most women can't afford to pursue treatment after treatment.
4. Most women don't get pregnant - we only focus on the Cinderella stories.  At last, someone said it.
5. There is no clock ticking on adoption. Whilst I disagree with this - depending on your location and budget, there is definitely an age factor when it comes to placements - I think that she was actually saying that choosing not to adopt (or not to rush into adoption) is a valid choice too.

If you have the time, watch her entire interview here.

PS.  Thanks to Mel for giving me the heads up on this interview.

Infertility's Waiting Room

We do a lot of waiting when we are infertile or have suffered loss.  Waiting for the right time for a start.  Then waiting every month to see if we're pregnant.  And even that waiting is filled with waiting – waiting for our fertile days, for ovulation, for the days when we can realistically test to see if this month was the one.  Then we wait to be referred to a specialist, wait for appointments, for cycles to begin, to get lab results, to inject, to get more lab results, to collect, to fertilise, to grow, to transfer, to test, to try again.  Then for some there is other waiting - to see beta results rise, to reach viability, to give birth.  Or for approval, a match, a birth mother, a court date.  Frequently, there is waiting for the financial resources we need to support all the other waiting.

Yes, we spend a lot of time in the waiting rooms of infertility.  And in that waiting room, there are a number of doors.  The door we enter through immediately locks behind us, and we can never pass back through it again.  We are changed, and if we are honest, the totality of the life behind that door is lost to us.  Often we leave our innocence and hope and faith and trust in a fair world behind that door. The fact that this door remains closed surprises many.  They think they will be able to go back through it, and get back to “normal” as if they never left.  They especially expect this if they get what they came for.  It is a shock to many to find that it isn't that easy; to find that what brought us to the waiting room stays with us.

So we sit in the waiting room of infertility, and we wait.  Some of us run around and try all the tools available to us in the room, over and over again, and some are more choosy for a myriad reasons.  Some too don’t have the means (financial, medical, social, emotional) to try all the tools. But ultimately, waiting is what we all do there.

And as we wait, we look at the other doors with exit signs.  One of those doors is brightly painted, is festooned with flowers and balloons, and has flashing lights around it.  When that door opens, a glow of light beams through, and we hear cheers and laughter and the popping of corks when we see one of our number walk through it.  We feel the warmth of a large group waiting to welcome us in.  This is the door we want to go through.  This is why we’re in the waiting room.

We don't see past the initial lights and music though.  We don’t want to.  We don’t see that through this door there are still clouds and sadness and hard work and jangling alarms and stress and arguments and guilt and worry.  We don’t want to, because it might make us question everything we are going through, back in the waiting room.  We want to believe.  We want the holy grail.  So we just see and imagine the sunshine and friends and family, all painted in happily ever after.  This means that, when they get through the door, some are surprised that they still carry with them the fears and sensitivities and anxiety (sometimes more) that built up in the waiting room.  That life still has its downs as well as its ups.  Thankfully, though, there are people who write about this, opening the door a crack further for those still in the waiting room, helping them understand.

Back in the waiting room we see another door.  It is more subdued than the first door, but adorned with flowering bushes and lush ferns, and when we see women leave through it, we also hear applause and glasses clinking and the laughter of children.  It is muted, there has been grief and struggle to get to this stage, but still there is happiness and warmth on the other side, and initially it seems a deceptively easy door to walk through.

We don't see the tests we might have to go through once we choose to walk through that door, or all the twists and turns on that path.  From our seat in the waiting room, we only see the portraits of happy families on the walls as they open the door.  We don't see the same joys that are through the first door, but we assume and hope that they will be there.  And we have a barrage of people outside the waiting room urging us to take this door, reminding us that this door is always an option.  They too don't see or understand the twists and turns of this door, or how difficult it can be to go through it, or how difficult it might be on the other side, how complicated it can be, the loss that has occurred for the room to exist at all.  They think it is simply a matter of just doing it - opening the door and going through.  If only that were the case.

Then there is a third door.  Most of the seats in the waiting room face away from this door.  It is hidden in a corner, discreet, unattractive, certainly unadorned.  The pot plants around it are dusty and drooping, neglected, in need of some tender loving care.  For some of our time in the waiting room, we might not even notice this door, because we are convinced that we're going through the door surrounded by light.

But then one day we see it (some sooner than others).  And once we've seen it, we can't ignore it ever again.  It looms large in our peripheral vision, and as we spend more and more time in the waiting room, it grows and takes on an ominous hue.  When the door opens for a woman to walk through, often she is weeping.   These are the women who have tried all the options and used all the tools in the waiting room, or they are the ones who couldn’t reach some of those tools, or who collapsed on the floor in exhaustion, unable to get up and try again. We watch them grieve, and go through that door in varying states.  Sometimes they go willingly, accepting that this is their only option, some with a dejected slump, some determinedly thrusting their shoulders back and holding their heads high, with sadness in their eyes.  Sometimes they are pushed through the door, kicking and screaming, trying to cling on to their waiting room seat with its view of the other two doors.  

And when they open this last door, all we can see from the waiting room is darkness.  There are no bells and music and popping of corks going through this door.  When the door opens, a chill air rushes into the waiting room, and those seated there recoil, huddling into themselves, pulling their hope around them in comfort, trying to ignore the fear that has taken root and grows within.  They see darkness through that door, and they believe that all the darkness and despair they feel in the waiting room comes from this door.  It must be avoided at all costs.

What most people don’t see though is that people who stand to walk through any of those doors stand straighter as they leave the waiting room. Because that is where the darkness and despair live and thrive.  Those still in the waiting room don’t see the light behind this door, because the light is hidden by a dark screen, a healing screen that eventually we all manage to walk through. The waiting don’t see the women there shed their burdens, feel lighter and become more alive.  They can only see the darkness.  They are simply unable to imagine there is any light behind that door. They don’t hear the throngs welcoming us in, because there are fewer people behind that door and their welcome is more muted.  Many of them might be busy doing different things, but they are there, and when we encounter them they are welcoming and compassionate and thoughtful.

And once through that door, once through the difficult maze of dark reconciliation, the sun comes out, and hope and inspiration bloom.  Yes, there are difficulties and sadness through this door, as there are through each of the doors.  But there is also sunshine and light, the scent of summer flowers, and - when I went through at least - the sound of champagne glasses being filled on the decks of a ship in the Aegean.

But all this is largely unknown to those who sit in the waiting room of infertility.  They can't see any of this.   And that's why I write.  To offer a view further through that last door, as others* offer different views further through the other doors. To let people in the waiting room know that whichever door you open, there will be happiness and sadness and wonderful surprises. And that hidden door, the one that opens in your worst nightmares?  I hope that here I can paint this door in happy colours and nurture the plants around it to make it less scary.  I want to bring it out of the shadows and bathe it in light.  

* and many more

"If you don't have kids, you don't understand"

A comment on my previous post referred to the “if you don’t have kids, you don’t understand” comments we are often subject to.  There’s a video doing the rounds on FB – a British comedian doing a skit about the difficulties of raising children, and how people without children don’t know.  “They think they know what they’re talking about,” he says, “but they have NO IDEA.”  Yes, he shouts these words to emphasise the stupidity and ignorance of people without children. 

I've heard variations of this over and over again.  And today, I’m standing up to say that yes, we do know, and we do understand.  No, we may never have experienced parenthood in the way you have.  But we know what you’re going through.  How could we not?  We are constantly bombarded with the messages about how hard being a parent is, and with the accompanying messages “if you’re a parent you are superior/deserve a medal/etc.”  I wish I had a dollar for every time I heard a parent say “no-one tells you how hard it is.” …  Yes, they do.  (I want to shout).  Everyone tells you how hard it is.  I know, how come you didn’t know?  Or perhaps you just didn’t want to know?

For example, we are constantly bombarded with the “you don’t know tired until you have a baby/two babies/etc” message.  We understand that you may have weeks, months or even years of severe sleep deprivation.  It was one of the things I was very worried about (loving and needing sleep as I do) when I was on my quest to have children.  I’ve had to wake enough at 3 am for work purposes to know that a) I don’t – to put it mildly - like it one bit, and b) I would find it hard to cope with on a regular basis.  I’ve had to work with no sleep or just an hour or two of sleep, so I know that I would find it incredibly difficult.  I shudder to imagine how difficult it would be to do that day after day, week after week.  I understand.  I sympathise.  I just haven’t experienced it.

Just as we know that a toddler can be beyond demanding, that teenagers can be downright unpleasant, how worrying pre-teens can be, and that an ill child must be distressing.  We know that.  We've all experienced babysitting or visiting with you and your children, and/or hearing your stories about your children.  We've seen you struggle, often juggling some or all of the above situations at the same time, and we know that there must also be a multitude of times when you've struggled that you haven’t shared with us or asked for support.  We know this.  We haven’t experienced it.  But we can imagine the extent of it.   We spend a few hours in your company with your children, and we imagine those few hours extend into days, weeks, months and years – with better hours/days and with worse. 

You see, just because we don’t have children doesn't mean we are stupid, naive, unobservant or unsympathetic.  We know it is hard.  We know it changes your priorities, your focus, the way you think.  Many of us wanted this.  Yet you constantly say “people who don’t have children don’t understand.”  Why?

I think there are two answers to this.

First, I suspect that parents are saying this to a different group.  When they mean “childless” or “people without kids” they tend to refer to “people who don’t have kids yet.”  The comedy video for example is talking to people who might be thinking about having children.  And many people (not all) focus on the positives of parenthood, not the difficulties, when they’re making the decision to have children.  It is only natural.

I do have to say though that when we are trying to conceive, especially when we are having difficulties, or have suffered loss, we often manage to convince ourselves that everything will be rosy, our lives will be perfect when we get pregnant/baby arrives.  It’s what drives us to continue trying.  Someone recently talked about having her children and then “getting on with the rest of her life.”  As if if her life hadn’t begun yet, even as she went through infertility and growth and job changes.  As if all troubles would melt away once her child arrived.  Whilst most of us know intellectually that having children isn’t the antidote to our woes, in the midst of the trying-to-conceive frenzy, especially in the midst of infertility, it is easy to forget this.  I can’t tell you the number of times I have heard (read) women say that they will never be happy unless they are pregnant or have their baby.  And perhaps it is in response to this rose-coloured glasses view of parenthood that many parents – who themselves feel as if they are deep in the trenches of parenthood - feel the need to say “you don’t understand.” 

Those of us who are on the other side, however, know that having children isn’t all rosy, in the same way we know that not having children isn’t a terrible thing.  In coming to terms with our own situations, we are forced to take off those rose-coloured glasses, to see our own lives objectively and to embrace what is positive.  And in doing that, we become (I believe) much more attuned to the difficulties of parenthood too.  Looking at the positives of our lives helps us heal and blossom.  And in doing this we realise we might be lucky not to have to deal with the many difficulties of parenthood.  In time, we are able to become more empathetic to those who have children.  Until that moment when they say “you don’t understand” and push us away, just when we’re prepared to offer support.

Because the second reason I think parents want to say “you don’t understand” to us, the childless, is more complicated.  There is a well-known human trait that makes people feel good when they make others feel small (studies for example show that people enjoy rewards more when others don’t have it).  It builds some people up, makes them feel superior, makes them doubt themselves less, and perhaps convinces them that they made the right decision, even in the midst of despair (and perhaps doubt) at the problems and exhaustion and worry.  (I’m not saying that being a parent is full of despair.  I am saying that parents frequently and freely admit that there are moments, hours, days, or more of despair alongside the love and pride and joy and all the other emotions of parenthood.) 

Rather than bristling at the condescension, or perhaps I should say more accurately, after I have stopped bristling at the condescension, I prefer to see this another way.  I see it as a plea for empathy, a plea to find comfort from others who have been through this and can say “yes, we know,” a plea to find others helping them feel less alone in finding this difficult.  This explains why the comedy video is so popular.  I can understand that and I feel sympathy for it.

But why, in searching for that empathy, is it necessary to be so condescending?  A condescension and discrimination that is incredibly common, endorsed and legitimised by society in general.  But do parents really want to scorn and push away those who could be their biggest supports, who could give them some adult only time, who could be beneficial influences in their children’s lives?  I don’t know.  I'm sure they don’t know either.  I suspect they’re just too tired, too focused on getting through the day, to realise what they’re doing.

Fertility fantasies

Some of us who blog about our No Kidding lives have been highlighting the New York Times article by one of our own, Pamela Tsigdinos, and Miriam Zoll.  We have been delighted that two people have been brave enough to speak out and say, “stop!”  Stop claiming that you can solve our infertility.  Stop claiming that you have everything we need to create our families.  Stop hiding the fact that there are women who will not conceive after fertility treatments.

And yet, not all in the infertility blogging community agree.  It’s as if we read two different articles.

Actually, given that “perception is everything” maybe we did read two entirely different articles.  We come from completely different perspectives. This is another example of the alienation we sometimes find in the wider infertility blogging community, the differences between those who walked away with a baby (or more), and those of us who didn't.  Those who are raising their children after fertility treatments or adoption have reason to be grateful to the fertility/adoption industries.  Completely understandably, of course.  Those of us who didn't end up with our babies after fertility treatments (IVF, IUI, clomid, donor eggs or surrogacy, and any others along the way I might have left out) probably do feel differently when we see something advertising “Everything You Need to Create Your Family.”   It stings, right to our core, as we know, KNOW without doubt that they are not providing “everything we need” because they can't. It might be the “everything” that some people need, but certainly is not enough for all. 

We’re not blaming the industry for that.  We don’t expect 100% success rates.  I was and still am very comfortable with the care I received when pursuing fertility treatments.  (It was being dropped like a hot potato once it was clear I would have no further treatments that rankles.)  But all the advertising, all the media comments, and the common view pervading society is that fertility treatments (and/or adoption) “solve” the problem of infertility.  They are a cure.  An answer.  Therefore we don't really have a problem.  And we deal with this on a daily basis, in a way those who were lucky enough to have successful fertility treatments, lucky enough to have partners who would pursue these treatments, lucky enough to be able to afford them or have health insurance, lucky enough to conceive/have a surrogate conceive/ or adopt, don’t have to.  We are forever told that living without children was our “choice.”  When for many of us, as I've written before, there was no choice at all.

If you think I’m exaggerating, look at the Time cover article about being childfree, dismissing those who faced infertility by implying that “with fertility treatment widely available, not to mention adoption” women without children are largely the child-free.  That’s right, those of us who are involuntarily without children don’t exist.

The comparison between a criticism of infertility diagnosis and treatment, and that of cancer diagnosis and treatment, has been made.  The difference with infertility when compared with cancer or other serious diseases (and whilst I haven’t had cancer myself – despite having being suspected of it when my second complicated ectopic pregnancy wouldn’t resolve – I have had two parents who have had cancer, one who died of it) is that the media, society, our friends and family and even those who we thought were our sisters in infertility, all seem to think that fertility treatments will solve everything.  Infertility bloggers (with the exception of a few rare individuals) regularly, still, talk about those who have resolved their infertility (ie with a baby) and those who are “still in the trenches.”  There are only those two groups.  The implication is always that those in the trenches will crawl out of them, clutching their newborns in their arms.  Failure is not considered to be an option.

Yet, when you get a cancer diagnosis, there is the immediate fear that it might be a death sentence.  HIV is a similar diagnosis.  Statistics will bear out that you are more likely to survive and live a long life after a cancer diagnosis (depending on the diagnosis or particular cancer, of course) or thankfully, HIV these days too.  But that’s not the first thought you have, or that anyone has if they hear you have cancer.  You don’t have the world dismissing your problems and telling you that your outcome is essentially “your choice.”  The two diseases – cancer and infertility - are seen totally differently in the eyes of our societies, and are treated thus in the media.

So I for one was pleased to see someone putting a more balanced view on infertility into the media.  One article pointing out that fertility treatments don't always work cannot be called skewed, when 99% of articles I've ever seen about infertility focus on the “happy endings” of pregnancies or adoptions.  Even the negative articles focus on the births of multiples (with the Octomom as an extreme example), never the unsuccessful cycles.  The article too was not anti-treatment.  Far from it.  I am pretty confident in saying that none of us who have tried fertility treatments are against them.  We are thankful for having that opportunity.  I am thankful for friends and family who wouldn’t have children but for fertility treatments (or adoption).  I wish that fertility treatments were more widely available, that in the US insurance covered it, and that restrictions to government funding in many countries weren't so tight.  But against this, we find advertising and media promotion that implies that all you have to do to "create your family" is IVF or another fertility treatment.  And that is simply wrong.  And likewise, it would be irresponsible at worst, misleading at best, for any medical professional to suggest that they had “everything you need” to “cure” a disease, whether it is infertility, or cancer, or heart disease, or HIV.  And yet that is what the Fertility Planit Show is doing.  And it is what many fertility clinics advertise.  (I've never seen a cancer specialist advertise – ever.  It is not done in NZ.  I don’t know if it occurs elsewhere).  And as a result, it is what many people now believe.

There are many hidden issues too.  How many women are told that IVF has a much higher rate of ectopic pregnancies?  And no-one (well, almost no-one) in the infertility community talks about the dangers of fertility drugs, and the high dosages many fertility clinics will give to patients, despite the fact that statistical evidence doesn't show increases in results over a certain maximum.  Yet many women receive treatments at twice that maximum, or more, and at tremendous financial cost.  In my several years of blogging and reading other blogs, I have read only a tiny few blogposts making a passing reference to concern over the effects of the drugs.  But is it talked about?  Do doctors raise it?  I don't know.  I know though that I am very thankful that New Zealand’s industry is regulated, and that – even though it meant the end of my journey – I was not able to demand higher and higher dosages of drugs, in case they might work.  Because I probably would have, if I could have.  Getting off that treadmill isn't easy. It is in many ways easier to stay on it.  And so in an unregulated industry there are dangers, and there can be fly-by-night or unscrupulous operators who will continue to push treatments that are not justified.  And they can argue that they are "doing the best for their patients."  But are they really?

I am as you can see very comfortable describing this as an industry.  And yes, it is an industry, just in the way there is a pharmaceutical industry and a healthcare industry.  These are (with a few exceptions in government-funded systems) businesses run for profit.  I don’t deny that the majority of practitioners are caring and ethical.  And profit is necessary to ensure a service is provided.  But they are businesses, first and foremost.  I know this is different in New Zealand, but I have seen dentists advertise, appearance medicine surgeons advertise, and one or two other medical practitioners advertise.  I've never seen a cancer specialist, heart surgeon, or neurosurgeon advertise.  I have however, even in our heavily regulated fertility industry, had to drive past a huge billboard advertising our local fertility clinic (when there is only one in our city) on a daily basis. Because it is a business. (To add insult to injury, their advertisement included a grammatical error.) 

I feel very sad for those who might try different fertility treatments over and over again at the encouragement of a doctor (perhaps well-intentioned, wanting to see their clients go home with a baby, feeling their pain), and who aren't counselled about the odds, and whether they should stop.  A friend of a family member, in another country, talks about her million dollar baby who arrived after up to 20 fertility treatments.  Whilst I'm happy for her, I think of those others who did that many cycles and didn't walk away with a son.  After all, even cancer specialists will tell a patient when they can’t do anything more.  How often, I wonder, (and this is a genuine question, not a sarcastic comment) does this happen in an unregulated industry? Maybe less than it should?

I also want to acknowledge those who don't appear in anyone’s statistics of success or failure, simply because they couldn't afford even a basic fertility treatment, let alone the “2-3 IVF cycles” that might be necessary to conceive.  I have known plenty of people who can only afford one cycle, in New Zealand, in the UK and the US, or can’t afford any.  Even when free treatments are available in a government-funded system, there are other costs – travel to and from clinics, time off work, for example - that prevent women/couples attempting even one fertility treatment cycle.  That gets us into a much wider issue, of course, but I can say I don’t know of anyone in the UK or New Zealand who would be denied basic cancer treatment or a heart bypass simply because they couldn't afford it.

Pamela and Miriam are not condemning this industry. Far from it.  But they are saying that some balance is necessary.  They make the very valid point that fertility treatments don’t work for everyone, and that bears talking about - in the industry, the support community, bloggers, friends and family.  I wonder, does the fertility industry and the wider infertility community just want those of us who are childless to go away and be quiet, and pretend it never happened to us?  I fear so.  We are after all bad advertising to potential clients of fertility treatments (or adoption), letting them know that treatments (or adoption efforts) aren't always successful.  We are the worst nightmares of the women deep in the trenches, and we unwittingly provoke "survivor's guilt" amongst many of the women who have their prized children with them now.  We know that.  We understand that.  We accept that, albeit sadly.  But we won't go away.  We need to speak out, and be recognised.  

As a woman who could not have children after loss, infertility, and fertility treatments, I personally was very pleased to see my perspective put out there.  For a change.  Maybe this publicity will help those of us who don’t walk away with a baby.  Maybe it will help raise awareness that it happens, and maybe that will reduce the pressure on us and others (to try IVF as if it is a golden bullet, or to “just adopt”).  Maybe too it will help others decide whether and when and how many treatments are right for them.  Maybe, just maybe, speaking out like this will help society begin to realise that infertility is a real disease, and just like cancer (or heart disease, or a myriad other conditions) some get a cure, and others have to live with the consequences for the rest of their lives.  And that this isn't “our choice.”  But that we still matter.

Oh, and an afterthought.  If the Fertility Planit show really does have  “Everything you need to create your family” I'm assuming they have a well-stocked bank, ready for all those women who can’t afford treatments, to make withdrawals.  Or have directions to a leprechaun with a pot of gold.

Stop! I want to get off!

“I want to get off the roller coaster!”  I’ve heard that a lot in the infertility community.  The roller coaster of emotions around infertility and loss is tough to deal with.  We have highs, when we get good news, have a good hormonal rush, feel flooded with hope, or get that big fat positive pregnancy test result.  But we also have the deep lows, as if we’re on a roller coaster plummeting to our deaths, when we get bad test results, the IVF cycle fails, or we’re diagnosed with an ectopic pregnancy, or the baby doesn’t arrive, alive and healthy, as we had hoped or expected.  I’ve experienced this roller coaster, and it’s not a lot of fun.

Once we’re on it though, it’s not easy to get off.  Perhaps a better analogy is to talk about a treadmill.  This analogy worked for me.  When we first visited a fertility specialist, we were shocked at the suggestion that within three months we could be doing IVF.  But then came a second ectopic, and once healed from that I leapt onto the treatment treadmill, with tests and drugs and injections.  And even when there was failure, I didn’t get off, just programmed in another cycle.  After that failed, my fertility guy pulled the plug on the treadmill.  And I’m grateful that he did.  Because I could have kept going.  If there had been options, if New Zealand’s fertility industry wasn’t so regulated and we could have increased the drugs I was shooting up, if he had been less scrupulous about the money he could have continued to extract from me, I might have stayed on that treadmill, I might have increased the speed and the incline, moving into donor eggs, or I might have seamlessly switched across to the adoption treadmill beside it, without missing a stride.  I’m glad the treadmill came to an abrupt stop.  (OK, I could have done without the abruptness of it, as I hit the front of the treadmill and came away with bruises, a bad headache, and a spinning brain.)

But my point is that once you’re on the treadmill (or roller coaster) it is hard to get off.  Even if you want to get off, it’s really tough to slow it down and get off in a dignified way.  I have seen some people pour money into more and more IVF cycles, unable to stop.  And I can see how they did it.  I know the feeling.  It’s an addiction.  An addiction to a form of gambling.  Because that’s what IVF is, let’s face it.  A gamble.  If we poured the same money into slot machines, or on the blackjack table (my husband’s preferred game), our families and friends and society would be shocked, and urge us to call Gamblers’ Anonymous.  And yet they see us do it with IVF.  For my husband and I, it was a risk worth taking.  We could afford it.  And we only tried twice.  But there are infertile couples who gamble their life savings on an IVF cycle.  Some will go into debt simply for the chance to conceive.  And then there’s the emotional cost.  We gamble with our peace of mind, our sanity, our relationships.  And you know, I think that’s sad. 

I think it’s sad on so many levels.  I think it’s sad that some people can get pregnant at the drop of the hat, and others of us have to spend our life savings and risk our health simply for the chance to do so.  I think it is sad that we can get so caught up on the treadmill that we just feel we have to keep on running, that we feel if we stop we’ll fall and never get up again.  I think that it is sad that it gets to a stage where we might be motivated by fear to keep running on that treadmill, running away from a future we are afraid of, whereas we first got on it because we were running towards something. 

I think it’s sad that we might feel pressure from others to stay on the treadmill.  I've been on the end of this pressure.  And I’ve seen it exerted on others.  I’ve recently seen someone come to the end of their treatments, unable to afford anymore.  And yet I’ve seen their internet friends pressure them to continue, suggesting cheaper options (such as IVF tourism, or IUI over IVF) even though this too is beyond their financial (or emotional) reach.  Because the ALI friends are on the treadmill too.  And they’re running, running hard, and they want company as they run, and they don’t want to contemplate any of their number getting off, because they only want to see the finish line, the holy grail, they don't want to see the tripping and falling, and they are incapable of seeing the relief and peace that is possible afterwards.  I think that’s sad too.

And finally, I think it is sad that I am worried about posting this, that I am worried about the reaction to the suggestion that we should dare to question whether it is right to continue to gamble on finding a solution to our infertility.  Yet I’ve said it because I think it needed to be said.  

Biscuits, broccoli and bias

Despite knowing I’ll never be a mother, I am often fascinated with issues of child psychology, and enjoy listening to interviews about this.  Perhaps I can do so happily because of the lack of guilt (I'm not doing anything wrong) and the smugness of knowing I can never be criticised for my child-raising skills or lack thereof. 

Anyway, I recently heard a discussion about babies/toddlers and when they become aware that what they want/like might not be what someone else wants/likes. 

Here’s the example they gave.  A baby is given first a biscuit (in my world, a biscuit is a cookie), and then broccoli.  After trying both, the baby is given the choice, and chooses the biscuit.  And every time after that the baby chooses the biscuit.  Clearly, the baby prefers the biscuit.  Then the mother tries the biscuit and broccoli.  But the mother makes positive noises about the broccoli (mmmm, yum, that’s good) and not about the biscuit.  Then the baby is asked to choose one of these for the mother.  At 14 months old, the baby hands the mother the biscuit.  At that age, baby thinks “biscuit good” and therefore gives it to the mother, even though the mother has said “biscuit bad, broccoli good.”  But by 18 months old, the baby gives the mother the broccoli, recognising that what they like is different to what the mother likes.

One of the conclusions of this was that the Terrible Twos, as they are known, are really just part of the process of the baby learning that what they want is different to what others might want, and figuring out what the boundaries are.

Fascinating, I thought, pleased that we learn this so young, so that when we are adults we are more tolerant.  I thought of Mel’s discussion about the different foods we like, and how I was amused that one of her favourite foods was one of my husband’s (and my late father’s) most hated foods (cucumber if you’re wondering).  My husband and I have different tastes in food, books, and music.  We accept those differences – although I might complain that I don’t get to eat pasta as much as I would like to.  But then I stopped myself.  There are times when I will say “I don’t understand why someone likes xxx, yyy or zzz.”  So maybe I’m not quite as tolerant as I thought.  There is no doubt though, that - like an 18 month old -  I am able to recognise that other people like something I don’t.  I just can’t see the appeal of it.  Others however (people not nearly as enlightened!!) don’t separate their dislike of something with their understanding that we all have different tastes.  My mother-in-law for example refuses to admit that she has different tastes to one of her daughters-in-law.  She talks about V’s “ugly” paintings or purchases (I’m sure she says the same things to V about my tastes) , and bristles if I suggest that they are not, in fact, ugly, but are just not her taste.  She almost has a hernia when we talk about someone coming in and remodelling her house.  She simply cannot understand – and refuses to understand - that anyone would not like the same things she does.  I think we all probably know plenty of people like this.

So whilst we might learn this lesson in principle as early as 18 months old, we don’t always apply it.  Or perhaps it is more accurate to say that we are at times simply unable to apply it emotionally.  And so when other people struggle to accept our lifestyle – that we have “chosen” to live without children – and try to convince us to do IVF/continue treatments/foster/adopt, what they’re really doing is reverting to the mentality of a 14 month old.  They want us to eat the biscuit, when we have embraced the idea of loving the broccoli.

Regrets?

Pearl asked on my last post "If I stop right now and decide I can try to move on, will I regret it a few years from now? "

I can't of course answer that.  I firmly believe that for most of us, we will know when it is time for the decision that is right for us.  I didn't have a choice to stop trying to conceive - my IVF clinic told me/us to stop.  But I/we didn't then look at donor egg, or fostering, or adoption.  That was our choice.  We drew a line and said "enough."  I won't say I have never wondered if we made the right decision.  But most of the time, I know it was the right decision for us.  I don't regret it, and in fact, as time moves on, I am less and less likely to regret.  And I'm not the only one.

Example 1:  Over the weekend, my husband and I were roped into babysitting our adorable 3 year old niece while her parents attended a wedding.  At the end of the evening, my exhausted husband looked across the chaotic room covered in Lego/books/blocks/half a chocolate marshmallow Santa, and said "maybe we should be glad we don't have children."  He was kind of joking, but not really. 

Example 2:  Chatting with a friend who went through pregnancy losses about the same time I did, she commented recently "you know, I look back and think that maybe we were lucky we didn't get what we wanted."

I think our brains are amazing at convincing us that we make the right decisions.  They stop us regretting the choices we make.  I think we are wired to believe our choices are right, and to like or at least accept the lives we have.  It is perhaps a version of Stockholm syndrome.  If we don't, won't or can't adjust to our new realities, we will be miserable.  It's called survival.

Infertility decision making - Part II

Starting IVF was exciting.  I was lucky – I was on a protocol that didn’t involve down-regulation (taking drugs that effectively shut down your cycle and put you in a false state of menopause).  I was full of hope.  Normally gloomy Dr Vintage had actually said he thought we had a very good chance of success.  I’d conceived twice before, and when my tubes were taken out of the equation, he didn’t anticipate any problems.  That was a surprisingly optimistic statement from someone who didn’t normally raise hopes.  I wasn’t scared of the injections; each day when I stabbed my stomach with that needle and injected Chinese hamster hormones, I felt hopeful, buoyant even.  I felt like telling people “I’m injecting myself!”  But I kept it quiet, and only told internet friends, and one solitary IRL friend.

The hope was good.  It kept me going, it made me feel happy.

But it came to nothing.  The disappointment was strong.  But it would have been strong even if I hadn’t had hope.  I’m a great believer in clinging on to hope – realistically of course – during a cycle or early pregnancy.  If it doesn’t work, it’s going to hurt whatever.  I believe there’s an emotional terminal velocity.  After a while, however, far you fall, the impact is still going to kill you.

The second cycle didn’t work either.   There was no point in trying again.  Besides, Dr Vintage wouldn't let me, even if I wanted to.  I wasn't responding to the drugs.  He described my ovaries as being the engine of a car, the drugs the accelerator.  But in my car, the accelerator was already flat on the floor.  The drugs couldn't boost anymore.  Anyway, in New Zealand, there is a maximum dose.  I'm horrified at the doses some women in the US are given.  All in the name of selling drugs and making money - because there is no evidence that - after a certain limit - more drugs equals success. 

We considered donor egg, but the one person I would have asked – my sister – was already too old herself.  And when I thought about it, I wasn’t entirely comfortable with the idea.  I may blog on that another time. 

I asked my fertility specialist if there was any point trying by myself for a few more months.  I knew time was running out.  He said yes, but wanted me to have another HSG first.  So I did.  On my 41^st birthday, I went and had the HSG ... alone.  I’d had one before, and had conceived only days afterward.  So I was hopeful.  I lay there and watched it on the screen in real time.  But I could see, this time, the result was different.  The dye didn’t spill through my tubes.  Not this time.  Completely blocked, a result of all the problems and procedures with my interstitial ectopic earlier that year.  With no other options, I knew I would never be pregnant, never breastfeed, never have my own child.

Infertility decisions?  Not so much decisions, as slamming into a brick wall (emotionally or physically or both).  Occasionally there is an alternative route to take, but sometimes the brick wall is a brick wall.  And so we stepped through the door in the brick wall, out of the infertility maze (apologies for all the mixed metaphors), and into our life without kids.