Saturday, 14 September 2013

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.

27 comments:

  1. I find myself struggling even now with people/ friends telling me not to give up. One friend even "photoshopped" a picture of one of my BFPs with the words: Never Give Up. How can she say that? As some point I have to come to peace with however my journey ends.

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    1. Oh yes, the "never give up" advice. All very well for someone who is not going through the same situation or decision-making.

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    2. I've had the same comment. When talking to a close relative about the failure of our last round and how that was probably it for us, she chose to ignore or not understand or be able to cope with the enormous difficulty of where we were and instead said "at least you keep trying". No, the point is that it is probably over. There are very few people who are able to understand without having gone through it themselves.

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  2. We definitely didn't have the same reaction, but I think that often happens with Op-eds, and opinion pieces, really. It argues an idea and either you agree or disagree. Or partially agree, as I did.

    I wish there was better mainstream coverage that presented a wider view of infertility. I wish the NYT didn't only present the outliers: the Octomom or the surrogacy scandals. What about the average people, the vast majority of people, who resolve through one of the many paths out of infertility, all of them damn hard?

    For what it's worth, hospital and doctor advertising is VERY popular here. On one stretch of road where there is only one hospital for 40 miles, there are 6 billboard signs for the hospital, programs in the hospital, or doctors at the hospital. Cancer programs advertise often.

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    1. Your last paragraph? That's why I'm glad I live in NZ! It always surprises me on visits to the US to see all the ads for medications on TV.

      Yes, agree I wish the outliers weren't profiled so often. (There's an article about re-homing adopted children going around Facebook at the moment). That's precisely why I was glad the NYT put up this Pamela and Miriam's article.

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  3. Thanks, Mali. You've done a great service amplifying the messages behind the op-ed.

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  4. I am glad that Pamela and MIriam's article was published. My husband didn't want to pursue IVF. As we have MF infertility, we both would have been dosed with some heavy duty drugs. We would have needed IVF with ICSI, and NONE of this would have been covered by our insurance. And NONE of it, had any guarantee. It certainly would have been a strain on our budget. He is 14 years older than me, which means he was already in his mid-50s when we started talking about it, and just didn't want to hop on the roller coaster of infertility treatments at that point in his life. This has been very difficult for me to deal with. I have had several friends who tried IVF, but were unsuccessful and either remained child free or adopted. I wish none of us ever had to deal with infertility. I'm glad many of us can afford, or are covered, and can get treatment that leads to a baby. But, I get annoyed at the "never give up" and pollyanna attitude that some have. We can't we be seen as successes for living our lives as we are, even without kids.

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    1. Exactly, Iris! I always hate it when we are described as those who are not success stories, when in many ways, I think we are the true success stories. (I've written about that before!)

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  5. Well said, Mali. I've read Pamela's and Miriam's peace and shared it in FB and added a little note with it and someone told me about the "miracle pregnancy" story of his friend's. Doh!!! I managed to reply to him without turning it into a debate, though.

    Anyway, the thing is...those who don't know about the statistics DO (including myself 'coz we never tried IVF) think that the success rate is SO MUCH higher. After we found out we were infertiles, a close friend (at that time she hadn't started TTC yet but was planning to in the future) lightly said, "If that were to happen to me, I know our insurance covers a few IVFs."

    I was like...huh? That easy? You don't even know what it feels like not being able to get pregnant over and over again and you probably don't even know how many drugs that you have to put into your body prior to that, do you?

    From her response, I can tell that she's also bought into the high success rate of IVF. I've also heard many people suggest these things lightly because they don't know what it's all about. Just like the adoption problem. I once linked an article about that and some people were shocked to know how tough it could be to adopt a baby. So I'm all for spreading awareness, one article at a time, though of course there's a risk of their being read from a different perspective.

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    1. Your friend's comments are such a perfect example of why there is a need for articles like this.

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    2. The hard thing is when you work with someone who "is" one of those miracle stories. With no hope of pregnancy and about to have a hysterectomy, she found herself miraculously pregnant. It's a difficult one to deal with.

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    3. Annie, HUGS to you...yeah, it is difficult to deal with that kind of thing...but I hope she understands that not everybody get to experience that, no matter how she wants to encourage others. Sometimes I think for a story like this, I should rebuke it with a totally opposite story he he he he...

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  6. Yes, well said, Mali. I was a bit surprised by Mel's reaction to the NYT piece. As you said, I guess we came to it from different places and took away very different messages.

    As I said in my own comment to Mel, I’m glad most of us seem to agree that more education & support is needed for those going through or considering infertility treatment. And those of us who choose to walk away — and there are many more of us out there than most people realize — should not be (further) stigmatized. That was what I felt the NYT article was trying to get across.

    And I was so heartened to see Aisha Tyler of "The Talk" speaking out about her own infertility experiences yesterday. I thought that so much of what she had to say complemented the messages in Pamela & Miriam's article.

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    1. Yes, we need as many complementary voices out there as we can get, don't you think?

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  7. I agree, I thought the rebuttal piece was WAYYY off base. But I do love your commentary, I think it was definitely on base. I am just glad that the public is being educated that fertility treatment doesn't fix every thing.

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    1. Glad that you shared my perspective. I was a bit nervous publishing this one.

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  8. The Fertility Planit Conference takes place on September 15 and will be available to watch live and on demand on FORA.tv at http://fora.tv/conference/fertility_planit_2013_nyc.

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    1. This made me a) roll my eyes, and then b) laugh. Mr Edwards clearly didn't read my blog. I wonder if he has any idea how ridiculous this makes him look?

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  9. "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."

    Well said. That's the nail in the wall.

    Me, I never had the opportunity to try IVFs- far from it. I suspect if not for the tumor, the gyn-ob would have encouraged me to look into IVF (fertility industry).
    So I'm thankful that Pamela and Miriam have spoken up, and so I'm hoping that more of us folks will do the same, that we're not alone anymore, and that we DO exist.

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    1. Thanks Wolfers. We certainly DO exist! (And well, too).

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  10. Hi Mali,

    scary advertising popping up! It's me, Valery, but don't dare to leave a link to this post, sorry.
    I'm glad you pointed out that sometimes people try more than the "maximum" dose. My (regulated) hospital refused to give me more drugs when the drugs were hardly working. I always thought I was bad for statistics/too expensive/too hard because I read blogs with women trying higher doses. It never occurred to me that I'd (possibly/probably) already had the maximum dose.
    So thank you!

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    1. Valery I understand! (I've deleted one of the advertising responses).

      I also didn't respond to the dose I had. I did some research and saw that there were very few if any studies that showed higher doses were at all effective. So it made me reasonably satisfied that I had done everything I could.

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  11. I'm really glad you put this out there. I too was surprised, and disappointed, but some of the reactions in this community about that op-ed piece, which I thought was really, really good (and exceedingly necessary). I applaud your willingness to take a stand, and to do so so articulately. Well done.

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    1. Thank you! (As I say, I was a bit nervous, for obvious reasons).

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  12. A great post bringing to attention the difficulties of failed infertility treatments and the lack of recognition.

    I'm very grateful for our infertility clinic for not only how we were treated going through the process but also how we are treated now. We still have access to free counseling to help us through this next phase. And if by some remote chance, we did fall pregnant naturally, we would still be able to go to them for support, tests and drugs during the first few weeks - all free of charge because of what we have gone through already.

    Our doctor has never claimed to be our cure, she has however, always remained hopeful and done everything possible and more to help us whilst still acknowledging that due to my age, the eggs aren't just good quality anymore. She is just amazing and I wish we had found her a couple of years earlier.

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  13. I agree with you completely. I also was very disappointing on how Feritlity Planit behaved in response to the article among others; I even tried to get a dialogue going with the writer of The Examiner's article on the "controversy" and nothing. I mean, she called them bitter. I was so annoyed, especially coming from a fellow Infertile. Anyway, you always have a great way telling it like it is, thank you for that.
    BTW, when are you getting on twiiter?

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