Oh, Betty! I So Get You

Betty

“I don’t want you to think I’m a quitter. I’ve fought for plenty in my life. That’s how I know when it’s over. To know when to move on…”

The dialogue from Mad Men this week struck like a thunder clap. I nodded instinctively.

While cancer is the elephant in the room for Betty, I couldn’t help but see parallels for infertility. Her rationale is what I came to understand a decade ago: harsh reality is better than false hope.

Betty’s cool Zen-like acceptance felt familiar. It is clearly not the response those closest to her wanted to hear.  Her husband wants her to pursue aggressive treatment, while her daughter is, understandably, in shock. Betty, though, just knows. She doesn’t imply it is going to be easy.

The stoking of false hope is prevalent in many spheres of medicine — particularly where fertility is concerned.

It’s not easy to accept that reproductive medicine has limits in today’s society. Nobody wants to be perceived as a quitter. The complexities we face today played into why I was compelled to sit down and write Finally Heard.

Like Betty, many of us fought for plenty in our lives. We also came to the point when we just knew it was time to move on. I am grateful that more of our stories are being heard. It was particularly validating this past weekend to read a post from Cristy about the ideas and issues Finally Heard raised for her:

“I found myself shocked when I came upon the section about how society views women who are not parenting after infertility and realizing that prior to infertility I too believed these myths and how it’s thanks to women like Pamela, Loribeth and Mali that I no longer do.”

You can read more responses to Finally Heard here and on Amazon.com. (Many thanks Klara, Lisa, Mali, Cristy, Jody, Tracey, Kinsey and Justine for the reviews and comments — keep ’em coming. I read them all.)

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While combating and overcoming the personal struggle is what many of my fellow bloggers rightfully focus on in their writing, I’m finding myself more and more drawn to, as Cristy called out:

“bravely tackling both society’s view of those living without children as well as the dark-side of an unregulated fertility industry. Though this last part is definitely unpopular, the message that Pamela brings is important for anyone who decides to pursue treatments to consider.”

Seems the messages shared nearly two years ago in a New York Times op-ed Miriam Zoll and I co-authored remain as important as ever. Apparently there is another ‘trade’ show — this one with the brazen hashtag #FertilityShow in the UK this week. Is it me or does that hashtag imply you can sign right up to get some of that fertility thing they’re selling.

Doesn’t it seem there should be warnings — or at a minimum — asterisks galore plastered all over the convention hall or the signage of fertility clinic websites making clear up front (and not buried in the fine print) that THIS WON’T WORK FOR EVERYONE.  Maybe we need a ‘truth in advertising’ campaign started.  A tad more accountability perhaps in the fertility world? Meanwhile, kudos to Miriam for raising this question on her Twitter feed:

So here are some bioethical questions to consider: Where and when do we draw the line? When does the marketing and selling of expensive unregulated procedures cross over into irresponsible territory?

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For those interested in the actual Betty scene, here’s where you can see the Mad Men clip.

 

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17 thoughts on “Oh, Betty! I So Get You

  1. I think there is a certain point where we have to be advocates for ourself when it comes to healthcare. It’s up to us to do our research, seek second opinions, make decisions and live with them. Instead of blaming the fertility industry or other healthcare industries we need to be responsible for ourselves and our healthcare.

    In so many walks of life people look to point the finger when things don’t go as we would like rather than recognizing that we have to take responsibility for the decisions we made. And this is just an in general comment not an attack on any one personally.

    1. Pamela Tsigdinos

      Data transparency and medical claim truths are precisely what’s needed in order to be good health advocates. If the data and research isn’t there how can we make informed decisions?

      Take this recent study concerning the epigenetics introduced via IVF: Genetic markers for fetal overgrowth syndrome discovered

      This story piqued my interest. I’d never heard of this syndrome and I monitor a lot of research in this area. Thank heavens for ongoing research on IVF and cattle — if not for it we wouldn’t have this latest insight: “In humans, this disorder is called Beckwith-Wiedemann syndrome (BWS), and in cattle it is called large offspring syndrome (LOS) and can result in the overgrowth of fetuses and enlarged babies..these disorders have been associated with pregnancies from in vitro fertilization…”

      In doing more digging I see that concerns about genetic changes introduced during IVF were, in fact, raised some six years ago. Check out this story: Picture Emerging on Genetic Risks of IVF. Here’s what really got my attention:

      “Others, like Dr. Alistair Sutcliffe of University College London, say the field is crying out for more information on the risks.

      “I talk on this topic worldwide,” he said. “My talks over time are based on the known literature. And I have gradually become slightly less optimistic about the things that are known about the health of the children” born after IVF and related procedures.

      “Obviously, more knowledge is required,” Dr. Sutcliffe said. “The perfect study hasn’t been done.”

      The bigger question is why isn’t the industry that is profiting from selling services required to a better job monitoring the health and well-being of those in their care? If there’s nothing to hide why are there not more longitudinal studies?

      1. The data and research is there today with the Internet and what’s out there. For my wife and I we were able to find information out there on my very rare condition that included risks and outcome percentages. In some cases it’s not for newer treatments but if it’s not it’s up to each individual person/couple to make their own decision.

        Sure some doctors push treatments but it’s up to the couple to seek second opinions in those situations. It’s not as if these doctors force people to undergo treatments. Everyone has to consent to them.

        1. Pamela Tsigdinos

          I congratulate you on your research skills and ability to step back and apply a statistician’s mindset to your particular condition. Most don’t have the clear-cut diagnosis. Rather they face ‘unexplained infertility,’ which makes them more reliant on trained medical specialists to help them. I’m not saying all doctors are bad nor am I saying that patients shouldn’t try to be informed or do their homework.

          The truth is there is still much doctors don’t understand but it is not stopping them from experimenting with different protocols. Most expect doctors to adhere to a ‘do no harm’ credo BUT where big money is concerned and the promise of a baby is held out — well, I’m not sure why you think it’s unreasonable to ask for greater oversight and scrutiny of doctors and third party providers. I get ‘trade shows’ for selling home improvement and automotive aftermarket but, really, hawking treatments that involve creating life –treatments requiring complex protocols of drugs and invasive procedures? It’s not as though those reeling or feeling anxious or fearing unknowns are in the best position to do a SWOT analysis and deep dive into scientific research. A study just this month from San Francisco State University stated:

          “People often describe fertility treatment as one of the most distressing things they’ve ever experienced,” Sarah Holley, an assistant professor of psychology at SF State and lead author of the study said. “It’s a prolonged process filled with uncertainty, and often it is very expensive. It can be very physically demanding, especially for women. It can have a profound effect on a couple’s relationship.”

          Also, once inside the vortex it’s not easy to walk away. As one blog reader wrote: “After the first cycle, I was of the mind that no sane person would do more than one or two, after the second, I realised the gambling mindset that takes hold – it is always the next cycle/hand of cards/race that will trick. A lot of clinics seem to encourage this, which is depressing.”

  2. Great post Pamela. Have been exceptionally busy over the last few weeks but am hoping to get a chance to sit down and read ‘Finally Heard’ this coming weekend. But, just to say, I feel blessed to be part of a worldwide group of women that really understands this issue at the profoundest level – for me you have led the thinking and the way forward. For that I thank you. Jessica x

    1. Pamela Tsigdinos

      Sending the admiration back to you, Jessica! I admire your courage and your willingness to step forward. It’s not easy to row against the current.

  3. Thank goodness we can “move on” in a much happier way than Betty does — if we choose — even if it’s not the future we had once hoped for.

    So enjoyed “Finally Heard.” My review will be up in the next day or two. :)

    1. Pamela Tsigdinos

      Thanks, Loribeth! I look forward to reading your review…

  4. I see parallels between Betty’s comment and infertility too! In fact it reminds me of a recent conversation I had with a friend after she expressed her disappointment that we “quit” (her word, not mine).

    I wonder if these so called fertility shows are more common in the UK? A London friend and her wife went to a huge fertility show back in November. I recall her saying that it should have been called the “Assisted Conception Show” instead of a fertility show.

    The questions you posed can’t be easily answered. Of course money is one of the central themes of ART, but I also think that doctors are driven by some combination of intellectual curiosity and peer competition. Additionally I think that doctors are pushed to test the limits by patients who just can’t envision any outcome but a baby and are willing to try anything to get there (short and long-term side effects and cost be damned). I would also be willing to bet that doctors are “in bed” with big pharma too (which makes conflict of interest alarm bells ring in my brain). It just blows my mind that many of the treatments are essentially experimental yet there is no oversight from an Institutional Review Board for research on human subjects which attempts to ensure that participants are not subject to physical or psychological harm.

    I completely agree that there needs to be transparency. When we received the results (using this term loosely; we were just told x was high, y was low, not given any numbers without prodding) of testing and our treatment protocol, we weren’t given time to think about it or do research, it was just assumed that we would do it. Thankfully I’m fortunate enough to be able to access medical literature which played a huge role in the decision making process. The clinic was all for IVF but the literature showed that we had abysmal chances of success given our particular set of issues. We said no. They treated us like crap. Whatever. We made the best decision for us.

    Sorry for the length…I’m good at many things but brevity isn’t one of those things.

    1. Pamela Tsigdinos

      You raise some very good points in your answers, Kinsey. It reminds me of a UCSF presentation where the presenting doctors acknowledged how little is understood about the health impacts of treatment on women and the children conceived. The RE seemed both intrigued and driven by both the scientific challenge as well as the desire to succeed.

      A young reproductive biologist from Portugal wanted to know more about studies indicating that children conceived with IVF had a higher incidence of diabetes, a concern introduced by the RE in his overview. (More on that UCSF panel here: IVF may raise risk of diabetes, hypertension and cancer in later life.) The oby-gyn professor and RE both acknowledged that a lack of funding for longitudinal health studies meant insufficient data and reduced amounts of in-depth knowledge about health risks created by fertility treatments.

      Aghast, the reproductive biologist asked incredulously, “how can we make treatments available if we don’t know the risks associated with them?”

      Full post and a link to the doctor presentations here: http://blog.silentsorority.com/brave-new-world-getting-closer/

  5. Katie

    I agree the scar of a failed IVF treatments is deep and permanent. I only made it through one IVF that failed. To his credit, the doctor told me my chances were slim and gave me no false sense of hope — but I had to try. I was desperate and didn’t want to look back and think “what if.” When a situation is so emotionally charged as fertility is in play–I don’t think any doctor or anyone else could have talked me out of even trying. I was going to be the 10%. So yes–it hurts deep but I don’t regret trying. But I fought the battle and now it is time to “move on.”

    1. Pamela Tsigdinos

      “When a situation is so emotionally charged as fertility is in play” — yes, Katie. I remember the vulnerable state of mind I was in when we pushed ahead with IVF — equal parts fearful and hopeful.

      That’s a volatile mix. Contrast that to when I visit my allergist for hay fever and rhinitis. My expectation is that he will help me minimize seasonal nasal/sinus congestion. I don’t need or expect my doctor to ask about my state of mind — but funny enough he usually does. (He has an excellent bedside manner.)

      My expectation, though, at three different fertility clinics during my 30s was different. I was a scared patient coming through the door. I expected them to see me as a whole person trying to make sense of complex reproductive malfunctioning — confused, emotionally volatile…and yes, desperate, which is why I believe extra care and attention need to be factored in. I was also fearful about the risks and health issues we might be creating for a child conceived but instead of providing a complete picture, I was in a very real sense told ‘take it or leave it’ and inserted into a tightly controlled, dehumanizing cattle call scheduling process.

      My hope is by raising some of these questions and making clear that reproductive medicine — unlike say, a ‘face lift’ meant to address someone’s desire to combat aging — that there is a bioethical need here that reaches beyond the physical to the psychological to ensure that the whole patient is being treated.

      I’ve also often wondered why there is no ‘best practices’ protocol to help a patient in moving on…

  6. One of the things I struggle with the fertility industry is this push to go down certain roads while promising things that aren’t always a given. What I mean is there’s a push to treat those with infertility using IVF and then push them out the door as “cured” once they achieve pregnancy. Why are women who have this diagnosis not being followed more carefully? We know that hormonal imbalance due to PCOS has impacts of health for a lifetime, the endometriosis is detrimental and that clotting disorders are linked with autoimmune disease. Yet there is zero focus on preventative and holistic care. Instead the push is on egg freezing and “trade shows.”

    Robert Edwards, one of the developers of IVF, has stated that we are long overdue for focusing on research and determining the root causes of this disease. I do believe that treatment needs to available and accessible to everyone diagnosed with infertility. But these treatments should not be marketed as cure-alls and there should be a push for patient education and research. Just like with cancer or diabetes, infertility is more than simply surviving treatment. Surviving becomes a way of life.

    1. Pamela Tsigdinos

      Could not agree more, Cristy!

  7. Hear hear, to Cristy’s comment!

    I think there are often parallels between cancer or other illnesses and infertility. But because infertility isn’t seen as an illness by the majority of society, it is treated as something different, and fertility treatments are seen as elective. Conferences about fertility research and treatment, about surviving infertility, techniques to cope with it, and life afterwards, would be one thing. A conference people very close to me attended about Cystic Fibrosis recently was purely for the benefit of those who suffer from CF , and their families. I cannot imagine a Cystic Fibrosis (or Cancer, or Trigeminal Neuralgia) “Show” based on a commercial promotion of treatment providers, in the way that we see “Fertility Shows.” Abhorrent!

    You ask, “Where and when do we draw the line? When does the marketing and selling of expensive unregulated procedures cross over into irresponsible territory?” This question needs to be asked and addressed more. The question is asked in New Zealand, and the line is drawn to an extent, as the industry here is very regulated, as I’ve mentioned before. I do feel it needs to be debated more here too (and have only just thought that maybe there’s a role in this for me), but definitely agree that in unregulated societies, this needs to be debated (and beyond the whole, “just adopt” knee-jerk reaction) with goodwill and knowledge and experience and openness everywhere.

  8. Becky

    I just wanted to thank you for this post and for this beautiful site of yours. I have felt so incredibly alone in this journey…I don’t know a single person who is like me…not a mom after years of battling infertility. It’s hard enough to go through, but going through it alone is like another layer of torture! So happy to have found this place where I feel a little more understood. :)

    1. Pamela Tsigdinos

      Thanks, Becky. Glad you found community and fellowship here. That’s exactly what I’d hope to achieve when I first sat down to create it…

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