Silent Sorority

Infertility Survivors Finally Heard

January 19, 2016

Many Miles Later: Culture, Medicine and Us

In my ‘gentle yoga’ class the instructor began the weekly session as she always does. She asked us to close our eyes and turn inward to focus on our breathing. In a soft voice she encouraged us to explore any places in our body that felt stuck and to direct our breath to those areas. While I engaged in my physical inventory, breathing into those stuck places, my mind also gently skipped across a series of conversations, written exchanges and snippets of ideas that had been haphazardly parked.  This blog post is an attempt to dislodge some of them and open up some new thinking in our culture. No firm conclusions at this point just some preliminary observation and questions. Welcome your thoughts.

The ideas began stacking up in mid-December. First, there was an email that contained this sentence:

 I am a scholar of cultural rhetorics at Michigan State University working on an article on stereotypes of and stigma regarding infertile people…

Cultural Rhetorics.  The phrase is a bit lofty sounding, isn’t it? Time for a search online. One university definition: “the language that defines Culture Rhetoric study involves making sense out of practices and customs, usually, items that are associated with a particular culture especially through their way of life.”

If you’re like me, your next reaction would be: go on, I’m intrigued

The initial email led to a fascinating hour-long phone call just before the holidays.  I hope to share the article once it’s complete.

Truth in Medicine. I’ve long wondered why ob/gyn’s didn’t have a greater share of voice in our culture when it comes to the reality of biology and the various ‘fertility’ procedures peddled so boldly.

Earlier this month I had an exchange with a UK ob/gyn and professor of complex obstetrics who wrote, “There is undoubtedly too much market hype about EVERYTHING to do with assisted reproductive technologies! And there is a kind of stigmatisation/ shaming of women who ‘fail’ or give up or… whatever… I too am very angry about how exploitative my own profession can be.”

[bctt tweet=”There is too much market hype about EVERYTHING to do with assisted reproductive technologies!”]

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The professor was kind enough to read my ebook, Finally Heard and shared this:

“I think this ebook was really interesting.  I’m appalled by how all university students I meet seem to think egg freezing is standard/ safe and effective. We do need to get to them young! And change the world so that trying for a family earlier is easier, and so fertility treatments are cheaper (and part of universal healthcare) and accompanied by mental health support and realism.  As you so rightly point out, we also need to calm down the nastiness and competitiveness of  ‘the way to be a woman.’  Oh dear – and I was so hoping the world would be a better place for women nowadays than when I was protesting in 1970s.”

Me, too. More education and work to be done, yes?

Ripple Effect. My last blog post made some waves around the Internet and led to some additional observations. There was this piece written in Italian, which prompted a blog pingback. (Seems the author saw my blog post also referenced in this posting from the Center for Bioethics and Culture.) Tonight, I saw this piece, Does Persistence Really Pay Off with IVF?, written by Amy Klein.

The Sisterhood. I’ve been a member of various forums, message boards and online/blog communities over the years. As many blog readers know, it’s not easy to stay on top of each as they morph and evolve with each new tech/app iteration.  In my inbox this morning was an alert concerning a thread started some time ago that had gone dormant. It was restarted by a women with the alias ManyMiles. She pinged the community to see who was still out there with this:

hi everyone. I know there hasn’t been much activity here for a while. I’ve often thought about this discussion and those who have contributed here and wondered if anyone was still around…
I remember when this topic was started almost 2 years ago, towards the end of the time I still actively read and participated in this site. I lurked here for a while, continuing treatments…hoping I didn’t have to admit to myself that I belonged here, in this child free space. I was so optimistic when starting down this journey so many years ago. It’s interesting to think of the person I was back then, so impatient to finally resolve this little problem so I could move on with my life. Naive enough to assume that of course I’d be one of the lucky, allowed to move on if I could just remain determined and positive. I’m still here. Belonging as much as I ever did and more. Its extremely humbling. I feel like I’m stuck on a loop. The longer I stay on it the harder it will be to ever break away from its well worn path. Not sure if I have the courage jump off.

Well Lit PathI shared a few thoughts and blog pointers directly on the restarted thread, but another thought struck me as I lay on my yoga mat.  Each day there are those like ManyMiles just now entering the dark arena I first stumbled into nearly a decade ago.  Perhaps the best way to help is to simply to say, “we’re here and you’re not alone.”  Hence the image I chose of lanterns lighting the path.

As the yoga-led breathing opened up new spaces and released knots along my neck and shoulders, I had another idea. Why not breathe new life into some of the older posts or now-offline conversations? (Thankfully, I saved a few through the Internet archive Way Back Machine). Will pick those that best illuminate and resurface with some new thoughts in the coming weeks. No better way to mark my imminent nine year (!!) blogoversary.  Until then, blog readers, the floor is yours…

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Pop Culture 15 Replies to “Many Miles Later: Culture, Medicine and Us”
Pamela Tsigdinos
Pamela Tsigdinos
Writer, blogger and, oh, yeah, infertility survivor. My memoir, Silent Sorority, tells the whole story. There's a movie in there somewhere. Given the quirkiness needed to relate it all I'm thinking Jennifer Lawrence would be a good fit.


15 thoughts on “Many Miles Later: Culture, Medicine and Us

    Author’s gravatar

    Food for thought Pamela, I look forward to reading more.
    I agree about being a beacon of light. That is one really important thing that we can bring to others and we should remember this. A client recently said to me that ‘if you can do this, I can’ and I firmly believe that to be true. We are not special, we’ve done whatever we needed to do & it’s an honour to light the way for others.
    I love this quote from Elizabeth Gilbert ‘when you are standing in that forest of sorrow, you cannot imagine that you could ever find your way to a better place. But if someone can assure you that they themselves have stood in that same place, and now have moved on, sometimes this will bring hope’

      Author’s gravatar

      Beautiful quote, Lesley! Thank you for sharing. It’s an honor to share this path with you.

    Author’s gravatar

    1) I’m still incensed by the ‘Persistence Pays Off’ article. If you have enough data points and you control enough variables you can “prove” almost anything. I’m really glad that you and other skeptics have been publicly questioning this study and presenting an alternative viewpoint.

    2) I realized for the first time a couple of years ago how little the average OB/GYN knows about helping a woman get pregnant. If nothing else I think this person should be a first line emotional support for women/couples who are struggling to get pregnant.

    3) Speaking of rhetoric, might I propose using person-first language? Infertility is part of me, but it doesn’t define me, so I think the person should come first. For example: “woman who has infertility instead” of “infertile woman.” Maybe I’m the only one bothered by this or maybe I’m feeling extra ragey this morning (thanks, hormones!), but I thought I’d throw this out there.

    4) The “been there, done that, have the t-shirt” aspect of this community has been incredibly validating to me and frankly one of the biggest catalysts for healing to me. There’s something about another person reassuring me that they once felt that way too and that I’m not a horrible person for feeling whatever it is that I’m feeling. As CS Lewis said: Friendship is born in that moment when one person says to another: What? You too? I thought I was the only one.”

      Author’s gravatar

      I totally agree with you on all 4 points Kinsey! My supervisor forwarded me the persistence article because he thought it would help (?? WTF ?? – I had already told him we decided that ART was off the table. Not to mention the obvious biases and flaws in the report. Or that I already read all those articles WAY before the general population knows they exist).
      The first person thing is something I have been thinking about a lot lately. Someone “has” learning disabilities/cancer/heart disease/diabetes. But we “are” infertile. It’s weird. The finality of the phrase equally scares and angers me. I don’t even like to think it. But it’s hard to move to person-first language. Especially when infertility isn’t thought of or talked about as a disease at all.

    Author’s gravatar

    Some great stuff here, Pamela. I’d love to see the cultural rhetoric article when it comes out. And I love the image of lanterns along this road less travelled, lit by those who came earlier. (My anti-spam word is “sisterhood” — seems appropriate!)

    And I love the idea of looking back on old posts & conversations. :) So many of the message boards and email lists I lurked & posted on when I first exited infertility treatment in 2001 no longer exist. :( Many of them were often part of larger infertility sites that have closed, merged or revamped over the years, as you noted. While the childless/free or “moving on” boards were never as busy as the ttc or adoption-related forums, they were invaluable for those of us seeking comfort, and I am sure there were far more lurkers than posters. I often wonder what happened to some of the women who used to frequent these forums, and It makes me sad to think of all that collective support and wisdom, gone at the touch of a programmer’s button. :(

    Author’s gravatar

    Another issue I would like addressed is the rate of cancer in women who undergo hormone treatment to facilitate conception, and the corresponding rate of producing a live birth. I read an article in a medical magazine recently by an oncologist whose wife gave birth at 43 and at 46 she was diagnosed with stage 4 breast cancer. I assume she had fertility treatment because it was not the focus or even mentioned in the article. The article was from the perspective of a dr who knew what his wife was going through before she did because of his expertise in oncology, and his emotional struggle with it and her death. I have a high rate of cancer in my family and would not take any medication as part of my fertility treatment. However, my dr. never raised the issue of cancer or discussed the risk of hormone therapy in relation to cancer, and I wonder how many women have developed cancer because they blindly followed their infertility dr.’s advice.

      Author’s gravatar

      Totally agree, Maria. There have been more than a few high profile cancer cases where fertility medicine questions were left unanswered. Elizabeth Edwards and Joan Lunden immediately come to mind. Makes one wonder about all the unpublicized cases…

    Author’s gravatar

    I love the post commenting on the NY Times article about persistence – and not just because she quotes you. ” … had the Times focused on the conservative estimates in the study they would have seen there was no real improvement in IVF outcomes after the third cycle …” Now that isn’t news to any of us really. It certainly matches the research I had done a good 12-14 years ago. It’s such a pity that message is buried under the “never give up” clamouring from those who do find IVF delivers for them, and of course, from the industry itself.

    Moving on to the second part of your post. When I was visiting, then volunteering on, an ectopic/infertility messageboard, I became very aware of the fact that weekly, even daily, there were women coming behind me experiencing the same fears and emotions as I had experienced. That was one of the reasons I started my blog, because I wanted to be able to continue to address issues that new women (and some men) who look for help when they have to embark on their no kidding life. And it is why I am always so pleased to see new bloggers come along, because people want and need to find their tribe, to find other people going through the same things. What we went through is still relevant though, and so I really don’t think that our old blog posts have a use-by date. So I’m looking forward to the idea of pulling out some of my not-so-old posts, and particularly excited at the prospect of seeing yours, as I wasn’t blogging nine years ago, though I was very much part of a sisterhood dealing with loss and infertility. I am so pleased my sisterhood has broadened to include you and all the women who visit here.

    Author’s gravatar

    I love the idea about breathing new life into some of the older posts!

    Author’s gravatar

    I’m still steamed about the NYT article. Even if the data isn’t skewed, a 60% success rate after 9 (!!!!!!) cycles is NOT something to rave about. If nothing, it’s a glaring scarlet letter for the whole industry and a called for research in understanding the underlying causes of infertility (because pregnancy is not a cure, regardless of what society may think).

    I completely agree with Kinsey’s points. Particularly with the OB/GYN. It boggles the mind that pregnancy and childbirth are the focus for women’s health.

    Thanks for all the thoughts and links. Lots to ponder and discuss for sure.

    Author’s gravatar

    Your blog reminds me of the importance of not letting hope replace reality.

    Reality isn’t always quantifiable. Things do happen that can only be explained by magic, mystery and the miraculous so let’s give ourselves a shake. Becoming pregnant is not always a matter of willpower. Sure, we can do all the “right” things to facilitate it happening but we don’t get to control the outcome. Science can transfer an embryo to the womb but it can’t implant it. Ultimately, nature calls the shots.

    This is a hard truth to accept. Technology can replace hearts, kidneys, livers, eyes, knees, hips and now even hands and faces. Surely, obviously, it can’t be more complicated to get an eager sperm to penetrate a receptive egg. After all, that’s their job. Well, the reality is that getting a baby can be just as much a mystery as not getting a baby. How otherwise can we explain the unlikely people who do get babies and the likely people who don’t? My mother-in-law’s doctor told her that she would probably never get pregnant. Then she had 4 children with half an ovary, all after the age of 34.

    “Truth or reality is avoided when it is painful. We can revise our maps only when we have the discipline to overcome that pain. To have such discipline, we must be totally dedicated to truth. Mental health is an ongoing process of dedication to reality at all costs.”
    – M. Scott Peck p. 50 The Road Less Traveled.

    The internet has introduced my wife and me to many people who have, like us, eventually, faced reality and, though kicking and screaming, learned that mental health can be expressed in ways that we didn’t even know existed. Each journey of fertility that didn’t work out is painful, lonely and very real and deserves to be acknowledged with kindness and respect. The truth is that we, on the receiving end of reproductive technology, are way ahead of the indifferent purveyors of pain masquerading as helpers. True helpers don’t hide statistics and agendas. Doctors are scientists. Scientists, I was taught, hold the search for truth to be paramount.

    There are, fortunately, some scientists who are committed to their calling. I like this story: In the 1986 Report of the Presidential Commission on the Space Shuttle Challenger Accident, Richard Feynman’s last recommendation states: “For a successful technology, reality must take precedence over public relations, for nature cannot be fooled.” How true.

    There are a few lucky lottery winners out there. ART is, to a large extent, a lottery. Basing an entire industry on a murky statistical probability is unethical and unprofessional. It exacts a cruel high human cost from the majority non-lottery winners to support the possibility of a magical, mysterious, miraculous (and let’s be serious, inexplicable) outcome.

      Author’s gravatar

      Thank you for your comment, Brian. You’ve hit the nail on the head. I plan to build on your points in my next blog post.

    Author’s gravatar

    So much interesting food for thought here. It think all of us walking this path become unwitting scholars of cultural rhetorics given the altered lens we end up having to view the world through. Looking forward to that article.

    The perspective on the label “infertile” made me think….although I have to admit I was a bit alarmed that I might have to rethink my “infertile on board” sign I have on my back windshield. Doing away with that would be a shame, but I digress…..either way I’m now committed to using the phrase “my husband and I have infertility” in a sentence sometime soon, as that’ll be sure to jostle someone off their rocker.

    And Brian, I’m not religious but Amen anyway to your entire comment. The space of “highly unlikely but not impossible” that infertility and subsequent treatments catapults so many of us into is unfortunately highly romanticized.

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