Silent Sorority

Infertility Survivors Finally Heard

November 7, 2013

Generation I.V.F. Shares Lessons Learned

We don’t get to choose when we’re born or the era in which we live, but we can decide what  lessons we leave behind for others. Author and fellow former fertility treatment patient Miriam Zoll lays out some truths associated with what it means to be a part of Generation I.V.F. in a piece  posted to Lilith Magazine.

Those of us who were mere teenagers in 1978 when the first IVF baby was introduced to the world  listened wide-eyed at what science could achieve. Just 15 years old at the time of Louise Brown’s birth, I was still getting used to the idea of monthly cycles. (A classic late bloomer, I was 14 before I needed to locate the box of stuff my mother had set aside for me when the time came.)

I  knew the fundamentals about the birds and the bees but, like Miriam, there are a number of things I wish others had told me before I embarked on the surreal and often confusing path of trying to make a baby when it takes more than the basics laid out in Sex Ed 101.  Had someone explained assisted reproductive medicine and what it represented to me fully at 29 — when I stumbled into my first infertility screening — I think it would have prepared me better for what was to come. Here are 10 things Miriam lays out in much more detail in the Lilith article (go take a look).

1. You Will Probably Be Physically and Emotionally Traumatized.

2. Your Sexuality Will No Longer Belong to You.

3. You Will Blame Yourself.

4. The Absence of the Sacred Will Deplete You.

5. Treatments Involve Health Risks.

6. Treatments Costs a Fortune. Be Prepared to Confront Your Privilege.

7. Fertility Clinics Are Big Business.

8. Fertility Clinics Are a “Wild West.”

9. Your Treatment Options May Exploit Poor Women.

10. You Will Dislike Yourself.

Now outside the conventional child-bearing years (15-44), we women of Generation I.V.F. bring 35 years of perspective and more than a few scars and hard-won lessons since fertility medicine first arrived on the scene. We offer a concerned big sister mentality to what is often a very convoluted and emotionally charged (and often protracted) experience in pursuit of parenthood — especially if you are among the large numbers for whom fertility treatments don’t work.

In the worst of the treatment trauma, I often wanted to travel back to the time before 1978 when assisted fertility treatment on the scale we have today didn’t exist. I have been witness to that era as revealed in the “Masters of Sex” TV drama, watching as famed sexologist William Masters and his first wife are unable to get pregnant. Accepting biology’s limitations they lived in a time when it was generally understood that some people simply could not have children. As such, there was a category that existed where — while not ever easy to accept — men and women could move on  mostly free of guilt, expectation, or second-guessing about how far they were willing to push their bodies (or other people’s bodies) in pursuit of pregnancy and child-bearing. That was a time when couples who couldn’t conceive children had limited options and quickly reached a point of either living as a family of two or pursued closed adoption. (The latter option created a different sort of loss — but that’s the grist for another blog post).

See also  Sheryl and Erin Mix it Up

Quite a few of us in Generation I.V.F. wish for those more straightforward days even today as evidenced by a follow-up story in BBC Magazine to last week’s “IVF and the Marketing of Hope” piece. Under the headline “I Wish IVF Had Never Been Invented” were stories about the added emotional complexity that fertility medicine presents. I understand where that sentiment comes from.

With the prevalence of fertility treatment options — expensive and risky as they are — there is added pressure felt among women and men well beyond their natural child-bearing years to exhaust their mental, physical and financial wherewithal in pursuit of the sometimes elusive successful pregnancy and childbirth. Oddly, we live today in a society that frames parenting as a consumer lifestyle choice and if you don’t pursue it with all you’ve got (and then some) you are expected to explain why. To Miriam’s excellent list, I would add a few more observations.

11.  Infertility will force you to define yourself outside of society’s conventional view of adulthood.

As long as there are headlines and accompanying media stories about those producing or first parenting children well into their 40s and early 50s, you will not get any free passes to move forward in your life without children. You can expect to be questioned and encouraged to continue pursuit of parenting as long as you still draw breath. The path that doesn’t involve motherhood or fatherhood will require fortitude, strength and a large sense of humor to get you through those sometimes awkward moments when you’re just not prepared or interested in offering up your fertility workup history.

See also  Betty Ford Taught Me To Confront Stigma Head On

12. Until society recognizes that deep trauma accompanies infertility you will often find yourself without the support and healing space you desperately crave.

Empathy and understanding about the grief, loss or trauma associated with infertility and biological and scientific failure is hard to come by when society has been lulled into thinking that your childlessness is self-induced. (It has to be because fertility clinics always succeed, don’t they? oh yeah, and require no money or health risk, right? — um, no, see items #5-7 above). Fortunately, there are a few places online and within communities of those who have taken the time to learn about the very real limitations associated with Mother Nature and fertility clinics. Kind, knowledgeable souls are out there. It just may take longer than usual to find those willing to extend a helping hand as you find your equilibrium and rebuild a new sense of self.

13. Society’s obsession with all things baby is a detriment to more than infertile people.

The unhealthy fixation on parenting as the ultimate (or necessary) act of self-actualization diminishes the value of people in our society whose gifts and talents extend beyond raising children.

14. Babies are not accessories to be created for the enjoyment of their parents.

Babies grow up to be children and children grow up to be adults — those who have their own wants and needs independent of fulfilling a perceived void in someone else’s life.

15. Nurturing is not the sole province of parents; it flows from those who have the capacity and desire to share their humanity.

Some of the most giving, nurturing people I’ve had the privilege to know are also people who have never been parents. Jody Day, for instance, manages a wonderful Pinterest board of women who are not mothers but who have contributed immensely to society and to the generations that have followed them. (I also encourage you to check out her book Rocking the Life Unexpected).

Welcome your additional perspective. What truths or lessons would you care to share?

Linking Around 14 Replies to “Generation I.V.F. Shares Lessons Learned”
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.


14 thoughts on “Generation I.V.F. Shares Lessons Learned

    Author’s gravatar

    Beautiful post, with many useful additional links.
    I guess 15 truths cover it all. I would just like to add something to number 9. Your Treatment Options May Exploit Poor Women

    In the darkest days of my infertility, after 9 failed IVF attempts with my own egg cells, I decided for an egg donation. I am not proud now, that I did that. It does not seem a moral thing to do – to pay somebody for her (or his) genetic heritage. I would never do it again.

    And – I loved the headline “I Wish IVF Had Never Been Invented”. How many times did I wish that in the last few years!


    Author’s gravatar

    Really like this post and nice food for thought. I love your additions especially 11 and Miriams top 10 are spot on. Thanks so much!

    Author’s gravatar

    LOVE the lessons especially yours! I’ve never tried IVF, so can’t really say anything about it.

    Author’s gravatar

    Thanks to both you & Miriam for telling it like it is. I also appreciated the links to the articles about Lisa Jardine & the HFEA.

    Of course, some people just don’t want to hear what you have to say right now (lalalala…)… I am sure some of this would have gone in one ear & out the other when I was in treatment. But you never know when the seed you scatter will take root… there may come a time when they remember your message & are more receptive to it. So keep on speaking out. :)

    I am reading Jody’s book right now — and loving it!

    Author’s gravatar

    These last few posts have been amazing Pamela. As someone freshly out of fertility treatments, not only could I not agree more, but also wish I have known this prior to starting that aspect of our TTC journey. Thanks to you, Miriam Zoll and others for having the courage to speak candidly about this reality.

    Author’s gravatar

    Pamela, this is an excellent blog post that came at just the right time. Your words are always an inspiration and a comfort to me, like a hug over the Interwebs. Thank you. And as always, you are dead on.

    Author’s gravatar

    Another wonderful post from you, and article from Miriam. The only thing I would add is that I wish someone had told me that, in starting this phase of my life (frenetic ttc/loss/IVF), whatever I went through I would still come out okay. And that I would gain perspective, strength and empathy. Which is why I particularly love your last point.

    Author’s gravatar

    In my case, I too would prefer it if IVF had never been invented. I thought I was the only one. I have felt uncomfortable wishing this, and have only articulated it to the few who have “been there” too.

    I feel deeply for friends going through IVF, who ask for advice (quite common). I listen, keep my counsel and suggest they also talk to people for whom it has been successful.

    In my – our – own case of severe Azoospermia, IVF (ICSI) was a always a very long shot. Unsuccessful 3 times, its net effect was to create false hope, prolong the pain and delay the healing. It was only after my husband and I, emotionally wrung out and physically drained after 5 traumatic years, took back control and drew a firm line under any further treatment, that I began to heal, and to make some headway through and beyond this major loss in life.

    By pure chance, my husband’s – unrelated – uncle and aunt had faced the exact same situation 50 earlier. Much younger than we, and in pre IVF days, there were no options for them, they had no choice, in fact, but to accept (ouch). Their chosen route (I don’t say “alternative” or “solution” – because it is neither) was adoption.
    I am not saying their pain was any less, far from it I imagine.
    But I am so glad that they were spared the additional mental and emotional turmoil that today’s IVF treatment means for the – still – significant majority of couples for whom it is totally unsuccessful

    This post is not in any way intended to cause offense or hurt.

    Author’s gravatar

    I never tried ART, but I did undergo what some might call “less invasive” fertility treatments. And I can still identify with nearly all of Miriam’s points. I have been overtly judged, to my face, by other women about my lack of commitment to further treatment, changing doctors, etc. – the message CLEARLY was that I did not want a baby enough. (Is it with glee that I say that none of these women has any biological children either, several years later?) I cannot count the number of times I wished fertility treatment didn’t exist AT ALL. I understand rationally that if a woman merely has a hormonal imbalance or something that can be easily corrected, restoring her fertility and improving her overall health, those options should be available. But in practice, it seems to me, that is never what happens. Nobody gets out of fertility treatment hell without (at minimum) being jacked up on drugs that will at best make you crazy and at worst do permanent harm to your health.

    It’s no good, is what I’m saying. Miriam’s article was really incisive and I hope it will get its point across to those who most need to hear it.

    Author’s gravatar

    Thank you so much for writing this blog. After 3 IVF’s and an adoption screening followed by a deafening silence, it’s so refreshing to find a community of women who are OK with me moving on. I have a feeling that it’s going to be a lifeline for me in the years to come!

      Author’s gravatar

      Glad you found us, Mash. You’ll find lots of understanding and a welcoming community here.

    Author’s gravatar

    Well written, thank u

    In the TEN YEARS it took me to achieve my DD (conceived with the help of an egg donor finally when I was 44 after three naturally conceived PGs ended after two good u/s with a h/b at the end of the first trimester, MANY failed IUIs, 2 failed IVFs with my OE and not one but TWO cancelled DE cycles prior to retrieval due to problems with the donors’ health histories and/or response to Stims) I kept asking myself WHY couldn’t I just give up and accept childlessness as my lot? I who had always thought I’d have one child and if that went well then I’d try for another but that having a child would not be the MAIN focus of my life, went from being a woman content with her career to one trying to navigate rising in a a highly competitive creative field AT THE SAME TIME as I navigated the increasingly invasive, stressful world of fertility treatments THAT I COULD TELL NONE OF MY COWORKERS ABOUT. Sometimes I thought the strain of all that would break me but instead I hunkered down, worked harder, and to get the support I knew I needed to navigate the brave new world of DE IVF I started my own free, monthly support group for women considering it.

    To me DE seemed weird and icky and that I had to do it to achieve a healthy baby felt like an incredible failure. How could I, who prided myself on never missing a professional deadline have missed this most important deadline: my eggs’ expiration date?

    (I was 35 when I started TTC by using a fertility monitor and having intercourse and I thought I still had PLENTY of time to conceive but as I eventually found out, by waiting so long to get started, I had unwittingly waited until my eggs had already turned bad.) Anyway, after my third naturally conceived PG (at age 41) ended after two good u/s with a h/b, I finally accepted that my eggs MUST be bad (as two REs and an OB had tried to tell me) and committed to DE, going on BCP to avoid another “accidental” conception and starting my own free monthly support group for women considering DE IVF.

    I thank God every day for the women of that group. Prior to starting the group, I felt so ALONE and like such a LOSER. When the first women showed up for a meeting, however, I finally realized, “not only am I not alone, I am NOT a loser!”

    Those brave, strong, smart, professionally successful women showed me that we had ALL misunderstood the limits of our fertility but we were strong and smart and capable and together we could help each other navigate the wild and woolly world of DE IVF.

    Because I learned that DE cycles frequently fall through prior to retrieval due to the failure of donors to clear screens or to respond well to meds, I found an agency with a hard working, personable sales rep with whom I could negotiate a “Free rematch until live birth” agreement. Also though most donor agencies require a hefty nonrefundable agency fee up front, this agency allowed me to negotiate a “free rematch until live birth” for ONE agency fee.”

    I also decided to narrow my criteria to qualities that would increase my odds of having DE actually work: I wanted to find a prior proven donor ( proven means “has made a live birth through egg donation” before NOT “has own child through natural means” since I wanted to choose someone who had proven that they knew how to do the meds and had responded well before and who would meet with my RE for an exam so he could weigh in.) I also wanted someone local (which cuts down on cost and risk) and someone with a clean health history who was reasonably healthy—drug and disease free–reasonably bright, reasonably attractive.
    In addition I wanted someone who would agree to let me interview them over the phone (in an interview moderated by the broker) and someone who would agree to allow my RE to turn over a copy of their CA driver’s license and SS card to a third party registry of my choice in case our potential child wants contact with them once the child is 18 or older in case health issues that have a genetic nature come up or in case our child has questions about the donor that we can’t answer.

    It took me a long time to find a donor I liked—not because I was trying to find perfection but rather, I came to realize, because I was trying to find ME. I was trying to find my double—me only younger and more fertile and finally, I came to realize I was never going to find ME. Once I realized that, I felt intense grief because I had to accept that in choosing to do DE I was choosing to become a parent but I was giving up my own genetic connection to a child—and this made me sad.

    I think a lot of women who move on to DE skip this step—partly because REs treat DE like the next logical step—as if there is no LOSS involved. Would they talk to a male patient about having to do donor sperm (DS) the same way? I wonder.


    Anyway, I did finally get DE to work for me…

    While toiling away in a creative, competitive field and rising in that field I FINALLY made it to my first fresh DE transfer (after not one but two attempts had to be cancelled prior to retrieval due to problems with the donors’ health history and/or response to Stims, finally donor #3 (prior proven and local) gave us the egg that became the single hatching blastocyst we transferred who became my beloved daughter (now 4.)

    I am grateful for the GIFT that DE was for my husband and me and only regret that I can’t carry again since we have frozen embryos, and I would lhave loved to try for a sibling for my daughter. Also, honestly? Pregnancy for me was a very blissful EASY state—until I nearly died at the end (of HELLP Syndrome, a rare pregnancy complication, often fatal.)

    Had I known that pregnancy would nearly kill me (HELLP gave me a stroke and ruptured my liver, requiring six months in hospitals and over $2 million in medical interventions) I would never have done DE, of course. We would have tried harder to adopt or we would have finally made our peace with childlessness.

    Anyway, sorry for the long saga. I think that childlessness can be a fine choice, though it wasn’t mine. I also think that women need to be better educated about the limits of female fertility so that they can make informed decisions about when to start trying to have children (or not.)

    Good luck to all!!!!

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