Infertility is Many Losses

December 31, 2009                                                                  Also published on iVillage:

By Kate Johnson

“There is a residue of experience in life that continues to shape us long after the actual experience has ended. We stretch and grow and learn a lot while living through it. Then we learn a little more after we’ve had some distance. We carry from such experiences indelible memories, and if it was a particularly bad experience there’s usually some unfinished business.”

So writes Pamela Mahoney Tsigdinos in her book Silent Sorority the story of her journey through infertility, and finally her coming to terms with childlessness. At 46, Pamela is two years older than me. Like me, she is coming to the end of her reproductive years, which for both of us were scarred by infertility treatments and failures.

I have never met Pamela, but she contacted me a few weeks ago and asked me to read her book. I doubt she knew my story.

Over my years of infertility I have honed my journalistic skills into an expertise in reproductive medicine – writing for both physicians and the public. But I rarely write about my personal battle. Pamela wanted my comments on her book – which I gave her. But I also took a risk and shared my story. It was a risk because, while my journey through infertility was very similar to Pamela’s – my road branched away from hers when I finally conceived. I am the mother of a 13-year-old girl – our one success in a string of failed treatments, both before, and again after she was born.

This huge difference weighed on my every word when I wrote to Pamela. “While I feel that I can relate to your history, and even to your present, I realize that this really can’t be so. So please, take what I have to say knowing that I know I am poorly qualified to say it,” I wrote. Poorly qualified, yes. But not unqualified.

I know that from her position, carrying the grief of involuntary childlessness, having her pain compared to that of someone who struck the jackpot and got pregnant must seem like a cruel joke. I get it. But yet, we do share much in common. While I am blessed with motherhood, and she is not, we both have broken dreams. As she writes, we had both “spun buoyant, cotton candy plans” for our futures – which included normal conceptions and several births. I got the one birth, for which I am eternally grateful, but my daughter’s conception was high-tech, expensive and painful. And for some of those who knew me back then, my angst-ridden quest for motherhood was so strange and foreign – they couldn’t relate.

Still, to this day, sitting in a room full of other mothers, I realize sometimes that I feel alone. I am a veteran of a war they never fought. I am an “infertile mother” – a strange concept, an oxymoron.

Pamela’s book was hard for me to read. It brought back a lot of  the pain of infertility – the unfinished business that she writes about. Now, I am facing some of that unfinished business – the end of my reproductive potential – the end of pregnancy hope – just as a new milestone is reached in the world of infertility.

Last month the World Health Organization recognized infertility as a disease – a huge step forward for those of us who have experienced this ambiguous loss. As William Gibbons, MD, President of the American Society for Reproductive Medicine so aptly stated, “For too long those suffering from infertility have had their condition slighted or even ignored. Insurance companies don’t pay to treat it, governments don’t put adequate resources to study it and consequently patients suffer. We hope that this international recognition that infertility is, in fact, a disease will allow it to be treated like other diseases.”

Pamela’s book offers rare insight into what Dr. Gibbons describes – how infertility patients often feel slighted and ignored. They are the silent sorority  – and fraternity – whose suffering is often very isolated because the fertile world cannot relate. Whether our personal journeys end with a child, or with childlessness, the fact that the war we fought has finally been recognized by society offers validation of our suffering.

Silent Sorority is a brave book and a gift to all infertile women, whatever stage of the journey they may be on. While it is mostly about Pamela’s struggle with infertility, the final chapter is about her settling with it. This is the chapter that brings me peace. “In a way, this book was your labor, and the last chapter was a birth – or rebirth,” I told her. Pamela also shares her thoughts on infertility on two blog sites: Coming2Terms and Barren Not Beaten

5 thoughts on “Infertility is Many Losses

  1. Thank you, Kate, for revealing your own personal struggle with infertility and how it has impacted your life. Too often in the worst of the infertility struggles women end up focused on what’s been referred to as the “pain olympics” — ranking and assigning value to which development or outcome netted more suffering or heartbreak. This only serves to divide and create new roadblocks to understanding. Regardless of where we end up, we all share painful memories that connect us and create an often unspoken bond. In taking the time to gently and respectfully examine the magnitude of infertility on identity, relationships and planning for the future — regardless of the outcomes — we can all learn to appreciate each other in a deeper way. I’m thankful you had the courage to share your experience with me (and through your blog with your readers). All the best, Pamela

  2. Kate- I took comfort in reading this. I have often felt alone even though I too have been fortunate enough to conceive once- and have a beautiful son which we are grateful for everyday- your words are truth. I can relate to so much of what you are saying for we are still trying. I suspect the actual sharing is part of the unfinished business. Thank you for writing this and for all of your support. I recently received an email from a colleague who finally conceived after being told that “your eggs are old and you’re likely never going to conceive.” She told me that I had given her hope through my story and it was that hope that led her to not give up herself. Your story is important as it can help so many.

  3. I wish the mainstream media would cover the message in “Silent Sorority” and your blog entry. Too often we get the tabloid approach—the focus on “Octo Mom” (I hate that name!!), the woman who kidnaps other people’s babies, Jon & Kate.

    It’s a good first step for WHO to declare infertility a disease, but we in the United States need to get the insurance companies to do more to cover infertility.

    The thing that got me while I was trying to get pregnant was watching the, dare I say smug?, expectations of my friends who blipped along thinking that everyone got pregnant (ooops! got pregnant AGAIN!!! silly us!!!) whenever they wanted to. This is what is “supposed” to happen.

    My dad died when I was 16; this wasn’t “supposed” to happen, and I really hated it when I saw smug intact families after that for awhile. Ditto with the pregnant ladies walking into the baby stores.

    And now with time I see other things that weren’t “supposed” to happen. My one friend who didnt understand the pain of infertility got pregnant quickly but delivered extremely early and had a child, now fine, in the NICU for months.In the past few years there have been two families at my church that have lost a mother and a young daughter in car accidents. That wasn’t supposed to happen either. And 9/11….

    I hope more people can walk in others shoes and reach out and just listen or acknowledge the pain of others even if they cannot understand it. Maybe then we would all feel less alone.

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