Silent Sorority

Infertility Survivors Finally Heard

June 24, 2013

The Forum: What Would Make You Attend a Public Infertility Discussion?

disclosureNew celebrity infertility disclosures have been popping up left and right in popular media. Starting in April there was Nia Vardolos on the interview circuit for her new book, Instant Mom. Nia, as reported in various online publications, tried for nearly a decade to have a family, going through 13 IVFs in the course of pursuing infertility treatments, and failed adoptions before adopting a daughter from the foster care system five years ago.

This past week Tom Arnold and Elisabeth Rohm (also a new author) stepped forward with their infertility confessions in daytime talk shows. In the Los Angles Times, Elisabeth makes a point of encouraging women to include questions about ovarian reserve and hormone levels in annual gynecological checkup discussions. She describes her mission as giving women the courage to speak up and support one another, adding:

‘You’re not less feminine because you can’t conceive.’

I particularly appreciate her simple and direct message of supporting one another. While I haven’t combed through all her interviews I’ve yet to read her advise, “don’t give up, treatments will succeed” and for that I applaud her doubly. She’s smarter than other celebrities who share misinformation on success rates.

While praise is due to celebrities and non-celebrities alike for their honesty as well as their willingness to drop aliases and use whatever perch they have to discuss the stigma and trauma that accompanies infertility, if the only people willing to step up and tell their stories are those whose infertility journey ended in parenthood, the unintended consequence will be to perpetuate the myth that all infertility treatments and adoption pursuits are inevitably successful.

As Cristy (of the Bitter Infertiles podcast team) acknowledged this week in her blog, there’s a tension that exists even within the infertility blogosphere between offering someone hope and not setting up a false promise with mantras or platitudes about one and only one successful outcome.

READ  Non-Moms and Moms Bridge the Infertility Gap

Isn’t it time to broaden the infertility narrative?

As part of our project, Irina Vodar and I are planning a NYC-based forum September 27. The forum will initiate an open, honest dialogue about one of America’s most taboo topics: the hidden traumas associated with infertility and reproductive medicine.

As the world of assisted reproductive technology heralds the birth of an estimated 5 million babies via in-vitro fertilization (IVF) since 1978, there’s an effort under way, a Forum being planned, to acknowledge and bear witness to the extreme emotional tolls, traumas and risks associated with the millions more failed cycles that occur each year–––77% globally in 2012 and nearly 70% in the United States in 2010.

We’re formulating the agenda and speakers in the next few weeks along with a dedicated forum website. Meanwhile, we’d like your input and comments here. We’d also like to see you there and welcome your help promoting this event. (Note: what this forum is not about: selling more fertility treatments.) What would make you want to attend this forum?

UPDATE: We’ll hold our forum Friday, September 27, 2013 at 8pm at the BMCC Tribeca  Performing Arts Center. Details available here.

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The Cycle Relay Forum 26 Replies to “The Forum: What Would Make You Attend a Public Infertility Discussion?”
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.

COMMENTS

26 thoughts on “The Forum: What Would Make You Attend a Public Infertility Discussion?

    Author’s gravatar

    Love this commentary. It makes me want to attend in itself. The recognition of infertility, and that there are several legitimate outcomes. If proximity wasn’t an issue, I would definitely attend.

    Author’s gravatar

    This forum sounds like a great idea. I would like to hear more about life after infertility without kids. We are about to embark on our final ivf. We decided that it is too tolling on the two of us and to give it one more shot. Adoption is a thought but highly expensive and stressful in itself. We are getting used to it being the two of us and our dog. It would be nice to know that we can have a happy life together and learn to enjoy life without kids if this next ivf disappoints us again. Each failure is so heartbreaking. Thanks I may try to attend or via Internet.

    Author’s gravatar

    Hi Pamela
    I would love to attend such a forum too – it would be great to make it available/accessible for those of us outside NY/the US (maybe a podcast version?)

    Interestingly, there was a story in the weekend magazine of Sydney and Melbourne newspaper this past weekend (the Good Weekend) of a well known Australian comedian, whose infertility story didn’t end in success. Seeing these stories are few and far between, I’ve pasted the link here – http://m.smh.com.au/national/the-children-ive-never-known-20130617-2ocz6.html for you and other readers who may be interested. Mary (her alter -ego is Effie) also has a book coming out this week – All I Know: A Memoir of Love, Loss and Life by Mary Coustas is published by Allen & Unwin this week.

      Author’s gravatar

      Carmel, I just read the article in your link and I didn’t even know I was holding my breath until the end of it. It’s really touching, but I REALLY love the ending paragraph. THANKS for sharing!

    Author’s gravatar

    I would be very interested to attend. It would help to know the details ahead of time on when and where so I can plan, as most of us need to fly or long drive to get there.
    Women usually won’t talk about infertility until they are done – both successful and not. I kept it a secret, just telling a few friends. After I threw the towel, it took me 2 years to say it out loud. Now I would want to reach out to others who are silently suffering but do now know who they are and how to help them. Forums like these would equip me what to say and how to say it.

      Author’s gravatar

      Hi Gigette,
      Glad you’re ready to participate! We’re in the process of trying to lock down a date and venue in NYC. Once we have the details we’ll shout them from the rooftop!

    Author’s gravatar

    Sounds fabulous — I would love to attend, although it’s a little far & unfortunately at a busy time of year for me (fiscal year-end). And yes, I would love to see/listen to a podcast later, if one is available. Please keep us posted!

    Author’s gravatar

    Pamela,
    I’m ready to participate!! 3 years, 2 iui, 3ivf, 1 donor egg cycle, and a miscarriage later I’m ready. I would like to discuss the fact that the general public really doesn’t understand the emotional and physical difficulties of “a cycle”… So many times when I try to explain it I hear ” I completely understand .. It took me 3 whole months to get pregnant with my second child.” The general public doesn’t understand that they really don’t understand!! And I know I can be offensive when I try to explain that to them!! – also I feel like I need “a bag if tools” to help myself and other women in my position. Reading your book and Lisa manterfiels book was one tool, but more tools would be helpful! … Thank your for helping me speak out. – Kristine.

      Author’s gravatar

      Glad to hear your enthusiasm, Kristine! It’s great to be among women who want to elevate the conversation and promote compassion in the wake of such a shattering experience.

    Author’s gravatar

    I’d be interested in a forum that isn’t full of success stories. After 6 IVFs(including 2 rounds of donor eggs) and nothing but a miscarriage to show for it at 39, I’m moving on without a baby. Those I became close to during my cycling over the past 3 years cannot fathom how one could stop cycling as they’d “never give up”… Not only am I an alien to fertile women, I’m also an alien to the infertiles who find success..

      Author’s gravatar

      I know, Mrs. McIrish. I know whereof you speak. You’re not alone…

    Author’s gravatar

    I would love to attend. When is it planned for? I am a life coach who specializes in reproductive decision-making. I think is is important to give people the language to describe the experiences and the choices women and couples make, which are deeply personal. People have a tendency to second guess and assume they know what’s best for you. There is judgment and there are influencers either way whether you choose to pursue every avenue to parenthood or you don’t.

    Author’s gravatar

    I would like to hear more about life after infertility without kids. I have a great marriage of 11 years, after 7 IVFs and one failed adoption. We are early 40s now. There is still an ache, will always be there, but despite how great my marriage is, there is still an emptiness that I know we both feel in our hearts. We just don’t talk about it. All we hear around us is everyone’s lives with their kids. All our friends who can’t do near what they used to because there life is just different than ours right now. They are busy raising their families. Which is great for them, I am happy for them. Not that we are unhappy by any means, but there is an emptiness in me. I shouldn’t speak for him, but I feel it is there for him as well. Even our long awaited trip to Italy doesn’t fill all voids. So anyway, life without kids. I love happy endings, I am not bitter, but that is all fertiles hear is all those happy endings, and it doesn’t paint the whole picture if you ask me. I wish I could attend, but I am in the Chgo area.

      Author’s gravatar

      Denise, what you wrote, “All we hear around us is everyone’s lives with their kids. All our friends who can’t do near what they used to because there life is just different than ours right now. They are busy raising their families. Which is great for them, I am happy for them. Not that we are unhappy by any means, but there is an emptiness in me.” That is exactly how we feel. We have a wonderful marriage and happy life, but boy, the world and most people’s social networks are designed for traditional families. We often feel left on the sidelines.

      Pamela, this is my first time interacting on your blog, but I discovered your book this past spring and after nearly a decade since our last IVF it was exactly what I needed. Particularly when close friends whose infertility was so similar to ours found themselves unexpectedly pg–I so thought that was going to be our story (they never could diagnose a cause of our IF—everything seemed perfect). Sorry to ramble, but just wanted to say thank you. I think your forum in NY sounds great, not something I can attend, but what I think would be most helpful is the opportunity to interact with others who did not end up with a child, from whatever means, at the end of the process and the chance to build friendships with people living a similar lifestyle. The two friends we thought would be those people are about to give birth soon. It can be kind of lonely.

        Author’s gravatar

        Glad to connect, Connie. Good to hear that Silent Sorority struck the right chord. There’s definitely a big opportunity to bring a new sense of understanding about those walking in our shoes. Meanwhile, you are among those who understand you here.

        All: Thanks for your thoughts and interest on the forum. The planning continues … more to report soon.

          Author’s gravatar

          Thank you! Not sure where to post this, but wondering if you ever take suggestions for post topics? If so, where would you like those directed?

            Author’s gravatar

            Feel free to send an email to ptsigdinos (@) yahoo dot com

    Author’s gravatar

    Same as loribeth, I’d also love to listen to the podcast, though I can’t possibly join in. :-)

    Author’s gravatar

    I’d like to attend an infertility discussion, but I don’t know if I could take off work, travel and stay in a hotel on my limited budget. If there were an online streaming option (even for a minimal cost), I’d definitely participate.

    In terms of topics to cover, I would like to hear from people representing all the options for resolving infertility (giving birth, having a child through a surrogate, adopting a child, and living childfree, etc.) And I’d like to hear how they decided that the path they were on is the correct one for them and how they knew that.

    Author’s gravatar

    I would be very honored to take part. I’m still in the stage of frequently breaking into tears, but to be able to help others would be a privelage.

    Author’s gravatar

    Would love to join the forum..at least to give a perceptive from the disabled and/or Deaf community who go through infertility…. One gotta admit that this community is pretty much overlooked in many areas, not infertility- but hey, in this, I’d love to speak up. :)

    Author’s gravatar

    My hubs and I recently decided to end all treatments & stop TTC altogether. We have spent the last 10 years trying to make our family of two something more, but it never happened for us. We have gone through 5 IUI’s, 1 IVF, 2 miscarriages and have spent roughly $30,000 OOP. Every failure was another heartbreak and not something we wanted to keep doing to ourselves. For us, it was simply a decision to start living our lives without the “what-if i get pregnant” affecting every aspect of our lives. It was by far the most difficult decision I’ve ever made, but I do feel at peace with the decision….And oh what a relief peace can make in an infertile one’s life.

    From the very beginning I had always been an open book about our infertility, to friends, family, anyone who’d listen really. You cannot go through something as difficult as infertility without a strong and steady support system. I don’t know where I would’ve ended up if it weren’t for the awesome group of women I found during our struggle….I am grateful, beyond measure for each one of them!!

    I love that more tv shows & movies have brought infertility into their scripts! With that said, I absolutely loathe that they all have a happy ending and get their child in the end. This is not reality for many people, including myself. People need to understand that infertility doesn’t always end with the pitter-patter of lil’ feet.

    Author’s gravatar

    Read the title of your post before I clicked over, and had my comment all written in my head: “A short drive.” I have no compunctions about discussing the subject in public (though other people may regret it if I do!). And now I see that the forum is in NY. Ha! I may not be able to make it, but my hat’s off to all those who do.

    Author’s gravatar

    Pamela – I am in! Would love to be part of such a forum. Happy to express and receive. We made a choice to step off the infertility treadmill about 6 years ago. Many solemn, grief-ridden days,, and another significant life-altering experience later, we are finding our way as a family of two. There is not a day that goes by that missing the parenting train doesn’t cross my mind. Some days it’s simply a gentle flutter. Other days it feels much heavier and exhausting. Either way, the intensity of the loss and our sidelined place in this family-centric world, has shifted and lessened. I may never love the outcome, but I can say that life is starting to take on a rhythm that was never anticipated in my darkest hours. I would welcome the opportunity to help broaden the fertility narrative and be part of an effort to restore wholeness in whatever form that may be for other women and men who have faced similar losses. Keep us posted on the where, when and how!

    Author’s gravatar

    My role in attending would be to tell people “It Gets Better,” to co-opt that motto from the LGBT youth support initiative. At age 57, I’m relieved that the TTC years are well behind me and I’ve made a very good life for myself that doesn’t include parenthood. Where my story differs from others is that my husband and I divorced over it … or maybe there are others like me who would want to compare notes, or to talk about the stresses on a marriage, or … ? I’d be happy to support this initiative as a participant or presenter.

    Author’s gravatar

    This would be a great for to be part of, but being in Australia rules me out.

    The main advice that I would offer anyone male or female would be that if you want children to have their fertility tested early. A small cost at the doctor in your early 20’s could save thousands of dollars later in life.

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