Note: At the end of this post you'll see an opportunity to share your thoughts about the "silent disorder" with a wider audience.It's been a few weeks since I read the story "
Blogging Infertility" in the journal
The New Atlantis. This in-depth article (where you'll see lots of familiar names and blogs)
takes a look at the infertility blogging community and some of the issues and challenges facing those of us who live with and write about this "silent disorder."
In a wide-ranging interview last December I shared many thoughts and experiences with the author of the piece. I was reminded about one of the quotes that made it into the article during a dinner this week with work colleagues.
Among those seated at a long table were people newer to the organization. As with any meal that has an element of team-building to it there was lots of small talk exploring non-work topics. With most everyone on hand in their 40s or early 50s there were abundant stories about children and the challenges of parenting. During one awkward moment (awkward to me, anyway) a question came my way, lobbed over two or three others, aimed at involving me in a group discussion at the other end of the table.
"Pamela, you have, what two boys? or is it a boy and a girl? so you know what it's like to..."
I responded immediately, startled and confused by the question: "I don't have any children."
"But you have pictures on your desk of you and children..."
"They're my nieces and nephews..." I replied, attempting to clarify.
"Oh, so you don't have kids?"
"No, no kids," I said.
There was a minor pause before the person to my immediate left jumped in and the conversation continued without me.
I wanted very much to elaborate, to tell them that my husband I had spent a dozen years trying to conceive, that we'd pursued outside help at a research hospital, that we'd passed all of the tests with flying colors but flunked the final exam -- more than once -- but with the waiter bringing our entrees and the din of the restaurant and the buzz kill associated with my story, it just didn't seem appropriate then and there to open up my life to them. Sigh. Instead I was left feeling frustrated and closeted. And that's where my quote in the article comes into play.
The reporter explains the dilemma:
"...many never tell their family or friends that they’re undergoing
treatment, or only tell them after treatment is over. 'It really is a
double-edged sword,” Tsigdinos (me) says. And, perversely, it’s a dilemma
made more complicated by modern technology. 'I often wonder,' she says, 'Was it harder to be infertile in the Fifties [than today]? Because in
the Fifties, at my age, people would say, ‘Gee, they couldn’t have
children’ because birth control, the Pill, didn’t exist.... Today,
there’s more ambiguity. People don’t know if you
elected not to have children, if you
couldn’t have children, if we made the ‘mistake’ of waiting too long."
And that ambiguity challenges me more and more often as I get older and live in the shadow of unsuccessful infertility treatments. I don't want to make a federal case about what my husband and I lived through, but I also hate the (usually wrong) assumptions and insensitivities that come with my circumstances. Why, I wonder, do we infertile folk feel it's necessary to go out of our way to protect others from the reality of our experiences, to suffer silently wishing we had a repertoire of our own child-related stories to tell. (Well, we do actually have plenty of stories but they're more medical in nature.)
For a split second, as the entrees arrived, I considered telling it like it truly was but then what? Given the sensitive nature of the subject matter I had to weigh the risks of sharing my story with what might come next. Would they find my honesty inappropriate? Would they resent me for trapping them at a table with a topic sure to make them uncomfortable? Would they feel an obligation to ask more questions and offer unsolicited advice? Or worse yet, would they make light of it, dismiss it and move on to a more congenial topic?
I certainly never aspired to be an infertility community "poster child," but I am beyond frustrated at living in a society that prefers people in my situation be silent, invisible. Earlier in the mixer part of the evening I had to smile pretty and nod quietly when the man directly across from me said, as he savored a glass of wine, "When my four children -- all now gone from the nest -- come back together for a family dinner, well, I'm just at my happiest -- take me now! My kids, they're everything to me." And turning to a colleague who had just finished describing her two children, he asked "XXX, wouldn't you agree?"
Me? I had to excuse myself to go to the ladies room. The only trouble was I couldn't live in the stall all night.
The truth is people living with infertility don't like living in a vacuum. We flock to this blogging community to talk about those things which we don't have liberty to discuss in our day to day lives. But, many of the experiences we have deserve a fair and wider hearing.
That's why I can only hope that the article in
The New Atlantis, the panel I helped initiate at the
BlogHer conference this July (more on that in a later post), and a
New York Times wellness series I've agreed to participate in will help pave the way to more open conversations. That in revealing the layers and dimensions and nuance associated with infertility we won't have to feel compelled to be silent (if we don't want to be).
Now, after this long-winded post comes a request. I'll be talking to the
New York Times this week about my experience living with infertility in a fertile world. If there are specific points you would like to me highlight, I'm all ears. Please share your thoughts below.