The importance of infertility advocacy

I recently came to the realization that although we are talking about infertility more than ever, it is still not enough.

My family and I stopped for pizza after an afternoon of mini-putting while vacationing in Florida.

When we got to the restaurant the server immediately started gushing over my boys. She brought out a box containing small toys such as little cars and trucks and with their favourites in hand, they began to play.

“They’re so cute. Are they twins?”

“No,” I replied. “They’re two years apart.”

She then proceeded to tell me that her cousin had twin boys after “a really long time.”

I nodded in both empathy and understanding.

She said that they tell everyone they meet that they “cost 10,000 dollars,” and that she’s surprised that they’re not more “embarrassed.”

My husband and I exchanged looks but decided to focus our energy on our hungry children.

On the ride home, I couldn’t help but think that despite all the progress we have made in normalizing infertility that it is still not reaching everyone, certainly not this young woman in this small beach town.

Would she have said what she did if she thought for a minute that my children were conceived with the help of IVF?

I don’t think so.

How would she even know? They are regular four and six-year-old kids, a little pink in the cheeks from the sun, stirring anxiously in their chairs, awaiting the arrival of their cheese pizza.

So where then does the “embarrassment” come from?

In her book The Seed. Infertility is a Feminist Issue, author Alexandra Kimball writes “From her first recorded mentions the infertile female was a monster, distinct from woman-proper.” She describes the depiction of infertile women in literature and pop culture both past and present. She’s either evil (The Hand That Rocks The Cradle, The Handmaid’s Tale) or a baby-crazy fool (Liz Lemmon from the TV show 30 Rock).

She’s also the stereotypical female who waited too long and is now trying to go against “nature” and take matters into her own hands. (Tina Fey’s character in the film Baby Mama). With depictions such as these, it’s no wonder we have all, at one point or another, felt the stigma of infertility. We feel “othered” from our fertile peers or less than a woman for not being able to do this “natural” thing.

Why on earth would we want to shout that from the rooftops?

When my infertility battle began in 2005, it wasn’t really talked about. I certainly didn’t add to the conversation and the few times I tried, it only made me feel worse. I was accused of being “jealous” of other people’s pregnancies and was handed platitudes like “if it’s meant to be, it will be.” I found a few infertility blogs online but their focus was on treatments and follicle counts and not really about the pain and grief. The majority of the bloggers didn’t use their real names.

In the 2010 self.com article This Woman Has a Secret by Jennifer Wolff Perrine, Barbara Collura, the President and CEO of RESOLVE, states that the organization could only get a handful of their own volunteers to speak up because of the shame. She said, “because we have so little patient advocacy, we have so little progress.”

Congresswoman Debbie Wasserman Schultz, herself a one-time fertility patient, was quoted in the article as saying “Where are the tens of thousands of patients affected by this disease?” and “If you’re not going to fight for yourselves, how is anyone else going to fight for you?”

Luckily for all of us, things have changed since that article was written.

I’m eternally grateful to those who wrote or spoke openly about their infertility because it gave me the courage to do the same. The stigma is still alive though, with infertile women being blamed for their infertility and then judged for the way they try to create their families.

So how do I fight back against the stigma? I write. I write about my decade-long battle to get to my kids. I lost my thirties to infertility but by talking about it, I’m reclaiming those years and getting some of my power back.

I speak openly to my kids that my husband and I wanted them so badly but that we couldn’t make them on our own so we got some very nice doctors to help us.

I read about all the amazing advocacy work going on in the world and I share their work on social media.

I know there is more I can do

Things like writing letters to MLA’s to try to make treatments publicly funded and I can give even more of my time. I realize my privilege as a cis-gendered, heterosexual woman, who was able to find the money for multiple rounds of treatment and I’m aware that fertility treatments are geared to people like me.

I certainly hope that by normalizing infertility and speaking about grief, people won’t feel that infertility is something to be “embarrassed” by— that when someone talks of a child costing “10,000 dollars” that they’ll have a better understanding of the heartache that it took to get there, and choose their words a little more carefully.