Infertility: Why don’t more people talk about it?

Posted at 7:58 PM, Apr 10, 2015
and last updated 2015-04-10 19:58:37-04

(CNN) — For eight years, Robyn Cohen and her husband have been trying to have a child.

Eight devastating years largely spent suffering in silence until this February.

That is when Cohen, the founder of Women On It, a media platform for and about women, decided to talk publicly about her struggles for the very first time in an in-depth way.

In a post titled “The Face of Infertility” for The Huffington Post, she chronicles a journey that includes an account of uncontrollable bleeding following a procedure to treat cervical dysplasia, a diagnosis of endometreiosis (a disorder where tissue that normally lines the uterus grows outside it), and her decision to begin fertility treatment.

Writing that post and letting it ricochet online was like “standing naked in front of the public,” said Cohen during a recent interview. She hopes by coming forward, she will help other women feel more comfortable sharing their stories.

“I feel like we are not talking about infertility in an open and confident way,” said Cohen.

Feelings of embarrassment, shame, inadequacy

Approximately 12 of every 100 women — 7.4 million women overall — have received infertility services in their lifetimes, according to data collected from 2006 to 20010 for the Centers for Disease Control and Prevention’s National Survey of Family Growth.

Several words kept coming up when I asked Cohen and others about the silence surrounding infertility and why more women don’t talk more openly about it: embarrassment, shame, grief, inadequacy.

Teresa Taylor, a former chief operating officer of Qwest, a Fortune 200 telecommunications and media company, battled infertility for several years starting in her mid-20s.

“I felt like I was a failure. I felt like I was alone. I felt like it was just me,” said Taylor, who lives in Denver. “It’s supposed to be a natural thing that you conceive and give birth as a human being. You see bugs do it and animals do it and birds do it and so you’re like: ‘Why can’t I?’

“It’s just extremely embarrassing and you just feel very belittled.”

Taylor, in her book “The Balance Myth: Rethinking Work-Life Success,” devotes an entire chapter to the infertility she faced as she was moving up in her career.

“What was just horrible for me, which is what I write about in my book, is the first doctors that were seeing me gave me the old, ‘You just need to relax. You just work too hard,’ the classic stereotype of being a career woman and I’m not focusing or I’m not relaxing or I’m not having sex enough or whatever, I’m not doing it upside down,” she said with a chuckle.

It wasn’t until she saw a female doctor who was new to the field, who determined there had to be something bigger going on for a woman her age to be unable to conceive for years.

That doctor discovered Taylor had endometreiosis, which was then corrected. She got pregnant with her first child about six months later at the age of 30.

What helped along her journey, she said, was seeking out information from the Endometreiosis Association and eventually confiding in other women in her office.

“Once you open up, other people open up,” said Taylor, a mom of two boys who are now 19 and 21. She hopes her story gives people hope.

“You wouldn’t believe how many people write me now … and say, ‘Oh my gosh, I’m dealing with this too’… and there really just is power in knowing that you are not alone.”

The grief that accompanies infertility

Infertility is not just the struggle to conceive, but also the difficulties of holding onto a pregnancy, which is something Devan McGuinness of Toronto, Canada, sadly knows all too well.

McGuinness has been through 12 miscarriages in between giving birth to four children. She founded a group called Unspoken Grief, which provides resources, information and support for anyone who is touched by miscarriage, stillbirth or neonatal loss, which is the loss of a child in the first 28 days of a baby’s life.

She said too often people don’t realize there’s tremendous grief associated with trouble conceiving or keeping a pregnancy.

“I think that grief is misunderstood. It’s more than just you’re not pregnant again or another negative test. There’s a whole emotional side to it,” she said.

McGuinness said the more people understand the “darker sides” of conceiving and pregnancy, the more women will talk more openly about it. And the more women talk more openly about it, the more people understand the grief that can accompany it, she said.

The inappropriate things people say

Dr. Christo Zouves, medical director of the Zouves Fertility Center in northern California, said 30 years ago when he first started doing in vitro fertilization, infertility was something that people didn’t speak much about.

Three decades later, things have changed mainly because of the media, the Internet and celebrity culture, he said.

“We are really bringing the discussions out,” said Zouves. Social media, in particular, allows people to share and get support.

That said, he mentioned a few reasons why women may continue to be reluctant to open up about their infertility journey.

One is to protect themselves from the “inappropriate things” people can say. Remember how Teresa Taylor’s doctors said she just needed to relax more or have more sex?

Zouves said when people hear about someone’s infertility, they may suggest they go off with their partner to Hawaii or just buy a “sexy negligee,” comments, which are like a “dagger to the heart” he said because they imply infertility can be fixed by one weekend of romantic sex.

Women may also keep their privacy, he suggested, so that friends and family aren’t tracking their fertility treatments and calling up to ask about results.

In Taylor’s case, it was the constant “Why aren’t you pregnant?” that she would hear from family and friends.

” ‘Aren’t you going to have kids?’ ‘I thought you were going to do this.’ ‘Are you pregnant yet?’ And then after a while, we just said you need to stop asking us,” she said.

It can be particularly awkward when you have “that one annoying friend who just won’t stop,” said Taylor, who is now chief executive officer of the consulting firm Blue Valley Advisers, LLC.

Cohen, who is awaiting the results of her third artificial insemination, said so many people really don’t have any idea what a woman suffering from infertility is going through.

“I don’t know if people know how intense infertility is,” she said.

Only a handful of celebrities like Celine Dion, Giuliana Rancic and Kim Kardashian have opened up about their infertility struggles, said Cohen.

She wishes more women in the public spotlight would speak frankly about what they are going through, because when women see celebrities who have no trouble at all conceiving, even at older ages, it adds to that feeling of failure, she said.

When females celebrities in their 40s get pregnant, “if they say it happened naturally or they make it seem (like) it happened naturally, it perpetuates that feeling more. I just feel like it really needs to stop.”

Helping women open up

So what can we do to encourage more women to speak more openly about their infertility?

More women sharing their stories definitely helps, said Taylor. Women see that they’re not alone and that there are resources available.

“And that there’s a way through it whatever that path is,” she said. “The path may be different for each person, but there is a path. It’s not hopeless however it ends.”

McGuinness of Unspoken Grief said her first advice to women is to acknowledge what they are feeling, because too often women are told that it’s not that big of a deal or that someone has it much worse.

“I think if you’re going to actually get through it, learn how to live with it, you need to acknowledge exactly what you’re feeling without feeling any shame or guilt or embarrassment and find someone that you can say that to, whether you write that on a piece of paper and then throw it out, or you speak to your partner or a friend.

“But acknowledging even the ugly sides of the emotions that can go with infertility is important.”

At that same time, McGuinness said, women shouldn’t feel pressure or be judged if they choose to remain silent.

“Nobody works through their emotions or grief the same way. I know that when I was going through it, I was not ready to talk just because it’s not really who I am. It’s not how I deal with things.”

Cohen longs for a day where we, as a society, are as comfortable talking about infertility as we are about other diseases that impact families, such as Alzheimer’s, and when health insurance provides more coverage for fertility treatments. (Most fertility treatments are not covered by insurance or the reimbursements are capped at a certain amount, according to the National Infertility Association.)

“Right now women and couples are in a lose-lose situation,” said Cohen. “They feel ashamed, sad, frustrated because they can’t get pregnant naturally and then they can’t even afford the fertility treatments.

“It’s a horrible position to be in and made worse because society paints the picture that everyone is getting pregnant without a problem, whether it’s a 29-year-old woman or a 45-year-old woman.”

Editor’s note: Kelly Wallace is CNN’s digital correspondent and editor-at-large covering family, career and life.