By Melanie Linn Gutowski

She’s the voice of a silent disease; she’s a savvy Auntie of eight and a savvy advocate: Risa Levine has managed to parlay her own difficult life experiences into a national effort to improve the quality of life and medical care for women struggling with infertility. She shared her story with Savvy Auntie recently.

Levine is among the honorees who will receive awards from RESOLVE, the National Infertility Association, at the organization’s Night of Hope dinner next week. (Savvy Auntie is one of the proud sponsors of this event.)

Levine, a real estate lawyer, came face-to-face with the injustices of infertility in 2002. After marrying and trying to conceive for several months, she went down the traditional infertility treatment path - first to her primary care physician and then to a reproductive endocrinologist, who told her she “would be an easy case,” Levine says.

But her case was anything but. Levine later went through progressively more invasive procedures to attempt to conceive, all the while maxing out her insurance provider’s lifetime maximum, spending over $300,000, with many infertility procedures not even covered by the plan.

Despite the efforts of doctors, Levine was never able to carry a pregnancy to term. She turned her energy to improving the legal and medical protections for families experiencing what she did.

“I found out that one in eight American families have experienced infertility,” Levine says. “And the numbers are rising.” This statistic inspired Levine to start talking to people who could help her make a difference on a national level. She began assembling briefing books on the subject and distributing them to politicians.

Levine began lobbying Congress to re-introduce the Family Building Act, legislation that had been previously introduced by Congressman Anthony Weiner (D-NY) but had been allowed to drop. After six months of Levine’s efforts, Weiner agreed to re-introduce the bill.

The Power of Words
“The biggest thing about infertility is that it’s a silent disease,” Levine says. “Even when I was going through it, I was talking to John Kerry and Howard Dean, but I wasn’t talking to my friends about it.”

Part of why she didn’t talk to her friends, Levine says, is that infertility is enormously humbling. “We think we can do it all, but the one thing I couldn’t do was have a child,” she says. “Failure is part of what it means to be infertile.”

But Levine is quick to encourage women who are infertile not to blame themselves. “There’s nothing wrong with you; it’s a disease.”

So what can Savvy Aunties and women who may already have children do to be sensitive to those who may be struggling with infertility?

“Don’t dismiss it,” Levine says. “Stop giving bad advice. Say, ‘I feel terrible. Is there anything I can do?’ Never judge anybody else; don’t make assumptions.”

What you shouldn’t say, according to Levine, is “’Just relax.’ Because it’s just so hurtful,” she says. Levine also recommends that women who are already mothers wait to be asked about their children before launching into mommy stories.

 “I just want people to be aware of the pain they can inflict with off-handed comments,” she says. “There are lots of things people say to cover up their own pain; you don’t know the back story.”

Levine also encourages moms to think of the Aunties in their lives on holidays. “Days like Mother’s Day are very painful for someone with infertility,” she says. “Holidays are tough, too. I would encourage moms to make Aunties feel special now and then.” Her suggestions for this include small gifts or asking Auntie about her schedule preferences before planning holiday get-togethers. “It’s really hurtful to never be the one whose time is valued,” Levine says.

What to Do If You Suspect Infertility
If you suspect you may be infertile, Levine recommends seeking a reproductive endocrinologist rather than going to your gynecologist. “If you’ve been having unprotected sex for a year under age 35 and for six months over age 35 and haven’t become pregnant, [find a specialist],” she says.

“Seek the best advice you can. Talk to people as much as you can. Demand better care.”

Melanie Linn Gutowski, Savvy Auntie’s Associate Editor, is a proud Godmother and ABC.

Published: September 22, 2010