Infertility awareness: Here’s what to do after a diagnosis

When my husband and I realized that we weren’t going to get pregnant the old-fashioned way, we initially talked to my obstetrician and later on, our fertility specialists.

While we were on this roller coaster of emotions, we didn’t even know what IVF (in vitro fertilization) or IUI (intrauterine insemination) stood for. We certainly didn’t tell our friends or family. At the time, we were embarrassed about our diagnosis and grappling with the reality of a potentially childless future.

Multiple rounds of infertility treatments later, and now with two sons, I am armed with some knowledge and experience — information I wish someone had shared with me before we started our journey.

If you are facing infertility, or know a loved one who is going through this difficult reality, I want to share this knowledge with you. I hope it helps.

Infertility is common

One in eight couples suffers from infertility in the United States, according to the US Centers for Disease Control and Prevention.

“I think something that’s really important to remember is how common (infertility) is and how much you talking up or sharing your story can really help to destigmatize infertility,” Dr. Tia Jackson-Bey, reproductive endocrinologist and infertility specialist at Reproductive Medicine Associates of New York’s Brooklyn office, told CNN.

“It doesn’t mean that you need to shout it from the rooftops or post it to social media, but just engaging those who are closest to you,” Jackson-Bey said. “So many (patients) that I interact with say that once they disclose to their family or to their best friend, that people also told them stories of challenging reproductive issues, whether infertility or pregnancy loss or miscarriage.”

Sharing your story “is something that I really do encourage anyone who’s struggling with infertility to do, is to be open to the person,” she said. “They may have more support than they think.”

Lobby for what you need

While only 19 states in the US have mandated fertility insurance coverage, CNN’s Alisyn Camerota, who went through IVF, said you shouldn’t take “no” for an answer if your employer does not offer infertility benefits. Whether it’s lobbying your company or state representatives, don’t be afraid to ask.

“I have watched women do this quite successfully,” Camerota said during a CNN panel discussion on infertility.

“They go to the human resources department of their workplace, and they just have a very sort of direct adult conversation and take them step by step through how it helps their employees,” she said. “It makes for a better, healthier workplace. It makes for a happier workplace. And lo and behold, after lobbying like that, their companies started offering infertility coverage.”

Resolve: The National Infertility Association has suggested talking points to help employees broach the subject with your human resources department.

Financial support

Fertility procedures don’t come cheap. A round of IVF can cost upward of $12,000 — not including medication, according to a University of Iowa study cited by the National Conference of State Legislatures. That’s why it’s important to be aware of what your options for financial assistance.

Grant programs like Bundle of Joy, Baby Quest and Parental Hope are a great place to start. CoFertility is a database where you can find grants, donated services and discounts on medication.

Inception Fertility, a network of fertility clinics, offers a package called Bundl, which allows patients to lower fertility treatment costs by packaging multiple treatment cycles together at one reduced cost — with a 100% money-back guarantee if the treatment doesn’t result in a pregnancy.

Knowledge is power

There are several organizations that have valuable information to share. Resolve has statistics and ways that you can make a difference in your own community.

Resolve also announced a partnership with Chrissy Teigen on April 19 called the Fertility Out Loud campaign along with Ferring Pharmaceuticals, aiming to “encourage men and women to speak up, take action and seek help sooner as they navigate their journey to parenthood,” according to a news release. Family Equality, Maven Clinic, and the American Society for Reproductive Medicine all offer educational resources and support groups for individuals.

For those in the military or veterans, the Military Family Building Coalition offers support. When it comes to adoption, check out Creating a Family or PairTree, and for egg donor and surrogacy, there is Hatch. There’s also EM Power, with a step-by-step process for embryo donations. If you’re in need of information regarding male factor infertility, CCRM has a great explainer. For the BIPOC community Dr. Jackson-Bey recommends, The Broken Brown Egg and Fertility For Colored Girls.

Strength in numbers

Knowing that you’re not on this journey alone is incredibly important. When I was trying for my first child, I found myself reading decades-old message boards at 2 a.m. But now, there are so many more places to turn.

You can find local support groups here. There are also fabulous podcasts like InfertileAF, This Is Infertility and Fab Fertility. Fertility Rally, a yearly event at which I have spoken, has switched to virtual amid the pandemic, bringing experts together to discuss all areas of infertility.

Some Instagram accounts I enjoy following are: Fertilust, Fertility Within Reach, Hilariously Infertile, Roaring Adventures and The Fertility Tribe. When it comes to books, check out The IVF Planner, The Game of Life, Fighting Infertility and The Trying Game. And a great one from a man’s perspective is “Swimming Aimlessly.”