Misinformation is worse than no information.
It's easy to reach this conclusion when you see how half-truths can radically, adversely influence lives. While infertility has been documented as early as the biblical era it's only recently, as science has advanced, that we've heard it discussed in more than whispers.
My generation was lulled into believing that science had cracked the fertility code with test-tube babies only to learn — usually too late — that not all infertility is alike.
There are myriad complications and contributing conditions and diseases. Each case is different. No magic bullet exists. The treatment success rates are miserably low and don't improve with time. Infertility is a bitter pill to swallow, but the blogosphere and online communities have proven that it goes down easier when we are more realistically prepared for what's to come and have adequate support to manage the what ifs.
If there's one gift we can give the next generation it is to share our stories so those coming behind us are not caught unaware. Our goal is to inform, not to scare. Nature and science have limits.
Correcting misinformation is a never-ending job when it comes to infertility. There's no shortage of work and, depending on the scope and reach of inaccuracy.
Some of us are driven to set the record straight on terminology (you can't implant embryos you can only transfer them). Others take on the bigger challenge — reaching out to well-meaning but short-sighted celebrities. I recently learned about Julie and her online community, Infertility Awareness. She pointed me to a letter she wrote to celebrities Giuliana and Bill Rancic. This passage in particular had me nodding my head vigorously:
This morning on the Today Show you said, "One is six couples struggle with infertility. If you stick with it and never quit, it will pay off." I'm here to tell you that is not true. We stuck with it for 12 years. Lost 8 babies. Tried to adopt for three years, and had 2 FET cycles with donor embryos. Yet, we are facing a life without children. It does not "pay off" for everyone unfortunately. And I find your statement rather upsetting because it implies that my husband and I did not do enough.
My first thought after reading her letter was, "Amen, sister."
My second thought was if Guiliana and Bill are going to take up precious air space and act as spokespeople for one of the most misunderstood conditions around the least they can do is be accurate.
It's dangerously misleading to say treatment "will pay off," and deceives the public into believing that success is, ta da, inevitable (it's not). Further this "blame the couple for not doing enough" adds insult to injury by inviting anyone in earshot to judge couples who are childless not by choice harshly. While we do get back on our feet, we don't need any help making the adjustment tougher, thank you very much.
Julie, as you can see below, graciously agreed to answer a few questions.
Your letter generated lots of likes on Facebook. How did you convey the letter? Did it go to the Today Show? I sent the letter to Bill & Giuiana, both on Facebook, and extended an invitation to our Facebook page. I also sent one to Bill via his website. And I did send one to the Today Show via their website as well.
What stands out from the FB comments you've received? What stands out is that people assumed I was bitter about the Rancic's having a child. Which is not the case at all. They put themselves out there as an infertile couple, which I applaud. Infertility needs exposure so people understand it. By doing so, they are Ambassadors for Infertility. People look up to and admire them and will take to heart the things they say. Therefore, they need to be careful about what they say, how they say it and consider how others may interpret it.
You made clear that there's harm in perpetuating the myth that success is inevitable. Is this what led you to create Infertility Awareness? What led me to create the Infertility Awareness page was my own unsuccessful journey. First of all, I know how tragically isolating infertility can be, so when I started the Facebook page I just wanted to reach out to others who might feel alone. Then I realized that during my 12-year journey I learned an awful lot. One visit my RE told me that I knew more than most of his second year students studying infertility. I thought if I can help a few people not feel alone, then I thought I could help others learn from my experiences, things their doctors and nurses may not teach them. For instance, if you use injectable meds that are kept in the fridge, take them out and let them get to room temperature 30 minutes before your injection, it will be much less painful. I just started out with little tips like these and was amazed at the response I received.
How has informing other women about your experience led to new insights? Sharing my experience with other people, woman and men, has helped me find a purpose in my life and it's helped me to feel like my 12-year journey was not a waste of time. Many of the women on our page have said I'm like a mother to them, in that I am nurturing them in their illness. That really warms my heart. I hope to start a foundation one day called "Julie's Hope" and I'd like to be able to help support people financially with their treatment, because money is what kept us from continuing our journey.
If you could create talking points for high-profile spokespeople who only focus on the family building successes, what would you want them to convey? I appreciate when celebrities share their infertility stories, but they need to remember that the general population does not have the financial resources that they have, which makes for an entirely different ball game. On the other hand, it really upsets me when older famous women become pregnant and have babies and do not reveal that they used either donor eggs or donor embryos. This may lead young women to believe they have plenty of time, which is not the case.
I recommend your book Silent Sorority because I want people to start considering the fact that they may not have children. I never considered that fact until it was staring me in the face and I think it made it very difficult for me to come to terms with childlessness. I try to encourage the people on my page to consider life without children, so if that is what happens, it's not such a shock.
Now, readers, it's your turn. What infertility talking points would you create for celebrity spokespeople?
You can read more stories about women raising infertility awareness and sharing their experiences here.