On the subject of Infertility

National Infertility Awareness Week is coming up soon, April 25-May 2, 2009. What does this mean? I have absolutely no idea whatsoever. Which is part of the problem if you think about it.

I like the idea of infertility awareness. I think it’s very sad that most of us who go through IF suffer in silence. And we do suffer. Only our spouses, and if we’re very lucky a family member or best friend, have a hint of what we’re going through. Sometimes we tell people, but it’s virtually a given that they don’t really understand. I certainly didn’t understand until I started really going through it. There may be people reading this blog who don’t understand it, though this is a good start. I know there’s not one person aside from my husband who has a clue about what I’m going through, and what with the differences in gender, I’m sure we experience this completely differently, but no doubt it’s hard on us both just like it’s hard on our relationship.

I recently read an article in People online about Constance Marie, who starred as George’s wife in the George Lopez show. She and her husband recently had a beautiful little girl who was born to their third IVF attempt. Here’s the article if you’re interested: http://www.people.com/people/article/0,,20269221,00.html She touches on the difficulties she had in conceiving, and how she supports others who are going through infertility.

This is a great start. It’s not something celebrities talk about any more than the regular people. And of course celebrities have a right to keep their private lives private, too. But as long as infertility is looked at as not a serious problem, as long as the prevailing attitude is “Just adopt” (adoption is a beautiful thing and as you know we hope to adopt someday whether or not our IVF is successful), but it’s far from simple and it’s not a cure for infertility and the emotional baggage that goes with it), companies won’t have incentive to secure coverage for infertility in their insurance benefits unless the state requires that they do (and only a few states do, leaving the vast majority of men and women who may be very much suffering with this problem without any coverage at all).

When Alan and I first started trying to conceive, I had no concept of infertility. And I’d been TOLD I might be infertile before we started trying! It’s just that I knew of people who “tried for five years before getting pregnant”. It’s like it was a given that if you just kept trying, it would happen. And if it didn’t, you could “just adopt”. I had no understanding at all of the complexity of the problem, the physical and emotional pain that goes along with it, the financial struggle and psychological torment. I just thought it magically happened. And, I’m sad to say that I probably said many of the platitudes that annoy me so much now. Even a simple question like “Are you planning to have kids?” can be serious torture to someone who has wanted nothing more for month after month after month. And the asker usually has no idea that they said something inappropriate.

Sometimes the asker says something inappropriate, and sometimes the asked only feels that way because they are trapped by the lack of available answer. One is left with only a few choices: 1) Be rude and tell the asker it’s none of their business and hope they get a hint, 2) Be perceived as rude and open up to the asker and tell them more than they ever wanted to know, 3) Just say something like, “Some day”, and go home and cry on the inside – again. Sometimes the circumstances dictate the reaction (you probably won’t open up to someone at a job interview, or there may not be time to open up to someone in public), and sometimes it’s dictated by societal rules of keeping certain things (like the bedroom) private. Yet it seems to be okay to ask about things that are none of anyone’s business. Or to offer up inane (and completely unhelpful) suggestions like “just relax” or “once you adopt you’ll get pregnant”.

So what can we do about it? Sometimes making an effort to educate ignorant people seems like an effort in futility. Saying something about the fact that you cannot have biological children, or have been trying for x years, etc, only seems to invite inane comments like “You never know” or “That happened to a friend of mine”. And sometimes we become the rude one somehow, even though they are the ones who overstepped their bounds by a long shot.

But I do think awareness has a shot at success. It wasn’t that many years ago that no one (unless they were personally affected or a family member was) really had a clue what autism is, or that breast cancer was one of those things that should NEVER be discussed in polite company. Now probably 1 in 4 people can recite some statistic relating to autism and argue one side or other of the vaccine debate, and women remind each other openly to do monthly breast self-exams and get their yearly mammograms, and companies sponsor walk-a-thon teams for something that used to be extremely taboo to discuss. Why should infertility be any different? It will probably take a lot of work, and several celebrity pioneers like Cindy Margolis and Constance Marie to come out about their experiences and difficulties as well as the “regular people” before we see any real, meaningful changes in insurance policies, but it has a shot and would be a very positive change.

Meanwhile, if you’re a woman who is having difficulty conceiving but has not pursued testing because you think you don’t have coverage or you don’t know what coverage you have, call EMD Serono’s Fertility Lifelines at 1-866-LETS-TRY, a free service from the fertility drug manufacturer that offers confidential and thorough benefits analysis to tell you what exactly *is* covered. Because most of us, unlike some celebrities, can’t come up with the money for multiple IVF’s or even one adoption without turning our lives upside down. Perhaps there’s some help there after all. You never know until you call.

Please comment or contact me and let me know what you think about this topic. I want to know how we can change the general perception, perhaps through real suggestions. I’m thinking about getting some of those wallet cards that people hand out sometimes, that I can give out when someone says something stupid, with the basic facts about infertility.