Thursday, April 22, 2010

Celebrate Infertility Awareness Week: April 24-May 1

So, you may be asking, "What's to celebrate?" Infertility is not an experience anyone wants to have, it is something people hope to put behind them as quickly as possible, and it tends to be a somewhat carefully guarded secret for many couples.

So when a week is proclaimed in honor of infertility, this tends to jolt us a bit and provoke some questions in our own minds about how we fit into this week of public awareness. I find myself reminiscing (and not at all warmly) on my early days/months/years of infertility. Given that my children are now young adults, I'm recalling the mid 1970's when infertility was misunderstood on many levels, not very successfully treated, and generally "in the closet" for many affected couples. From that context, I imagine that many people would say that there have been massive medical breakthroughs and successes. This is true, particularly for couples who can afford to pay for medical tests, treatments, and choices (including donor eggs/sperm, adoption, or a gestational surrogate). But, in spite of medical progress, there are areas that have not experienced as much success, and it is especially these areas that will benefit from our voices during Infertility Awareness Week:

  • Lack of insurance coverage for diagnosis and treatment: This is a significant concern for individuals and couples who want to explore what options are available for becoming birthparents. Insurance companies are reluctant to explore this potential black hole, and yet infertility is a significant concern for 12% of couples in the U.S. population of childbearing age. Even more pressing for some couples is being uninsured altogether, which interrupts their efforts to understand more fully what may be contributing to their inability to conceive or to carry a pregnancy to term.

  • Lack of attention to the emotional impact of infertility. On the shelves of most book stores we can find a handful of books on infertility, but almost every book focuses on the medical aspects, with perhaps a cursory mention of the stress and anxiety that accompany the inability to conceive or to have a healthy pregnancy. The absence of the emotional factor has significant ramifications: physicians focus solely on the physiological, and their patients have no validation for the emotional challenges they find themselves confronting month by month as pregnancy eludes them. In addition, too few infertility clinics have therapists on staff to help patients with the mental health fallout from their infertility diagnosis and treatment. Of course it has been this emotional component that compelled me to write When You're NOT Expecting, in which I focus specifically on strategies for coping with the emotional challenges of infertility.

  • Lack of awareness of the full range of populations trying to pursue birth parenthood. In the eighties, nineties and the early years of the 21st century, most infertility support groups were composed of married, middle class Caucasian women, with male partners occasionally accompanying their wives. The populations now trying to pursue parenthood also include people of color, same sex couples and single men and women. Creating face-to-face environments and on-line communities that welcome all would-be-parents is an evolving process. In my book I make a conscious effort to include the voices of these less visible prospective parents, since their emotional struggles are important to recognize as valid.

  • Lack of sensitivity by some ob-gyns, urologists and infertility clinics to unmarried patients and same sex couples hoping to conceive. Beyond the local "invisibility" of these would-be parents, we may find that specialized infertility services can be insensitive to some patients, either unintentionally or, perhaps, in an effort to attract "typical" clients. These insensitivities can include social history forms asking for the name of a "spouse/husband/wife;" reluctance to have the same sex partner in the examining room; obvious awkwardness of the health care professional when interacting with unmarried patients and same sex couples; and, potentially, an unwillingness to accept input on testing/treatment from the couple (an example here would include a lesbian who requests that her partner's egg be fertilized with donor sperm before being implanted in her uterus).

The above are only the most compelling of the issues that deserve attention from the media, from insurance companies, from health care professionals and from infertile people who may have had a restricted view of people affected by infertility.

So, when you find yourself asking "What's this awareness week all about?" recall the issues above, add some of your own, and consider ways that you might be able to advocate on behalf of under-served folks who, like you, share the hope of some day becoming parents.

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