In my previous blog I alluded to the fact that the inability to get pregnant is laced with stigma and shame. People put autism puzzle stickers and breast cancer survivor stickers on their cars, but I have yet to see an “Infertile Couple” awareness sticker. Is the diagnosis of infertility any less of a diagnosis? Insurance companies lead us to believe this by their lack of coverage for medically necessary infertility services (a blog for another day). Although infertility may not be life threatening like breast cancer, it is a painful and limiting condition that profoundly impacts many lives.
I assume that the stigma of infertility in part stems from the fact that SEX is broken. Who wants to admit that their sex doesn’t “work”? And, although Sarah Jessica Parker may have normalized talking about explicit sex over the dinner table, many of us don’t want to share the intimacies of our relationship with friends, let alone strangers. In my mind, one of the beauties of intimacy is that it is something shared just between my husband and me. And, although I don’t shy away from joking about sex with friends now and then, I don’t make it a habit to share what I do in private. Talking with girl friends about periods, child-birth, and boobs is no big deal. But, infertility doesn’t naturally or comfortably fall into that “normal” girl talk.
Our culture is inundated with sexuality, but the idealized kind filled with Victoria’s Secret Angels, Tatum Channing physiques, and Ryan Gosling charm (okay, and physique!) Infertility is poor performing sexuality. Who wants to talk about that? Not men, and not most women. No, men hate bringing up (sorry for my choice of words here) their struggles with erectile dysfunction. Most aren’t even able to verbalize their complaint. Instead, they just point at their crotch and stutter, “I can’t, umm,” followed by a fill in the blank. And, in the past 15 years I have only had one woman come to me concerned over her lack of orgasmic ability.
Thus, infertility falls into the hush, hush sensitive topic category. It is sensitive, but the shame and stigma associated with it prevent women and men struggling with infertility from getting the resources and support that they need. Breast cancer used to have a similar stigma associated with it. Women should not openly talk about their breasts! How improper! Yes, it was cancer, but the “unmentionable” kind. Thankfully, the shame that used to accompany the diagnosis of breast cancer has been diminished due to proactive campaigns encouraging and empowering us to embrace our womanhood, “feel our boobies,” and kick cancer in the butt. This change in culture has led to life saving advancements in breast cancer research and treatments.
Can a similar cultural revolution transform how infertility is viewed? Yes, but only if people are willing to step outside of their comfort zones. If thirty year olds still refer to their genitalia as their “junk,” how are we going to have a real conversation about infertility. Using real words and talking about real life problems is a good starting place. Acknowledging that the human body often fails us, and that infertility is one of these physical and biologic failures that is out of our control, lessens the stigma, even if slightly. Normalizing the idea that infertility is incredibly common may also empower men and women to open up more readily about their struggle toward parenthood. The more that people talk about this culturally uncomfortable issue, the less uncomfortable it will become.
Reducing the stigma of infertility will positively and powerfully impact the infertility world. Infertile couples will have a larger support system if more people are willing to share their stories. This in turn will lead to increased social networks and social capital. With increased unity focused on the cause of infertility, more money will be raised for research, leading to improved infertility treatment options. Additionally, awareness campaigns may lead to political activism, forcing insurance companies to take infertility seriously and cover necessary treatments. Imagine a world where people have increased fertility because of improved infertility treatments and insurance coverage! If population control is your thing, then this may not excite you. But, for those of us hoping to add to the human race, this thought is utopia!
From The Mom in Me, MD