Susannah Fox at e-patients.net has a brief interview with Melissa of Stirrup Queens. (Full disclosure: I am mentioned, because of my “Blogging Infertility” article.) I was taken by this question in particular:
SF: In Miller’s article, she writes about how infertility was a “silent disorder” and went on to talk about how this generation is no longer silent – do you agree? Has the internet had an impact on this “coming out” process? Related to that, have you taken inspiration or learned techniques from other formerly “silent” communities?
M: If you had asked me this question 2 years ago, I would have said that our generation is far from silent. But now, 2 years down the road, I can see the huge difference between speaking about it online and speaking about it face-to-face. The Internet makes discussion easy and it can be a misleading barometer of how open people are in the face-to-face world.
I think my generation is more “out”–that there are simply more of us that are willing to speak about it frankly and openly vs. my parent’s generation. Which is not to say that everyone is open or that it is no longer a silent community. I think we’re doing a good job connecting within the community and talking within the community and building in-roads within the community. And that is the first step. The next step is taking it outside the community, tearing down the stereotypes that are often presented in the media, having frank discussions in the same way we now do about other diseases that were whispered about years ago.
This conflict between privacy and exposure was something that fascinated me while interviewing the bloggers. When I first went in, I was a little skeptical about all the talk of raising awareness from these (mostly) anonymous bloggers. Many hadn’t even told their families or friends. If you can’t even talk openly with the people closest to you, I thought, how are you going to educate the public at large?
After talking with bloggers, I changed my mind. For one thing, my interviews made clear how difficult it is to be “out” 24/7 about your infertility. Who — and what — to tell is a question the infertile have to struggle with on a daily basis. Do you use every awkward exchange as a “teachable moment,” an opportunity to educate others about the 6.1 million people struggling with infertility? And who is appropriate to “educate”: relatives you see once a year, co-workers, neighbors, total strangers who just happened to ask an innocent, but painful, question? During an interview, Gabrielle Sedor of Fertility Notes told me about how she was teased by co-workers who were unaware of her infertility. “Do you go into the whole story right there in the break room?” she asked me. “Or do you just let it slide?” And then there’s the fact, as Melissa put it, that “infertility is about your sex life, and no one wants to hear about your sex life.”
Aside from that, I also began to see blogging more as an intermediary step in the way Melissa describes above. Blogging’s appeal, I think, is much like that of the “Common Thread” bracelet: It’s discreet and public at the same time. Only those in the know will understand the bracelet’s meaning, and, only they — or at least that’s the common assumption — will be reading your posts about just how obnoxious your pregnant sister-in-law is. (A few of the bloggers even assumed I was infertile since they couldn’t figure out how else I would have found them.)
Yet, many of the bloggers had started their sites as a way of building a movement and raising awareness. They weren’t ready to tell just anyone about their infertility, but they still wanted to make a public contribution, to help educate. Blogging gives people a way of participating without necessarily becoming the “poster child” for a disease. It’s a compromise of sorts. Also, there might be less need to “come out” since there are now so many public faces of infertility: Peggy Orenstein, Beth Kohl, Brenda Strong, and many others.