Is Infertility Private Information?
I am reading an interesting book about magic (uh… see the last post for more on that piece of nerdiness) and one of the discussions I had with a magician about it is the idea of secrecy in regards to revealing tricks. This is one of those very grey areas that magicians seem to have strong opinions about and the boundary lines are fairly slippery, and it reminds me a lot of the discussion that comes up within the ALI world every so often about another person discussing our infertility.
Information about magic is usually passed from person-to-person, with those further in their study giving advice to those earlier in the process. Sounds family, right? When I received my diagnosis and went online, I spoke before my first IUI with other women who had already gone through that stage of treatments, and they gave me a heads up on what to expect (much as we constructed years ago with Operation Heads Up which is still used daily). They taught me tricks on how to make injections less painful, they helped me emotionally process hormone level results, and they debated the various pee stick sensitivities. (Oh no, my friend, they are not all created alike. FRER used to have the lowest mlU levels and EPT used to have the highest, though these things change all the time.)
While magic is mostly discussed quietly, with information passed from person-to-person, there are also magic textbooks and magazines and videos that anyone can pick up and learn from. Showing how a trick works becomes a grey area. Revealing your own tricks is generally accepted EXCEPT in cases when explaining how you did something could potentially out another magician’s illusion. In those cases, the magic world seems passionately divided. The book I’m reading also began with a very stern lecture on never revealing another person’s tricks, and then proceeds to explain the intricacies of dead magicians’ routines. While I’m aware that the dead can no longer perform card tricks, I’m not sure how many of them wanted their secrets revealed postmortem.
Infertility seems to be similarly grey. Revealing your own infertility is generally accepted EXCEPT in cases where your partner (if you have one) sees it as a breech of their privacy. Is it okay for Josh to tell other people about our infertility considering we have female factor so the problems are all with my body? Is it okay for me to reveal our infertility since it’s my problem if Josh doesn’t want people to know that we did treatments. And there is an additional level to consider here: is it okay for me to speak about doing treatments when in doing so inadvertently tells people about the twins’ conception — does that information belong to me or to them or to both of us, and do we need to be in agreement about sharing it?
Is it ever okay for people to pass along news of my infertility to another person without my expressed permission? I’m going to preface this by saying that everyone in this world has my expressed permission by this point because I’ve spoken about it so openly here and in the book. But that wasn’t always the case. There was a time when news about a miscarriage was passed along to various other people, and I was furious that I had to talk about it with people I would have never chosen to discuss my fertility. The person spread the news about that miscarriage out of concern, but was it her place to ever share it — especially if she didn’t first ask us permission?
Is it okay to tell someone else for a “good” reason (vs. as gossip), such as if you passed along the name of someone you knew doing treatments to another friend who was newly diagnosed so they could connect and talk? What about as an explanation to comfort someone who believes they’re the only person experiencing infertility? Is it okay to tell them about others so they don’t feel alone? What if the two parties will never meet? For instance, if you told me about your infertility, is it okay for me to tell local friends knowing that they’ll never know who “Jen” is (and even if they went online and typed in “Jen + infertility,” they’d never know which one because there seems to be 2756 infertile Jens with blogs in the ALI community)?
The revealing of magic secrets postmortem has an almost reverent feel, as if the other magician does so in order to honour the dead, to point out brilliance that may have gone unrecognized until that point. Is that okay then, if you’re doing it to teach the younger generation and honour the intelligence of the magician who has died? I could see someone making the same case for revealing someone’s infertility after death; to point out what the person went through while alive; to honour their journey and tenacity. Or does reason never matter — are there no “good” reasons to reveal another person’s private information?
Where is the line for outing a fellow infertile? For outing yourself when your infertility involves the lives of (perhaps) a partner and (perhaps) children and (perhaps) even birth parents, gamete donors, or surrogates?
And truly, how do we decide what we will consider private information? There are plenty of things that are not visibly apparent about myself that I don’t think twice about when other people pass along these facts. No one would blink a myopic eye if someone else revealed they were nearsighted (unless, perhaps, the revealing of that information negatively affected their life as is the case with the pursuit of certain professions). So our eyes are fair game, but our uteruses are off-limits? How did we divvy up our organs to decide which would be covered under the umbrella of privacy and which medical conditions would be fair game for public explanation?
Or is infertility private information? And how far does that privacy go?