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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?

17 comments

1 Chickenpig { 11.13.12 at 9:30 am }

I feel the need to protect my husband’s privacy. I have talked some about my infertility with my relatives, but I have kept mute around my husband’s friends and family unless HE has mentioned it. If it was a female infertility issue, I would hope that he wouldn’t be blathering on about my uterus to his family without my permission. I feel the same about any medical condition. If I had cancer I would keep that to a close circle of people too. Medical information is just…private. And infertility is primarily a medical condition, IMHO.

2 a { 11.13.12 at 10:05 am }

As with everything, it depends on the situation for me. If I felt like someone was open to it, I might share information that might help someone else. If I felt like the person was highly emotional about it, I might ask first. I have to say, my sister (who is about as emotionally ham-handed as you can get) shared information about my losses with (insert complex but meaningless relationship here – or I could have just said “someone that I sort of knew”), because the girl was having a hard time and my sister thought it would be good for her to have someone who understood to talk to. And then my sister told me that she had done it by saying “I hope you don’ t mind but…” I guess she knows me well enough to know that I don’t mind a direct question.

Anyway, I have a pretty good sense of when it’s right to pass on information and when it’s not a good idea. I’m the person my friends tell stuff to, because I usually seem to forget it immediately and therefore don’t pass it on. But it actually gets filed away into the portion of my brain that is only accessed under the proper conditions…

3 Sharon { 11.13.12 at 10:33 am }

For what it’s worth, I believe that infertility *is* private information, insofar as infertility involves both one’s health and one’s sex life. Perhaps an ironic point of view from someone who has chosen to share the intimate details of her life on a public blog and has no qualms talking about them, but there it is.

That said, I have talked openly about my infertility with a number of people. It might be easier given the fact that we were “unexplained” and thus there was no question of it being “my” problem or “his” problem. According to our doctors, no one had a problem. . . we just couldn’t have a baby on our own.

I think that this discussion becomes even more tricky when you are talking not only about “just” infertility but also the use of donor gametes to conceive. While my husband and I are both pretty comfortable with telling people our sons are the result of IVF, we are both less so with telling people we used donated ova. IVF seems to have become common enough, at least among our circle of friends and acquaintances, that people hardly bat an eye when its use is mentioned. (And I think most people see twins and wonder if the couple used fertility treatments anyway, especially with older moms like me.) I rarely tell people about the donor egg piece because I don’t want them to look at our children differently, and I think that many people still this option as fringe or science fiction-ish.

4 Pepper { 11.13.12 at 10:34 am }

It is also situational for us. With my husband’s family, we have kept pretty quiet, although his parents know. They have expressed that they have no interest which is unfortunate because it is really just their way of burying their heads in the sand about the fact that there won’t be any more grandchildren. And that’s why it just does not come up.

With my family and our friends, I have been open about the fact that we did treatments and even went into specifics except for one major fact: we have male factor infertility and they believe it is female. My husband does not feel comfortable sharing his medical status so we agreed early on that we would share information about our treatments but lead people to believe it was related to me. And I’m completely fine with that.

As far as it being my daughter’s private information, our feeling (and this is just us, everyone is different) is that it is something we are proud to tell her when she is old enough to understand – we wanted her so much we were willing to go to incredible lengths. So as long as it’s not a secret from her when the time is appropriate, I think it’s ok to share.

Now there was a time when we thought we would need to use donor sperm. Had that been the case, we decided up front that she would know first – again, only when she was old enough to understand. We would not have told anyone those circumstances without first informing her.

5 Denver Laura { 11.13.12 at 11:28 am }

I don’t expect people to tell me how long it took for them to get pregnant so I don’t explicitly come out and say that I’m infertile. We have a transracial adoption, so I think people just jump to that conclusion already.

I did know of a lady that I would meet occasionally at a professional group meeting. One day I saw her at the RE clinic. We acknowledged each other with a nod but that was it. Didn’t ever talk about it again. When I saw her a few months later, she was pregnant with twins. I didn’t get to talk to her then either but the look we gave each other from across the room said everything. I know people who know her and they don’t know she had fertility treatments. I don’t feel it’s my place to share it either.

6 tigger62077 { 11.13.12 at 11:45 am }

I”m not shy about my infertility. I don’t mind too much if someone shares my story with someone it might help…but I prefer to know about it afterwards. Before would be better, but after is okay. Just don’t give out my contact information (besides my blog, which no one in my family has the URL for) before talking to me. I don’t want random people emailing me for information and taking me off guard. I would FAR FAR rather that family direct their friend to me instead of giving them all the assvice that is given to us that infuriates us to no end.

On the privacy end, we talked about this at the beginning. He always suspected it was his “fault” and doesn’t really care who knows, apparently. I try NOT to tell people, but I’ve been known to tell particularly pushy people that “no amount of chocolate cake, standing on my head, propping up my butt, or anything else you will tell me to do will solve the fact that my husband has funky sperm”. It usually shuts them up, and I have his permission to do that. I am of the opinion that it is not solely his fault, although I look fine on paper. If I have someone who is slightly pushy, I will tell them that I have issues not solvable by old wives’ tales means. I DO have PCOS, after all, even though the RE’s claim it’s not severe enough to have caused us issues.

We didn’t do treatments to have The Boy – he was a fluke, a gift from mom if you will. We won’t have to tell him anything about treatments, just that it took us a long time to get pregnant with him. Maybe later in his life, if he has a female spouse who is having trouble, we will tell him of our trials. Things he needs to know, things we can pass on that might help, but this is not something I need to think about right now. He has (hopefully) many years before this is a consideration, and I’m certain things will change, just like they did between our parents and us!

7 Esperanza { 11.13.12 at 12:48 pm }

I’m sorry, I have to quote G.O.B. of Arrested Development here: “Illusions Michael. I do ILLUSIONS! A trick is something a wh*re does for money.” Maybe the best TV line ever.

As for your question, I think I would probably be more open about someone’s infertility than they might be so I’d be worried to share in case I was going over someone’s boundaries. I am generally more open about these things than other people so I would be worried about that discrepancy when sharing others’ information.

8 KeAnne { 11.13.12 at 2:07 pm }

I do believe infertility is private information and up to me and my husband to share. Having said that, I’m fairly certain my family does not feel the same way or given it much thought. While we were in treatment, I was very selective about who knew and who didn’t, but once we were expecting via surrogacy, it was impossible for our infertility to be private. I didn’t necessarily wear a scarlet “I” or advertise the source of infertility, but if asked, I was honest. I try to be careful with other people’s infertility information because it isn’t my info to share.

I need to figure out how to address our surrogacy with Daniel fairly soon so that he doesn’t here about it from family (the same ones who blabbed all my details) before he hears it from us.

9 Heather { 11.13.12 at 2:10 pm }

I don’t out another infertile. Not my place, that is THEIR story not mine. When I have gotten in a conversation about infertility and someone comes up with a question that I don’t know the answer to, I usually direct them here. I’ll say, I found a lot of my information from Stirrup Queens here’s the website.

I was/am open about our infertility struggle. I wasn’t yelling from the rooftops or anything. However, if someone asked, I would tell. If someone wondered why we didn’t have children, I would let them know we were having trouble. For me, it was like someone asking me any other medical question.

My children? Unless my girls have problems conceiving, I will not relay their conception story. It’s just not information I think they need to hear. I never asked my mom how and when I was conceived. I don’t really care to know. I imagine that’s how it will be for them.

10 Cristy { 11.13.12 at 7:11 pm }

Though I’m not shy about my infertility, there was a period where my husband was. It was because of this that I rarely spoke about what we were living with, mainly because I didn’t view it as a “his” or “her” problem, but as an “our” problem. Since we are now both open, sharing our story with others is a given. In a lot of ways, it helps us connect and reach out to others.

That said, I don’t feel comfortable outing others. Even if they are open (IRL or because they blog), I still feel it’s a courtesy to ask their permission before sharing personal details with others. I view infertility?RPL as any other medical information and feel that it’s not my place to determine who should know others’ stories. It’s still too sensitive of a topic.

11 It Is What It Is { 11.13.12 at 7:39 pm }

Because infertility is a medical condition and generally (but not always) involves two people, I believe it is private unless the parties have given their consent. I sort of view it like I view all milestone life events (engagement, wedding, pregnancy, divorce, severe illness, etc): it is not my news to share unless someone asks me to.

I have many IRL friends who have conceived through all manner of ART, including donor gametes, and/or have adopted and it feels gossipy to want to share their details with others even when I am outright asked. Generally, I refer the person back to the source because, again, it’s not my news to share.

And, I think because we are dealing with the lives of children conceived in all manner of alternative ways, we need to be especially judicious.

And, I think that the fear of being ‘outed’ keeps many people closeted about their infertility.

12 Mali { 11.13.12 at 9:30 pm }

It’s like any gossip. If it isn’t our story, then we’re not free to share. My husband and I are now very open, but when we were going through IVF, he didn’t want anyone to know, particularly anyone in his family, and I shared the story only with one friend IRL (though with dozens on-line!). We’re less bothered these days, quite open about it if the circumstances are appropriate. For eg, he’s talked about it with work colleagues who have also experienced infertility. He’s made the offer (on my behalf) that I’d discuss things with various women if they’d like. He knows I’ve worked with an infertility/loss non-profit, and that I don’t mind talking about it with people going through the same thing.

If I felt someone I knew who had experienced something in particular, and felt that their story might help someone else, I’d either tell the story in vague terms, or I’d ask their permission first to either pass on their contact details, or to share their story. Infertility – as someone else mentioned – is private, until we decide for ourselves whether it should remain private or not.

I share this information on a case-by-case, person-by-person basis. I’ve just written a post about sharing only part of my story (the No Kids part) on my recent vacation: http://nokiddinginnz.blogspot.co.nz/2012/11/sharing-our-stories-or-not.html

13 Anna { 11.14.12 at 7:33 am }

When I was first in the trenches, nobody knew except my husband, medical staff and myself. I felt that it was extremely private. I only learnt about being in a community, the advantages of sharing information, of recognising infertility as not my terrible personal failure, by being here online.

I do not treat it as private now. I have occasionally been shocked by my mother or sister telling me about exchanges where they’ve reported telling strangers about my situation, my miscarriages etc. but I have come to see that as good, it enables people who have no experience of IF to connect with the details of my story. My job, now, isn’t to keep my family quiet but to make sure that they know as much as possible so they can be good ‘friends’ to other people with IF issues they’re encountering.

My standard presentation to others when there’s an opportunity to talk about conceiving or pregnancy is to say something about it not being ‘easy’ for us. I then move forward according to the response. By being just a little open like that, I have given a couple of colleagues/friends the opportunity to know I’m a safe person to talk to about IF. I am now comfortable letting people know about my experiences, probably because I am now a parent – I am still IF but I am not struggling with the anguish in the same way that I was.

I decide what’s private based on my understanding of what’s socially appropriate and my own personal feelings, and based on my judgement of others feelings. I remember being jokily chastised by a friend who told me that lots of people have miscarriages but most of them only tell others when they’ve actually got a baby, it was phrased as a ‘telling off’ after we had discussed a recent experience of mine. Maybe I misjudged her feelings about privacy, prioritising my own need to not keep it private any more. For me, at the moment, every time that I mention IF to somebody who isn’t close to me is an achievement that I celebrate as I want to contribute to my community acknowledging IF. So, currently, my reproductive history is not private.

14 Lori Lavender Luz { 11.15.12 at 9:38 pm }

I tend to err on the side of privacy because it’s like toothpaste.

But really, it’s a gray area. Anonymity and super-low chances of two of my friends meeting each other might make it OK to share info about one to another.

15 A Passage to Baby { 11.15.12 at 9:59 pm }

I’ll give you the standard IT answer: it depends.

My last company fired me after I asked the owner/head of HR/my boss (who had been through IVF herself) questions regarding IVF benefits. It was quite horrible, affected our treatment options (tick tock tick tock), affects my ability to be covered over FMLA, and still causes me to get very upset at times 8 months later.

I also have only told a subset of my friends – but that increases over time. Mostly because we have to use a surrogate and I really don’t want to answer THAT question over and over when the time (hopefully) comes. Getting tired of the “when are you going to have kids?” question as well. But that’s not to say I’m ready for everyone in my friend circle to know. Only a small subset that will grow if we are lucky.

There are a ton of other scenarios, but I guess it really just boils down to “how am I feeling about it today”.

16 A Passage to Baby { 11.15.12 at 10:06 pm }

With regards towards sharing others’ stories, I would first ask the story owner’s permission before passing info along. You can simply say to one friend “hey, I may know someone that has been through that, would you want me to ask them to talk with you?” and to the second party “I have a friend going through X, would you mind me sharing information or having them contact you about when you went through it?”

If the people will never meet, then I don’t see it as strict because I don’t divulge personal identifying information. In India I could tell a woman who was worried about her baby that was sick and born early, that my friend’s baby was born at 29 weeks and is now a very healthy and happy baby a few months later. The person in India doesn’t know if it is a personal friend or a blogger friend.

17 Stinky { 11.16.12 at 9:34 pm }

Great post and great replies.
In terms of the infertilitystuff, I think I’ve mainly, if talking about it, referred to “one of us” as carrying a chromosomal condition . . . I felt like it was only fair when talking generally to people. Obviously family and close friends know a bit more, and Mr Stinky is quite open about telling people also but I like to let him make that call, especially when paths may cross.
With regards to the ivf, most people – those who have been man enough to want to know! – know we have been through treatments as I shared my 2009 pregnancy (and consequently the loss of it afterwards) as an innocent fertile. Everything has just kinda spiralled from that. We will tell our child that they were conceived via ivf, definitely, but I feel less ‘protective’ about that than the donor sperm issue. We told our parents and siblings and again, a few close friends who’ve ‘been there’ for the last 3 tumultuous years, and that was more partly about the support from them, that they knew what additional things were cropping up on top of everything else. I don’t really regret telling my family – I was of the thinking that if anyone was going to be weird or shocked by it (my projection of course) that they do it now and get it out the way, rather than when the child is born and can pick up on it. There’s not so many really that know this is donor conceived, and I like the idea of leaving it to the child to make that choice (obviously the grandparents already all know) of who of their friends etc are told.
I also felt very strongly about not telling of the details on the donor form, because I want the child to be able to exist in their own right without someone trying to attribute characteristics like saying “oh, those pink eyes/stampcollecting tendencies/whatever, they obviously come from the donor.

Other people, I might refer to loosely, obviously no identifying details. Its not my story to tell, although, although I have and would direct someone to a blog if I felt it would help (I have asked the blogger first, because a subsequent issue could be my blog being discovered, so complicity may be required!)

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