Monday, May 9, 2016

#MicroblogMondays: Countering the shame of infertility

Not sure what #MicroblogMondays is? Read the inaugural post which explains the idea and how you can participate too.

A few years ago, while working as a lecturer teaching genetics, I spent a class period talking about diagnosing genetic diseases and twin studies. Following spending weeks talking about classical genetics, my students were a lot more alert and immediately had lots of questions about all the different assays. It was during the discussion about twin studies that I learned I have two students who had a twin/ part of a triple. Both students began sharing with the class their family history and answering questions about fraternal vs identical siblings (which helped drive home the distinction). But then they both did something I wasn't expecting. Both of them talked about how they were conceived through IVF. I was utterly shocked not only to hear them share this information openly with their fellow classmates, but to also see the pride that was there as they talked about how they came to be in the world. The pride they had particularly in their mothers for undergoing these treatments.

I thought about these students over the weekend, both with the looming holiday, but also following this video by Leah Campbell (formerly Single Infertile Female). 

If you read Leah's post about this project, you'll find that her request for stories was met with overwhelming amount of entries and people sending pictures. And after watching this video and wiping away my own tears of gratitude, I got to thinking about the stigma and myths that is associated not only with infertility, but also with fertility treatments and the paths to resolution.

And it made me wonder why this is. Why there is still this stigma.

With my students, there was a clear pride about how they were conceived. Talking with them both after that one class, they both were aware of the struggle their parents went through to conceive them. One talked about her mother's 3 rounds of treatments prior to the pregnancy that lead to her. The other talked about PCOS. And both talked about how much their parents rocked and were so brave. "Infertility is a terrible thing," one said. "Which should tell you about how much my mom rocks."

Despite this, there's still a debate about whether to share information like this with children. Unlike adoption, where more data is showing the importance of openness about the child's history, a couple can easily remain mum about ever having dealt with infertility to begin with. For years there's been discussions about how this should be a choice for the couple who survived this trauma and are now parenting their biological children.

Yet, given what I've seen, I wonder if by remaining quiet we're actually perpetuating the myth of shame surrounding this disease. And that we are also underestimating our children in the process, assuming they couldn't handle this information.

I'm the first to admit that I'm coming at all of this with one point of view. That my decision early on to be out of the closet has colored my view point. But, like with adoption, I'm wondering if it's time we revisit this topic. That if we want recognition that infertility is a multifaceted disease that affects 1 in 8 couples in the US (1 in 6 couples in Canada and 1 in 4 couples globally), we need to start talking about this. 

And this includes with our children, sharing with them how they were conceived. Giving them the chance own this part of their story too.


  1. I will proud to tell my daughter that she is a product of IVF and our infertility journey when she gets a little older. And I will also tell my son that although he was conceived naturally, we were in the middle of treatments when he surprised us. I am slowly becoming more open in telling friends about our infertility but I still can't put it out on Facebook. Not only is my husband against it (it's that New England blood- ha!), but I don't know all of my friend's different medical issues so why should they know ours? It's hard because I know if everyone was more open then there would be less stigma and more knowledge of the issue but it's also nice to have some privacy in my life.

    1. I think there's different levels of sharing and also that those change over time. For some, it means being publicly out of the closet. For others, less so.

      I'm not on Facebook (for personal reasons), so I can't comment on this level of sharing. But I do believe this level of sharing is outside the comfort zone of many. Just as it would be for someone to announce they have cancer or diabetes or mental illness.

      That said, I know people who really intend to never talk about this. And my question is why. Even in your response to me, I can sense anger. Why is there anger? Why is there fear? There's no reason for any of it because infertility is a disease. A disease many believe to be actually a sign of personal failing or some sort of karmic retribution for past wrongs.

      I guess my point is not that we should be shouting from the mountain tops that we have this disease, but more a question for why these feelings exist. And why there's still this push for secrecy.

  2. I think some of this may be generational...I'm one of the oldest millenials, and there's a way in which I take a certain level of publicity about life almost for granted. It seemed completely natural to me to post to facebook that we were struggling with infertility (although I did not post details of my treatment cycles or where we were in terms of treatment). I consider myself a fairly private person and I've seen some post even more details of IVF/treatment/infertility stuff very publicly. Not to say that other generations can't or wouldn't do this or that there aren't people who have been very open in other generations (or that there aren't millenials who are very private), but I think that the internet and the rise of social media has changed how millenials think of secrecy/privacy.

    As far as sharing with my daughter...her embryo photo is in her baby book and how she came into our lives using IVF technology is a part of her story. Also, I want her to be aware of the PCOS/endocrine medical history there.

  3. I can't fathom the idea of NOT telling my daughter that she was conceived via IVF (in fact, while still pregnant with her I bought a kids book that explains the process to read to her while she's young). Like your students, I am PROUD of how hard I worked and how much I endured to bring her into this world. I do think staying quiet perpetuates stereotypes and my husband and I, personally, have chosen to be very open about our struggles (post on Facebook, discuss regularly with both friends and strangers), etc. I know not everyone is comfortable doing that so I talk about it a little extra to cover their struggles too. :-)

  4. I understand, to an extent, why some choose to remain quiet about it. I was personally always completely out about it (and seeing some of my Timehop posts from 6-7 years ago, I've sometimes wondered if maybe I was TOO out... did all my Facebook friends really need to know every detail of the process? My blog was one thing, where people were coming specifically to read about that process, but Facebook? I had my fair share of TMI posts for sure.) But even given that openness, there were times when I had wished I hadn't said a thing. Sometimes that came from something insensitive that might have been said to me by someone I otherwise trusted and cared about - that was always a sting. And after both of my failed cycles, I found myself wishing I hadn't brought anyone else along on that ride... it was just SO hard to have to worry about anyone else (the tears of my friends and family who were invested in the process with me), when all I wanted to do was collapse into my own grief.

    So I can see how, for some, the benefits of remaining quiet throughout the process might seem worth pursuing. And I can also see how, even after success, it might be hard to then open up... if you've been quiet about it for so long, how do you then tell your loved ones your story without making them feel like you were keeping something huge from them all along?

    I also have a close friend who is from a very strict religious family. She always told me they would never understand/approve, so she pursued IVF and was very quiet about it... only telling a few of us she knew would never talk to her family about it. They adore her daughter now, and I can't imagine they would love her any less if they knew... but I know for my friend, it is a lingering fear for her. So she remains quiet.

    Point being, I do totally understand why some choose to keep their struggles private. But I also love seeing the shift that has been occurring, even in the last 7 years since I first joined this little world. I was blown away by the responses I got for that video, and by the comments that continue to pour in from those who are willing to be so open about their struggles in that space. There have even been several women who have commented to say they struggled 20, 30, 40 years ago, and it was at a time when no one talked about it... so I love to see that that's not the case today. More people are talking about their struggles and opening up about infertility than ever before... and it really is a beautiful thing to see.

    1. I'm so glad you've weighed in on this because you are providing answers to this question. Years ago in an infertility support group, I met a couple who were also strictly religious. She was diagnosed with PCOS and had been going through round after round of IUI because according to their beliefs IVF was off the table. Yet every RE she saw told her that IVF was likely her only option for conceiving. The added rub was that her family regularly criticized her for being selfish because she only had one child. Adoption was off the table because her husband wasn't open to that option. In short, she was stuck. And it was driving her mad.

      I learned last year that she did undergo IVF. I don't know the details for how that decision came about, but someone did say that it they were secretive about it. So I get the religious end.

      Still, I also wonder if religious institutions would change their tune if pressed. We've begun seeing this with the LGBT community and the Catholic Church (though they still have a LONG way to go), so why not also with reproduction and reproductive rights? No one should martyr themselves for this, but there are still so many who pass judgement and rules who have zero clue what they are talking about and they need to be challenged.

    2. Yeah, I kinda get the position of the Catholic Church with potentially destroying life, but I still hate it because the intent is to create life!! I wish the Church would at least take a stance of allowing IVF if unused embryos were donated to other families.

  5. I'm probably guilty of keeping quiet and perpetuating the myth of shame over infertility. Obviously I think it is different when you don't have children, as I am clearly still not in the mothers' club, and open to judgement, pity, scorn, you name it.

    I'm pretty sure if my IVFs had worked that I would have been quite open about how my children were conceived. I certainly don't see any inherent shame in that. Quite the opposite.

    I do get concerned when I see people who have used donor eggs/sperm/embryos and don't want to tell. I don't see that as being any different from not telling a child they're adopted.

    Once again, you have me thinking about shame and going public. It's an issue I really grapple with, because I don't want to be defined by my infertility/childlessness, but I don't want to hide either. Clearly another post I need to think about.

  6. I've always been a big fan of telling kids the truth, appropriate to their level of understanding. While I understand why other people might have reasons not to, I'm happy that it seems like the tide is turning, and maybe the stigma of adoption, infertility, and other issues will disappear.

  7. I dont understand why people are quiet about it. To me, keeping it private is being ashamed of it. I have always been open about infertility. I have shared it all over social media and helped several friends. Several people who didn't know who to talk to about ti came to me and I helped them along their journey. Our kids are 3.5 and I tell them all the time that mom and dad waited a long time to meet them. I love hearing this story. I'm so happy to hear the students were proud of their parents. I hope my kids feel the same one day when they hear what we went through to have them. Great post!!

    1. I'm asking this question to understand as I know that people have their reasons for not sharing this information in any way. Leah talked about religion and that is a very real thing many have to deal with as they know fertility treatments are seen as counter to the practices of their faith. But I know there are other reasons. And from the comments I've been seeing, I think a lot of it is also generational. That the previous generations (read late Baby Boomers and Gen-X) have paved the way for this openness.

  8. So I read the post last night and asked the kids about it. Their response was that they didn't think about it. Now, will that change at a different age -- probably. But at 11, they didn't see the big deal. At 41, I do.

  9. I think it's definitely a privacy thing to decide if you want to tell everyone about your IVF journey, but telling your child is simply telling them part of their story. How hard you worked to get them into your family, how very wanted they were, and how the amazing medical technology helped. I won't get to have this conversation of course, mine will be more about adoption and helping my child to see how my years of medical technology doesn't mean that they were runners-up, but I think it's important for kids to know their story and have pride in it. Because you know at the playground when people say how babies are made...that story is changing. My students (8th graders) are more and more aware of IVF and infertility because they have friends who (or they themselves) were conceived that way. I have worried that me being so open made my future child's story public before they had the chance to decide how much they actually wanted out there, but there's lines for privacy that protects my future child. I want him or her to know the journey that brought them into our life, and to be proud and not ashamed of it. But, to each their own. I think this is definitely a balance that will shift as time marches on and people feel more comfortable talking about all these complicated family building pieces. Great post to think about!

  10. Like Mali (and perhaps because I'm from an older generation -- late Boomer/early GenX), I have not been very public about my infertility -- although anyone who knows us knows we wanted children (& that I was pregnant once), but we don't have any. Draw your own conclusions, right? I too struggle with wanting to be more open, but also feeling strongly that it's really nobody's business. But it's one thing to tell all & sundry about what you went through; quite another to tell your children about the struggle you had to bring them here. I think they deserve to know their own stories.

    A variation on this topic: whether to tell your subsequent children they had a sibling who died before, at or just after birth. I saw many parents who came to our support group struggle with this issue -- what to tell their kids, when & how. But I also saw many others who never hid the issue and talked openly with their children about the brother(s) &/or sister(s) they had lost. They displayed photos or sketches & other memorabilia in their homes, baked cakes for birthdays, and brought their kids to family events sponsored by our support group, such as the annual butterfly release and Walk to Remember. I loved it and I admire these parents hugely. I know a few people who only found out later in life that their mother had lost a child and they were completely floored by it.

    (One of my aunts had a baby before she was married that she gave up for adoption. She went on to have other children -- but I have no idea whether they know about their half-sibling. I didn't know myself until I was in high school. I believe my cousins deserve to know, if they don't already -- but I also believe that it's not up to me to reveal that information to them!)


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