Friday, 12 December 2014

Everything I have to say about being an infertility "urban legend"

This could be a very short post. Actually, I almost didn't write it. Then, I didn't post it for several months. After all, what is there to say about being an urban legend? It's not like I can give anyone advice on how to be an infertility urban legend. I can speculate (and have) about how I became pregnant, but it hardly feels useful to me, never mind anyone else. I could make platitudes like "never give up hope, anything can happen." But while that might be what some people really want to hear, for others it might not be the best advice. Sometimes people do need to give up hope, or rather, to look for hope down a different path. (See this post from An Infertile Man's Perspective for a great discussion of the significance of hope.) Mr. Turtle and I have been in that place of decision a few times in the past 2 years, and we don't take it lightly.

I suppose I should define "infertility urban legend" in case someone hasn't heard the term or used it in this context. I first heard it maybe a year ago, on someone's blog; I want to say the infertile chemist although I'm not 100% sure.  And I certainly read this post by Barefoot and... Basically, the infertility "urban legend" is the woman/couple who were told by experts that they couldn't conceive naturally, went through X diagnostic tests/treatments, possibly gave up hope of having a baby, either naturally or less naturally, and then BAM! got pregnant one day. One often hears about the urban legend from friends/family/acquaintances/strangers who know-someone-who-knows-someone who is an urban legend. The tale of the urban legend may be told to relay hope, to attempt to find common ground, or (this is how I most often perceive it) to stop the infertile person from relating those annoying uncomfortable facts about infertility already.

So why am I writing / finally publishing this piece?

I guess from a vague sense that I want to have some control over how my story is told. I can't really control it, of course, and I knew that when I started writing the blog. Most of my highest-rated posts have to do with the discovery of AJ's conception (i.e. Lightning Strike) and the subsequent drama. I have a few regular commenters (hugs to you all!), but they can't account for all those hits. I have no idea what the goals or motivations of my anonymous readers are and how they will interpret/read/pass on my story (or even if they read it at all. Maybe they were actually searching for stories about people being struck by lightning.) Furthermore, I don't particularly care. I find people's motivations and machinations very entertaining, but I'm not about to take responsibility for them.

Still. I feel like I should have at least one post out here where I state how I feel, so that it at least exists in the internet universe.

So. In no particular order.

1) Being an urban legend does not mean that the pain and fear of infertility goes magically away. Inevitably, after we found out I was pregnant, something we heard most often was "At least now you know you can conceive!" This from doctor, nurses, family. I heard it a lot especially after I feared/was sure we were losing the pregnancy. One of the urgent care nurses actually added "You know, a lot of people can't conceive at all." I didn't have the heart to tell her that I was one of those people. I knew she was trying to comfort/calm me, and I wasn't interested in correcting anyone's perceptions on the verge of a panic attack.

For that matter, I didn't say anything much to anyone who gave us the "at least you can get pregnant" line during that time, but in my mind, the answer always was "if you think I am ever, ever, ever going through this again, you are a fucking turd." The less profane translation being, while I could, barely, barely, imagine some parallel universe where I might find something positive about a miracle conception that ended in loss, there was nothing remotely comforting or hopeful about contemplating life in that universe. Nor is there now.

2) Being an urban legend does not mean that infertility is cured. OK, nobody's actually come up to me and said "Congratulations, you (and Mr. Turtle) not infertile anymore!" But its been, well, implied by some people in my life, who talk about this being the "first one" (and these people do know our history). Again, I have just let those remarks go. But they do touch on a sensitive spot, albeit one I can't really deal with yet. Clearly, the doctors who did our tests and drew the logical conclusions that we could not conceive naturally (or with assistance) did not know everything. But that doesn't mean our tests were wrong or that we don't have issues. I have egg issues, Mr. Turtle has sperm issues. Fertility does not improve with age. Lightning struck once, but can it strike again? Maybe it can, but AJ is also quite likely to be an only child. And that does make me a little sad, although at the same time a healthy living AJ is more than I dared hope for and worth more to me than almost anything in whole universe. Is that paradoxical?

3) "Just relaxing" does not lead to conception. That's hardly news to anyone in the ALI community, but just for the record, AJ was conceived during one of the most stressful months of my recent life. (My life to that point.) First of all, January is a really hectic time at work. Second, we were doing IVF for the first time. Third, IVF failed, and we were told not to bother even trying another cycle of IVF with our own gametes. Fourth, our house was burgled. Some time in between IVF failure and burglary Ember was conceived.  Fun, eh?

On the other hand, even though we had a lot of shit go down, Mr. Turtle and I handled it all quite well. I think the fact that we knew we were going to do IVF had a lot to do with it, because we  expected it to be stressful and were very deliberate about how we handled the stress. I worried less about work than I ever have (because I decided I was going to not care about stupid things). The IVF failure was crushing, but we did have a lot of support and we were able to care for each other and have rational conversations about next steps. The burglary was awful, but we put it in perspective. As I said to Mr. Turtle: "We can feel bad about all the things that happened this month, but we can feel good about how we were handling it." So, yeah, January was stressful, and we were stressed, but we did cope well, all things considered.

4) Control over ourselves - or our pregnancy/child - or anything or anyone - is an illusion. Again, this probably isn't news to anyone, and it shouldn't have been news to me, but. Other than joy-shock-fear, the biggest emotion I felt - and still often feel - with regards to AJ's conception was an overwhelming sense of being utterly helpless in the face of fate. AJ might live and grow, or might not, and in some scenarios at least, no knowledge or action of mine could change the outcome. Whether it's my personality, or the circumstances, or a bit of both, I've been unable to completely look away from this particular piece of knowledge, and sometimes I feel like I'm shattering from the inside out from the sheer awfulness of knowing it.  As my pregnancy progressed uneventfully, the logical part of me felt like the burden should be easier to bear because our story is a happy one. Why am I sometimes so negative? But if good things can be bestowed in the blink of an eye, they can also be taken away. When I come to this dark place, I can feel envious of people who have the consolation of religious faith and practice, because it seems like they have a mental/emotional structure for dealing with the questions, that the rest of us don't. Maybe.

Many years ago, I wrote a poem while walking along the ocean, that ended with these lines:

the waves break and break
but leave no pieces to be picked up.

I break and break and break, but throughout my pregnancy, I held on to the hope that my child and I are like waves on the ocean, and we will both be drawn back into something bigger and deeper than all the small pieces of this experience that I can perceive right now. And I hold on to it still.

20 comments:

  1. We received many of these same comments from friends/family/doctors when I got pregnant naturally in January of this year. This was after having conceived our first baby through IVF and we had literally JUST decided to start trying for a second baby. We agreed to try naturally for 6 months since we were always “unexplained” and then do IVF again. That miracle pregnancy ended in a miscarriage and I so very much hated all the positive comments.
    After IVF #2 the clinic gained more insight in our issues. For IVF #1 we had 8 embryos on day 1 of which 2 were still alive on day 3. For IVF #2, we had 16 embryos on day 1 of which 1 was doing well on day 3 and 1 was delayed (consisted of 5 cells only) and they said they had “no data on any pregnancies resulting from a 5 celled embryo” (but I’m pregnant with fraternal twins so I guess they do now). In conclusion, they told us that this is an egg quality issue and that when trying naturally, once every year or so we might have a good egg. Then all the other conditions would also have to line up perfectly and yes, then a miracle natural conception could happen – but it’s not very likely and it would have been a very bad strategy to hold out hope for that to happen.
    I am so happy for you that your miracle conception stuck and turned into AJ. I remember how absolutely shocked and over the moon happy I was when I found out I was pregnant naturally, and even though I miscarried, I cherish that memory.

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    1. thanks for sharing your story! I liked the fact that now you are evidence that a 5 cell embryo can implant and develop.

      The "one good egg every now and then" explanation for miracle conceptions makes sense to me. I also like how you hated the positive comments from other people, but have good memories of your own happiness.

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  2. I am an urban legend too, getting pregnant naturally the cycle after I got a referral to go to the RE after a year and a half of trying. It was annoying the way my doctor insisted I would be back in a month or so pregnant. I am happy that was the case, but hearing the "I told you so" was a bit trying. But getting pregnant naturally once (or staying that way in my case) isn't a guarantee that you can pull that party trick again. And I have conflicting feelings about being an urban legend, especially since I got out so early in this game. I am very grateful, of course, and incredibly happy, but I don't want to be the cousin's friend's dog-walker's hairdresser's ex-flatmate. I don't want my luck and happiness to cause anyone pain. And like you, I am not cured (maybe misdiagnosed, I can see that argument), and there is no guarantee that I can pull this party trick out of a hat again. But I will have to. If we want a second child (fingers crossed this pregnancy results in a take home baby), we will have to do it on our own, because I won't qualify for public funding and we can't afford fertility treatments.

    Oh, and I was definitely not relaxed the month we conceived so that argument is out for me too. I was just coming off another early miscarriage, was trying like crazy (and failing) to lose weight so I could qualify for publicly funded treatments since I just got my referral, and the day of conception I power-walked a 10k I was not ready for and dealt with a lot of shit from my friend's evil mother which had me wound up tight for days. Not relaxed and barely coping with day to day life.

    To be honest, I think the human body is just so damn weird that the medical world just can't fully wrap its head around it. Stranger things have happened. And some very few of us get very very lucky.

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    1. Thanks for sharing your perspective. I agree that the human body is just so damn weird! Often that is a frustrating thing but occasionally as you say, it also surprised is. You say "there is no guarantee that I can pull this party trick out of a hat again. But I will have to. If we want a second child (fingers crossed this pregnancy results in a take home baby), we will have to do it on our own, because I won't qualify for public funding and we can't afford fertility treatments." It is a similar situation for us, most likely. There isn't any publicly funded treatment here, but with one child and no evidence that fertility treatments are going to make any difference anyway, we'll probably be relying on natural conception. Unless some other evidence or logical strategy presents itself.

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  3. Thank you for this post. I've seen a few patients with spontaneous conceptions after being told it was impossible or before moving to IVF. Some of them adopt the cliches "it was because we stopped thinking about it or trying so hard!" A part of me wants to correct them, but I don't want to come accross as a dick. My cousin was one of those who spontaneous conceived after her first was born via IVF and she acts like she was never infertile at all. Pisses me off every time I hear her describe how it happened because they were so relaxed in Hawaii... Oh, it just a few weeks I can finally call them out on it.

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    1. Thanks for the comment. If I hadn't connected with the ALI community and other people's stories, I might have fallen for the the "we stopped thinking about it" myth, although even that isn't true in our case - it was timed sex that led to conception. I think people want so badly to understand things and make sense of them that adopting an illogical explanation feels better than having no explanation and having to deal with the resulting uncertainty and lack of control.

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  4. I definitely wanted to be the infertile urban legend. When you have a diagnosis of poor egg quality, hearing stories like yours keeps the rest of us going in a way, through those months in between cycles when all we can do is try naturally, because we hope that we're also going to get lucky and catch that one good egg.

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    1. That's true, there is so much "in between" time and you need some source of hope/something to do or try (if you are not more in need of a break from trying).

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  5. I was a legend, too, I guess, though not famous enough to be legendary. Unexplained secondary infertility and RPL, and suddenly BAM! Pregnant. I walked on eggshells the whole pregnancy. I still deal with body-hating, with the fear that my children will be taken from me as miraculously as they appeared, the irrational fear that other people's pregnancies will also be taken from them. I'm always grateful to come back to people in this community who understand that.

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    1. Thanks for your post. I sometimes worry that I am too pessimistic, at least in certain moods, but everybody has to embrace their reality with whatever past experiences and uncertainties are in it. You are right it is nice to be understood.

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  6. So much of what you wrote about resonates with me. We fall into the "miracle" camp, too, and lo and behold, it happened for us twice (although the first time with a devastating outcome). I was told, flat out and by multiple REs (including CCRM) that I had a 3% chance of ever having a baby with my own eggs, through IVF or naturally.

    But you are absolutely right that getting pregnant doesn't erase anything. It doesn't make you feel any better about your body and how it seems to be preventing you from doing something that comes so naturally for most women. It doesn't help you deal with the sibling questions (and your own feelings about having that choice essentially taken from you).

    You are absolutely right that what it does do is give you perspective and make you thankful for what you do have. It makes you more compassionate. And it absolutely lets you know that we have no control. We were reminded of that both through infertility and through loss and it is a heartbreaking way to learn that lesson.

    Also, the stress comments! Just relax! Oh, my God. I would like to slap people who say that. The month we got pregnant this time, we were just 3 months out from having our daughter die, from me spending 10 days in the hospital (4 of which were in the ICU) and having 4 surgeries, and I was absolutely depressed. Oh, and we were getting ready for IVF the following month. Relax? Sure. Total bullsh*t on that being something that helps.

    I actually have been thinking a lot about the second child question (particularly since most of our friends are having their second or third). I anticipate my OB asking me about contraception and I am not going to take any. If we, miraculously, got pregnant AGAIN, it would be fabulous. I'm certainly not going to do anything to prevent it.

    Anyway... enough from me :) Love this post.

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    1. Thanks for the comment. It's good to hear from others. Heh, funny you mention birth control because that has also been on my mind. I will probably post about that soon because I don't know what to think about it and I don't recall any IFfer ever posting about what or if they used BC after birth. But now I know your position, so that's great!

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  7. This was a great post, one I really enjoyed reading and kind of want to share with everyone I know xx

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    1. Thanks Adi, feel free to share. :-D

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  8. You express your story and emotions so well here and I agree with Adi. It makes me want to share it with all those that think pregnancy solves or cures infertility. Beautiful words about the breaking waves.

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    1. thank you Marcy. :-) It's why I want to stay connected with this blog community!

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  9. I guess I am sort of an urban legend too. I have endometriosis and it took us 4 years (almost to date from stopping birth control to giving birth) to get our boy. This involved many doctors' help and 3 rounds of IVF. I truly didn't believe we would ever get pregnant on our own. Almost two years later and we did get pregnant, without help. It also only took one time. O_o I have disliked all the "told you so's" as no one can know what will happen. We are lucky and grateful.

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    1. Congratulations Heather! pregnancy is a miracle however it happens. Yeah, nobody should say "I told you so" because nobody really understands how it happens! If everybody could really be an urban legend there would be no infertility. Lucky and grateful is all you can say for sure at the end of the day. I hope everything goes great with you.

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  10. Funny, my friend IRL has a history as sordid as mine, and after 7 years of trying while poised to do a donor cycle, she just got preggers naturally. It's crazy because it happens, but unlike so many naive and unwitting fertiles who try to offer hope and comfort with stories like these, I NEVER cite her as an example of what to do. It's like telling a story of someone struck by lightning as a way to help someone else lower their electric bill. But I sure am glad it happens when it does!

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    1. LOL at the idea of lowering an electric bill by being struck by lightning. (I love metaphors and enjoy picturing them literally). You are right; urban legend pregnancies can be a happy "ending" for sure, but also an ambiguous one because there is no way to replicate the results.

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