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Yesterday, I talked about how I’m battling prenatal depression. Today, I want to talk a little more broadly about the liminal space of pregnancy after infertility.
Pregnancy after infertility is such an unsupported realm of uncertainty. For those of us who are pregnant, especially for the first time, we’re unsure about all the random weirdness that happens to our bodies. We worry about losing our babies. We worry if we’re doing things “right” or “well” – such relative concepts. We hold ourselves to often unrealistic standards and we are cruel with ourselves should we not meet them.
On the flip side, people don’t understand why we might be worried, scared or even sad. People assume that pregnancy is all sunshine and rainbows when in truth: pregnancy can be downright ugly, painful and scary. Thankfully, I don’t think my pregnancy has reached those kinds of lows. But for some women, it all but knocks you on your ass.
Now add depression on top if that all.
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As I work through this and as I make strategic support plans for the high likelihood of post-partum depression to follow once the Knish gets here, I’m trying to take a step back to reflect on what lessons can be gleaned from my experience so far. Here’s what I’ve come up with:
First, prenatal depression is real, valid and seriously under-recognized, reported and treated. Second, collective emotional support resources for the pregnancy after infertility community are seriously lacking.
I feel like we as a community do a lot to keep each other going on the journey, but once some of us reach the precipice of pregnancy and parenthood, suddenly, the anchor’s been pulled up and we’re set adrift. And I’m not saying that it’s a matter of fellow passengers suddenly abandoning ship – although that does happen. When it’s just infertility that we’re dealing with, we have plenty of life rafts and life jackets in the form of professional support outlets: RESOLVE, therapists, support groups, coaches, tons of books, websites, forums and message boards.
But where are those life jackets and preservers when we see those two lines? When we get the call from the adoption agency? Support outlets for pregnancy and parenting after infertility are few and far between. And I think we can – and should – do better to support those going through this transitional state.
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There are some resources out there. PAIL Bloggers is a great example. I’ve been largely a lurker but it’s a growing community and one for which I’m grateful exists. For those not in the know, PAIL Bloggers hails itself as “a community resource for what comes next” and is open to the Pregnant and/or Parenting through Adoption/Infertility/Loss community.
Mel has written some great thoughts about the feeling of being off-balance once finally pregnant or parenting after infertility over at BlogHer: Pregnancy after Infertility is Neither Here Nor There. And A Little Pregnant has a frank, no-holds-barred piece on The Bitter Girl’s Guide to Pregnancy After Infertility that’s definitely worth a read.
With regard to professional support and resources, you can find collections of pregnancy/parenting after infertility articles and resources at RESOLVE, RESOLVE New England and The American Fertility Association. RESOLVE even hosts a Living After Infertility Resolution Online Community at inspire.com.
And honestly, a quick Google search turns up resources from a handful of other places like fertility clinics, message boards and other fertility/TTC news and community aggregates.
But I’ve gotta say…
Support for a community as liminal and transitional as pregnancy/parenting after infertility feels sparse.
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So… what do we do about it?
If you’ve been reading me for more than just this post, you know I like to call out and name the problem/beast for what it is and then make a plan of action to do something about it.
So if the beast in this case is sparse support for the pregnancy/parenting after infertility community, what can we do to support them?
This is one of those times where I don’t have a concrete answer, so I’d love to hear from you. Whether you’re pregnant, parenting or still in the trenches – I think it’s important to hear from all stakeholders. Because let’s face it: even if you’re still going through infertility, the hope is that you will someday parent, somehow – right? So you need to know that this untethered boat waits for you too, so why not help work to help throw a line out to this community that you may soon join?
What can we be doing better as a community? What else could infertility organizations offer to provide more support? How can we leverage what exists in better ways?
Let’s chat and brainstorm in the comments.
I have a 2yr old son from IVF. We had numerous losses before finally saving up enough for IVF. I was terrified to tell people we were pregnant. We waited until I was 20weeks before announcing it publicly. I find myself watching my son daily and crying out of fear/amazement/happiness. I’m overwhelmed with emotion knowing he is truly mine, and in awe that he chose us as his parents. I feel that I hold onto him tighter than some other parents do and I’m terrified to try for another. We are currently looking into FET in the new year (we have 2 frozen 5 day blastocysts left) and I am downright scared. I want to stay positive yet I need to stay realistic. I have gone from hearing the frustrating (when you relax it will happen) comments to “well it worked the first time so you’re fine”. No I’m not FINE! I won’t say I’m depressed, but I know I’m not myself. I struggle daily with finding my identity and feel awful for that. I wanted nothing more than to be a Mother for years, and now that I am, I want to be “me”. I don’t want to be so and so’s wife or mother, or the infertile woman. I want to wake one morning with. I pain (I have stage 4 endometriosis) and be able to feel normal.
I didn’t struggle during my pregnancy with my son with depression, but it sure wasn’t an easy pregnancy. Yes I was happy I was pregnant, but the hospitalizations, fear of surgery and consequences due to my endo raised my stress levels. I wish all of you luck in your journey and peace with your decisions. I can only hope our FET goes well and I can work through my emotions. Love to you all!
Thank you for PAIL! I had no idea it existed and have longed for a place where I belong.
Although I’ve dropped off here and there, I am one of those rare bloggers who did not disappear after her kid was born. I’m still here 3 years later, bitching about IF because it’s still around. It doesn’t disappear when you have a knish wandering around the house.
I have found parenting after IF to be a lonely place and returning to treatment for #2 (DE IVF specifically) to be even lonelier. I wrote about it somewhat recently: http://www.dochaschronicles.blogspot.com/2013/02/the-great-divide-between-ifers-and.html and I keep saying that those women who denied me access to a support group will one day be in my shoes and realize that they’ll need each other just as much as they did back before their kiddo. As for what to do about it, I think support each other is the only solution here. PAIL seems like a great place to start.
Okay I have to say I’m a bit relieved, because I didn’t know what the heck was wrong with me. We got surprised with our placement of our daughter in Oct. The day she was born, is the same day we got the call to see how soon we can make it to Tulsa from CA. Weirdly each month since she was born I’m still dreading Mother’s Day. WTFrak? Shouldn’t I be happy about this day? My mom seems to think so, and doesn’t understand why I’m not ecstatic., but instead handling it with a sort of ambivalence. Don’t get me wrong, I love being a mom. I love this tiny human that God and her first mom has entrusted in our care. But I need constant reassurance that I’m doing a good job (sounds horribly insecure – THANKS IF!)
Do you think part of it is that the person this long IF journey had turned me into (cautious, realistic, sometimes cynical) is still trying to hold on and not be forgotten? Sounds twisted, yes?
Thank you for this post. It saved my sanity. I will look for blogs in the PAIL community. Good luck with your pregnancy.
I followed your blog for a long time. Since before the video where you “came out”. 😉 And then I fell off the infertility blogging wagon for a while. But rediscovering your blog, I just wanted to say so very, very happy I am for you. I wish you an uneventful rest of your pregnancy! I hope to check in more often from now on. xo
I would love more info about what keeps people grounded and able to keep moving on toward the goal when you’ve been knocked down so many times it doesn’t feel like you can stand up again. This journey can be so long and painful that at times there seems like no light at the end of the tunnel. In fact I’ve learned some individuals do choose to stop trying and accept a life without children and are ok. I would love to be able to say I’d be ok if my journey didn’t end with a baby but I can’t right now. Part of me believes I can’t probably because I’m not there. I’ve realized that there are more days I’m ok than days I’m not which is a great place to be. There are triggers that “derail” me and I have trouble getting back on track once derailed. Before the triggers I have hope and I can focus on the upcoming IVF cycle and do an on job of staying focused. When I get derailed I’d love to have some strategies to keep myself from becoming anxious. Once I’m anxious is when I then begin to hold on tight to all the fear and in result it takes longer for me to let to and push forward on a path to regaining the lost hope. It’s a vicious cycle I know all too many individuals face. Keiko thank you so much for this space. I understand your journey is taking you somewhere different than a lot of your readers here but you have to keep on your journey. You’ve worked so hard to get to where you are and are continuing to do your best. Thank you!
You are absolutely right on several counts. There is less support/understanding for those pregnant and/or parenting after infertility and the many unresolved feelings that struggling with loss or infertility can bring up. You’re also right that I do hope someday to become a parent, and I also hope that at that point, there will be a support community for that. No one talks about prenatal depression even close to enough, either in the “regular” mothering community or the infertile/PAIL community, so that’s a very good point. I’m glad you’ve brought it up, and think it’s a good place to begin the conversation.
In the end, this is your space. You need to do what you need to do.
As someone who is still in the trenches, though, sometimes it feels as though the entire world revolves around mothers/pregnant women and meeting their needs. I know that’s unfair, since women expecting after infertility have so many worries and feelings and needs for support that are different from the “fertile” mothering/pregnancy community. But there’s an immense frustration and pain when I’m not sure when/if I’ll ever parent, and that uncertainty can feel profoundly destabilizing/cause me to be less empathetic and sensitive than I should be. And let’s face it, I’m injecting myself with hormones and continuing to battle a many-years long struggle with depression that’s been exacerbated by infertility – neither of which are exactly ingredients for lots of empathetic, rational thought on the subject. Intellectually, I can completely agree with what you’re saying. Emotionally…some days, I’m just not going to be in the space to hear about pregnancy stuff, even as much as I hope to be pregnant soon and want a space for that too.
I do really enjoy reading here, and hope you will continue to write. These are important issues to address. And if/when I ever make it into that “untethered boat”, I will be glad for some of these resources.
Some of the ladies from our Dallas RESOLVE group started a pregnancy/parenting after IF group for those of us that went on through pregnancy since we couldn’t attend the RESOLVE group (they even got this new group registered and sponsored as a RESOLVE group). We meet once a month at a restaurant, we have a secret FB page and we have monthly play dates. I truly do not know what I’d do wo these women now as a new mom or how I would’ve kept it together through my pregnancy. The ongoing support is so fundamental. I would say RESOLVE needs to encourage its group leaders at each chapter to make sure this type of group in started for their chapter and kept active.
I for one, am really impressed by your honesty and poise navigating these really difficult issues, especially in this community, that can feel like kind of a minefield sometimes. From where I stand, you are sticking to your mission statement, talking about what is important to this community. Because pregnancy and parenting after infertility IS important to this community. It might not be important to all parts of this community at the same time, but nothing can be. When a community is defined by trying to achieve something that is eventually achieved by so many, while not immediately achieved by all, it is impossible to always be addressing everyone at every point in their personal journeys. You need to write about what is important to you, Keiko and right now what is important to you is prenatal depression and a harrowing lack of support. And you’re writing about these things because they are also VERY IMPORTANT to other people as well.
I hope you continue to write about these very important issues. We do need your voice. We do need your words. Please keep writing.
I feel so glad to have your voice in this community, Keiko. You’re giving a space for the conversations about those of us pregnant and parenting through IF and loss. This is so important. We’re a subset of the ALI community that often struggles to find its place and voice, and I appreciate your help in helping to keep these conversations going.
Coming from a place of secondary infertility and loss, it was weird to me that every blog I read about someone going through infertility who got pregnant either vanished or spent a lot of time apologizing for blogging about pregnancy at all (or occasionally migrated to a different space to never mention infertility again, just pregnancy and parenting). Having just been pregnant (successfully wahoo!) I found PAIL to be a good support system, to have enough voices around the blog roll that I could figure out what I was going through was normal (enough). I like to hope that if you’re in this community and not yet a parent or not yet decided not to parent, that you have some smattering of hope. While we were TTC it was really nice to see what happened when people became parents, that there was some hope out there, that there was a chance it would happen for us too.
Do we talk about prenatal depression enough? Absolutely not. I probably should have pushed my doctor harder for a real evaluation of my mental health, but I didn’t. Are there resources around for helping explain to your doctor how much of a problem it is? I don’t know, but if there are, I’d love to know about them and drop copies off with my doctor who was all “oh no, don’t worry so much and you’ll be fine.”
I think it’s kind of inevitable that there be a split between those who are pregnant or parenting and those who are not, and I don’t think it’s all bad. There’s a lot of pain on both sides about the journey and it’s reasonable to find a niche and stick with your niche rather than reading blogs where the authors are in all different places treatment-wise. I guess I don’t see a need to be “united” all the time. That said, I see a big difference between speaking FOR the ALI community and speaking TO it. Most bloggers are speaking TO others in the community and not suggesting that their personal experience represents everyone’s experience. Very, very few are speaking FOR the community, like to the media or something, and when they do, most do a great job of pointing out repeatedly that their story is one among many.
Specifics on supporting the newly/currently pregnant? Encourage them to keep telling their stories and to wander over to PAIL to see what others have to say. Don’t be afraid of hurting others, because I at least get hurt by things because of who I am and where I am in life. It doesn’t have to do with the author at all. Totally cried at a commercial the other day, nothing to do with the creators or the product.
If it feels like there is nothing out there for support right now, imagine what it was like 15 years ago, when I had just lost my daughter, was beginning to realize I might have an infertility problem on my hands, was desperate to conceive again, and was looking for support. 😉 There were no blogs in those days — mostly just message boards at places like iVillage, Baby Center, StorkNet and IVF Connections (which still exist, of course). I was new to the Internet & leery about putting myself “out there” so I wound up joining a private listserv called Subsequent Pregnancy After a Loss (SPALS), which was founded in 1996. The website doesn’t look like it’s been updated in quite some time, and I know listservs have fallen out of fashion, but it still exists — I still get e-mails from them. I have not posted there in years, once it became clear to me that the “subsequent pregnancy” part of the equation was not going to happen for us, but it was an absolute godsend to me back then. http://www.spals.com
Two great books on the subject were published around that time… yes, I know 10-15 years is a long time ; ) but there is probably still some good information in there, and I don’t think that anything substantial has been written on the topic since then anyway:
* Pregnancy After a Loss by Carol Cirulli Lanham
* Trying Again by Ann Douglas (a well-known Canadian writer on pregnancy and parenting issues — she was a SPALS member and interviewed many of us, including me, for her book)
I can relate to the world of depression, something I have struggled with over the years, especially in my teenage years. It is also great to “hear” from you after being gone from your blog for a bit, knowing that you are okay for the most part, and I do hope that you can find an answer and some strength in navigating this world of prenatal depression. You and your baby deserve to be happy and healthy.
But having said all of that, I have to say that I can’t help but feeling like these last couple posts just jumped from what I thought was an “infertility” blog to more of a “pregnancy or parenting after infertility” blog, which I thought in the beginning of your pregnancy you said would not be the case. I just can’t relate and it’s not the kind of blog I really want to read. I will probably get some flack for this, but I wanted to say something. I’ve read your blog for a while and I care for what you have to say, and I have a curiosity about you and your growing baby personally, but I feel a slight sting from, I don’t know…feeling out of place here now . I know depression is no joke…but I guess the whole depression + pregnancy thing is just foreign to me. The last bout of depression I had was right AFTER the time I was pregnant…when my babies died at 9 weeks. Sorry, I guess I just can’t relate.
And this…”Because let’s face it: even if you’re still going through infertility, the hope is that you will someday parent, somehow – right?” Well, not really…while I am still trying and have more treatments ahead of me before I finally give up for good, I have to say my hope is pretty much nil after everything I’ve been through, and many of us have to face the reality that we will never be parents.
And I apologize….maybe I should be taking the “if you don’t have anything nice to say…” approach here, but I guess while I do truly wish you the best, these last couple posts just didn’t do anything for me except maybe make me a little depressed too, oh well.
Pregnancy and parenting after infertility is still a part of the world of infertility. It may not be a part of your specific experience, just as donor eggs and IVF are not part of mine, but it is a real and relevant part of our community and it is important to talk about it.
Jessica,
I understand where you are coming from. I hope that one day we might be parents but after an IVF treatment that included severe OHSS (hospitalized for over a month), find out we were having twins, losing one twin at 10 weeks, severe nausea and sickness throughout the pregnancy, losing/delivering the second twin at 26 weeks and now dealing with a mass on my adrenal gland, I find it hard to see the light at the end of the tunnel.
I also find it hard to relate to those who have gone through IVF and find success. I don’t know if I’m ever going to get there. Even doing research on adoption is depressing, hearing the story of a friend who spent $300,000 fighting for custody after the birth mother changed her mind or hearing that our first country of choice outside of Canda (Russia) is closing its doors along with many other countries.
I agree that pregnancy and parenting is part of the infertility journey but for many of us still in the battlefield it often seems as though those who have been successful are leaving the rest of us behind and it can be hard to relate. I see it on forums that I’m a part of where members who have had kids forget that they’re still part of the infertility community and there are those of us who are struggling who don’t need to see status updates such as “had a great time with the hubby and our two precious children decorating pumpkins/tree/celebrating holiday of the month” It reminds us of what we have not yet achieved and may never. That is our reality.
Like jjiraffe above me, YES to all of this. The driving reason that I took a huge jump of out my comfort zone and got involved with PAIL was that I believe that it is *critical* to have ALL parts of the ALI journey represented so that folks on this path have a realistic set of expectations about the next step or phase. My feelings about my journey through IF and pregnancy loss got WORSE during my successful pregnancy and worse still afterward. I had such difficulty finding someone who looked like me, but I am pleased to see the conversation is changing in a real and meaningful way.
My only suggestion, though not very concrete, is for ALIers to KEEP TALKING about pregnancy and parenting. Your story still matters. It does. It really does. Someone needs to find you, just like you need(ed) to find them. Build as many bridges to “the other side” and back again as you can.
Yes to all of this. There have been some great discussions on PAIL about around parenting after IF. I’ll add (shamelessly) my own Faces of ALI article about Parenting After Infertility, featuring Kir. http://jjiraffe.wordpress.com/2012/07/31/faces-of-adoptionlossinfertility-the-den-mother/ Kir was one of the first IF bloggers to talk honestly about the struggles of parenting after Infertiliity, which I really appreciated and I was so glad to find her.