PROLOGUE: If you didn’t get a chance to read last Thursday’s post you might want to now. If you don’t have much time (it’s long!) start about half way down, right above the indented dictionary definitions. It turns out that this post is kind of a sequel to that post.
A while ago I exchanged a few tweets with Keiko of Hannah Wept, Sarah Laughed. I forget what inspired the conversation but I do remember asking her if she thought her diagnosis of POF, years before she intended to start trying for a family (instead of while she was in the throes of TTC), had significantly shaped her relationship with her infertility.
During our Twitter conversation Keiko and I talked about what it was like to know that you would suffer from infertility before you started to build your family. We both experienced this to some degree and responded very differently. Perhaps that is because of our diagnoses, perhaps because of who we are as people, perhaps because of our circumstances. Probably it was a mixture of all of those and more. There are all manner of reasons why her diagnosis and mine led us on different paths. Today I’m only going to talk about what my experience was like, since I sure as hell can’t do any justice to hers. If your curious what she has to say on the matter, you can check it out on her post today!
The truth is, I was never diagnosed with infertility before I started trying. What happened was, in my late teens I stopped menstruating. I’m not talking long cycles, I’m talking no cycles – years and years of not having my period. Sometimes the OB I was seeing would decide it needed to be “treated” (with three months of birth control pills), other times I was assured it wasn’t a big deal. I was told, however, that if I did want to get pregnant, I would need to see a doctor to begin menstruating again because as it stood, I would not be able to conceive on my own.
Now this is where last week’s post comes in. While I was never told I was infertile, I was told I couldn’t get pregnant without medical help, which is one part of the complicated definition of infertility. For this reason, among others, I assumed I’d struggle significantly to get pregnant and began to consider myself infertile.
The “among other” reason was my mother. My mom’s story, as I’ve mentioned many times on this blog, was a tragic one. She also experienced amenorrhea for most of her teens and twenties and, not surprisingly, struggled to get pregnant. She finally had me after two years of trying. Two years later she had my sister S, who died in the NICU after two months of fighting for her life. My mom and dad were in California looking for a house when it happened. My sister died and our mother was half a content away. And after that? She lost three sons, all still born at six months. My mom was getting her tubes tied, a desperate attempt to avoid more loss, when she found out she was pregnant with my other sister M. We are almost seven years apart.
This all happened first, watching my mother lose babies, me losing siblings. I already knew, before I ever had troubles myself, that pregnancy was wrought with loss and sadness, that it was a miracle but a fragile one. That there were no guarantees.
No guarantees. That was it really. There were never, ever any guarantees. No guarantees that I would ever get pregnant, that I would birth a live child, that a live child would continue living. Guarantees were for the land of the fertile. Guarantees were not for me.
And yet I was not infertile. I had never struggled to get pregnant because I wasn’t trying to get pregnant yet. Still my past and my present led me down a different path than my fellow not-infertiles journeyed. From my path I eyed pregnant women and complete families with suspicion and envy. I responded with understanding and empathy when I heard of a lost pregnancy. I worried every single day that I wouldn’t find someone in time to build my family. I assumed having children would be a long, arduous, harrowing journey and if I didn’t start soon enough, I might never get there.
When I finally met my first boyfriend I was 26 and already panicking that it was too late. Once we were formally “dating” I immediately started in on having kids. I could not dick around with this guy if he didn’t want a family! Turns out he hadn’t planned on having one. Cue the constant conversations, crises and fights. My infertility-assumption shaped our relationship in ways I probably don’t see, even to this day. We were in counseling about having kids after dating for less than three years. It was constantly a part of the conversation – a shadowed that darkened so much of our lives.
When we finally neared our TTC date I started acupuncture. I had read many “overcoming infertility” books and had decided that since Western treatments were reactive (and I wouldn’t be eligible for them at first anyway), I would pursue Eastern treatments in an attempt to be proactive.
Along with the acupuncture I took Chinese herbs and followed a strict traditional Chinese medicine (TCM) diet, excluding grains and limiting dairy. Meanwhile I abstained completely from alcohol. I did all this in hopes of staving off my impending amenorrhea and infertility.
Most women start trying to conceive with nervous excitement. They take their last BCP and wonder what will happen. They have sex, excited for the possible consequences they had once taken such great pains to avoid but now were ready to embrace. I never felt like that. I never had that naive, “this is going to happen” attitude. We never just had sex, hoping for the best. Instead I was temping and charting from my first CD1. We were scheduling baby making sex on a shared Google calendar from the get go. We never had those carefree months. We never had a “well maybe it will happen next time” BFN. Every month was excruciating. Every month BFN made clear what I already knew, that this just wasn’t going to happen for us.
After six months of trying we found out we were pregnant. Despite my mother’s story I was happy, blissfully so. I knew something bad could happen but I was just so relieved to see that second line. For two weeks, life was wonderful.
Then pain, bleeding, 12 hours in the ED, an MVA, an ectopic pregnancy, shots of methotrexate and a warning that I could still lose my tube or possibly die. Not only had I lost my pregnancy but I’d done so in a way I didn’t even realize was possible. My future as an infertile seemed to be the writing on the wall.
What followed was months of healing and waiting and wondering what would be next. When we started again I felt I had lost all hope. It had been so long since we had started trying. I felt despondent. I launched my blog. I joined this community. I immediately felt a sense of acceptance and purpose. I instantly felt like I belonged.
We got pregnant a couple months later. That time it stuck and nine months later we brought home a healthy baby. In the days after her birth I felt a weight lift. I felt I had escaped a horrible fate, a fate I had come to expect. I considered myself incredibly lucky and intensely grateful.
The weight didn’t dissipate completely though. My fears of recurring amenorrhea and pregnancy loss have come creeping back as we start thinking about having another baby. My past, my mother’s past, will haunt me with their awful possibility for as long as I hope to have children. In fact, it will always be a part of who I am, it will always color my gratitude for my family and my good fortune.
My assumption of infertility had other, unforeseen consequences. Now, having had a child, I’m left straddling two worlds. On the one hand I never took up residence in the world of the fertiles; I never lived their naive and innocent life in which people have babies whenever they want to. And yet, I was never diagnosed as infertile. When I physically couldn’t get pregnant I wasn’t trying to and when I wanted to get pregnant I took measures to increase my chances of that happening. I will never know if the TCM and acupuncture did the trick. Or if it was simply the years of BCP. Maybe my body just figured out how to menstruate. In the end though, I was able to conceive a child and I did birth a healthy baby.
So where do I belong? I’m not infertile, though we share similar experiences (spending many thousands of dollars on treatments, making continual sacrifices to have a child, feeling hopeless and alone) and I empathize with this community in the way I think other infertiles do. I’m not fertile because of my history, my struggle and my loss. It’s a strange place to be because I can’t claim membership in either community. I feel like an impostor in both places, but the place where I feel like I’m pretending is with the fertiles. Here, in the IF community, I feel that I belong. But I respect other women and their struggles too much to compare them with my own and so I tred lightly, I flash my loss card and I hope nobody will call me out.
I don’t call myself infertile even though in my heart, it’s a part of who I was, who I am and who I always will be.
Stumbling Gracefully 
I think the common thread of this community is an understanding of what it means to long to be a mother, and have constant roadblocks in your way. I think what separates us from the “fertiles” is that we take nothing for granted. We understand what a true miracle and blessing having a successful pregnancy is. I think that you don’t necessarily have to “suffer” from infertility to understand it, and to be a part of this community. It’s about getting it. and you, my dear, get it.
Thank you Mo. I do think I get it and I suppose one can be a part of this community even if they are not infertile. I never thought about it that way. Did you know there have been times when I’ve felt relief that I’ve had a loss, so that I can be a part of this community? Of course I’d rather not have suffered that ectopic pregnancy but if I hadn’t, I wouldn’t have ever found this place, or had a reason to be a part of it. And that would have been harder in a lot of ways. Here I can find validations for the fears I’ve lived with all my life. Here I feel like I belong.
It’s weird: I had no known history of infertility in my family, but I never thought it was going to be easy for me, either. I always had a suspicion that something was wrong with me. Maybe because my periods were not perfectly regular (although not very irregular, either)? Or just an intuition? Whatever it was, it was accurate. Not until I got the diagnosis after my first IVF of ovarian issues did I know for sure, but there was a sense of “I was right.” I feel like a lot of people who have gone through infertility say this, too.
I do not think you are an imposter, either. You know what it is like, both through your own experience and your mom’s. Mo’s right: It’s about getting it. You get it.
You are not the first person who I know who suffers from IF who had an idea that it might happen. I wish none one had to worry about IF. I so, so wish.
You write as if apologizing for being a hypochondriac, only you’re not. You have a medical history of amenorrhea and you’ve suffered a traumatic loss.
I can imagine you identify with the community, and why not?
I do believe that there is a spectrum in infertility, but trying to figure out who is where exactly on the spectrum is counterproductive. Pain olympics etc.
I understand what you’re saying, but I feel I tread lightly out of respect, respect I’ve seen IF suffers give others and ask for in return (not overly, but subtly in what they say and how they say it). I no know one wants to play the pain Olympics but I feel people do want their struggles validated and walking around saying that I’m infertile, when I haven’t experienced what other infertiles have, is not the respectful response. Maybe I’m making too big a deal of it. Maybe there are my own issues, but I do feel I’ve seen it played out by others in the community. I don’t want to tread on anyone’s toes.
I do not think you are an imposter at all. Being part of a community, whatever that community may be, is about seeking out support and offering it back. You do an amazing job at both.
Thank you. I appreciate that. And I think that is true, up to a point. But I do believe a barrier exists, and that while people might be very happy to give and receive support from someone who has not walked in their shoes, in the end, they are most comfortable with people who have had similar situations. And the reality is, my situation is not very common.
Thank you for sharing so openly and candidly. I have a loved one that I am close to in my life who experienced premature ovarian failrure at 18. So she also never had to “try” to conceive to find out she was infertile… But she also never got to try and believe it was ever possible, like you said.
I agree with so much of what Mo and other commentors said. It is so much about “getting it” and as we often talk about in the ALI Community, it not so much an IF thing, as it is a sensitivity thing. I feel grateful that I have been able to transfer so much of what I have experienced dealing with SIF and loss to being more compassionate and sensitive in general to anyone in my life that is struggling, especially those trying to accept that some aspect of their life as an adult is not going “as planned” or as they hoped and dreamed it would.
I really connected with the last paragraph in Lut C.’s post and when you talked about having understood from an early age that there are no guaruntees in life. That is definitely something that SIF and loss has taught me and I believe for better or worse that my children will grow up appreciating that.
Thanks for another meaty post! Definitely a lot to chew on… Now you have me thinking about all the words I am choosing and using (because of your post from last week)!
POF at 18?! I didn’t even know that was possible. My heart goes out to your friend. I really appreciated what you said about SIF and loss making your more compassionate towards others. I’ve found that as well. I’m much more empathetic towards others and I have a deeper understanding for what it means to desperately want something that cannot be or that is gone. I wouldn’t have that if not for my life and my experiences and while I’d rather have avoided some of the bad, I’m so thankful for the good it has created in my life.
Learning that life has no guarantees was hard and I think I’m still learning that every day of this journey. I distinctly remember when I realized that in the land of TTC/IF/loss working hard did not always mean getting what you wanted. That there were goals that you might not be able to achieve no matter how hard you tried. To learn that I could not affect the outcome of something, that was really hard. (It also shows how privileged I was before I started having troubles TTC). I also hope I can teach these lessons to my daughter and ensure that she appreciates the good she has in her life. Taking something for granted is a terrible tragedy, one I’m guilty of more than I’d like to admit. I hope I can correct that in future.
i feel like we will always fear not being able to attain our greatest desires in this life. i feel such a bond with your mom, and i understand so much now how you identify with this community. you aren’t an impostor. you are loving and caring and you face real issues, both emotionally and physically, related to your fertility.
i feel like im blabbering on, stumbling over my words, if you will. i guess i wanted you to realize how much this post has told me about you. especially the things your words weren’t able to say.
Isa is a very lucky girl.
xoxo
lis
Thank you Lis. My mother’s story, your story, they are so full of loss and grief. I don’t know how either of your survive. But you do and you teach me that if I were faced with unspeakable loss, I could carry on in some way, shape or form too.
Thank you for validating what I’ve been through. I’ve always noted your kind and compassionate words to people who have been through so much less than you have. You truly validate everyone’s experience in ways I’m honored to witness. You are truly a gift to this community.
I had no idea that I was infertile. Especially since the first pregnancy went so well! So I, too, have felt like an impostor. But I think that my most recent post about passing the baton, and offering support, is relevant here … this community has always been one of the most accepting places I’ve know. Infertility has a diaspora. It’s not just one face. Even loss has multiple faces. And perhaps that’s one of the most important things for us to communicate to people on the “outside”!
Thank you for writing this … and for being who you are. 🙂
Infertility is a diaspora. That is an inspired way to think of it. I think you’re right that the most important thing is to communicate to people on the outside, and yet we do that so rarely. I think it’s because the outside doesn’t show us the compassion, support and validation we find here. You need thick skin to stand up against all of that. It’s hard.
“Infertility has a diaspora.”
Friggin’ GENIUS way of putting it.
Thank you so much for this beautiful, brave, painful post. The history with your mother and knowing those losses could have been siblings… reading that was just heartbreaking and literally caught my breath.
I can see how conflicting it might feel to have a foot in both worlds – your story definitely connects you to each world, but you’re not necessarily grounded in either one. Perhaps like you’re floating a bit, between two realms. How ethereal 🙂
This was such a neat exercise to write in tandem yesterday and I’m really glad we did it 🙂
I so relate to the end of your post–to feeling like an impostor. I’ve felt like an impostor, too, sometimes, because I get pregnant really easily, and then I miscarry just as easily. I don’t fit into any of the easy categories that so many infertile women can find connections in. I find myself on the margins of this already marginal community. But, what is so nice about this community is that we support each other, even when our stories are different.
Thanks for sharing your story. It was really interesting to read in tandem with Keiko’s post.