Monday, November 28, 2011

Lament of the end-stage infertile

The holidays are a tough time of year for Will and me. November is the anniversary month of two of our pregnancy losses - our first miscarriage and our sixth. It is a time of taking stock of the last year, and of time passing in general: of where we are versus where we wish we were, where we had hoped to be.

The holidays are a time when we are surrounded by family and friends, which is wonderful. We are lucky to have the friends we do and are grateful to have our families. But it is also true - and exquisitely painful at this point - that nearly all of our family and friends, literally almost all of them, have children or are expecting (even the infertile ones).

Two of my close friends are currently pregnant after struggling with infertility. One of them reached her due date yesterday. She and her husband underwent a solid year of IUIs before becoming pregnant. She lives out of town and has been very compassionate in her dealings with me. (For example, although we are close, she did not invite me to her baby shower. And I was grateful for this.) I spoke to her over the weekend and almost had the sense she would not have talked about her pregnancy at all if I hadn't asked. And when I did (of course I did!), she told me how she was feeling physically and how excited and scared she and her husband are. And then she went back to talking about her new hospital position and parents and sisters and her apartment. Throughout our conversation, this friend very kindly did not gush about her pregnancy. She did not tell me how everything up until this point in her life pales in comparison to preparing to welcome her firstborn, that having a baby infuses her whole life with meaning. Which I greatly appreciated, which I imagined was tough not to do, and which allowed me to gush for her and on her behalf.

My other dear friend is just at the beginning of her second trimester. She also underwent several IUIs and had two early pregnancy losses. And then she did a single IVF and got pregnant. And unlike us, she has stayed pregnant.  She is just at the point of buying new clothes because her old ones don't fit. She is elated; she is still terrified after having had two losses; she is right where I would expect her to be. And this friend, God bless her, very much wants to convey to me how - although she's pregnant and seems to be staying pregnant prior to having a baby - she is Just Like Me. 

Only problem is, every time she tries to join me, I feel ever more alone. I love this friend, but I want to tell her that she is not like me. She is on her way out the other side and will almost certainly have a baby, a baby who is her genetic child, a baby whom she will deliver with her own body. I want to tell her that 33 with no cancer history is not the same as 39 status post chemotherapy. I want to tell her that although she has deeply grieved her two pregnancy losses, she cannot imagine what it feels like to have had six losses. I want to gently say to her that her one experience of IVF doesn't feel anything like going through IVF seven times.

But this isn't quite right. It is actually not at all what I want to tell her. Because in truth it's not about how many losses she's had or how old she is or how many procedures she's undergone. It's something more ineffable. 
It's the fact that she did one IVF and actually thought it would work - and it did. She has struggled and suffered and grieved but she has not had to so keenly feel the sharp pain of hope fading at each IVF failure, after each successive loss. But in spite of this, and for reasons that are unclear to me, she desperately needs to assure me that our experiences are the same.

What she doesn't - and cannot - know, thankfully, is the gut wrenching place of hopelessness, the place where the doctors at the best clinics look you in the eye and say they don't know how to advise you, that the prognosis is grim, despite looking so promising on paper.  The feeling that there is no way out to the other side, no matter how much of your savings you use up or what clinic you go to or what diet or acupuncture regimen you try. That chromosomally normal embryos won't work, that even a perfect-seeming 23-year-old egg donor won't help, because there is always still something wrong, some amorphous and unnameable thing that will trip things up and make your dream of parenting unattainable. 

This is the place where Will and I often live now. When we face it squarely, our pain is so intense as to be immobilizing, almost like staring into the sun. The feeling is blinding, and it doesn't help us navigate a way out of the situation we find ourselves in. We gaze straight into our deepest fears that maybe we will never be parents. Maybe there is no "out the other side," even though bearing children is my biggest hope and desire since I was a young girl.  We have times of hope, of thinking we can still succeed somehow, and we are strong-willed enough to keep trying to move toward a solution (such as having my sister donate eggs) even if that solution seems improbable and filled with peril. 

I want to make it clear that I wouldn't expect my friend - or most anyone, actually - to understand our situation fully.  It is an incredible gift when someone "gets it," and many of you readers are among those whom we have felt truly understand (thank you, truly thank you, for that). It's this friend's continual attempt to empathize by comparing the two of us that is so painful. 

It is an unfortunate truth that as Will and my infertility has gone on and on, we have become more withdrawn from others and felt more alone. It is increasingly difficult to go to the many child-focused activities we are invited to. And it is hard to be honest, even if others do want to know how we feel, because we know our sadness is tough for them to witness. 

My sister is still waiting (seems like forever) for her period after going off of birth control pills. Will is looking at agency donors again as a back up (I just can't bring myself to). We've perused the CCRM database but have not found a good match for us there. We are still corresponding with a potential gestational carrier. 

So things are nowhere near the end, but gosh it sometimes feels like it. It feels impossible to imagine coming successfully out the other side, impossible to imagine getting past this painful place in our lives.  

They've barely begun, but already we are looking forward to the holidays being over. And we are wishing with everything we've got - even as we fail to be able to imagine it - that this time next year finds us in a much different place.


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  1. oh Mo. I get this. I so get this.

    I'm feeling myself drift away from so many circles I have found (and clung to) here and elsewhere. Not because I want to, not because others haven't experienced loss or grief or trying and trying again...but there seem to be so few who are still where we are right now:

    feeling "that is impossible to imagine getting out the other side, impossible to imagine getting out of this."


    Like you and Will, trying to stay hopeful. We aren't at the end yet but....But. The dream of having a genetically linked baby that I carry in my own body. That dream is over. On to the next one.

    And the worst realization is that even with the best clinics, even with the generosity of ones we love - there is nothing we can do to control the outcome either way.

    Here with you sister. Still here.

  2. Oh, Mo, I hear you.

    My experience is not your experience, but I do understand how alienating longterm infertility can be.

    I so hope that next year brings you to a better, different place, too. Thinking of you.

  3. Yeah. And I'm sorry. And damn, how I wish things were different for you right now, right here. You're right, it's NOT the end right now, but the frustration from all these set-backs has to be overwhelming. And holidays suck even at the best of times, sometimes. And you've had quite a year on top of quite a few previous years. Thinking of you. Wishing it were better and easier.

  4. I love this post because it is so relatable. Although I am on a much different path then you guys my heart goes out to you. I hope that you will be able to find a way to enjoy the holidays a little through all the pain. Wishing there was something I could say to help but I will be thinking about you.

  5. I think of you and Will often and hope right along with you that next year's holidays will be very different!

  6. I get this too..and it sucks that anyone has to be going through this. Thinking about you and Will and hoping for the best.

  7. So many things you've said have hit way too close to home. The holidays are hard. Friends with kids are hard. Pregnant friends are hard. Life is hard. Some day this has to get better for all of us, right? Hang in there Mo.

  8. You are absolutely right. Although I have had a loss, I can't ever put myself in your shoes. I can however offer wine and hugs. :) I am so sorry for everything you have gone through. And...fuck the holidays. Cheers!

  9. End stage IF is the perfect way to say it. A IF friend once told me its like stage IV infertility. It is a lonely place.
    I related to everything you said here. I understand feeling understood and yet not all at the same time. It is a hard place to live.
    The holidays are hard b/c I think we are 'supposed' to be happy. For me, it also marks another anniversary marker- another new year and still not closer.
    I just want you to know that I am here, if you are lonely, I would love to meet up for coffee, I feel lonely so often too.

  10. End stage IVF is a perfect way to describe the state you've found yourself in. I can't even imagine 6 losses after just 2. I have been in your shoes when the top clinics shrug and say that they have no explanation and that I would probably never have children. I was just lucky that they aren't always right. I am sure you will be in a different place by next year. I wish you well and a happy 2012 that brings you peace and an addition to your family no matter which way it has to happen.

  11. Mo...there are no words...just wish your dreams comd true.

  12. Your post touched me and I wish you could fast foward through the holidays. I am hoping so much that 2012 brings you a much happier ending than 2011.

  13. I certainly haven't traveled the road you have, having never seen a positive pregnancy test except for the one day before the beta of 9 on our sixth IVF, so I don't know that part of the hope/loss cycle. I do know the loss of hope. The giving up of the genetic child, the idea of ever feeling a baby move inside of me, of placing my husband's hand on my belly and saying "do you feel that?" I know that feeling of waking up in the middle of the night to find your pillow soaked with tears because you are crying while sleeping. I remember this time last year, knowing that the Ethiopian adoption program was slowing down faster than we could wrap our brains around and telling everyone that our quest for a family was likely over, that we had even pursued the adoption road everyone assured us would be so easy and it was turning out to be nearly impossible. And then it DID change. And my hope for you and Will is that things are just about to change for you two, and your answer will be found, and you will be able to move past the isolation and sadness. Because I remember it, and it was awful, and I hate to see you still in it. And even though the answer we found isn't an answer that is for you, I will tell you that my experience is that the loss of genetics, the loss of carrying a baby, the loss of all those things I thought I needed to feel complete...they have faded so far into the background...and I hope that is how it will be for you, too.

    Wishing you some peace in the coming weeks.

  14. This point of IF is so lonely and scary. Have I had 6 losses or 7 failed IVF's? Cancer? No, but I have over 4 years of IF with failed IUI and multiple IVF's as well and one mc. It all sucks. Looking at more and more doctors and them looking at you saying 'not sure why but you have less than 1% chance of having what you want....a biological child'. That is a terrible place to be. Uncertainty. No closure. No answers. I hope that one day {soon} our dreams of having a biological child, through pregnancy ourselves comes true. I hope that we too get to experience that joy it seems everyone else gets to.
    thinking about you...

  15. You know, I feel this way about the people we met in our pregnancy loss support group. The people who I thought got it- the people who then went on to get effortlessly pregnant (and by effortlessly, in some cases I mean after 5 IVF cycles) with their subsequent living children by the time the group was over. The people who are now, for the most part, parents to two living children- children who are genetically theirs and their partners'. I wouldn't have wished any of it on any one of them, and I know they continue to mourn for the children they lost. But it is not the same- it just isn't.

    I am so sorry that this is such a lonely place.

  16. You know, I don't get it, where "it" is "where Mo and Will are." But I know I don't get it; I know what I went through is nothing like what you've traveled. All our journeys are unique, of course, and there's no pain Olympics. Still, I'm 99.9% sure I'd have given up long before where you find yourselves; I just don't think I'd have had it in me to keep trying. I'm awed that you two do, even as I understand (at least academically) that there is no clear path drawing you on.

    Now "on the other side," I do remember the desperate feelings of not thinking I'd ever get here. You're in a still more difficult place than I ever was in terms of odds and so forth, but I do, at least, grasp that feeling. I hope you too come past it by achieving the family you dream for.

  17. I really hate the whole "there is no Pain Olympics" thing. I hate when people in their early/ mid 30s who gVe been trying only a couple years w/ 1 or 2 failed. IVFs think their pain is comparable to that of yours or someone in their early 40s who is literally running out of time after years of failures and loases. Some people DO have it worse. I can only imagine how hard it must be with your close friend doing that.

  18. I won't say that I understand. I don't, and I know that. But I feel for you. I've been reading your blog for years, and wishing for a happy outcome for you for as long as I've been reading. Just wanted to write and say that you're still in my thoughts.

  19. Maybe your friend is trying to identify with you which is then invalidating the ridiculously, hard journey that you have had, it is tough to feel invalidated, makes you think that there are very few who understand.. IF is such an isolating disease, I honestly can't imagine the heartache that you have been through and I truly Am hoping for the quick life turnaround it 2012.

    All the best.

  20. Mo, your use of the word "end stage" tells it all. What I think people who don't get to the 'end stage' infertility don't understand is what it is like to both endure the losses AND the end of one's genetic self. Yes we live on in the love we can give a child, or our success in our career which builds a legacy that way, but it is not the same. When you come to point where you realize that the ineffable 'living on' that happens when you pass yourself on genetically is NOT going to happen, it is a death. Not like a death, a death. And it has a profound impact. It is a trauma. It changes you forever. It changes you in a way that having REALLY shitty IVF's and losses, and then finally getting your mutually genetic child doesn't. For you, a cancer survivor, this is a second look into the abyss. You didn't get pulled in the first time, you fought and survived, but this abyss is pulling hard, and it is excruciating.
    I think one of the hardest things for me when people would try to empathize was that I felt invisible. When I didn't say anything, it made it worse. I wonder how you could say to the second friend "Yes, we've been down the same road, but you exited at 'pregnant via IVF', and I'm still on the road, and I really don't know where it's going, and at this point, it is like being in a nightmare that doesn't end. When you compare us, in your loving attempt to reach out to me and make me not feel so alone, it misses that we are not the same, and I feel invisible." Clearly, if you wanted to say something, you'd have better words than those, but my main feeling is that when we who are end stage infertiles don't say something, we participate in our own invisibility.

  21. I have a friend who has never had the opportunity to try to have a baby. She is 38 and divorced. She has no prospects of a partner. I, who have had losses and failed IVFs, can never understand her pain even though I have pain of my own. I know that while I can identify with many of the feelings she has about watching others with their families and new babies arriving left and right I can't identify with all of what she feels. All I can do is put my heart out to her and stand with her through the pain. Nothing is worse for those of us who are missing some part of their family whether it be through infertility, divorce, or death than watching other families at the holidays. May you fill your longing heart with the love of those who stand with you this holiday season.

  22. I can't even imagine being in your shoes even though the chances of me having a bio kid are slim to none. When IFers get to the otherside we tend to pretend we are not infertile anymore, cling to our infertilty, or embrace both.

    Wishing you and Will the best through this tough season.

  23. I want to so desperately pull you through to the other side. I completely feel your torture and pain and I hate that you have to go through this. No one deserves this road. It's that pain somewhere between your throat and your stomach and you just want to pull it out like a rope and for it to be gone. My biggest prayer for everyone who deals with IF is to give them that sense of innocence again before all the pain.

  24. I don't know your pain, but I am so sorry you're enduring it.

  25. Oprah has a saying, "All pain is the same" and while I've taken issue with that over the years, what I have come to understand is that how humans experience painful emotional situations is often the same, which is to say, the feeling of pain is similar. However, that takes nothing away from the catalyst for the pain being far and away different most of the time. I totally get how it would alienate your from someone who was trying so hard to make you feel that "she gets it" when she most clearly does not. Just the need to justify it illuminates the base problem. And, while I do think most people mean well (even if there intentions are often misguided) as some point we have to hear and see how what we are trying to say is affecting the other person and back the fuck off.

    And, I get being guarded. We did have success with IVF #2 and I do have a living child. I have been pregnant 7 times and all attempts (and I mean every) to have a sibling have failed and I feel no closer to completing our family than I did 4 years ago when we started trying to. And, as I consider what last ditch efforts I might try (again), I find myself telling no one. Because, really, why?

    It is my wish for you and Will that things do look markedly and positively different by this time next year.

  26. You are right, there is something HUGELY different from doing 1 or 2 or 4 IVFs and having success (carrying yourself) and having to move onto 3rd parties. It's a loss, a unique loss, wether you move onto donor egg or in my case surrogacy, there is a sense of mourning and desperation, that just can't compare.

    When we finally got to the other side, after 2 different surrogates, the drama the bullshit, we felt/feel like we went through a war, it's something we both feel, and that no one can understand until they walk that path.

    I'm always reading, I'm always cheering you on, I so hope this works out with your sister.
    Much love from the north,

  27. I wish the same for you Mo. I wish for next year, I wish for a different place for you both...I wish it all very very much.

    It is a hard time of year, and your journey just makes it harder. All I can offer is my wishes and hugs.

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  29. Mo,
    I. Get. This.

    Nearbthe beginning of our IF journey (the IUI stage), my bff tried to tell me that she understood what I was feeling and going through because she too wasnt ovulating and therefore had an IF problem. Little did I know that she was pg (and knew it) at the same time she was sympathizing with me. I took me years to get over it.

    I also know how totally isolating m/c, IVF failure, DE, and DE/GC can be. Younare not alone. We are here supporting you.

  30. I realize that I'm in a different place right now, but my heart goes out to you because I can totally relate to how you feel. (Although you always express it much more eloquently than I do.)

    I'm glad your one friend has been so considerate, and sorry that the other one hasn't. You're absolutely correct that someone who has only been through IVF once or twice and come out successful can't understand what those of us experience who have had more losses than we can count on one hand.

    My carpool buddy was one of those "did one IVF and actually thought it would work - and it did" people. When she broke the news to me about her pregnancy, she also kept trying to tell me how she was "sure" the next cycle was going to work for me. I know she meant to be encouraging, but it literally just made me cry harder. It made me remember being in that "of course this will work - it's IVF, how could it not?" stage, and it felt so, so far away and so long ago. Because it was...

    Big hugs to you and Will, and may you find some quiet moments of peace during this holiday season.

  31. I'm so sorry your friend is being insensitive. I think people have to be so careful about saying "I know how you feel" when the situations are not the same. Thank you for continuing to share and I'm hoping that 2012 will be a better year for you and Will. My thoughts are with you. Heather

  32. I haven't read all the comments so I'm not sure if someone else has already said this, but here goes anyway...

    It seems there are just so many different ways to grieve through this whole thing, and there can be such a mismatch between what we think we get about each other and what we really do! For example - I have had the 'oh, right, so I never get to have a child who is genetically related to me' feeling (and that really stinks) and I've had the 'oh, right, so I never get to be pregnant' feeling (and that really stinks too) so in some ways, I kind of feel like I 'get' what this must be like for you. BUT - I've never had the 'seriously, ANOTHER ivf didn't work?' feeling or the 'i cannot possibly handle another miscarriage' feeling so really, I don't.

    There are so many ways this whole experience can suck, whatever our own specific experience is. I think it's tough when people try to 'relate' to our experiences when they haven't been through whatever it was that we found the hardest. My sister in law is at the Clomid stage of secondary IF, and I'm sympathetic (mostly!) but sometimes I want to smack her upside of the head because seriously.... she has no idea what it's like to be where I am. And yet - what she is going through is pretty tough too. And she probably thinks that *I* have no idea because I may never have been pregnant, but at least I have two kids.

    Anyway. I think what I'm trying to say is - I'm sorry this time of year is so hard. I'm sorry that you have got so many layers to your own difficult story. I hope that by this time next year the story is at a new chapter. One with no Lupron in it!

  33. I get it. Even though we "won the IF lottery," I understand where you are coming from. There IS a difference between you and your friend. I'm kinda surprised she doesn't get it...

    Hugs to you.

  34. Thank you for writing this post. It's so honest and REAL. I feel like I can definitely relate to feeling of it seeming impossible to imagine coming successfully out on the other side. As time passes, that thought seems to drift further and further away.

  35. I love your honesty in this post. Because although I am now "on the other side", I well remember the hopelessness and isolation that comes after multiple IVF failures (I mean really... IVF works for everyone the first time, right????).

    And I remember feeling my experiences and struggles were being dismissed by some who (I perceived to have) had a much shorter and more successful IF journey when they equated their experiences to mine. Actually, you are much nicer than I was. It totally pissed me off:).

    I can only stand next to you, as one who has been in the trenches. Rooting for you.
    And hope, as you both do, that next year at this time will find you in a very different place:)

  36. Oh Mo, this post rings so true to me, in so many ways. If it were me, I would distance myself from this friend. That is not advice, just my way of conveying my understanding. No one is equipped to handle everything well - you may have just found this perfectly lovely person's blind spot.

    I find the pain of being the 'last one standing' comes in waves now, rather than being constant as it once was. As my identity suggests, I find winter hardest. Holidays are hard for us too.

    Be kind to yourself. I hope you and Will find your joy soon.


    Winter Blue

  37. Mo - This is so beautifully written, and literally every word resonates with me. My first loss was at Thanksgiving, and since then when it rolls around I think - it can't be ANOTHER Thanksgivin, ANOTHER xmas without a child... I have so few friends left, and almost none without children... and I keep having to find new women to relate to as so many of my first IF friends are all pregnant or with child... and I feel so isolated.
    I wanted to mention that I found my donor through using a "donor concierge" Her name is Gail and it helped SO much to not have to go through all the sites... My second FET - with a NORMAL DE just failed, I thought surely THIS would be the holiday season to truly enjoy... but no - back to grieving, back to nursing those last shreds of hope.
    All the best to you - I have been reading your blog for 2 years now, and its helped. You inspired me to go to CCRM! (even tho Schoolie's magic didn't work for me; I'm back to a local RE for DE.)


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