Friday, April 24, 2015

You Are Not Alone (But It Sure Can Feel That Way)

There is nothing so lonely as being denied what should be a basic human function. Life is full of images and celebrations of parenthood, and so when that eludes you, it feels so incredibly isolating. It helps, at first, that struggling to conceive is an experience that one in eight couples will endure. You're not alone in the general struggle of infertility. But within your own experience? You can absolutely feel completely isolated.

For me, it was very comforting to join an infertility support group when my first IVF failed. I could bond with a small group of women who were also facing difficulty conceiving, even with the help of medical technology. It was wonderful to feel such a sense of BELONGING, of "we're-all-in-this-together."

Until we weren't.

One of the most insidious things about persistent and pervasive infertility is that you are left feeling isolated, even if you have a community. Because eventually, a large number of your friends in your support network become successful, and move on to experience pregnancy after infertility. This can also be an isolating experience. I will never forget the warning I received from other Yoga For Fertility group members who went on to Prenatal Yoga: "It's different out there... you think that Prenatal Yoga will be full of people from Infertility Yoga, but it's not. You end up alone in a sea of women who did not struggle to conceive, and it can be lonely as a pregnant infertile person."

I had to take their word for it. I never got to graduate to Prenatal Yoga. I ended up a constant on the couch in pre- Infertility Yoga support, waving hello and goodbye to all of the people who got pregnant and moved on, wave after wave after wave.

This continued for years, until I realized that I was in a room of infertile people, people who were supposed to be traveling the same path as me, making me feel supported and part of a sisterhood, and instead I felt completely and utterly alone.

So I went to the blogosphere, where I could find other bloggers who were in similar circumstances as me. I could share my sad, fruitless story without leaving my butt imprint on a couch to prove my stationary status; I could feel less alone because there were others like me--people who struggled and fought and hoped but never seemed to catch a break. People who had been trying for years and weren't yet successful, people who were also trying donor egg and/or donor sperm, people who were continuing on and on and on in hopes of a miracle. I had a new sense of belonging.

Until the cycle happened again, but virtually this time. One by one my bloggy friends became successful -- ultrasound and bump pictures filling my blogroll as my story continued on, one of a shrinking cohort without a happy ending.

There's a Buddhist quote that I love: "No one saves us but ourselves...We ourselves must walk the path." I think it really captures the idea that you can have similar situations with other people, but we all walk our own path and only our own strength can ultimately save us. A common experience only goes so far.

I realized that one reason why I felt isolated was because I was comparing my experience to everyone else's. And my path was singular, as all infertility journeys are in the end. If I was looking to find an infertility clone, someone who was suffering exactly as I was suffering, I was going to be disappointed. Because no two people ever walk the same exact path, even if there are a lot of similarities.

Instead, I found camaraderie in the GENERAL experience of infertility. In those little moments that remain the same. In the feeling that another pregnancy announcement may drive you over the edge into despair, thinking  that that will never be for you. In feeling suckerpunched by infertility subplots in movies or TV shows or books that you sought for escape, not for real-life connections to your own personal tragedy. In feeling isolated in family events where you are alone in not making your parents into grandparents. In avoiding situations that may make you feel hopeless or too sad to truly celebrate with others, and worrying that you are isolating yourself from friends and family in the process. In attempting that delicate balance of participating in life and protecting your fragile, broken heart. In being completely and utterly misunderstood in the process of walking that ephemeral filament of a line.

I stopped needing to friend and follow and read and support only people who were in my exact place in the coping-with-infertility process -- because that place never stayed the same, for everyone else at least. I decided to follow people who had made peace with or had chosen living child-free, people who were just starting out with timed intercourse or IUI, people who were parenting after IVF, people who were completing their first IVF, people who were pregnant after IUI, or IVF, or a chance moment of stars aligning despite odds tremendously against an assistance-free conception, people who were adopting or had adopted. And it was freeing.

Also freeing was finally making the decision to adopt, and to no longer live in the limbo that was waiting for a medical professional to tell us to stop treatment: a situation in which I found I was not alone. With great technological advances comes great hope, and with great hope comes a reluctance to be the one to pull the plug, so to speak. I have never felt so alone as when I was in the middle of making this very difficult decision with my husband to end the quest for pregnancy and begin a quest for parenthood that would have nothing to do with my body. That in-between time was hard, as I felt not quite a gung-ho infertility patient and also not quite ready to fully embrace adoption, and I wasn't sure where I belonged. I felt let down by the fact that IVF did not work for me, and I felt a little pressure from all the support group people who became pregnant on that LAST TRY, but having done 13 IVF cycles (three of which were canceled in the last year), I just wasn't willing to make any more LAST TRIES in hopes that the miracle could happen to me. When we finally decided that IVF was not going to be our path to a baby, and we decided that we were going to pursue adoption and that this was absolutely the best and most hopeful way for us to expand our family, I once again felt connected to others and not alone in my indecision, in our weighing of options and making of choices that had been our lot since being diagnosed with infertility five and a half years ago.

And so now I find solace in a community of women online, who have adopted, are adopting, are not sure if IVF or adoption will bring them their baby, who have been successful with IVF, who are suffering losses, who were successful with IUI, who are just starting out, who determined that living child-free was the best option for them (whether or not that was truly a choice). I find community in the struggles of finding a good OB/GYN, in maintaining normalcy in your marriage when unable to have a baby the way others do, in keeping friendships when life moves on everywhere but in your slice of the world, in managing the insane amount of paperwork that accompanies adopting a baby, in how the infertility journey has affected who you are as a person for better or worse.

Our paths through infertility are all different, but at the same time...similar. It can seem like you are bumping around in a sea of bubbles -- everyone together in your state of soapy floatiness, but each encased in your own particular bubble, all alone. But it helps to realize we're all in bubbles. We may not have the same size bubble, or be going in quite the same direction, but the fact is... we're all encased in a sphere of soap. So it is possible to have a common thread with others, but still feel alone. It's a hard journey to travel, no matter how you come to it, travel on it, and come through it.

And so, you are not truly alone, even if in the bubble of your own experience it feels that way. But only you can walk your path. It just helps to realize that there are others floating about near you, if not exactly with you.

To find out more about the disease of infertility and how RESOLVE can help, visit these links:

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  1. Hi Jess, it's Gil from The Hardest Quest ( You had asked about donating to my 5K run? I don't see an e-mail address to contact you, but if you wish, contact me at Jiliana2 AT gmail (Dot) com. I can fill you in on how to sponsor us if you would still like to do that! :) Hope to hear from you.
    As for this post, you are completely right. The "reality" of the infertile changes from day to day, as we watch others 'graduate' so to speak and move onward. It's a similarly scary place to be though; having gotten very lucky, I can say that from experience. But while I know that other infertiles see me as having 'graduated' I know that I am still completely infertile. My husband and I can not have another, short of forking out another 15K for another try at IVF, and now, at my age (45 next month) no clinic would take me on as my age will necessitate donor eggs or I will mess up their ever-so-stellar statistics (with tongue firmly in cheek). I hear you. And no, you are not alone. Even though your reality is dynamic, there are many paths to parenthood as you are finding out. I will keep fingers crossed that your path is terribly successful. Sending hugs.

    1. Thank you so much for your thoughts! I sent you the message, I hope it went through.
      So true that reality changes every day, for everyone involved. I'm sure being "graduated" came with its own fears and loneliness, too. Thank you for your good wishes on our future success!

  2. I love love love this. I love that you talk about how freeing it was to accept you might not find someone who shares your exact experience, but that you could take the similarities in so many of our journeys, and focus on those, rather than on the differences. Such an important message.

    1. Thank you! That was an interesting lesson to learn. It definitely made me feel like less of a dinosaur in the room, and a horror story, and more like someone who could connect with others and give and get support on similarities. HUGE for feeling less lonely. Thanks for your thoughts!

  3. So much truth to your words. I've always admired your way of articulating the feelings that infertiles feel....while still sharing how your individual feelings impact your story.

    1. Thank you! This was bouncing around for a while and I was worried it could come across wrong. I'm glad it didn't! :)

  4. Great post! I have been there kind left as the last woman standing without a child from my original support group. I have kept in touch with a few of the ladies. But, it is not the same and life shifts and changes.

    I came to a place where I wanted to seek out others on the same path as me and it was so hard. I felt like an outlier of the outliers. Then, I started looking into blogs of those who are childless or childfree. I was looking for a source of hope to show me that if I were not to have a child, that I was going to be okay. I was looking for an example of how to live my life now and not drive myself crazy in longing for a child. Then I started reading more of a variety of blogs along the IF continuum. I have become more drawn by individual stories or how they write instead of where they are in their journey. I have started to enjoy blogging again more in a different way.

    Great bubble analogy! Thanks for your thoughtful post!!

  5. I agree with others... this is a beautiful and well articulated post. I admire you and your thoughts and your grace and your honesty:)