“Who can describe the feel of a tiny hand that is never held?‚Äù
– Laura Bush, Spoken from the Heart
For the last two and a half years my husband, Nick and I have grieved for something we never had. Not just to fall pregnant and have a baby, but we have grieved for our children. We have mourned the noisy and chaotic family we had always dreamed of and spent years postponing as we created a life for them when they came. Of course it didn‚Äôt begin that way, but over time, as month after month dragged past with many negative pregnancy tests and tearful mornings the feeling of loss began to set in. A loss we couldn‚Äôt identify or put into words.
Slowly we were driven into a space of isolation and loneliness as the reality of our ‚Äúfailure‚Äù began to over take us. Our infertility is due to both of us. The reasons for why we have the physical issues we have are still not explained and most likely never will be. We are both healthy with no genetic histories of infertility. Our blood and hormones all fall into text book normal. When we started trying to conceive I was in my early thirties, well before the looming thirty-five year deadline for female reproductive issues. However, I have mild endometriosis and potential egg quality issues and Nick has a low sperm count. It felt like a cruel and unfair blow as we watched friends and family fall pregnant as we struggled.
The stigma of infertility hung over me like a shameful blanket. I couldn‚Äôt talk to anyone and I swore Nick to secrecy at the same time. Something I know now to be unfair, but at the time I thought I was protecting us from a cruel and judgemental world. Slowly but surely we began to suffocate with our secret. Family occasions and gatherings with friends became a slow form of torture for me. I began to dread talking to people, both those I love and those that I hardly know as the inevitable questions would come at me like a punch in the stomach: ‚ÄúWhen are you two going to start a family?‚Äù ‚ÄúAre you planning on having kids?‚Äù. The silent despair would cling to me like a stain I couldn‚Äôt shake, as I would try and divert the question with a quiet, ‚ÄúWe‚Äôll see.‚Äù
I didn‚Äôt feel like I could talk to anyone. In those first few days of finding out that this wasn‚Äôt just a case of taking some time, that in fact we were given a less than one percent chance of a natural conception, I had opened up to a few people. Their attempts at trying to help through stories of others going through the same thing only made me retreat. Standard statements like, ‚Äújust relax,‚Äù ‚Äúget drunk and have more sex,‚Äù would drive me to tears. These are not appropriate things to say to someone experiencing infertility. They hurt and demean the efforts of people who have been forced to learn every intricacy of the human reproductive system and believe me they have tried to relax and get drunk. It didn‚Äôt work. But how can someone who has not lived this understand that?
Many people would immediately jump to other options like surrogacy or adoption. Surrogacy would not solve any of the issues Nick and I have and adoption, while a beautiful way to start a family, is an incredibly personal journey. Nick and I have always been open to adoption, but had planned on genetic children as well. This suggestion brings with it layers of guilt. Yes, there are many children in need of homes. Yes they are deserving of that. The adoption process in itself is long and expensive and brings possible heartache too as it‚Äôs not a guarantee by any means that you will achieve a family. It also bypasses a person‚Äôs very real and deep grief over potentially not having genetic children. Something they may have accepted as fact for their lives from a very young age and also may not be ready to give up on at the point in their journey they are in.
People would go so far as to tell me that the world is over-populated anyway. This is a crushing fact that I am already well aware of, but I would be hurt that this condemnation was not brought down on other people who fell pregnant with ease. I would question whether I had any right to even want my own children. Stories of babies being born to teenagers and drug addicts left me completely disillusioned with the universe and what could be deemed as fair and right. So, I took my guilt and shame and sadness and hid in the dark with it.
As the months went on there were days that I could not bring myself to get out of bed. I have never experienced true depression, but during this phase I was in the darkest and loneliest space of my life. At the same time, my husband and best friend was going through his own pain and grief. As much as we were there for each other, and our love never faltered – we couldn‚Äôt be totally honest with one another because deep down we were trying to protect each other from our own personal hurts and guilt. Finally in a state of pure desperation, I turned to the Internet.
Almost by accident I stumbled upon the infertility community on Instagram. Before the verdict of infertility I had casually chatted on some ‚ÄúTrying to conceive‚Äù forums. This is a community where (mainly) women come together to talk about very personal parts of their lives in trying to conceive a child. When they get their period, how to track ovulation and when to have sex are discussed. Symptoms, issues and personal information about marriages are shared in a safe and anonymous community. I had participated in these forums and month after month online friends had fallen pregnant while I was left behind, both in my online life and my real life. Eventually a woman on the forums told our group about the infertility community on Instagram. I was desperate for some kind of human connection for what I was going through so I opened a new email address and started an anonymous account.
I posted for the first time on the day of my embryo transfer in my first round of ICSI IVF. It was a picture of my two embryos that were by then inside my uterus. We had decided to keep our IVF a secret to everyone but our parents but I was too sensitive and raw to talk to even them. Everything had gone well at the beginning of treatment. I had responded well to medication and got a good number of eggs. Eighty percent of those fertilized and were doing well on day 3. Then they started to die. I found this out on the day of transfer. I only had one normal embryo and one slightly behind to transfer out of ten originally fertilized eggs.
My transfer was difficult. The doctor was delayed by over two hours and Nick had to leave, so I was completely alone. My doctor then struggled to get the tube into my cervix, as apparently mine is a little narrow – and though it‚Äôs apparently normally not painful, it was for me. I left in tears. As much as the doctor and nurses had tried to encourage me I knew things had not gone well. Home alone, crying and feeling as sad as I ever had, I went onto my phone and made that first terrifying post. In a few minutes someone liked my picture and commented below with support. It was the woman who had told me about the community; someone who lives in New York who I have never met in person, but we know more intimate details about each other than most people ever will. Maybe even more than our own husbands do. She congratulated me on being PUPO (Pregnant Until Proven Otherwise.) In that moment I finally had a connection with someone who completely understood this terrifying, exciting, sad and happy situation I was in that I couldn‚Äôt explain in words. It was a completely cathartic experience that began to elevate my infertility into a more spiritual journey.
In the days that followed I would gingerly post about what I was experiencing. I had kept these secrets and these feelings buried for so long it felt scary and unnatural to be sharing them, especially on the Internet. At the same time it began to feel so incredibly liberating.
Infertility leaves you in a state of limbo a lot of the time. You are living in a space where all the odds are against you, but at the same time you cannot help but cling to every ray of hope that comes your way. It‚Äôs a mental and emotional rabbit hole. My mind would bounce between a deep seated feeling that something wasn‚Äôt right to a space that if this works it would be a miracle and just maybe I would be that person who got that miracle. Unfortunately that was not the case for me. Although I did get pregnant on that IVF I began to lose the pregnancy very early on. It is termed a bio-chemical pregnancy. The embryo implants but for some reason stops growing and essentially miscarries. This was something I struggled to process at the time. I didn‚Äôt feel like I had ever been pregnant but at the same time, physically I could feel myself losing the pregnancy as I bled for eight long days.
It was after this that I really turned to Instagram for support. Protected by our anonymity I began to make real connections with the women in the community. I began to receive personal messages of encouragement as we chatted in a personal space, on a first name basis. When I was sent in for a laparoscopy I asked for any advice on this procedure. The support that came to me was invaluable. Women gave me tips on how they had dealt with the notorious shoulder pain from the procedure and warned me to take it easy even though I might feel well and even gave me ideas for TV shows to watch while I was recovering. This safe space became a place where I could talk about my private obsessions freely and without any judgement. People reach out to each other in gift exchanges, offer messages of love on retrieval and transfer days and many genuine friendships that extend beyond the online space are formed.
In this space everyone gives complete honesty as to what infertility is, punctuated by the hashtag #thisiswhatinfertilitylookslike. Here we can really talk about what it does to your body, your sex life and your relationships. It hurts when best friends or even sisters fall pregnant. Baby showers are painful experiences and Facebook can feel like a war zone some days when twelve week announcements are raining down. It‚Äôs not something anyone is proud of, in fact most will admit feeling very guilty to this emotion, but it‚Äôs the truth and it‚Äôs normal to feel this way. We fight to be happy for those people because we love them very much, but we also need a place to cry about how, once again, it isn‚Äôt us giving the happy news and maybe it never will be. Giving support to other people in my situation makes me feel good and useful and it also helps me deal with my own tough emotions.
One in eight couples experience difficulties with fertility. A staggering statistic when you consider that this is a still a topic shrouded in stigma and secrecy. The true power of the Internet really began to dawn on me as I made friends with women from around the world who would share their journeys and pain through words and images. I began to not only stop feeling ashamed, but to actually feel empowered. Even though I wish things were different, I have become proud of what I have been able to endure and survive through my infertility. All the tearful nights, the devastating news, the medications, the daily injections, the doctor‚Äôs visits where I have been poked and prodded, not to mention the procedures. These things take courage. I embraced the hashtags #weareoneineight and #infertilitywarriors.
Ultimately this liberation eventually trickled into my everyday life. As I gather courage in the online community I gather courage in all areas of my life. I am able to talk more openly with Nick, which in turn has allowed him to open up to me. We have begun to be more honest with our very close friends and family. I haven‚Äôt quite come to point where I always know what to say. Questions about my future plans with children still catch me off guard sometimes and they hurt. Nick has started to tell the truth, I still hold back tears and mumble something or other sometimes. I would advise against asking people this question and I will never ask anyone ever again.
However, I have come to this point right here. The point where, even though it is so scary to write and share this ‚Äì I want to ‚Äì because it‚Äôs part of me. I want people to understand what this feels like and so in turn I can help others going through what I am going through, just like the Instagram community has helped me. My account will remain private because this is a space that I don‚Äôt want the people in my life to be. Sometimes I need to vent and sometimes I need to talk about my body in a very intimate way. Hopefully one day I will be pregnant and my Instagram community will be the first to know.
Emotional healing from infertility didn‚Äôt ever seem like a possibility to me. I wondered how people ever got through it. When I opened my Instagram account I had no idea that it would be the catalyst to that healing. So I want to say thank you to the power of the Internet ‚Äì sometimes it can be used for good.
Illustrations by Tyla Mason