What I wish I knew when I got started.

As the media’s coverage of Technological Advancements and happy outcomes instills assurances that the world of Reproductive Technologies can overcome practically any barriers of conception, the lives of the majority of patients, millions of people who have turned to science for a cure and came away without a result remain unspoken. Globally an estimated 77% of all IVF cycles end unsuccessfully. US-performed cycles tend to have a slightly higher rate with 69% of all cycles performed ending unsuccessfully. There’s approximately 80 million people worldwide struggling with infertility, but only 5 million live births worldwide resulted from IVF since 1978. Patients who came away without a baby form a vast majority. Yet, the information that surrounds us fails to address this fact.

What is it? Stick-to-itiveness to technological achievements?  Unwillingness to entertain dramatic premise? Branding?

As Jennifer Wolf-Perrine, a journalist who focuses on women’s health and  infertility says in a recent article,

It’s infertility, which will strike one in eight American couples. Why are so many of us hiding this struggle from our friends and family? SELF investigates the roots of women’s silence— and why our reluctance to talk keeps us from getting the health care we deserve.

In a private conversation, she pointed out that people love to read the stories of hardship, except in cases of infertility. There’s so much angst and trauma associated with infertility and treatments, that people only want to hear of the successful outcomes.

Granted, when I was undergoing IVF and later surrogacy, the need to have some hope was paramount. I was unwilling to accept my diagnosis, and entering into treatments presented a solid way to sustain this hope. My family tried to ease my worries the best way they knew how- my grandma told me stories of how children burden lives, my mother wondered who is to blame for the situation, my mother-in-law kept up a brave façade as if all was normal, my husband tried to distract me from the worries. It seemed to me that I was the only one aware of the horrid implications of stagnation that loomed over all of our lives.

Given that IVF procedure has been around since 1978, it is surprising that up until now there are no standard guidelines to help the patients navigate through ups and downs of treatment. Some patients are more articulate then others. Some can express their anxiety eloquently and some can’t. In absence of the guidelines the patients are left to wonder if it’s normal to experience infertility as a major life crisis or if its a figment of their imagination. Men in particular suffer from the need to retain a seeming grasp of chaos, burying their feelings until they reach a limit, withdraw and get emotionally bankrupt. Infertility ultimately brings grief, struggle and acceptance of unpredictability in key areas of our lives.

As patients struggle to remain afloat faced with recurring mourning of each failed cycle as death of a loved one, the ART medical establishment and the pharmaceutical giants do nothing to acknowledge or alleviate the toll and sponsor emotional support programs out of their $4 billion yearly income. Medical schools—as part of training—teach the importance of maintaining a critical and emotional distance from patients and research subjects.  What that can mean for fertility patients is that their emotional needs aren’t validated or met in the clinical setting— the doctor is just focused on the technical aspects of the treatment, rather than the deeply emotional and human meaning of reproduction for the patient”, says Dr. Tricia R. Bogle, a Visiting Assistant Professor at Montclair State University.

People who have undergone infertility and reproductive treatments consistently relate to me that it is the prolonged exposure to the schizophrenic policy of heightened expectations and keeping hopes up during the cycle on one hand, and the complete lack of support after the negative results on the other that creates the famous Reproductive Technologies emotional rollercoaster. While there are mandatory requirements to learn how to self-administer hormonal shots, there’s never a mention that a failed cycle is possible and should be handled in a certain manner to help the patient cope. In fact, there is no single reproductive clinic interior or website that doesn’t feature smiling happy baby faces! Knowing that prolonged Reproductive Treatment can be very damaging to the patient’s psyche and doing nothing to educate about it is a crime. It is infuriating to be so helpless and yet so completely dependent on the medical establishment!

This is a story that receives almost no attention. The press and media consistently prefer to speak of technological advancements and happy endings, so when Aisha Tyler speaks of her treatment failure  or JZ opens up in a song about Beyonce’s miscarriage,  they are breaking through the wall of silence that is status quo and are, as should be, heralded as rare heroes.