Fertility and perinatal loss

By Dr. Batya L. Ludman, Psy.D., FT · Published July 3, 2015

A friend was diagnosed with an ovarian tumor at the age of 22. Twelve years later, given her horrible prognosis, her friends and family are thankful that she is doing fine and cancer-free. Sadly, she is also baby free. At the time of her treatment, even though she had the good sense to ask, no one addressed the issue of cryopreservation- egg freezing- seriously. After miscarriages and failed fertility treatments, she and her husband are childless, and being told she should be thankful to be alive is no consolation.

Most people anticipate an easy conception, uncomplicated pregnancy, and delivery of a healthy full term baby. For someone unable to conceive, or to carry a pregnancy to a healthy birth, it feels as though everyone around them either has a child or is pregnant. Advances in medicine, as well as the recent focus on surrogacy, has brought to the fore various options for some couples, but certainly not all.

While Israel offers more help to childless couples than most countries, with a succession of medical and other treatments, the psychological burden of infertility is nonetheless devastating. The pain is manifold: the initial shock of not being able to conceive or maintain a pregnancy, followed (for many) by years of stressful, painful and potentially unsuccessful procedures and attempts, only to have one month sadly turn into another with no sign of pregnancy in sight. Grief can become chronic, often exacerbated by years of frustration and a lack of closure that can keep couples in limbo, feeling both helpless and hopeless. The effects on the individual, the couple and the family can be great.

But unless you’ve been there, you likely have no idea what people are going through. Those of us who work in the field of bereavement refer to this as disenfranchised grief: a silent, often minimized grief that is rarely public or recognized by society. Yet studies estimate the incidence of infertility to be as high as 15 percent.

For someone dealing with infertility, there are losses on so many levels.

The diagnostic process for infertility or pregnancy loss is time consuming, uncomfortable and potentially intrusive, creating its own anxiety, anger, frustration and sadness. One tires of the stress of “scheduled” intimacy and vacation and work plans determined by ovulation timing. One feels exposed as private details of one’s intimate life are explored, all of this often under a cloak of silence and a feeling of tremendous shame. These are not details one typically shares with friends or family, and the stress on a couple- with each partner frequently needing their own emotional support- can be palpable and may bring them in for therapy. Couples may feel inadequate, hormonally “challenged” and drained as they go through a roller coaster ride of emotions unsure if they are truly moving forward.

Whether a couple has gone on to have children or not, I am impressed by the enormous sadness a “mom” can carry years after a miscarriage, termination or other pregnancy loss has occurred. A study recently published in a prestigious obstetrics journal found that while miscarriage is a frequent occurrence (15-20%, or one in six of all recognized pregnancies), those who experienced one believed that it occurred in no more than 5% of all pregnancies. The study reported an enormous sense of perceived responsibility, blame, guilt, shame and isolation at a time when a couple needs more emotional and psychological support than ever.

Infertility and pregnancy loss are an ongoing source of stress, fear and heartbreak for each partner, and those around them. With the emotional, physical, financial, interpersonal, career and practical costs at each stage, what they may initially have anticipated to be a short term project taking a few months often becomes a more desperate and long term investment evolving into years. For those couples who ultimately conceive, the pregnancy can be filled with anxiety, disbelief, and fear of becoming excited or attached.

While many experience a happy pregnancy outcome, others feel their body has let them down. The final acceptance of infertility is a difficult and painful acknowledgement in a society that promotes the concept of family as necessary for self-fulfillment and completion of lifelong dreams.

For those dealing with loss, support is invaluable to moving on. Among family, friends, others who have “been there”, and professionals, there will be those who understand and know just what to say, and others who are insensitive and will see the loss as minimal, insignificant or “all for the best.” Others, not knowing what to say, may painfully distance themselves. Each partner too will deal with grief differently and may be at a different stage of acceptance, making it harder to relate to one another. Helping couples understand that it takes much longer to come to terms with their loss than they could ever have imagined is essential if they are to move on together.

They may also need to guide others, at a time when they themselves are at their lowest. People who want to help may decide to say nothing out of fear of “reminding” the couple of their loss. They don’t realize that it’s never far from the couple’s consciousness. Others may say inappropriate things. It is rarely because they don’t care; but rather they just don’t know what to say.

Letting others know what is and isn’t helpful – as a couple and individually - is critical. While some turn to religion, others find it offers little in the way of healing rituals or support. Joining a “community” of others, who have had similar experiences, may offer new insight. Online support too can be helpful but has the potential to keep one steeped in grief.

In spite of the cascade of emotions, at some point, couples do move on. For those experiencing sleep issues, eating problems, depression, withdrawal, sexual distress, resentment, emotional emptiness, lack of energy, fatigue and other painful symptoms of loss beyond what one might expect, professional help can be beneficial. Taking a break from a fertility workup is also important and at some point, you may need to give yourself permission to “give up”, explore other options or create closure and acceptance by finding meaning outside of children. Acknowledging the pain and giving yourself time to heal, and memorializing the many losses, is a slow but necessary process.

If you are experiencing this, may this difficult time in your life ultimately enable you to find a way to experience greater joy.

A version of this article suitable for printing is available here.