The invisibility of infertility grief
By Tristan D. McBain
September 30, 2019
In my work as an outpatient mental health counselor, I have encountered numerous clients over the years with stories about reproductive loss. Not only were these stories fraught with sadness and grief, but some of the individuals were still experiencing acute grief even several years later.
As I branched out into my role as a researcher during my doctoral study, these stories stayed with me. So, I began a line of inquiry on reproductive loss that started with infertility and the accompanying grief. Since then, my research on infertility and miscarriage grief has resulted in numerous professional conference presentations and guest lectures. The purpose of this article is to share information that I have learned about those with infertility and to provide methods for best practice in counseling with these clients.
Infertility is generally defined as a condition of the reproductive system that inhibits or prevents conception after at least one year of unprotected sexual intercourse. To account for the natural decline of fertility with age, the time frame is reduced to six months for women 35 and older. According to the Centers for Disease Control and Prevention (CDC), about 12% of women between the ages of 15 and 44 have “difficulty getting pregnant or carrying a pregnancy to term.” Infertility can affect both men and women, despite a common misconception that infertility is a woman’s condition. Infertility in men may be caused by testicular or ejaculatory dysfunction, hormonal disorders, or genetic disorders. In women, infertility may be caused by disrupted functioning of the ovaries (such as with polycystic ovary syndrome, a condition that prevents consistent ovulation), blocked fallopian tubes, or any uterine abnormalities (such as the presence of fibroids).
Infertility can be categorized into one of two subtypes. Primary infertility refers to when a woman has never birthed a child and thus has no biological children. Secondary infertility refers to when a woman experiences the inability to birth a child following the birth of at least one other child. Both forms of infertility produce a cyclical pattern of strong emotion that is often referred to as a “roller coaster.”
Medical interventions
A number of available interventions may be used to increase the chances of becoming pregnant. The best course of treatment will be different for each couple and may depend on considerations such as whether the infertility is male factor or female factor, the cost and availability of insurance coverage, and cultural customs or beliefs. Some couples decide that pursuing any kind of medical treatment is not the right course of action for them. For others, medical treatment may include any of the following interventions.
Medication may be prescribed to stimulate ovulation or follicle growth in the ovaries, increase the number of mature eggs produced by the ovaries, prevent premature ovulation, or prepare the uterus for an embryo transfer.
Surgery may be necessary, perhaps to clear out blocked fallopian tubes or to remove uterine fibroids.
Intrauterine insemination (IUI), also known as artificial insemination, is a procedure in which sperm are inserted directly into the woman’s uterus. The woman may or may not be taking medications to stimulate ovulation before the procedure.
Assisted reproductive technology (ART) refers to fertility treatments in which eggs and embryos are handled outside of the body. This excludes procedures in which only sperm are handled (e.g., IUI). The most common and effective ART procedure is in vitro fertilization (IVF).
Undergoing IVF treatment requires a strong physical, emotional and financial commitment. Generally, medications are prescribed to stimulate egg production and may include a series of self-administered injections. Eggs are removed from the ovary using a hollow needle, and the male partner is asked to produce a sperm sample (or a sperm donor may be used). The eggs and sperm are combined in a laboratory, and once fertilization has been confirmed, the fertilized eggs are considered embryos. About three to five days after fertilization, the embryos are placed into the woman’s uterus via a catheter in hopes of implantation. The CDC reports that women under the age of 35 have a 31% chance of conceiving and birthing a child with the use of ART; the chances are closer to 3% for women ages 43 and over.
The IVF process can be a highly emotional time for the woman and the couple, marked by moments of excitement, hope, disappointment or uncertainty. The IVF cycle may be canceled if certain problems develop along the way, such as having too few or no eggs to retrieve, the eggs failing to fertilize, or the embryos not developing normally. Any of these situations may produce a sense of loss for the woman or the couple. After the embryo transfer, it is generally recommended to wait 10-14 days before testing for pregnancy. In some circumstances, a chemical pregnancy takes place. This is when implantation happens that results in an initial positive result, but then the pregnancy does not progress. In other words, a very early miscarriage occurs.
This section on medical interventions is important to include because these interventions are part of the infertility experience and may affect the emotional or mental health of the client. This is true even for women and couples who choose to not pursue treatment; at the end of the day, a decision was made and they must cope with the implications of that choice. Professional clinical counselors who are knowledgeable about the available medical interventions will have better context for recognizing the myriad decisions that these clients face and the potential losses that may occur throughout the process.
The invisibility factor
Take a moment to think about the grief that occurred for you after the death of a loved one. The relationship you had with your loved one was probably clearly defined, and you have memories of that person to look back on. The loss is easily identified and articulated, not only by you but by others who were aware of the death. You most likely had many people express sympathy and give you their condolences, perhaps verbally or by sending flowers. You may have taken time off work for bereavement and attended a ritual such as a visitation ceremony, wake or funeral that helped to facilitate your grief. Your loss was likely recognized, acknowledged, validated and supported in a multitude of ways.
Now think about the losses associated with infertility. One of the major losses is that of the imagined or expected family. Women with primary infertility, who do not have biological children, face the loss of the entire life stage of parenting. This may include pregnancy, passing on family or holiday traditions, and passing on the genetic legacy or surname, plus the eventual loss of other life stages such as grandparenthood. Counselors should recognize that meaning is often attached to these losses which further compounds the pain. For example, not being able to experience pregnancy means that the woman is also excluded from cultural pregnancy milestones such as going to the first ultrasound visit, thinking of fun and exciting ways to announce the news to family and friends, participating in a baby shower, and throwing a gender reveal party. With infertility, the loss comes from an absence of something that has never been rather than the absence of something that used to be.
The stigmatization surrounding infertility contributes to an atmosphere of silence and invisibility. Infertility and its accompanying losses are not as outwardly visible and may not be well known or understood by others unless the woman discloses them herself. Many women who experience infertility feel a sense of failure or self-blame toward their bodies, and some may withdraw socially, isolate, or struggle with their identity and sense of self. The stigma surrounding infertility can make it difficult for women to reach out for support. As a result, they find themselves navigating the experience alone.
When a woman does talk openly about her infertility, other people may not respond in ways that are validating or compassionate, which may make the situation worse than if she hadn’t disclosed at all. For example, comments such as, “Just relax,” and, “Give it time,” minimize the woman’s pain and invalidate her grief. Asking, “Have you tried (fill in the blank)?” or “Have you considered adoption?” implies that the woman is not trying hard enough to find a solution or that what she has tried already is inadequate. Most of the women with infertility I have encountered over the years acknowledge that people generally mean well and offer such comments in an attempt to provide hope or to decrease their own feelings of discomfort when talking about infertility.
Facilitating the grieving process
Professional counselors have a responsibility to provide compassionate and competent mental health treatment. Each infertility journey is unique, and counseling interventions should be tailored to fit the individual needs of every client. Taking clients’ cultural, religious or spiritual backgrounds into consideration, several interventions may be used to effectively assist these clients through their grief.
Counselors, first and foremost, can be present and listen. Typically, this is what is missing when family members, friends, co-workers, doctors or strangers offer comments that end up being hurtful or invalidating to the person or couple experiencing infertility. We do not have to have the answers — even as counselors. Just be there.
Counselors can assist clients in articulating what they need from others around them. This may also incorporate methods for helping clients increase their assertiveness or self-confidence.
Counselors can help clients redefine their life expectations and conceptualizations of womanhood, family and mothering. This may also include processing how clients perceive lost embryos, chemical pregnancies or miscarriages to fit within the family unit.
Counselors can help clients manage the roller coaster of emotions and ongoing stress as they are trying to conceive, rather than focusing on finding closure. Closure usually implies resolution, which may not be possible with the prolonged nature of infertility and the treatment process.
Counselors can assist clients in developing their own rituals while trying to conceive, undergoing fertility treatment, or after making the decision to stop treatment. For example, a woman once told me that she threw a party after she and her husband decided to stop IVF treatments. The party signified taking control over their decision to remain child-free and served as a celebration of the effort it had taken to come that far.
Counselors can explore appropriate methods of client self-care, including engaging in hobbies, participating in creative or social activities, and even taking breaks (as needed) from trying to conceive or pursuing medical treatment.
Counselors can connect clients with appropriate resources. It may be necessary to provide clients referrals to group counseling if they wish to connect with others who have similar stories, or to couples counseling if they are struggling in their relationships. In addition, location or cost can be barriers to clients obtaining the services that would work best for them, so counselors who are knowledgeable about online resources can provide these options. Collaborating with other health care professionals with whom the client is working can also provide more comprehensive treatment.
This is not, of course, an exhaustive list. Grief is a personal experience. Which methods are the best fit for your client should be explored in a therapeutic setting that considers both individual and cultural contexts.
What do counselors need to remember?
Imagine that you are working in a private practice when you meet a new client experiencing infertility. You are a master’s-level clinician and are fully licensed in your state. You have taken one class in your graduate program on grief and loss but have no further specialization or experience with infertility. The client has heard numerous comments, questions and suggestions throughout the years regarding her infertility. She is unsure of how counseling might help, but she feels the need to seek support.
This scenario, while general, is a realistic picture of a possible situation that any clinician could experience. As such, I will provide thoughts on what every counselor should keep in mind when it comes to the areas of infertility grief. I am not attempting to reinvent the wheel when it comes to essential counseling tools; rather, I am striving to provide context for effectively using these tools with clients affected by infertility.
>> Convey empathy and understanding. If I could share only one thing I have learned in my work with women affected by infertility, it would be that so many of them feel and believe that you cannot possibly understand what infertility is truly like unless you have been through it yourself. Many women have asserted to me that they just need someone willing to sit with them through the anguish. Counselors who are attempting to provide encouragement and hope may instead end up inadvertently dismissing their clients’ pain or minimizing their grief. It is also possible that counselors end up avoiding a deeper exploration of the experience completely because they do not know what to say. Do not underestimate your basic counseling skills when working with these clients. Acknowledge, reflect and empathize.
One way that counselors can suggest understanding is through the careful use of language. For instance, matching the client’s chosen language of “baby” or “child” is more appropriate (and accepting) than using the more medically correct terms of “embryo” or “fetus.” Language can also offer a reframe from a label of “an infertile woman” to “a woman affected by infertility.” This choice of words depersonalizes the condition and acknowledges that her identity is separate from the condition.
>> Become familiar with client issues related to infertility. Clients who talk about their infertility journey will use a variety of terms and acronyms. For example, you may have clients talk about the time they were “TTC,” which stands for trying to conceive. They may also mention medications, medical procedures or basic biological functions with the assumption that the counselor is generally informed on these topics. Although asking clarifying questions of clients can help paint a clearer picture of their experience, it is not the client’s job to educate the counselor. Take the initiative early in the working relationship with a new client to learn about infertility in areas in which you are deficient. That way, you will be able to understand the client’s journey and experience in greater context.
>> Validate the loss. The invisibility of infertility may cause some women to wonder whether their losses are real or valid. For example, I met a woman during my research who had elected to try IVF after three years of actively trying to conceive, and she gave birth to a healthy baby after just one round. Still, she felt a sense of loss over the fact that her memories of the conception did not entail a moment of passion and love, but rather recollections of shame and fear. She referred to her husband having to masturbate in isolation to provide the needed sperm sample and her experience of lying on a cold table waiting for the doctor to transfer the embryo. She did not feel that she could verbalize this sense of loss to others, however, because it might make her sound ungrateful. A counselor could validate the loss of the ideal conception story and help her articulate feeling both sad for that loss and grateful for her baby at the same time.
The invisibility of infertility also means that some women may not have the vocabulary to identify and articulate their losses. Women with primary infertility endure the losses of pregnancy, delivery, parenthood and eventual grandparenthood but may not be able to understand for themselves that they are mourning the loss of an anticipated and desired life stage. Counselors can assist clients with developing language for their losses if they are struggling to verbalize their grief.
>> Get comfortable. Discussions about infertility may overlap with other taboo topics such as sex, masturbation, miscarriage and abortion. Many of the women I have met who have been affected by infertility have had miscarriages along the way. This brings about an additional — but connected — situation of grief and loss. Talking about miscarriage can be difficult to do without also bringing up abortion, given overlapping language (e.g., spontaneous abortion) and medical procedures (e.g., dilation and curettage). These topics can be slippery territory for personal bias, but counselors should regulate their own reactions and practice reflection to maintain appropriate neutrality and support. Engaging in self-care can be particularly important when counseling those affected by infertility.
Challenging infertility stigma
More and more, childbearing is being viewed as a choice rather than a societal or marital expectation, yet not having children is still considered to be somewhat taboo. Women are socialized from a young age to prepare for eventual motherhood through childhood play that often fosters a nurturing and caretaking role. Other cultural narratives suggest that women have an ability and responsibility to control their fertility. This contributes to self-blame and shame when they are unable to conceive. Infertility is infrequently discussed publicly and thus carries a sort of social stigmatization. Counselors can contribute to destigmatizing infertility by normalizing conversations about infertility, challenges to conception, fertility treatments, and miscarriage.
Stories related to infertility gained widespread media attention throughout 2018. That March, a fertility clinic in Ohio experienced a technical malfunction that caused the destruction of more than 4,000 eggs and embryos, a loss that most certainly had potentially devastating implications for the affected families. Then, in August, a rare visual of the emotional and physical struggle of trying to conceive was captured in a photograph that went viral of a newborn baby surrounded by the 1,616 IVF needles that it took to conceive her. In the months that followed, actress Gabrielle Union opened up about her emotional fertility journey that included numerous miscarriages and surrogacy, and former first lady Michelle Obama revealed her story that included miscarriage and IVF to conceive her two daughters.
These stories bring visibility to infertility and normalize conversations about the challenges that can come with attempting to get pregnant. Counselors can contribute to destigmatization by engaging in discussions and posing curious but sensitive questions about how resources and support can be bolstered for affected women and couples.
Conclusion
Each infertility story is unique, and no one-size-fits-all solution exists when it comes to helping women and couples work through their infertility grief. Whereas an obvious loss from the death of a loved one usually includes rituals and social support, the invisibility of infertility makes it difficult to identify the losses, often leaving women affected by these losses to deal with them in silence and isolation. Counselors can help clients find the vocabulary to articulate the losses they are grieving, give voice to what they need from the people around them, and create ways to process their grief in a warm, nonjudgmental atmosphere.