INFERTILIY... HOW CAN WE GO ABOUT IT...? ASK
A Publication of the American Counseling Association
Counseling Today, Knowledge Share
The invisibility of infertility grief
By Jennifer Sanchez September 30, 2019
2 Comments
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.
****
Tristan McBain is a licensed professional
counselor and licensed marriage and family therapist. She is a recent
graduate from the Counselor Education and Counseling Psychology
Department at Western Michigan University in Kalamazoo. Contact her at tristanmcbain@gmail.com.
Knowledge Share articles are developed from sessions presented at American Counseling Association conferences.
Letters to the editor: ct@counseling.org
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Related reading on this topic, from the Counseling Today archives: “Empty crib, broken heart”
****
Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.
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2 Comments
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Dr. Deanna Cor As a queer counselor educator who is the parent of a child conceived through reproductive endocrinology, I am very surprised at how heteronormative this article portrays the fertility and grieving processes. It is a compounding effect to hold minoritized, oppressed identities and go through these processes but the author focuses exclusively on heterosexual clients. ↓-
Tristan McBain You can get your ex back and cure your infertility with Dr. Odunga.When I met Dr. Odunga, my husband had divorced me because I was a barren woman of 41 and I have been married for 21 years. I was devastated and confused as a woman of my age until when I went online to look for help on how to get my marriage back then I met Dr. Odunga. Within 48 hours of contacting him, my ex husband came back home and pleaded for me to forgive him and take him back after 5 months of divorce. I accepted him back and then I told Dr. Odunga of my bareness for him to help me with child. He did the spell and sent me the herbs for fertility that I will use and immediately I used this medicine, I conceived. My husband got me pregnant and I gave birth to a baby girl. Presently, I am a mother of a beautiful girl and I am happy in my marriage. This is all thanks to Dr. Odunga and his wonderful work. Contact Dr. Odunga Via Whats App number +2348167159012. Email at: odungaspelltemple@gmail.com
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