Helping Clients Through the Crisis of Infertility
By Kate Jackson
For The Record
Vol. 5 No. 5 P. 24
The grief and loss experienced by infertile couples
is often underestimated.
Although medicine in recent decades has paid lip service
to holistic health, the message hasn’t resounded in the realm
of infertility treatment programs. Individuals and couples who struggle
to conceive a child have available to them extraordinary assistive
reproductive technology, yet they are often unable to find services
that will help them cope with the sometimes overwhelming emotional
and social impact of infertility and its 21st century treatment. Individuals
at the beginning, middle, and end of infertility treatment and beyond
need more than cutting-edge technology: they need an arsenal of psychological
support and guidance to cope with a problem that has the potential
to be emotionally, financially, socially, and sexually devastating.
Couples’ needs through this long process are
vast. They must learn about complicated and expensive treatments that
may have only slim chances of success; about stress management to
help them through the treatments and financial management to pay for
them; about staying together as a couple and supporting each other
through the always challenging and sometimes humiliating process;
how to maintain self-esteem when they feel inadequate; how to keep
a relationship loving when sex becomes goal-oriented; and above all,
how to grieve and process loss.
The Knowledge-Service
Gap
When Jeanette Harder, PhD, MSW, assistant professor at the University
of Nebraska, Omaha, School of Social Work, and her husband were undergoing
infertility treatment more than a decade ago and were rocked by the
attendant emotional hurdles, they found no resources to help them
cope. RESOLVE: The National Infertility Association, a nonprofit organization
with a nationwide network of local chapters, was the only significant
organization at the time; however, Harder found it to be focused on
medical aspects and tending to revolve around the needs of women.
According to Sharon N. Covington, MSW, LCSW-C, director
of psychological support services at Shady Grove Fertility Reproductive
Science Center in Rockville, MD, clinical assistant professor in the
department of obstetrics and gynecology at the Georgetown University
School of Medicine in Washington, DC, and a private practitioner,
the picture is improving somewhat. When she began in the field more
than 20 years ago, there were few social workers or other mental health
professionals working with this population. “Today, it’s
rapidly growing and expanding, as it needs to be, and there’s
greater recognition by the medical professional of the psychological
needs of people going through infertility treatment as well as of
the importance of having a social worker or other mental health professional
as part of the treatment team.” Nevertheless, says Covington,
who developed a model of integrated psychological support services
at Shady Grove Fertility, while bigger practices, hospitals, and academic
institutes are likely to have therapists on site, most infertility
centers do not, and many will refer patients outside of their practice
for counseling or assessment.
Social workers, says Harder, “bring a unique
view to the entire issue of infertility because they have a holistic
view of all the systems that impact their clients and so can bring
a fresh perspective.” They’re attuned, she adds, to the
wider issues—social, financial, and emotional, as well as medical—and
especially to what is generally the couple’s greatest need:
social support. However, there’s a dearth of adequately trained
therapists and few formal opportunities for learning. Seldom a significant
part of any curriculum, infertility may get cursory mention in courses
about human behavior or marriage and family. To be informed and sensitive,
social workers, says Peggy Morton, MSW, DSW, clinical assistant professor
of social work, New York University School of Social Work, would likely
need to set about on a self-directed course of study and review of
literature.
Covington, who helped establish the American Society
for Reproductive Medicine (ASRM) guidelines for training and practice
for professionals in the field, explains that competence in infertility
counseling demands background and training in the medical aspects
of infertility, including the newer assisted reproductive technologies;
sound theoretical and clinical training consisting of a master’s
or doctoral degree in social work, psychology, or mental health; licensure
as a mental health professional; and specialized training in the unique
aspects of helping individuals with infertility.
Where one gets that training, Covington acknowledges,
is something of a conundrum, since material about infertility is conspicuously
absent in social work and psychology programs. A starting point, she
suggests, is the ASRM’s annual meeting, at which pertinent two-day
postgraduate courses and sessions are offered. To help social workers
and others get up to speed on their own, Covington and her colleague
Linda Hammer Burns, PhD, wrote and are currently revising Infertility
Counseling: A Comprehensive Handbook for Clinicians, the only text
on infertility counseling, covering research, medical treatment strategies,
and clinical considerations, as well as emotional issues and counseling
techniques.
Helping Hands
The first need, explains Morton, is to acknowledge to individuals
or couples the depth of the loss when people first face the realization
and begin to accept that they’re having difficulty conceiving.
Then there typically begins an epic of choices, upsets, setbacks,
and new starts. “It can be a very long process,” notes
Morton, “because often there is attempt after attempt and the
pursuit of technological methods to achieve fertility.” Sometimes
this raises secondary questions that need to be explored about other
means of having children, such as adoption, for example. “There
are many steps and many possible paths that people can take,”
observes Morton, all with their own challenges.
“Our social workers need to know about the level
of grief that’s involved, the huge amount of anger, the roller
coaster of emotions when you think you’ve conceived and find
that you haven’t,” says Harder. Perhaps most important,
she suggests, is that social workers be attuned and attentive to the
overwhelming isolation that often accompanies infertility. “That’s
something we don’t want to talk about, and if we do, people
turn away from us because they can’t grapple with the intense
anger, the disappointment, and all the emotions—they’re
often very uncomfortable with that.” Consequently, there’s
a deep loneliness between partners at a time when they already feel
isolated.
Social workers can also play a key role in helping
couples evaluate medical information and options and make difficult
decisions. “There are so many choices, and what’s challenging
for the couple is knowing when to call it quits and when to consider
other lifestyles, whether that’s living without a child or adopting,”
says Harder. “The medical field will always offer more choices.
There will always be more to do, and it’s very difficult for
couples to know how far to go and when to stop.”
According to Covington, clients often come for help
when they’re feeling stuck in the process or bewildered by their
choices—“decisions about moving into assistive reproductive
technology such as using donor egg or donor sperm; whether to consider
gestational surrogacy or adoption; to adopt; or to remain a family
of two.” The couple may be at odds about these choices as well,
and social workers can help them get beyond an impasse and reach the
decisions that will be best for them for a lifetime.
Another role for social workers, suggests Morton,
is to empower clients to talk to their medical providers with knowledge
and assertiveness. Whether for profit, glory, or a genuine desire
for what’s best for the patient, doctors often push clients
to continue treatments beyond the point that may be right for an individual
or couple. “It’s often very hard for people, especially
for women, to assert themselves and say that they’re either
ready to stop trying or that they don’t want all the medical
interventions that are now possible in this era of reproductive technology,”
explains Morton. “It’s become increasingly hard to say
no, and social workers can help couples see that they have a choice,
that they have the right to decide when they’ve had enough.”
Social workers who desire to help infertile couples
require a great deal of expertise to offer guidance on a wide range
of issues. They must be well versed in the medical causes of infertility
for men and women, the vast array of medical treatments available
today, the financial challenges those treatments may present, and
the entire gamut of emotions they may arouse. Furthermore, they need
an arsenal of coping strategies to offer couples who are continuing
with treatment or choose to relinquish their dream. To help the latter,
they need to be well informed about options and issues for those who
choose to pursue adoption.
In all cases, social workers will need to be well
prepared to help facilitate grief, which will be an issue regardless
of the outcome of treatment and whether or not the couple has a child
by any means. “Assisting people to grieve is a big piece of
what we do, because even if they’re in the middle of treatment,
they’re grieving over each month that they lose,” says
Covington, who adds that unresolved grief can complicate the decision-making
process.
As important as all those areas of expertise are,
Harder cautions against overlooking what is perhaps the couple’s
greatest need: “What shouldn’t get lost in that list is
the importance of social support.” Most couples who are dealing
with infertility have friends who are having children and whose lives,
naturally, are wrapped up in their children. Because it’s intensely
painful to be among such families when they can’t create one
themselves, infertile couples often find it difficult to maintain
friendships. Consequently, loneliness and isolation compound the difficulties
they’re already experiencing. Harder insists that the simple
service of providing a support group that lets infertile couples gather
and share with others in the same situation is invaluable.
Harder cautions social workers not to underestimate
the value of the services they can offer infertile couples, noting
that the guidance and skills they provide will carry individuals through
the difficult years and resurgence of emotional upheaval that are
part of the infertility experience. Few understand, she explains,
that no matter what the outcome, the problem doesn’t just go
away. “For many people, infertility isn’t just something
they deal with for two to five years and that is resolved once they
have children.” The feelings and patterns of behavior or beliefs
that arise during this experience—for example, feelings of inadequacy—can
persist indefinitely, she suggests, well beyond the years in which
individuals are dealing directly with infertility. “All of the
service we can give to these people as they’re going through
the experience will help them for the rest of their lives, because
it’s not something you can ever say is over or didn’t
happen or isn’t a part of them.”
Personal Experience
Social workers and other therapists who work with infertile individuals
or couples are often drawn to the specialization through personal
experience—which may bring both advantages and disadvantages.
Harder turned to social work because she needed something to fill
her life when she and her husband were struggling with issues surrounding
the desire to have children. “A lot of people find ways to fill
that hole,” she says, in whatever manner suits them best. For
her, graduate studies in social work gave her a platform through which
to study the effects of infertility. Because she struggled with a
lack of resources, she started a support group for couples dealing
with infertility as one of her social work master’s program
practicums. Covington also hit a brick wall when her personal experience
of early stillbirth and miscarriage led her on a search for support.
“When I sought assistance and understanding for dealing with
these crises, I found that there were no books, no support groups,
no resources at all in this area, so I started a support group in
Washington, DC, called MIS [Miscarriage, Infant Death, and Stillbirth].”
To work professionally with couples who need help
coping with the roller coaster of emotions that accompanies infertility,
Covington and Harder, like others who are drawn to the field through
personal experience, had to first get some distance and resolution
from their own experiences. “I’ve gone off in other directions
and I’m just now coming back. I needed to heal personally from
the infertility before I could help others professionally, and I’m
just now able to begin doing that,” says Harder.
The flip side of that, says Morton, is that those
who have experienced these challenges and emotional assaults can understand
and empathize with the clients’ feelings. “In an almost
psychoeducational way, you can help people with the process and the
various interventions if you’ve had that experience yourself,
but of course you always have to check your own reactions.”
People dealing with infertility and related anxiety or marital issues,
agrees Covington, often see social workers who may have no understanding
of the specific issues and who, therefore, tend to minimize what they’re
going through. “The patients ends up educating the therapist
and as a result don’t get the assistance and direction that
they need,” Covington says.
The challenge, says Harder, is to make sure that as
a therapist you’re not just speaking from personal experience
and individual values and choices. “Each one of us needs to
decide how we are going to resolve the issues, and just because one
of us turned to adoption, for example, doesn’t mean that’s
the right choice for everyone. I waited 10 years to begin working
in this field because it was such a very deeply emotionally scarring
time in my life that it took a long time to reach the point at which
I could talk about it and listen to others and be willing to face
that pain again through the experiences of others.” It’s
crucial, therefore, she maintains, that helping professionals in a
similar situation be certain that they have healed as much as possible
before they reach out to help others.
First, Do
No Harm
Working with infertile couples, experts agree, is an enormous challenge,
fraught with pitfalls. One of these is knowingly or unknowingly imposing
one’s own values on others. “You as a helping professional
have to really know where you stand on issues and not push your agenda,”
cautions Morton. For example, she notes, if you have a particular
viewpoint about adoption, you may subtly or not so subtly encourage
someone not to pursue it but rather to keep trying to have a child
biologically. “Social workers run the risk of pushing a decision-making
process one way or another, so it’s probably best not to be
directive, but rather to help people come to their own terms about
what they’re facing and what course of action they want to take.”
Despite good intentions, “it’s also very
easy for people who have not dealt with infertility to say the wrong
thing and to be very hurtful,” says Harder. Therefore, she insists,
“the most important thing we can do when working with couples
struggling with infertility is to listen carefully and let them vent
their feelings, express what is happening to them and how they’re
experiencing it.” It’s equally important not to indicate,
directly or indirectly, judgments about the choices that are made
or about clients’ competence. Social workers, explains Harder,
“must recognize that these people under normal circumstances
are typically successful in their lives and are very healthy emotionally
and intellectually, but in this area of life they feel totally helpless
and many times just need to be heard.”
Saying the
Wrong Thing at the Wrong Time
Even well-intentioned professionals can say the wrong thing to individuals
who are already exceedingly vulnerable to pain, disappointment, or
criticism. Infertile couples are sometimes rushed through the healing
process into adoption, for example, by helpers who want them to “get
on with their lives.” Counselors, trying to be encouraging,
may push people to start acting and stop complaining, which in itself
is demoralizing, but what’s worse is that it may spur people
to begin the adoption process before they’re ready. Adoption,
notes Harder, isn’t the “cure-all” people often
believe it to be. “Decisions to stop infertility treatments
or stop trying your own efforts to have a child and move toward adoption
need to be handled very separately, making sure that the grief of
infertility is resolved as much as possible before beginning to think
about adoption.”
Similarly, says Covington, many people fail to realize
what a profound loss this is. “People are grieving over something
that is prospective in nature rather than retrospective in nature,
and prospective grief is much harder to deal with. Yet medical professionals
or therapists may minimize those feelings and fail to understand why
people can’t just get over it and move on,” she explains,
adding that “it’s very difficult to grieve because the
grief is invisible and the loss is invisible to others.”
— Kate
Jackson is a staff writer for Social Work Today.
Men, Women, and Infertility
According to Sharon N. Covington, MSW, LCSW-C, director of psychological
support services at Shady Grove Fertility Reproductive Science Center
in Rockville, MD, clinical assistant professor in the department of
obstetrics and gynecology at the Georgetown University School of Medicine
in Washington, DC, and a private practitioner, 40% of infertility
results from female factors and 40% from male factors. In 10% of cases,
the cause is unknown, and in the remaining 10% the infertility results
from both male and female factors.
Therapy for infertility-related issues often fails
to take into consideration that men are equally affected emotionally
by infertility, but that they tend to process the experience differently.
“In the medical profession, men tend to get marginalized in
the process because so much of the treatment is focused on women,
even though the causes are equally distributed,” Covington says.
“Everything gets focused on the women, and people are more attuned
to her grief, her sense of loss, or her angst about it than they are
to those of men.”
It’s not uncommon, she explains, for men to
be marginalized and isolated because of it, all of which contribute
to imbalance of feeling that can occur between the couple. “They
can be at very different points or at the same point but experiencing
it very differently,” observes Covington, which can foster loneliness
between the two at a time when they most need support.
Couple counseling skills will come to the forefront
here because the impact on the couple—which may be positive
as well as negative—is typically enormous. “There’s
a tendency to be either blaming the other or feeling guilty that you’re
the one keeping your mate from being able to have a child,”
says Harder, and those feelings are difficult to express. Layered
on those feelings is the strain the demands and challenges of treatment
place on the relationship.
Covington is quick to point out, however, that couples
are often strengthened by the experience—that the skills a couple
learns as a consequence of going through infertility and its treatment
actually can improve the relationship. Covington facilitates a 10-week
women’s infertility mind-body group and brings the husbands
in for two of the sessions. “If I offer this as a couples group
to begin with,” she says, “I wouldn’t get the men,
but when I offer it as a women’s group, once the husbands come,
they don’t want to leave.” She recently asked attendees
about their experiences and found that across the board, every one
of them talked about the way it strengthened their relationship. “People
can feel so overwhelmed by the whole process and they need to understand
that there are good things that can come from this.”
— KJ
Resources
American Society of Reproductive Medicine
www.asm.com
RESOLVE
www.resolve.org
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