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