Counseling 'Incomplete' Families

Helping Couples Cope with the Roller Coaster Ride of Infertility

By Stacy Notaras Murphy, M.S.

Denny and Lisa Ceizyk of Oro Valley, Ariz., benefited from the encouragement of caring counselors, doctors and retreat leaders during their six-year journey through infertility. But the pain caused by one support group session still stands out.

A counselor decided to include both primary and secondary infertility patients in the same support group. This meant that people who were struggling to have a second or third child were thrown in with the Ceizyks, who were trying to conceive for the first time. "Absolutely the worst experience we ever had was a session with four other primary infertility couples plus one mother who already had two kids and was having trouble becoming pregnant with her third," Denny Ceizyk remembered. "She brought one of the children to the support group and allowed her to run around during the whole session. I cannot describe the pain that caused. The counselor had no idea of the magnitude of that experience."

Couples frequently describe infertility as a roller coaster ride.

Referring couples to the appropriate resources is just one of many nuanced tasks that counselors must consider when working with clients who are facing infertility issues. Couples frequently describe infertility as a roller coaster ride. Expectations build as new treatments are considered, while any lack of success seems like a free fall. Although counselors often guide couples through the more predictable topics of stress management and grief in this work, they also may face issues of medical health psychology, gender role definition and even faith testing.

"There is the piece that's about loss and trying to fulfill goals, dreams and expectations," explained Judith Daniluk, an American Counseling Association member and professor at the University of British Columbia who has authored numerous journal articles on infertility counseling. "But there's another piece that's about coping with the medical system and the procedures that are happening to your body."

Daniluk noted that counselor education programs traditionally have omitted infertility, considering it a physical health issue. "Most of us cover the basics around grief and loss," she said. "But specific losses, like reproductive losses, don't tend to be included."

Nichole Murray-Swank, an ACA member and assistant professor at Loyola College in Maryland, wishes she had known more about the medical aspects of infertility before working with her clients. "There are so many levels to treatment, and it can be so complicated," she said. "It's disruptive when the counselor has to ask, 'What's that procedure exactly?' While you are always going to do some of that clarifying, it's important to do as much background work in the treatment area as possible."

RESOLVE, the National Infertility Association, can serve as a resource for counselors beginning this education. Established in 1974, RESOLVE offers education, support networks and advocacy for those experiencing infertility. The association emphasizes all aspects of the infertility crisis equally, including treatment options, coping strategies and alternative resolutions.

"It's a simple word: infertility. But it does ripple into so many things," said RESOLVE Medical Information Director Diane Clapp. She finds couples counseling an effective way of working through these issues. "It's a life crisis that's impacting both of them," she said. "They possibly will be reacting in different ways and, yet, they have to make joint decisions about treatment, stopping treatment and other options. It's very challenging."

Some clients already have counselors to turn to when infertility becomes an issue, while others seek out professional support as the crisis grows. "The main component that you see as couples or individuals come to counseling is that feeling of being out of control with their life plan and their bodies," Clapp explained. "Frequently, these are people who have planned pretty carefully - 'We're married and we're going to start having kids next summer.' When this doesn't happen and they're three and four years into it, it can be the first time that they've really felt out of control."

While loss of control, shame and grief are common to many couples facing infertility, these emotions are sometimes rooted in a particular partner's history. In such cases, individual counseling can speed the healing process. "This absolutely is a couples issue if they walk through the door together," Daniluk said. "But sometimes there are individual issues that have to do with grief, loss and with potentially unfinished business from the past. Clients may feel that they're being punished, and that kind of work can be done on an individual basis."

Helping clients find a support group that fits

Support groups can ease the difficult road of infertility by showing couples that others are on the same journey. These groups often provide men their first opportunity to talk with other men about their experience. But counselors should perform careful research to ensure that a group is appropriate for a client's specific needs.

"I've led support groups, and it is obvious that it can help to just know that there are other people out there," Murray-Swank said. "But there is a flip side to it. If someone is early in their treatments and someone else has had many failures after years and years, participating in groups with so many different stories actually can be hard for people."

A New York-based therapist who spoke to Counseling Today on condition of anonymity described her own challenging experience in an infertility support group. "When I first started the group, everyone else there had lost pregnancies and I hadn't even had one," she said. "You can't just catch everyone in this big infertility net. There are people who are infertile for different reasons. To be in a group with people who have lost pregnancies at four weeks would be a very different experience for someone who had terminated at the second trimester."

As a result of their difficult support group experience, the Ceizyks launched their own peer-run group focused on primary infertility. But when Lisa Ceizyk became pregnant and eventually gave birth to their daughter, she noticed changes in both the group's dynamic as well as her own needs. "It's kind of like it never ends," she said. "You finally get pregnant, you go through the pregnancy in a very fragile way and then you have the baby. I always thought that having the experience of infertility would make me immune to the stress of parenthood, and guess what? That's not the case. I've felt like now I can't complain because we tried so hard for her - there's a whole new dynamic there."

Men versus women: Gender roles

Counselors also must prepare for the role of gender dynamics in infertility work. "Women tend to bear the brunt of a lot of the interventions and, of course, the outcome of treatment plays itself out in a woman's body," Daniluk said. "Frequently it can be helpful for the woman to have some individual work around relaxation training (and) visualization to get through some of the medical procedures (and) to maintain some sense of control in the process." Daniluk suggested adapting tools for overcoming phobias, such as systematic desensitization for needle use and breathing techniques for reducing anxiety. Men also may benefit from these stress management skills, she added.

In addition, counselors ought to consider the cultural shame that a client might feel about failing to have a family by traditional means. Murray-Swank noted that many women internalize their surprise over being infertile, allowing it to manifest in guilt or anger. She recalled a client who thought about divorcing her husband so he could find another wife and have children. "I've seen the self-blaming person going into depression and feeling shame about her body, and I've also seen the anger side," she said. "Not everyone is sad; some people are mad that this is just not fair."

According to RESOLVE, male-factor infertility accounts for 40 percent of all cases. Despite this prevalence, men may have difficulty articulating their distress due to social and cultural factors. "Coping with stress is different for men than for women," said William Petok, a Baltimore-based psychologist and chairman of the American Society of Reproductive Medicine's Mental Health Professional Group. "Part of it is knowing how to work with men about what their issues are and providing them opportunities to talk."

As Petok explained, men typically are problem-solvers. When faced with male-factor infertility, they want specific solutions. "The problem, of course, is that there is no easy solution," Petok said. "Nobody likes to feel helpless, but men tend to cope with stress less frequently by talking to peers about it and so are left without that as a resource. They tend to become absorbed into other kinds of activities."

Men also may grapple with powerlessness in situations of female-factor infertility. "It is characteristic for couples to struggle in the sense that women tend to vocalize more of their distress," Daniluk said. "Male partners, who already are once removed from reproduction, feel powerless to fix it for their female partners."

Infertility and associated treatments can wreck havoc on intimacy, she added. "That's where counselors could do so much to help couples realize that while they have shifted their goals from sex for pleasure to sex for procreation, there are 320 days of the year that they can't procreate because she's not ovulating."

When is enough, enough?

A counselor can also play a vital role in helping partners who are at odds over whether to continue treatment. "There certainly are times when there is a disconnect between the couple," Clapp said, "particularly around the issue of when is enough, enough? One person may want to continue treatment, and the other may be feeling battle-weary."

A counselor can help partners address differences in their willingness to try new treatments, seek support and tell other family members. "Stopping treatment involves addressing the grief and the loss for each person and then looking at the options which might address their needs in the future," Clapp said. "What happens often is that the husband may want to adopt and the wife may want to try a donor egg. Then counseling is critical in order to come to some type of resolution together."

Rich Okulski and his wife, Gayl Anglin, of Silver Spring, Md., have spent the last 18 months undergoing infertility treatments, including one in vitro fertilization and two intrauterine inseminations. They have also experienced a miscarriage. "We're really at the final stop in terms of trying to have our own, natural child," Okulski said. "The frustration starts to mount, even as you get a surge of renewed hope when you go to the clinics. It's a journey through the whole process, and you have to be resilient and bounce back in order to deal with the obstacles as they come along the way."

Anglin said their couples counselor was an invaluable source of support when the treatment process strained their marriage. "Fertility is such an emotional, heart-wrenching, very personal thing," she said. "You're dealing with such difficult stuff, and at the same time you need to feel that you're safe talking about it."

Anglin said their counselor accompanied them as they traveled an uncertain road, including helping them to consider options after a miscarriage and to deal with the possibility that treatment might never work. "I'm a planner. I've always had a game plan," Anglin said. "She worked with us to consider all the scenarios. While there is grieving and pain, we worked through that as a couple and she helped us facilitate that. As much as I will be sad [if treatment doesn't work], I am at peace with it because we've worked through the long-term issues. We know that we will have a family."

Spiritual fallout

Daniluk approaches this issue in terms of adult development. "Being able to have a child, being able to procreate, being able to construct one's future that way is a critical, fundamental part of most adults' lives," she said. "I've had more people over the years say, 'Infertility? What's the big deal? People can always adopt.' Well, the big deal is that there is probably no other thing that one can go through in life, in terms of a loss, that has such far-reaching implications on a couple than the inability to have children."

At some point, counselors have to adjust their roles from helping clients manage medical questions to advising them on coping with loss or reconstructing their lives around a new reality. "Counselors need to be aware of the significance of the fact that our entire socialization tells us that at some stage in our lives we will not only likely do this, we have the right to do it, and we have everything we need to do it," Daniluk said. "To have that denied is hugely difficult for people. It's not only about a medical crisis, it's an existential crisis: If it's not going to be kids, what's it going to be?"

Further, the expectation of building a family may have spiritual or religious reverberations. Daniluk remembered a Roman Catholic couple struggling with the decision to pursue infertility treatment. "As desperately as they wanted to have a child, they said, 'It's against our faith to do this.' Yet, on the other hand, their understanding was that the whole purpose of marriage is to have children, according to their faith," she said. "They wondered, 'Where do we go with this?'"

June Hutchison, an ACA member and affiliate faculty member at Regent University and Loyola College in Maryland, teaches her students to be sensitive to the role of religion in counseling relationships. "The presence or absence of the client's adherence to the family's faith tradition is central to the development of coping skills, resilience and acceptance of different aspects of the diagnosis of infertility," she said. "There is a risk that counselors, in their compassion, may become focused on the medical diagnosis and not hear how the client's perception of infertility is integrated with their understanding of a faith tradition."

Is experience really the best teacher?

Many counselors are drawn to working with infertility issues based on their own experiences trying to conceive. Having gone through it themselves, these counselors may be familiar with the various treatments and more aware of the emotional terrain. But past experience can create its own challenges.

"That's the draw, and it draws women in a much stronger way than it does men," Petok said. "The problem, of course, in this field is that there just aren't enough men who are doing this work. If you look at the causes of infertility, it's about equally divided between men and women. But if you look in our professional organization (ASRM), there are about 14 percent men." He noted that ASRM's Mental Health Professional Group provides post-graduate level infertility counselor training, including ethical instruction.

The Ceizyks' first counselor had also gone through fertility treatment, and they believe her insider knowledge was helpful. "There are nuances for each type of procedure," Denny Ceizyk said, "different emotions and issues that come up. There are different connections and different levels of grief that we went through as each one of the cycles failed, and our counselor was able to tailor each session as we progressed more and more through those cycles because she really understood what we were talking about."

But self-disclosure can be a thorny topic. When the New York-based counselor and her husband faced the decision of terminating a pregnancy due to genetic factors, their therapist revealed her own similar struggle and eventual decision not to terminate. "We left that night and we knew something really weird had happened," she said. "Trust was broken that day. It was such a horrible situation that I'd gone through, and I really wanted to talk to someone who had gone through it. But to talk to someone who thought they were going to have to go through it but then didn't is not the same thing."

This counselor expects to work in infertility counseling in the future, but only after her situation is resolved and she has completed her own healing. "I think I would be a great therapist someday for people going through infertility, but definitely not for a while," she said. "When you're fresh from the battle of infertility, you're still raw. It's a long, difficult process, and there are a lot of feelings of anxiety (and) failure. You don't get over those just because you have a baby. It takes a while to get over those."

The new infertility clients

While fertility issues are still a common problem for traditional couples, the types of clients considering treatment are changing. At a fertility center in Vancouver where Daniluk consults, one-third of the patients are single women.

"They are looking at having children on their own using anonymous donor sperm and sometimes using donor eggs," Daniluk said. "Many of the women are in their early 40s by the time they decide that the way it was supposed to be in the storybooks is not the way it actually has turned out."

Daniluk also noted that an increasing number of infertility clients are gay and lesbian couples. "It's important that counselors know that," she said, "because when we start talking about people with fertility issues, there's an automatic assumption that those people are married couples, and that has changed a lot. There are many people who are in (traditional) couples and are dealing with this, but there's a whole other group who will be dealt with somewhat differently by mental health professionals and counselors."

This article originally appeared in the December 2005 issue of Counseling Today, the monthly publication of the American Counseling Association (www.counseling.org).