By Eileen Ivey, LCSW-C, and Joan Rabinor, LCSW-C
Published in Resolve for the journey and beyond, Fall 2009
Perhaps the very idea of stopping treatment feels like an admission of failure or it can provide a little glimmer of hope and relief at the reminder that the choice to end infertility treatment lies in our hands. Similarly, the question “when is enough enough?” invites feelings both of loss and grief and also feelings of regaining control and of the ability to transform loss into new hopes and goals.
Assisted reproductive technology (ART) is in a period of amazing change today. It is certainly good news for those of us who will ultimately be helped to achieve a pregnancy. But for those who do not readily benefit from these medical interventions, there is a down side as well. It may be harder to move on to a resolution other than pregnancy and biological parenthood when there seems to be an endless array of treatments that one could try. In this world of seemingly limitless options, each of us needs to choose the degree of intervention (how much) and the extent of intervention (how long) that feels most suited to us.
So, how do we know when to stop? Each infertile couple is different – in emotional resources, financial resources, and psychological, social, and religious comfort with various options. We are different in how much time we have to invest in trying to achieve a pregnancy, different in physical abilities to undergo complex and sometimes painful interventions, and different in the ingredients which go into the wish for a child.
There is no one right way to reach such a decision. For one couple, eight IVF cycles may define enough; for another couple, adoption or childfree living may be a preferable route to any invasive procedures at all. But first let us examine the process of treatment itself.
First, by their very nature, infertility treatments are all consuming. It can be a relief to remember this, as we sometimes tend to blame ourselves for our one-dimensional focus at this time, wondering whether we are unduly obsessed and whether we will ever regain our perspective and our normal range of interests. With high-tech treatment, our monthly and even daily schedules are regulated by forces outside our own control, interfering with jobs, travel and vacations, social lives, family responsibilities and planning of all sorts.
Secondly, mood swings are a routine part of undergoing treatment. Each month can become a roller coaster ride of hope, anticipation, fantasy, elation, anxiety and, often, disappointment and grief, all timed to the events of the menstrual cycle and heightened by the effects of hormone manipulation. For instance, ovulation can bring feelings of infinite promise and excitement. If the interventions proceed well, the next two weeks can bring alternating feelings of well-being, pleasure, anxiety, and suspense. If a pregnancy is confirmed, the response can be elation, numbness, denial, or anxiety about future problems. For those who have experienced many previous disappointments, the need for self-protection may outweigh the ability to feel joy. And of course, a canceled cycle, negative pregnancy test or the arrival of the menstrual period bring feelings of loss, despair, futility, and anger.
Anger is an inevitable and understandable feature of infertility and infertility treatment. Anger may be directed, or misdirected, at doctors, nurses, insurance companies and spouses. We may turn our disappointment and anger inward against ourselves, perhaps berating ourselves for lifestyle choices (sexual choices, abortion, late marriage, deferred attempts to conceive) which may play a role in our infertility. Friends or relatives may elicit our anger by their tendency to get pregnant effortlessly or to say all the wrong things. This may be a time to give ourselves greater permission to feel these so-called negative feelings, rather than unrealistically expecting perfect grace under fire.
Isolation is a frequent consequence of infertility and infertility treatment. Infertility and involuntary childlessness may carve an often unspoken, hopefully temporary rift between us and our closest friends and relatives. This is an issue for both men and women. Men may, in fact, suffer more from this isolation, as there are greater cultural prohibitions on talking about infertility for men. Also, because men typically cast themselves in the role of the supportive, rational partner, they may be deprived of the opportunity of expressing their own disappointment and fears, feeling locked into the burdensome role of “cheerer-upper.” Paradoxically, women often feel that their husbands could be more supportive if they would share their own pain and uncertainty.
Lastly, marriages experience some heavy challenges during treatment. Normal patterns of spending time, spending disposable income, and relating sexually may all be disrupted during treatment. An additional problem is that our spouses are dealing with their own unique mix of feelings and reactions, hopefulness and hopelessness, and on their own timetables, which often are on just the opposite cycle from our own. Thus, it may seem that just when you need your spouse to bolster your hope or share your belief that the new technique will be the magic answer, he/she will be having an attack of doubt or despair. Alternately, it can be just as difficult when one partner is feeling increasingly convinced that a pregnancy is not going to occur and perhaps a bit closer to acceptance of that fact while the other partner is feeling a surge of optimism or even denial.
Sometimes we polarize the two sides of our inner debate, with each partner becoming the spokesperson for one side only. We need to bear in mind that our spouses are motivated by their own painful struggles and personal coping strategies and not the wish to frustrate or thwart us.
Hope is the engine, which keeps us moving forward through the rigors of diagnosis and treatment. Its tenacity is in many ways our greatest resource. Yet sometimes, such as when the promise of treatment is not fulfilled after numerous cycles and interventions, we may begin to wonder whether our hope continues to serve us well or whether it is preventing us from moving on.
Similarly, we may need to regard time differently, as we move into a period of evaluating whether to set a limit, or an end, to treatment. Previously, time may have been largely an enemy, as in “I’ve only got x years to x age,” “This ovarian cyst means I have to lose x months before I can try again,” “My husband is traveling out of town all this week—there goes another month down the drain.” It takes a major act of redefinition to see time as potentially on our side in the process of regrouping emotionally, reframing the question “what constitutes success?” and reinvesting in some new dreams, directions and alternatives.
Although medical factors may comprise our doctor’s recommendation to end treatment, there are many situations in which a couple must grapple with the issue of moving on without a single, indisputable external event or medical recommendation. Often the decision to end treatment is made, painfully and reluctantly, from the inside out. The decision to end infertility treatment stands at the intersection of facts and feelings and is always the result of a very personal equation.
Deciding whether to end treatment involves:
We can think of setting limits in terms of four general types of resources: time, financial, emotional and physical. After numerous unsuccessful cycles, we begin to ask ourselves “what are the costs and the priorities for ourselves, our marriage and any other children in the family. How much time are we willing to invest in this? How long do we wish to defer career goals or other dreams that may have long been placed on hold? How much older are we willing to become before at least considering parenthood by adoption? How much more can we spend on treatment without compromising other financial needs, such as family responsibilities, retirement, perhaps adoption and the costs of raising a child? What kind of toll is treatment taking on our emotional well-being and on our marriage? What about the physical stress of medications and multiple surgeries? What is our burnout threshold?”
The second part of the process, tuning in to our own cues, is a matter of receiving messages from ourselves that range from very subtle to relatively clear. This may be difficult at first, because for such a long time one message—I want to get pregnant—has been predominant, often to the exclusion of all else. With some conscious refocusing, other messages may be heard. This may take the form of really listening to and legitimizing how hard it is to set up that next doctor’s appointment or administer yet one more shot. Or it may take the form of discovering a glimmer of an interest in something new—whether a new role at work, a hobby, a different reaction to the couple down the street who has just adopted, or an older friend whose life is taking off in interesting ways after her child leaves home for college. We need to give ourselves permission to play with such ideas as they arise, trying each on for size. After all, the idea of having and raising biological children was formed over decades of fantasies and trial balloons, not all at once. Similarly, most of us made our career decisions through a series of trying different paths on for size. One’s current career or even choice of spouse may not be what was originally envisioned. How many of us ended up playing professional baseball or marrying our prom date? We need to give ourselves time to envision alternate forms of parenting or childfree living in order to evaluate a new decision.
The third part of the process involves separating biological parenthood into its component parts and clarifying the relative importance of each part to you. That is, biological parenthood involves:
Spend some time trying to separate your feelings about each of these components. Which are desirable but perhaps not essential?
Some couples find it useful to weigh these factors in a tangible, concrete, paper and pencil way, first individually and then together. To avoid ambushing your spouse, you may want to set this as a task in advance and then have the discussion at a mutually agreed upon time. Try to avoid having such a discussion at a highly emotional point, such as immediately following a failed cycle or stressful family event (such as the ever popular family visit at Christmas). This first discussion of whether to end treatment and find another course may be stressful or bring disagreement, but is the beginning of a many-staged process, which should eventually bring some shared relief and resolution.
The process outlined here may be the hardest aspect of the encounter with infertility treatment. We, as infertility patients, tend to be determined, focused, goal-oriented people with the grit and perseverance to proceed full throttle towards our goal. We are sometimes less able to downshift and reevaluate. To do so may require that we let go of a long-standing dream and grieve its loss. At the same time we must look inside for other dreams and fantasies (i.e., new images of the marriage, childfree living, adoption, career opportunities) that can take root in our hearts where previously, only images of biological parenthood were able to grow. Taking breaks periodically between treatment cycles may provide opportunities to monitor ourselves for subtle shifts and inner cues which may point toward a readiness to end treatment.
Regardless of the ultimate outcome of this stressful and intense period of treatment, we can better survive it with the knowledge that this is a time-limited project, and need not be, as we sometimes fear, a career. One thing we do have control over in this process is when it will end. We do not have to live without hope, but may instead redefine our original dreams and then embrace new goals.
Joan Rabinor and Eileen Ivey are licensed clinical social workers with individual and couples psychotherapy practices in Chevy Chase, MD. Both have extensive experience helping clients deal with the challenges and decision-making around infertility and adoption issues. Joan can be reached at 301.654.8468 or firstname.lastname@example.org. Eileen can be reached at 301.652.1030 or email@example.com.