On September 27, a diverse group—doctors, authors, filmmakers, trauma therapists, and members of the public—will convene in New York City to watch the infertility documentary The Cycle: Living a Taboo. They will also participate in a forum to “challenge conventional wisdom and foster a new, more open dialogue about infertility.” This project is meant to give voice to important but often marginalized perspectives, including patients who are not only unsuccessful but traumatized by the fertility treatment experience.
It’s good to redirect our attention from the depression and anxiety that we often associate with those seeking fertility treatments to a more complicated emotional cocktail that includes desperation, anger, and helplessness. But while we collectively share and show compassion for our diverse reproductive experiences, we must clarify exactly what we mean when we discuss these emotions and how they bear upon patients’ competencies. Before we encourage infertility patients to spring out of the stirrups to avoid an emotionally bumpy ride, it's good to question why so many stay on the path to fertility treatments nonetheless.
I have spent the past two years researching emotion’s impact on fertility treatment decision-making and informed consent, conducting lengthy interviews and survey research with approximately 400 in-vitro fertilization patients and 90 reproductive medicine professionals. My research has revealed that, by themselves, generalized labels such as “desperate,” “angry,” and “vulnerable” are often misleading; they can actually do a disservice to and disparage the patients.
Some infertile women do experience feelings of desperation, but common-sense understandings of what it means to be desperate range from unsophisticated to flagrantly wrong. Yet these labels not only are present in popular stereotypes of infertile women and couples, but for decades they have often been applied (without empirical evidence) by well-intentioned individuals seeking to draw attention to patients’ vulnerabilities—including experts in medicine, law, and business, religious leaders, and former patients. In reality, the lived experience of these emotions is highly complex and nuanced, and many purportedly “toxic” emotions actually play positive roles and are critical to successful coping processes. My research shows that some “negative” emotions, including desperation and anger, often deepen patients’ involvement in decision-making and cause them to deliberate carefully, rather than consigning them to paralyzed indecision or blind commitment to unrealistic goals.
First, let's assume that (as some have asserted) fertility patients are at their wits’ end, desperate and vulnerable. A desperate person presumably feels that she lacks other options and is making last-ditch efforts to accomplish an ardently desired goal. Yet, such an individual does not necessarily pursue her goals in a hell-bent fashion, throwing caution to the wind. Although 72 percent of my patient participants described themselves as desperate, they described their own sense of desperation very differently.
Admittedly, most patients observed that fertility treatments could be all-consuming, making them feel empty, incomplete, and hopeless. But they also defined their desperation as a motivating determination, one that not only spurred them to seek treatment but also to research, to select the best physician partner, to question, and to discuss. Desperate patients defined themselves as ambitious, not deluded—a key distinction that rehabilitates patients’ agency and self-determination.
Anger is another commonly misunderstood emotion. Fertility patients may be angry due to a lack of control, an absence of support or validation, or the need to suddenly cope with a tide of of information, decisions, and appointments. They may be infuriated with God, their spouses, health insurance, physicians, insensitive friends, and blithely pregnant women. They may also be annoyed or outraged at the older celebrities who suddenly conceive through mysterious means, or by inaccurate portrayals of infertility in media and popular culture, which often paint treatment as a quick and relatively uncomplicated fix that can devolve into a hilarious plot line and where fictional couples enjoy seemingly limitless resources for treatment and adoption. While “infertiles” are grateful that Hollywood has enthusiastically embraced infertility as dramatic fodder, that willingness has also spawned Baby Mama, Brooke’s saga of infertility and adoption on One Tree Hill, and Robin’s sudden discovery that she can conceive (and light-speed emotional recovery) on How I Met Your Mother. In contrast, the show Giuliana and Bill on the Style Network portrays fertility treatment more realistically, showing how patients may be angry at how the plot of treatment actually plays out—countless admonitions to “just relax,” creative fertility financing, and the surreal process whereby patients choose the fate of hypothetical embryos in the event of their untimely death or divorce.
But pursuing fertility treatment offers opportunities for patients to defuse their anger by seeking answers, accessing support, and becoming active participants in their own care—all key factors in restoring to patients the limited amount of control anyone can hope to have when undergoing intense treatment procedures. Without the option to try, and perhaps to try again with different protocols and providers, patients may find it difficult or impossible to get “closure” on their quests to conceive, and move on from ignorance and helplessness to awareness and often self-advocacy. Anger also spurs patients to action—changing providers and treatment plans, articulating treatment limits. Indeed the very act of seeking treatment can ameliorate the helplessness that seeds patients’ anger; sometimes selves are shattered by not pursuing each available alternative.
Frustration, anger, bitterness, hopelessness, and guilt certainly are an inescapable part of the treatment experience for most patients. But these emotions coexist with hopefulness, optimism, gratitude, and even apathy. We must educate ourselves about all treatment experiences and outcomes. But fertility treatment is hardly the only form of intensive medical treatment that engenders complex emotional experiences. Demographically, infertility patients tend to be different from most other patient populations; they are highly educated and financially stable. Though they are not facing a life-and-death treatment decision, they have well-documented enthusiasm for researching information, tracking results, seeking support, switching providers, and asking questions. If these active patients are so desperate and vulnerable that they cannot make educated decisions about medical treatment, what does that say about the capacity of other patient populations that have less education, fewer financial resources, and may be negotiating treatment decisions that are literally “do-or-die”? Is not every patient confronting a difficult treatment decision desperate in some sense? And if so, can any act of consent be truly informed?
Most patients in my study observed that the lived experience of desperation and anger has not mired them in helplessness but helped them to overcome it. When asked to describe their “patient personality”—how they interacted with fertility providers and procedures—75 percent described themselves as educated and 37 percent as trusting. Most told moving accounts in which they became skilled advocates for themselves over the course of several treatment cycles. Ninety-six percent of participants described themselves as assertive personalities, and 91 percent said they were assertive within fertility treatment. This intimates that infertility patients are already, or are becoming circumspect decision makers, not shrinking violets.