Jackie doesn’t just reject the desperate label; she transforms it, reframing such activities as agency, not weakness. This suggests that intense emotions do not necessarily translate into deficient decision making. And far from viewing themselves as passive or paralyzed, individuals overwhelmingly (83% interview, 91% survey) described themselves as assertive while obtaining fertility treatment.
A deeper exploration of “desperation” illustrates why and how emotions are central to informed reproductive decision making.5 Instead of paternalistically labeling patients, we must comprehensively understand their experience of desperation and identify what factors trigger its rarest and most harmful forms to improve treatment experiences for all patients. Many individuals consider themselves desperate and even describe this emotion in stereotypical ways—but very few report that it interferes with decision making. As they describe it, desperation is usually an internal drive, invisible to others. This explains why providers believe that only a handful of patients—5 or 10%—are desperate; they simply don’t see desperate patient behavior very often. Moreover, as in other medical fields, if desperation becomes problematic, it offers opportunities for doctors and nurses to help guide patients, providing information and counsel—one way in which patients and reproductive medicine professionals collaborate in conception. Thus, the desperation label paints with too broad a brush. Even if this label implies that commenters have an appropriate, even thoughtful concern for women’s welfare, it ultimately undermines the very autonomy it supposedly protects, since concerns over capacity actually apply to very few.
Understanding the term as political, we can see that each individual makes infertility-related decisions within her own complex web of personal and societal relationships, values, and norms as well as conflicting perspectives on sex, gender, love, marriage, reproduction, childbearing, family structures, lifestyles, and health needs. For better or worse, part of the infertility experience is acknowledging the desperation label and negotiating its fallout. To recognize desperation’s political contours, set it aside, and explore the emotional truths it obscures, we must explore how patients define and experience desperation and how medical professionals think it affects treatment decision making.
Patients’ and providers’ comments illustrate how desperation is simultaneously helpful and obstructive. Intense emotions can undermine decision making, but although desperation is a conglomerate of strong feelings, it doesn’t usually interfere with these activities. Instead, patients say, it motivates them to research infertility or seek treatment (perhaps effectively becoming fertility consumers6), surfaces temporarily in extremely distressing situations like receiving negative pregnancy tests results, or doesn’t come up at all. Fertility professionals report that very few patients are desperate, and they often characterize this term as stigmatizing. Although (and perhaps because) it is often inaccurate and demeaning, both patients and fertility professionals recognize that desperation nonetheless influences their infertility experiences, intensifying infertility’s emotional burden and affecting the development of provider-patient relationships.
A LABEL OF LAST RESORT: DESPERATION AS A POLITICAL CATEGORY
Conventional definitions of desperation highlight an intense hopelessness and despair that might encourage recklessness,7 a “state of anguish accompanied by an urgent need for relief,”8 and a feeling of entrapment accompanied by powerlessness.9 All of these emphasize disruption10 that alternately motivates action and induces paralysis.11 The other health needs that create desperate patients and scenarios tend to be life-and-death experiences, like running out of standard treatments for an illness and turning to experimental ones, being on a ventilator, being extremely ill and entirely dependent on others, and awaiting “the last hope of rescue.”12
In reproductive decision making arguments, desperation is attributed to both internal and external sources. “Internal” desperation stems from an individual’s conflicted emotional state, and “external” desperation from factors in the outside world. Who is said to identify as desperate and why differ with historical and cultural factors, in line with this label’s politicization. For instance, this term has long been used by both abortion advocates and opponents. Before Roe v. Wade, abortion advocates characterized women with unwanted pregnancies as internally desperate, emphasizing “women’s vulnerability” due to external factors like abortion’s illegality and “the dangers of back-alley abortions, unsanitary conditions, and unscrupulous and unlicensed providers.”13 Now, they use desperation to describe women’s reactions to different practices that restrict access, like state regulations. Here, desperation addresses not the quality of a woman’s options but her ability to effectuate her choice. Conversely, groups such as Feminists for Life, Life Resources Network, and others initiated a “Women Deserve Better” campaign, arguing that women would be better served if external abortion alternatives like adoption or social supports like maternity coverage, flex time, and quality child care were easier to access.14 A more widespread opposition trend is to assert the “women-protective”15 claim that women are internally desperate and thus uninformed, undecided, and untrustworthy, eviscerating their decision-making autonomy.16
Abortion opponents’ arguments closely resemble the (often dubious) claim that women negotiating infertility are likely to make bad treatment decisions. But real external factors limiting treatment access, like weak institutional support for fertility services, do affect patients’ emotional states, along with pressure from partners, peers, and family members, employer inflexibility, financial obstacles, and other difficulties. Each barrier to autonomous and independent decision making requires a different solution. For external desperation, effectuating autonomy means removing obstacles to aid women in implementing their decisions; for internal desperation, it means improving their capacity for autonomous choice. Regulations mandating infertility insurance coverage effectively remove financial obstacles, allowing some men and women to access fertility treatment; other processes like informed consent can educate patients and reassure providers, improving decision-making ability.
Notwithstanding its negative connotation, the term “desperation” resonates with many experiencing infertility—but usually not in conventional ways. It’s immediately apparent in Figure 5 that high percentages of individuals considered themselves desperate, viewed infertility as a “crisis,” would “do anything” to conceive, and believed that infertility “incapacitated” them at some point. But these statistics represent the tip of the iceberg; the truly interesting explanations of what desperation actually means have lain invisible, under the waterline.
FIGURE 5. Patients’ Perceptions of Their “Desperation” (by surveys [S] and interviews [I]). Source: Jody Lyneé Madeira
Individuals experiencing infertility must grapple with desperation as a political or cultural tool, pushing aside existing cultural stereotypes of bitter, demanding, spineless, hysterical, or bitchy women to make room for their own family-building stories. Consequentially, desperation has evolved along two contradictory paths. In one sense, the term is popularly identified with extreme and impulsive behaviors. But in the context of women’s actual experiences, desperation is less politically loaded and usually describes healthy, if harried, attempts to negotiate infertility’s diverse consequences, including fitting rigorous treatment protocols into busy schedules, pervasive life changes, shifting relationships, and loss of control. Importantly, individuals also identify this kind of desperation in many other significant and challenging life events, like job loss or career changes, seeking a loving life-partner, and non-infertility-related health conditions.
Many patients never feel desperate; they identify options, won’t “do anything” to conceive, aren’t obsessed with infertility, and adhere to treatment limits. Patients find other family-building routes should treatments fail. Kendra Figueroa intended to use donor eggs, but realized success wasn’t guaranteed: “[I thought], ‘Okay, here I’m doing what the doctor has said gives us the highest percent chance to conceive, and