And those who do experience desperation can create strategies to mitigate it: treatment limits like not using donor gametes, or caps on numbers of cycles or dollars spent. As Jackie Carson remarked, “I don’t think I was desperate to conceive. I was very driven to conceive, I had a lot of ambition to get pregnant… . I wasn’t going to steal a baby or anything.” Several reproductive professionals affirmed that most couples choose the most appropriate treatment rather than the most aggressive: “I think patients are very accepting in our practice of the results of their testing and that guidance from their physician… . In almost every case, we’re starting with the least invasive treatment, the least costly treatment that’s appropriate for the patient” (Head Nurse Melina Draper).
Like other emotions, desperation can make patients vulnerable and thus potentially easy marks for unscrupulous providers.17 But patients, too, have responsibilities, like making reasonable efforts “to seek technically competent help [from] … a physician and to cooperate with him.”18 So-called “desperate” behaviors like researching infertility, investigating infertility clinics, and strictly complying with treatment protocols are how most patients attempt to fulfill their end of this bargain.
As a political label, desperation includes certain emotions and mental states that allegedly heighten coercion and warp decision making. If an individual who intensely desires a child chooses IVF, the presumption is that her choice is hastily made or ill-considered. But what choice an individual makes—like whether or not to undergo IVF—often matters less than how it is made. Choices based on critical reflection more likely reflect patients’ actual interests and desires, while “desperate” circumstances, like “fear, low expectations, and unjust background conditions,” can deform decision making.19 But it’s important to distinguish between choices that are coerced and those that are merely constrained. Conceiving a child through IVF is a “Plan B”—what couples decide to do if their “Plan A” doesn’t work.20
Righting wrongs (and reconstructing individuals’ autonomy) requires us to reject the idea that desperation is only a response to a “bad” or “wrong” situation. Rather, devoting one’s self to making a decision and scrutinizing all options can be an inevitable and healthy response to tough choices, a sign that someone is circumspectly and competently identifying and evaluating all options to a sticky problem. Here, desperation is the by-product of empathy and awareness of how infertility, like other troubling issues, affects one’s self and others, and of how a decision is difficult and implicates many cultural stereotypes. Perhaps, then, we should be more concerned by desperation’s absence than its presence.
According to patients’ reflections, desperation rarely paralyzes them. It might take over their lives, frustrate them, prompt them to rethink life goals or treatment limits, or make them ever more determined to find a successful treatment. But even in the face of severely constrained options, individuals most often treat these points as decisions that require engagement, not moments to act carelessly. Rather than signaling imperiled decision-making capacity, then, desperation often summons agency or autonomy. A woman choosing whether to undergo IVF is likely aware of and weighing important considerations; she recognizes the factors at play and the decision’s complexity. In the most troubling situations, she makes no choice; it’s most worrisome when patients can’t decide what to do or don’t review an informed decision to undergo IVF before starting another cycle. Desperation becomes most problematic not when a woman doesn’t understand its root causes, but when she’s frozen in indecisive contemplation or action. But indecision and “decision by default” happen to almost everyone in other life circumstances. Patients’ experiences with desperation illustrate how this emotion both advances and hinders their infertility journeys.
DESPERATE MEASURES, MEASURING DESPERATION: HOW PATIENTS EXPERIENCE AND DEFINE DESPERATION
Desperation has predictable causes and contours, depending on when and how strongly individuals experience it. Such feelings often follow memorable events like diagnoses or unsuccessful cycles that entail new decisions, raise different options, and trigger tumultuous emotions.
When individuals feel desperate after being diagnosed with infertility, it often comes as a shock, feeling overwhelmed, or a willingness to consider all options—and as a driving force to seek medical assistance.21 “It wasn’t really that strong until we found out we couldn’t [conceive]… . That’s when it was kind of like, ‘Okay, I’ll try anything now,’” Tracey West reflected. Kelley Bates would never forget “that first conversation where IVF was on the table”: “I didn’t realize it was going to be that serious of a talk… . It was a ‘come to Jesus’ meeting; it was like, ‘Holy shit.’” Clay Padilla’s male factor infertility diagnosis made it “hard to even know or to think what the expectations were. I think we were very demoralized initially.” One particular diagnosis—unexplained infertility—only made individuals like Nicole Bell more desperate: “If someone said, ‘This is what’s wrong with you,’ I might be able to accept something. But unexplained [infertility], it threw me over the edge… . I couldn’t wrap my brain around there being no answer really. That was hard.”
Desperation acquires different dimensions as patients pursue treatment, time wears on, and pregnancy remains elusive. Here, desperation is the product of treatment.22 Francis Foster felt desperate after learning reproductive medicine is as much an art as a science: “By the way that the medical community talked, and the boards talked it up, and the doctor talked it up, it’s almost a sure thing, and then you come to find out that that’s the furthest thing from the truth… . You think modern medicine is more than it actually is… . This is the best thing that medical science has to offer… . And then we did [IVF] twice… . So how can this keep failing? It’s so god-awful expensive, how can it not work?”
Cecelia McBride and Philip Barnett each grew desperate after three unsuccessful IVF cycles, and Nicole Bell reached that point after “four or five IVFs.” After her first and fourth IVF cycles, Nicole asked herself, “how many more times can you do this to yourself? One more, one more, one more. When do I stop? I don’t know.” Women in their late thirties are especially likely to feel desperate, largely “based on my age and time passing by” (Josephine Palmer). Desperation also accompanies pregnancy loss. Dora Adkins felt desperate during a frozen embryo transfer after losing a twin in a previous pregnancy: “I may have felt a little more desperate just because I was very much wanting to get back the sibling that we lost.”
Whether patients already have children also affects desperation; those patients with secondary infertility might still feel desperate, but their experiences are qualitatively different. “We have kids, and so … the necessity for us to actually get pregnant wasn’t desperation I guess because we always had a fallback,” Nick Hall recalled, “but there was some desperation because of our age, and we already had the kids and we didn’t want to space them too far apart. We did kind of rush through the infertility.” Similarly, Antonia Hughes reflected, “I have an older son, so in some ways it wasn’t as big [a] deal to me”; after she remarried, “she “felt more pressure to give him his own child than … a desire to want one myself.”
When individuals acknowledge feeling “desperate” after several unsuccessful treatment cycles, they’re usually using this term as a synonym for an intense emotional barrage. This type of desperation has several different components—the feeling that infertility consumes their lives, a determination to conceive that occasionally becomes preoccupation, feeling that there aren’t other