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CHAPTER 1

Consent and Sensibility

Emotions, Decision Making, and Informed Consent in Reproductive Medicine

Let’s not forget that the little emotions are the great captains of our lives and we obey them without realizing it.

—Vincent Van Gogh, 1889

Emotions affect everyone undergoing infertility; women experience infertility as a chronic medical condition, and have psychological symptoms equivalent to those of patients with cancer, cardiac issues, and hypertension.¹ Infertility had pronounced emotional consequences for 91% of patients interviewed and 82% of those surveyed. But emotional effects are starkly different from person to person and often unpredictable.

Sonya Saunders has lived this unpredictability. Before Sonya married her husband, James, they knew he had varicocele, a condition in which enlarged scrotal veins cause low sperm production and decreased sperm quality. But after trying to conceive for six months, they learned that James actually had a sperm count of zero—something his urologist hadn’t seen in thirty years of practice. After James underwent corrective surgery, his urologist reassured them they still had plenty of time to conceive and should wait a year before trying. But six months later, James’s sperm count still hadn’t improved. Distraught, Sonya visited an RE for her own workup, only to have her doctor tell her, “You have a genetic condition where you’ll never be able to have kids.” She was devastated for the second time in as many years: “I hyperventilated, couldn’t stop crying during that meeting, I felt like I just got hit by a freight train.” She felt helpless in the face of infertility: “How much money are we going to spend on this? How far are we going to go? What are we going to do?”

Advised to try “natural IVF”—where patients don’t take medication to stimulate their ovaries and increase egg production—Sonya and James completed four cycles over the following year. One cycle was cancelled, and three resulted in embryo transfer, but none resulted in pregnancy. These experiences took a terrible emotional toll. “By the third negative, I was having a major breakdown… . I wasn’t getting the help I needed, and I was in big trouble,” Sonya said. “It just starts to build up and you don’t realize how much it’s unraveling… . At that time, I would talk about suicide all the time.” Eventually, she found a RESOLVE support group and counselor. “Being with people that have gone through the same thing helped the most,” Sonya reflected. “I don’t think the isolation can ever be overrated.” By this time, infertility had wreaked havoc on her personal relationships. “The majority of my friends are on [their] second or third kid; you feel so far left behind,” she explained. “Nobody can grasp [infertility, so] you lose the ability to talk to your best friends about something that can be so incredibly painful… . Your external support system is just crushed … so your marriage has an incredible strain.”

The emotional dynamics in Inez Griffith’s conceptive journey were markedly different. When she was 33, Inez consulted her gynecologist for severe bleeding, only to be told she should already have had children and might need a hysterectomy. “I came home and cried about a bazillion tears and thought it was the end of the world,” she recalled. Soon after Inez began dating her husband, Chris, the two discussed starting a family. Anticipating difficulty, they visited an RE to formulate a game plan: first attempt IVF with Inez’s eggs, then move on to donor eggs, and finally try adoption. This strategy helped Inez to cope: “we wouldn’t just put ourselves into desperation trying again and again and again.” Inez determined she’d not allow infertility to dominate her: “I went to a couple of support groups… . there was this one woman who you can tell she’s been through a lot of failed cycles, and she had this angry, miserable look on her face… . I can certainly understand feeling that way, but I’m like, ‘I don’t want this to be my end result.’ That’s when my husband and I really sat down and said, ‘We’re not just gonna keep beating something and start throwing something in and just keep being disappointed.’” It took only one IVF cycle for Inez to became pregnant with her first child; she conceived her second with a frozen embryo transfer. She credited her emotional equanimity to conceiving easily: “we did luck out, and I don’t know, if we hadn’t, [we might’ve said], ‘Then let’s just keep trying; the next time it’ll work.’”

Both Sonya and Inez had to confront an infertility diagnosis, and each made the same choice—to seek fertility treatment. But this choice yielded two wildly disparate outcomes and two strikingly different narratives. Whereas Inez was all too aware she’d need medical intervention to conceive, Sonya experienced an unforeseen series of painful setbacks as each proffered remedy proved unsuccessful. And while Inez ultimately conceived twice, Sonya was still stranded in IVF hell at the time of her interview and felt victimized by bad advice and misfortune. How can infertility produce two such radically different emotional accounts?

As these two narratives illustrate, infertility is an umbrella term covering a multitude of causes, contexts, emotions, and outcomes. People speak of an infertility “journey,” a flexible metaphor implying that these sojourns can have different durations, don’t always progress in a steady or orderly fashion, and can be easy or difficult (or both, at different times). Infertility journeys aren’t only about getting from Point A to Point P(regnant), but also about the experience of traveling itself; like all journeys, this one takes people to new destinations, requires planning, and changes lives.

Emotions often spark infertility journeys, which in turn change personal identities; begin and end relationships with friends, family, and medical professionals; and trigger medical and ethical decisions. Emotions supposedly disrupt individuals’ lives and pose problems for decision-making capacity. But for better or worse, they also play key decision-making roles. Thus, emotions are like compass points that help individuals to orient themselves and find direction within the infertility experience—but unlike these points, they can change in unpredictable ways throughout this disorienting journey.

CAPACITY INCAPACITATED?

As history goes, it’s been a mere heartbeat since a radical transformation took place in medicine, from the “commonsense” assumption that doctors are logical treatment decision makers to the conviction that such choices should be left to competent patients. Patient autonomy is now the watchword for doctor-patient interactions—unless questions about patient capacity arise.

But in reproductive technology, patient autonomy is far from commonly accepted. Many voices have challenged the presumption that women generally make informed reproductive choices, from religious and political leaders to scholars and even feminists. The criticism is often phrased the same, regardless of the reproductive choice at issue, and goes something like this: “She wants desperately, blindly to ______” (get an abortion, become a mother, donate her eggs, become a surrogate, or get her tubes tied).² One scholar has claimed that patients undergoing IVF “have difficulty absorbing medical information and rationally evaluating the risks and benefits of various treatment options,” and that “the power of wishful thinking obscures rational deliberation. Infertile women will often opt for any treatment option presented, regardless of the physical, psychological, or financial price.”³

Other voices challenge whether the reproductive endocrinologists who help patients make treatment decisions can maintain professional ethics and prioritize patient care in the face of profit motives.⁴ One author, for example, asserted that “the underlying principle of fertility treatment is the right of the paying consumer to reproductive freedom,” and described ART as “relentlessly profit-making.”⁵ A high-risk pregnancy physician remarked that reproductive medicine “has become a consumption specialty,” and claimed that REs, like their patients, will “do anything”: “[t]here [are] so many of them out there, they compete among each other to see who gets the patients, so they’ll do anything to maximize the chances of achieving a pregnancy.”⁶

In most areas of practice, insurance providers or hospital associations provide a buffer between professional compensation and patient payments. An emergency room doctor doesn’t need to worry whether she’ll be paid, even if she provides care to indigent patients. The typical RE, however, does need to be concerned. The pervasive lack of insurance coverage for treatments like IVF makes most fertility processes elective, to patients’ consternation, more like cosmetic surgery than cancer care. Within reproductive medicine, independent, private providers or university clinics provide most services. These entities (and often the REs they employ) must be aware of their practices’ bottom lines, lest they find themselves out of business.⁷ Clinics’ financial health depends on their ability to attract patients who can afford their services. Given these incentives to treat as many paying patients as they can handle, critics question these clinics’ motives, citing highly publicized abuses to demonstrate that reproductive medicine professionals are untrustworthy.⁸ Patients’ vulnerabilities compound these issues, making professionals’ profit motives seem especially dangerous. Providers benefit from the freedom of choice fertility patients supposedly enjoy and also, critics allege, “from transferring practical, psychological, and moral responsibility for decision making to patients.”⁹

These critiques of patients and professionals aren’t necessarily inaccurate or inappropriate. Reproductive decisions do fundamentally alter individuals’ identities, whether they concern running a business or deciding to genetically test embryos. Reproductive decision making does engage emotions. Patients often are vulnerable. Doctors do have to balance clinic practices, profit margins, standards of care, and patient needs. But these statements are also true throughout medicine and, indeed, for many other important life decisions. What is troublesome is when media, policymakers, and scholars misrepresent decision making’s emotional consequences to suggest desperation and greed are practically universal, experienced in the same ways, with virtually the same consequences: undermining rationality, ethical values, and professional standards of care. This skepticism prompts critics to propose placing reproductive decisions in others’ hands. Politicians and experts have suggested restricting IVF for certain populations,¹⁰ limiting how many embryos can be transferred per cycle, mandating greater psychological screening for patients, or supervising reproductive medicine providers. Some regulatory oversight might be appropriate if informed by professional standards, but claims that patients undergoing fertility treatment lack normal decision-making capacity violate patient autonomy and demean their integrity. Instead, fertility care should start with the same presumptions of patients’ and providers’ decision-making capacity as other health fields, with reforms tailored to specific abuses or evolving medical practices.¹¹

Characterizations of patient and provider capacity matter because medical care takes place within a legal, rational bureaucracy. Under the rubric of informed consent, this bureaucracy provides guidelines for what doctors can do to patients and when. Usually, consent means that patients sign forms that doctors give them, sometimes after discussing them. But there are serious doubts as to whether this transaction really does inform patients and ensure their competent consent. The first part of this book questions whether consent can be informed within reproductive medicine, whether patients are capable of making good treatment decisions despite strong emotions.

A BUMPY RIDE: INFERTILITY AS DISRUPTION

When you begin planning your family, you get excited because it’s something that you’ve always wanted and the time has come to make your dreams a reality. As with anything, you begin with anticipation, you hope the outcome is successful. For example, you’ve waited to travel to Europe and the time has finally come… . You go on the trip and everything you have waited for, that you anticipated, that you dreamed, was crushed as your flight was canceled, your hotel burned down or someone hacked your bank account and you don’t have the money to go. However, you don’t give up because … it’s been a lifelong dream… . Meanwhile, all your friends have gone and traveled there and experienced great things and you’re still stuck at home.

—Sheri Lopez

Reproductive decision making takes place in a unique emotional, psychological and physiological context. One way to understand what this might be like is to imaginatively step into the shoes of an individual confronted with an infertility diagnosis, making her a “we” instead of a “she.”

For most, conceiving a child is fairly easy—perhaps too easy, if pregnancies are unwanted. If we can’t conceive, we can seek medical assistance, but at steep prices, leaving many stranded without access to fertility technology. If we’re lucky enough to access these treatments, we must submit to complicated monthly treatment routines, including anything from ovulation-stimulating medications, to timed intercourse, to IUI or IVF. This is a very stressful time; we might learn smack-dab in the middle of our IVF cycle that we have too few mature eggs or unusually low embryo fertilization rates. And at its end, we face the interminable “two-week wait” before the final pregnancy test. Even a positive pregnancy test doesn’t grant us respite from anxiety and heartbreak, since miscarriage is still possible. Infertility disrupts our lives in varying ways, depending on our personalities, relationship dynamics, coping skills, doctor-patient relationships, medical history, prior conceptive attempts, and just plain luck. We likely endure these journeys alone, or with our partners.

Infertility also forces us to negotiate difficult decisions—whether to continue treatment, what interventions to pursue, how to finance care, and sometimes how to get through the day—all while wrenching emotions may destabilize our core feelings of identity and competence. In infertility, as in many other life circumstances, we must make complex choices among numerous options with conflicting advantages and disadvantages and uncertain outcomes.¹² These decisions often require us to weigh religious and personal values, ethics, financial assets, short- and long-term goals, and partner preferences. Deciding what to do may change our sense of who we are and what we believe.

Infertility’s impact starts with diagnosis. Cultural expectations about what’s “normal” in certain life stages can structure our lives; trying and failing to meet these expectations is disruptive, especially when unanticipated.¹³ We may think we have a “normal” potential to conceive until infertility catches us unawares. Afterward, we might feel broken. Even those of us who anticipate difficulty conceiving find an infertility diagnosis unsettling, a crossroads where we must halt to determine what comes next.

Infertility first compels us to choose whether to accept a childless future—a decision that entails others, like how much we really want children, what we might give up to have them, what risks we’re willing to take, and whether our children must be genetically related. For many of us, this is the most momentous decision we’ve encountered as adults. Accepting childlessness might be a predictable and “safe” option, but may over time be the most painful. Undergoing treatment means seeking a future with children at unknown cost, a willingness to make the necessary sacrifices, and facing the real risk of not having children anyway. Which path is most attractive depends on our personalities, needs and desires, support skills and systems, and physical, emotional, and material resources.

Adjusting to and negotiating infertility, then, requires that we learn how to tell this event within our life stories.¹⁴ Telling stories about disruptive events is a healthy coping mechanism. We revise our life stories to include events we need to make sense of—to understand, redefine, resist, and ultimately own their effects on our identities, relationships, careers, and life plans. This, in turn, helps us to work through these events, solve the problems they pose, endure them, and even defy them. Emotions are undeniably important to these storytelling processes.

How disruptive infertility feels depends on how easily we’re able to include it within our life stories. Before we suspect that something might be wrong, we often use our family medical histories to create and structure our family-building expectations—sometimes to our detriment. “I never really even thought of the possibility that it wouldn’t be easy for me,” Kathryn Patton reflected. “My grandmother had seven kids… . and my mom had us very quickly and young.” Difficulty conceiving is particularly shocking for those experiencing “secondary infertility”—when a person becomes infertile after successfully having children without medical intervention. “That was something that never entered my mind,” said May Weiss. “I was that person which we all hate now.” Those who anticipate difficulty conceiving find it easier to adjust. Given her medical and family history, Shannon Ward wasn’t surprised when she couldn’t conceive: “I’d had irregular periods for my whole life; it had occurred to me that we’d have trouble getting pregnant, and we knew that [my husband]’s brother had had male factor infertility as well… . When we were trying month after month after month and not getting pregnant, … so I think, in some ways, that emotional difficulty was kind of a bit abated for us.”

Those who have supported a friend or relative through infertility may also feel more prepared. Shannon Ward took heart because her sister had conceived using donor eggs: “watching her go through it just a few years before me is where I learned a lot about IVF and also the donor egg option… . So, it was very emotional, but … I knew the end result was still possible.”

Patients’ reflections on their initial reactions to infertility diagnoses testify to its strong impact on life stories. But how exactly do emotions shape our adjustment and decision making, and with what consequences?

BACK TO THE FUTURE: EMOTION’S ROLE IN COPING AND DECISION MAKING

A popular saying advises, “When life gives you lemons, make lemonade.” But when infertility sours life plans and threatens bitter disappointment, making lemonade requires us to roll up our sleeves and engage our emotions.

After a diagnosis of infertility, we need to take stock, look ahead to what may come, and choose how to react.¹⁵ Here, as in other life situations, our emotions influence our interpretations, judgments, reasoning, and decision making. The conventional wisdom that emotion weakens our ability to make “rational” decisions is far too simplistic; emotion always affects our decisions, whether it helps or harms them. Infertility, a threatening event, can demand our attention and influence how we react, what seems relevant, how much we focus on this issue, how carefully we consider information, and whether we use stereotypes and other shortcuts to evaluate options, or opt for deeper reflection.¹⁶ Emotions also affect why we make decisions in the first place and which options seem most attractive. Making decisions about infertility generates additional emotions; time constraints or uncertain outcomes can create anxiety, and time delays can produce anger and frustration.¹⁷

Deciding what to do about infertility means working through many highly uncertain and complex choices with great personal and social stakes. We don’t make infertility-related decisions like a computer, mechanically analyzing each option’s mathematical risks and benefits, comparing their immediate and long-term consequences.¹⁸ This would be impossible; even if we can identify all possible options, we don’t know what will work or each outcome’s precise likelihood.¹⁹ This would also take too long, strand us in impossible calculations, force us to work with impossible amounts of information and chains of events,²⁰ and require us to compare incommensurable outcomes²¹—and most of us are already notoriously bad with probabilities and statistics to begin with.²²

Instead, we rely largely on our gut feelings about infertility and particular treatment options to make these kinds of decisions.²³ “Bad” gut feelings can direct our attention toward negative outcomes and serve as “alarm bells” or “red flags”; maybe we don’t want to voluntarily accept childlessness and opt for treatment or adoption. “Good” gut feelings can steer us toward positive outcomes;²⁴ if we have enough money to pursue IVF or adoption, we might opt to adopt, since its outcome is more certain. Our emotions play key roles in forming these gut feelings, and even in making them seem inherently “rational.”²⁵

Thus, when confronting infertility and making decisions, we project ourselves into the future, choosing among options from Clomid to IVF to childlessness. To do so, we weigh possible outcomes, their likelihood, and their financial, emotional, psychological, and social “costs” and benefits. Our gut reactions to each option and outcome help us determine what steps to take. Our emotions usually improve these decision-making processes, so long as they are not extreme or overwhelming.²⁶

Just because our emotions can improve decision making, however, doesn’t mean we always choose well, particularly about uncertain events—not because of emotion, but because we don’t have the right information or simply because we’re human, subject to human biases.²⁷ We might be misinformed, overestimate how intensely certain events (like childlessness or an unsuccessful cycle) will impact our lives, or assume our current wishes will apply to future situations.²⁸ We even selectively remember the emotions that past events generate, remembering only how we felt during an event’s most intense moment and at its end.²⁹ For instance, assume we experience more negative than positive emotions throughout six unsuccessful IVF cycles. But if we conceive on our seventh try and birth a healthy child, we may well remember our treatment experiences quite positively. Nor can we do much to ensure emotion influences our decision making in healthy ways; trying to suppress our emotions often intensifies them.³⁰ It might help to think of setbacks like an unsuccessful IVF cycle as just one step in a longer process of trying to conceive, or as a learning opportunity.³¹

Medical challenges like infertility and treatment decisions cause especially strong emotions, especially given medicine’s inherent risk and uncertainty.³² Strong emotions can prompt us to make a decision too early, without adequately considering other options, or too late, when treatment becomes impossible.³³ At other times, stress may motivate us to carefully research options, knowing we’ve only one opportunity to make the best possible decision. But medical decision making can also be therapeutic, too, when it provides strategies for dealing with infertility.³⁴ Even undergoing testing can reduce anxiety and stress, provide answers, and make us feel as if we’re doing something, and therefore aren’t entirely helpless.

Specific emotions also influence our behavior in particular ways. Anger can motivate us to take treatment risks,³⁵ attempt to change providers, or fight against infertility.³⁶ When we’re sad, we’re more likely to blame fate or situational circumstances, attribute infertility to divinity or destiny,³⁷ believe we’ll never conceive,³⁸ and avoid pregnant women.³⁹ Anxiety, on the other hand, makes us feel that infertility threatens our future and can motivate us to learn more.⁴⁰ We experience disappointment when our choices turn out worse than we expected,⁴¹ and we might withdraw from problematic situations or people.⁴² Fear renders us more pessimistic about the future,⁴³ makes riskier events seem more likely,⁴⁴ and prompts us to choose the “sure thing” or avoid a decision altogether.⁴⁵ When we feel guilty, we blame ourselves for bad outcomes, focus more on the decision at hand, and narrow our choices. Happiness encourages us to expect or even overestimate⁴⁶ that we’ll get pregnant,⁴⁷ and hope makes us feel a little personal control over what happens,⁴⁸ but surprise makes us feel that others are responsible for certain outcomes and that positive outcomes are unpredictable.⁴⁹ Finally, we feel regret when we realize later that another option was better.⁵⁰

Making infertility-related decisions can unleash all of these highly charged and interdependent emotions. Understanding how they influence our decisions reinforces that these emotions aren’t random, but linked to particular options and outcomes. Ideally, we’ll choose options that make us feel good and that protect cherished goals, values, and relationships. Once made, our choices become courses of action with real-world outcomes that carry their own emotional consequences.

REASONED EMOTIONS: PROVIDERS’ REACTIONS TO PATIENTS’ AFFECT

With this brief glimpse into infertility’s disruptive and emotional experience, we can step out of patients’ shoes and into providers’ to gauge their reactions to patients’ emotionality. Most providers expect patients’ emotions to affect decision making—“almost everything about having babies is emotional” (Dr. Errol Walter)—and grow concerned only when these emotions effect harm.

Patients’ desires and life goals—like having a family—are both cognitive and emotional, and it’s difficult to contemplate changing them even when odds become slim. “If they’ve thought their whole life they wanted to have three babies and they have two, they just can’t put that away. There’s somebody missing, and I think that’s an emotional type of reaction,” explained Nurse Melanie Simons. Indeed, why should reproductive medicine not be emotional, in keeping with other medical treatments? “I would actually be worried if there was no emotion at all,” opined Dr. Heike Steinmann, “that kind of person, like an automaton, … I mean, it’s not like taking out your gall bladder.” As Dr. Denzel Burke said, “It’s impossible to remove emotion from anything in medicine … [especially] when you start talking about … family and your future, the idea of you continuing on your family name or your family genetics and then all of the social expectations and family expectations of you having children.” Thus, the concern isn’t patients’ emotions, but their effects.

In providers’ experience, emotions affect patients in complex and contradictory ways, steering them toward or away from treatments. Intense feelings might motivate some to pursue more aggressive treatments early on. In these situations, patients usually feel stressed, frustrated, and think they have no other options. Patients who are “just tired of getting disappointed” (Dr. Stefanie Burgstaller) will “want to do the most aggressive treatment this afternoon” (Dr. Cary Priestley). Or they might want to be aggressive with embryo transfers: “I have a hard time convincing somebody to put in one embryo. You can show them the statistics” (Dr. Rory Fontaine). Or patients could attempt to cycle too soon after an unsuccessful attempt: “you say, ‘I’m very sorry but the pregnancy test was negative,’ and … they say, ‘Oh, what do I do next? Let’s do another cycle.’ Once they’ve thought it through, most patients become more rational” (First Year RE Fellow Dr. Yazmin Kuhn). Or they might attempt any treatment option: “If they’re tearful, emotional, willing to do anything, … if you say, ‘Well, you can do these three therapies, but there’s really no proven utility,’ they sometimes want to try them anyway, because they don’t want to have regrets” (Dr. Jie Hu). Patients are eager to dot every “i” and cross every “t.”

Conversely, emotions also deter patients from using certain medications or moving on to more advanced treatments, and may even drive them to prematurely cease treatment. Patients who undergo more cycles “have a different kind of capacity for stick-to-it-iveness and pain than maybe the one who can only do the one” (Psychologist Valerie Ness), and certain patients, “if they’re depressed and they’re tired, … can give up prematurely” (Dr. Teagan Shepherd). “I think patients just get burned out. A lot of them just get to the point where the stress is so much that they decide they just got to take a break,” Dr. Gerard Gabler explained. “Unfortunately, when they’re 38, 39 and decide to take a break, that can certainly be detrimental to their overall chances.”

But whether emotions encourage patients to prematurely begin or end treatment, they are particularly problematic when they distort perceptions of what providers are saying. “You try to encourage people to come to closure … and they often will kind of refuse to listen because in their mindset they aren’t done yet,” remarked Dr. Wes Hoffman. “It makes it hard to kind of convince them from a medical standpoint that they need to think about other things, and emotionally they aren’t ready.” This closure is a process patients must work through themselves. Significantly, competing needs and desires might diminish emotions’ influence on treatment decisions. “Every once in a while, I’ll get patients that say, ‘Well I’m not terribly [eager] to have a child. I’m doing this to make my husband happy or what not, … I don’t really want to do anything all that involved,’” explained Dr. Corwin Summers.

EMBARKING ON THE INFERTILITY EXPEDITION

Being diagnosed with infertility is like becoming stranded upon an exposed, rocky precipice at twilight with no obvious paths to safety. We can easily identify with the horror of being trapped in that new base camp as darkness falls, left to figure out the safest route down, knowing nothing of the terrain and trying to avoid injury. An unknown fate awaits at the bottom—there could be a child or no child, stronger or weaker relationships with partners and friends, bankruptcy or manageable levels of debt. Medical professionals, like Sherpas, create paths for us and provide guidance and support along the way. This descent can be terrifying, tiresome, and costly, but there also might be beauty along the way.

Jessica Frazier found herself on that precipice after her OB/GYN misdiagnosed her with blocked fallopian tubes. She had a panic attack: “I was sweating and had to sit down on the pavement and felt really dizzy and freaked out… . That initial shock was pretty intense.” Others, like Tracey West, went “through the stages of grief.” But some found it empowering to have answers. Eva Davidson said, “Once someone said, ‘You know what, you’ve gotta do IVF, … this is the only way you can get pregnant,’ I said, ‘Okay, let’s do it.’” A specific infertility diagnosis can be a turning point that means new information, treatment possibilities, and hope. To Brittany Watson, her diagnosis was “the light at the end of the tunnel”: “When it all finally clicked what was wrong, it was this emotional, cathartic experience. I think I cried a good bit.”

Living through infertility—descending from the precipice base camp—can seem like a long journey comprised of smaller stages, like monthly attempts to conceive. If infertility is analogous to being trapped on this rocky outcrop, we can call the overarching process of adjusting to and negotiating infertility an “Expedition” and the descent’s shorter segments “Attempts.” Ideally, each Attempt allows us to move our base camps farther down the slope, getting closer to Expedition goals like conceiving. Because infertility’s topography obscures the landscape, we might not know how far we’ve come until we’re almost at the bottom.⁵¹ This Expedition isn’t so much a progression as it is a continual readjustment to new terrain. This analogy captures the infertility journey’s individual legs, during which we continually adjust to outcomes and reassess next steps. If we could chart what an Attempt feels like, it might resemble a succession of peaks and valleys, displaying a “roller-coaster” pattern of emotional highs and lows. Attempts are the building blocks of our infertility experience, the moments we live in and through. In contrast, we’re most aware of the Expedition at its beginning and end, or when we pause to consider our journey thus far.

Emotional Baggage: Packing for the Infertility Expedition

Our emotions affect decision making differently in Expeditions and Attempts. Throughout our Expeditions, they help us to choose among viable options, particularly whether and how to seek treatment. In Attempts, our emotions assist us in working through our choices and their outcomes and evaluating our decisions so we can make better ones in the future. How long we stand on the precipice after receiving an infertility diagnosis varies widely. Eventually, we must choose a course of action, accepting involuntary childlessness, attempting to conceive through first-line fertility treatments like Clomid, or proceeding to more advanced treatment options like IUI and IVF. Upon stepping off the precipice, we set off on our Expedition and into our first Attempt and begin to live our choices, experience outcomes, and negotiate their emotional consequences. What are the emotional experiences of the Expedition and Attempt like?

At first, infertility-related emotions can seem indistinguishable from one another, especially when they wash over us with such frequency and strength. Time and reflection allow individuals to disentangle and deal with these emotions and identify which outcomes are most important. Emotions can race between highs and lows as individuals adjust to infertility and seek treatment. Sometimes, these tumultuous emotions are linked to treatment outcomes and change as treatment progresses. For Brittany Watson, “Every month it was just the high of ‘OK, maybe this is the month,’ and then the low of ‘No, it’s not again.’” Lauren Mack found this downright traumatic: “in the beginning … I felt more peaceful, [as if] this is going to work… . I felt a lot more in control and more hopeful. Now I feel like I have developed post-traumatic stress disorder, and every time I start, I’m ready to break myself again.” Like Lauren, most interviewed patients (71%) felt that undergoing fertility treatment gave them more control; 54% believed it was important to be proactive and have a plan.

It is here that the emotional distinctions between Expeditions and Attempts become more apparent. In the Expedition, sadness and other “negative” emotions largely define patients’ overall infertility experience. But in Attempts, positive emotions supplant negative ones, at least until a negative pregnancy test. Thus, in many ways, the Attempt is the emotional inverse of the Expedition. Anticipating a potentially happy cycle outcome, individuals feel excitement, hope, and happiness, even if these emotions jostle against confusion, nervousness, and sadness. (See Figures 1–4.)

FIGURE 1. Expedition Emotions: Qualitative Interviews (by % of participants indicating each emotion). Source: Jody Lyneé Madeira

FIGURE 2. Expedition Emotions: Quantitative Surveys (by % of participants indicating each emotion). Source: Jody Lyneé Madeira

FIGURE 3. How Men Feel across an IVF Cycle, Qualitative Interviews (by % of participants indicating each emotion during each cycle component). Source: Jody Lyneé Madeira. Note: Emotions indicated by fewer than 5% of participants during each cycle component are not reported.

FIGURE 4. How Women Feel across an IVF Cycle, Qualitative Interviews (by % of participants indicating each emotion during each cycle component). Source: Jody Lyneé Madeira. Note: Emotions indicated by fewer than 5% of participants during each cycle component are not reported.

Moreover, in treatment, patients’ emotions are linked to specific IVF cycle phases. Individuals undergoing IVF for the first time generally feel most daunted in the beginning. “I think some patients get overwhelmed by the process; [they say] ‘I don’t know if I can take my shots, … I don’t know if I can be sedated,’” Nurse Gabi Simpson explained.

This roller-coaster pattern is evident in Figures 3 and 4, which aggregate hundreds of patient responses. Patients experience “positive” emotions most strongly from egg retrieval to embryo transfer, peaking at that point. Men are more nervous than women at this time, but they tend to become more hopeful following embryo transfer, whereas women remain nervous throughout the cycle, even after a positive pregnancy test. For both, excitement peaks following embryo transfer, during the agonizing time known as the “two-week wait.” Predictably, both men and women are saddest following a negative pregnancy test. Surprisingly, women’s anger and frustration generally remain low until a negative pregnancy test, belying the stereotypically wrathful and bitter infertile woman. Thus, the Attempt more accurately captures this emotional “roller-coaster” than the Expedition, although both layers are necessary to fully illustrate infertility’s emotional complexity.

Sinking Feelings: From Diagnosis to Descent

Standing on infertility’s precipice, most individuals feel many more negative than positive emotions and often experience emotions in “clusters”—from most to least common, they are sorrow, jealousy, inadequacy, and surprise. The sorrow cluster (which 71 individuals, subsequently represented as “n,” reported) is comprised of depression (n = 27), sadness (n = 20), devastation (n = 10), disappointment (n = 8), and grief (n = 6). Jealousy (n = 47) encompasses pain from seeing pregnant women (n = 27), envy (n = 16), and unfairness (n = 4). Inadequacy (n = 39) includes feelings of insufficiency (n = 15), failure (n = 8), self-doubt (n = 7), abnormality (n = 5), and bodily dislike (n = 4). Finally, surprise (n = 24) consists of shock (n = 14) and the sense that infertility has hijacked life plans (n = 10). Other emotions like frustration, anger, guilt, and determination also play significant roles. Figures 1 and 2 depict the emotional experiences of both interview and survey participants; these charts list different emotions because survey participants selected all applicable options from a lengthy list, while interview participants described emotions in their own words.

1. Sorrow

a. Experiencing Sorrow on the Precipice. Most individuals are sorrowful following an infertility diagnosis. Grappling with infertility’s consequences brings sadness, an umbrella concept often encompassing frustration, anger, jealousy, introspection, and anxiety. As Maria Craig described, it was “not like a clinical depression, but maybe a little bit sad or depressed. Like, why me?” Women frequently describe this reaction as grief over the delay or potential demise of their hopes, life intentions, parenting identities, and, often, pregnancies. Tracey West recounted, “Right after we got the actual diagnosis, … you kind of go through the stages of grief. And because the cause was male infertility, I think my husband took it a little bit harder.” Sylvia Nelson’s sorrow was quite intense: “I have no control over what happens… . I’m one of five kids, my husband’s one of four kids; we’d always thought we’d have a large family. I think just the fact that that might not happen is really devastating.” These are mourning reactions; patients are keenly aware of what they might lose.

Sorrow also affects romantic relationships. Sometimes both partners experience depression, either as a mental state or clinical diagnosis. As April Gonzalez explained, “I became very anxious and, at times, depressed. Started going to therapy myself… . We kind of isolated ourselves from some of our friends … feeling like we didn’t really fit in.” For Lily Ellis, depression caused “a lot of tension” with her husband, while Ashley Carpenter’s husband worked to alleviate his wife’s depression: “it was tough to … keep both of us focused and more upbeat about it.” Coping with infertility is especially difficult if one’s partner is also in need of support.

b. Experiencing Sorrow during the Expedition. Sorrow’s root causes persist in Attempts, only now the most sorrowful experience isn’t diagnosis, but failed treatment cycles or miscarriages. If a positive pregnancy test proves elusive cycle after cycle, disappointment is all but inevitable. As Darla Clarke asserted, “I supposedly have these follicles, I get all these shots and do all this stuff, and I don’t get pregnant, and then it wears into, ‘OMG we’re spending all this money with no return.’” Individuals had to manage their own disappointment alongside their partners’. Even friends can trigger sorrow; Shelley Lawrence felt let down by “how people in my life responded” to infertility. These feelings often overlap with isolation.

Sorrow compounds over time, as sadness from an infertility diagnosis acquires layers of grief from unsuccessful treatment attempts. For Rochelle Rowe, infertility was “the most devastating thing that’s happened to me, including my mother having cancer and everything else. It’s definitely changed my world view.” Deep sorrow reflects individuals’ profound commitment and efforts to conceive. Lauren Mack observed, “[A]ccording to my insurance, I have four IVF cycles for a lifetime… . all my girlfriends who have infinite chances the rest of their lives, I have four, and when one fails it’s just devastating… . You work so hard, and you’ve put so much effort and hope into something.” Here, even though Lauren had insurance, jealousy still crept in, deepening this emotional pain.

Depression can be both a synonym for sadness and an actual clinical diagnosis. For many, depression is a mental state; Nicole Bell said she’d “slip into” depression, and Brittany Watson described how infertility “spiraled me into a bit of depression.” Depression can be debilitating, particularly in combination with other emotions and events. For David Reid, “there have been times I’ve been so angry I can’t see straight, so depressed I can’t barely lift a pen, … our first IVF cycle was around Christmas, … we got a positive result, and I kept singing in my head ‘All I Want for Christmas Is You.’ And then came New Year’s, and we had a bad beta/HCG, and we had everything fall apart.”

Infertility experiences might also aggravate clinical depression; as Marisa Sims related, “I’ve had problems with depression most of my adult life, and I think the infertility certainly exacerbated that.” Patients in this situation might not be as surprised at infertility’s effects and may have preexisting resources to cope with them in healthier ways.

2. Jealousy

a. Experiencing Jealousy on the Precipice. After receiving an infertility diagnosis, women and men most commonly experience jealousy from seeing others conceive without apparent effort. Their worlds seem suddenly overpopulated with pregnant women and unwanted pregnancies, engendering envy, feelings of unfairness, and pain. Tanya Rivera explained, “[F]or a year at least while I found out I was infertile and then had to wait [for insurance coverage], I was possibly more resentful to women that it came easier to and especially for those that didn’t appreciate it.”

Comparing one’s self to others who conceive easily makes personal failure seem more pronounced. It is particularly difficult when friends and family become pregnant—particularly in less than ideal circumstances. Patricia Burns recalled, “[M]y brother and sister get pregnant every other second… . It was horrible. And you don’t want to make them feel bad, but I also don’t want to hear from them they’re pregnant, because nobody wants to hear … your sister cry… . I got to the point where actually I was having panic attacks, and had to actually go on medication.” Because of jealousy, individuals might feel like Dana Gibbs: “a heartbeat away from being bitter.”

b. Experiencing Jealousy During the Expedition. After individuals begin treatment, feelings of jealousy can intensify as physical, emotional, and financial resources dwindle. Lola Lewis acknowledged growing envy of “all those people [who] don’t have all those problems and get to have kids and a typical life.”

The pain of encountering pregnant women and children prompts many to socially withdraw: “I just isolated myself, because I either didn’t want people to know what we were going through, or those that did know didn’t understand” (Brittany Watson). Kay Elliott emphasized, “[E]ven if you’re at home, it’s always on your mind. You don’t want to see that physical reminder that’s outside.” Thus, even one’s home isn’t a place of peace.

Socially withdrawn individuals often become lonely. Isolation presents a profound problem for many; 49% of interviewed individuals noted that others could not understand what they were going through, 46% found it hard to see others building their families, and 31% reported troubled relationships with former friends. Though 20% observed they felt alone and didn’t know others experiencing infertility, 26% formed new friendships. “I had a lot of depression, anxiety, and feeling very alone until I got to a support group to find out that other people were feeling that way,” recalled Danielle Green.

But it is impossible to stay inside all the time; workplaces and daily routines inevitably bring individuals into contact with painful reminders of what they lack. Joyce Harrington found it particularly difficult “seeing co-workers’ pictures of their kids and hearing about relatives who had a baby or things like that. Just seeing someone with a child in a supermarket can cause anxiety.” Diane Barrett described these encounters as “daggering your heart,” noting it was “torture even stepping out of my house, practically… . it just destroyed me until I got pregnant.” Men also experience jealousy; Clay Padilla confessed, “[Y]ou just don’t feel like you can measure up there, in that department.”

At these moments, jealousy also provokes the feeling that life is unjust: “this one thing that’s supposed to be natural doesn’t come to you, and it seems very unfair” (Lana Houghton). Unfairness captures the maddening abyss between the childbearing “haves” and “have-nots”; as Phoebe Paul put it, “Why can everyone else get pregnant and not me? … I just was wondering why we had to go through these trials and tribulations and a lot of people don’t have to.” These words echo with loneliness, underscoring the need to befriend others enduring similar struggles.

3. Inadequacy

a. Experiencing Inadequacy on the Precipice. During the Expedition, many individuals (18% interviews) feel physically inadequate, perhaps even “broken.” An infertility diagnosis often makes women and men believe they are less feminine or masculine. Christine Zimmerman noted, “I do feel less of a human … incomplete, like I’m not even a real girl.” Marie Boyd told her husband “that he was still within the lemon law to exchange me for a wife that actually worked.” Infertility may produce a physiological breach not only with friends, family, and even complete strangers, but also with one’s ancestors: “you can’t do a simple function that women’s bodies have been able to do for gazillions of years” (Amber Butler). Men facing male factor infertility also experience inadequacy; as Nathaniel Sims related, “I felt like … I kind of let her down and didn’t feel like as much of a man after.”

Feelings of inadequacy accompany self-doubt; infertility “shakes your self-esteem” (Jeannie Lindsey). Victoria Santos wondered “a lot of emotional things … are you sexy, or … does he not want kids, does he not want to be married anymore.” Cynthia Gardner’s infertility “made me doubt my body, and … some of the choices, because I started to believe that maybe it was because I’d waited too long.” Inadequacy, then, ushers in many new fears.

b. Experiencing Inadequacy During the Expedition. Once treatment begins, protocols can reinforce feelings of abnormality and brokenness. Victoria Santos explained, “There’s a degree of separateness knowing that you had to conceive a child in separate rooms, and that you really didn’t do this together. It’s not normal. Or what you concede is normal.” During IVF cycles, individuals have to monitor life choices in ways others don’t, from everyday decisions about diet, exercise, and stress management to more consequential ones regarding vacations: “It’s irrational [that] they say, ‘If you do all these things, you’ll get pregnant,’ but then people who drink and smoke get pregnant on a whim” (Darla Clarke). Unfairness is always close at hand.

Self-doubt can easily intensify after an unsuccessful treatment cycle. Lena Coleman encountered “Inadequacy. Failure. As if God has decided for me that that’s not the path I get to take, being a mother. I felt like … a burden on my husband for having to bring him through this with me as well.” Many are frustrated because this helplessness is altogether new. “Both of us have never failed at anything in our life and so this is kind of the first thing,” Anne Kelley noted. “[I]t’s not something you can work harder and succeed at… . it’s either going to happen or it’s not going to happen.” It’s especially painful when individuals regard infertility as a personal failure.

At times, feelings of inadequacy can bleed into anger, frustration, and anxiety. Women and men refer to IVF as an anxiety-inducing process of “learn[ing] to be afraid” (May Weiss). “You always want some sort of outcome, whether it’s follicle growth, or this or that, or estrogen building up,” Juanita Poole explained. “[It made] me completely anxious, in a way far more than I ever was before.” June Barber had “a high level of stress” because “you couldn’t really plan things in life, just because you didn’t know if you get pregnant or if you’d be in treatment.” This fear and anxiety in turn heighten stress, which most patients internalize and a few vent on others, including partners and clinic staff.

4. Other Emotions—Surprise, Frustration, Anger, Guilt, Determination

a. Experiencing Other Emotions on the Precipice. The “surprise” emotional cluster encompasses both the shock of an infertility diagnosis and its unforeseen disruptions. Very few individuals make room for infertility in their life plans, and those who can’t easily conceive must face (perhaps for the first time) their lack of control: “I think that was … the biggest wake-up call. I can’t control when this happens, which was very hard for me because I’m one of those planner type[s] of people” (Kathryn Patton). This sense of helplessness was “really devastating” for Sylvia Nelson, especially given that “it’s kind of like a basic part of my life.” Women and men are often surprised at infertility’s emotional currents, including frustration (n = 23), anger (n = 16), loneliness (n = 15), nervousness or fear or anxiety (n = 12), stress (n = 11), guilt (n = 9), hope (n = 6) and hopelessness (n = 6), lack of control (n = 6), determination (n = 5), pressure (n = 5), being upset (n = 4), and trauma (n = 2).

Stranded upon the precipice, individuals become frustrated, particularly at delays in seeing providers, obtaining testing, or managing others’ judgmental reactions to their diagnosis or choices. “The infertility heightens the frustration, heightens the aggravation, because we were married 11 years before we got pregnant … and we never intended to wait for that long,” Marisa Sims said. Monica Hansen was fed up with friends’ reactions to her choice to undergo fertility treatment: “[T]hey’d say things to me that were bothersome to me like, ‘Well, why don’t you just adopt?’” Even waiting to begin treatment was frustrating: “When you’re in a cycle, you’re hopeful. When you’re after one and in between, you can’t start the next one, there’s this lag time that really feels tough” (Nicole Bell).

Several are angry at themselves for being on the precipice in the first place: “Being male factor was difficult for [my husband] to accept, so he was very angry” (Brittany Watson). Anger and frustration bring self-blame and guilt; Luis Torres described a “whole battle with insecurities and frustration, which would then circle back around and put more pressure on me, and I would feel guilty about it.” Shelley Lawrence felt she was “standing in the way,” and Francis Foster felt “that I kind of let [my wife] down.” Men even blame themselves for being unable to perform sexually under the pressure of trying to conceive. Some can’t help but be angry at their partners; May Weiss admitted, “I feel guilty to even say this, but I was mad at my husband [who had male factor infertility].”

b. Experiencing Other Emotions During the Expedition. An infertility diagnosis’s emotional impact may startle many. Rodney Hodges recalled, “I didn’t expect things to be this difficult … emotionally on both my wife and myself in different ways.” But other emotions can increase individuals’ resolve to forge ahead and meet infertility’s challenges head on. “I knew I had to keep going, and through it all, there was that determination,” remarked Nicole Bell. “[A]s long as I had a plan of action, as long as I was doing something, I felt good. I felt proactive.” Yet, this determination can become compulsive: “[I]t becomes kind of like this obsession and it almost becomes like a goal to reach” (Anne Kelley).

Thus, infertility’s emotional experience changes from diagnosis through treatment. Its effects are pervasive, influencing how readily individuals cope, what course of action they choose, and how they react to outcomes. Emotions’ onset, intensity, and duration all determine whether they help or harm individuals—or both, at varying points in time. Most important, however, these emotions have very real physical and social effects: drawing couples and friends together or driving them apart, prompting individuals to seek new social connections or isolation, immediately seeking fertility treatment or considering other options, and continuing to pursue certain interventions or cutting losses and ceasing treatments.

AT EXPEDITION’S END: THE INFERTILITY EXPEDITION’S LONG-TERM EFFECTS

Individuals with lengthy infertility Expeditions that last through several treatment cycles occasionally assess where they are and what has changed thus far. They consider how infertility has affected their daily routines, personalities, values, romantic relationships, and friendships, noting personality changes, redefined life priorities, religious doubts, introspection, and vulnerability. Friendships are lost and won; couples’ relationships are strained and strengthened; new sources of support are identified and tapped.

An infertility Expedition rapaciously devours individuals’ emotional, physical, and financial resources. It takes over life routines. Sylvia Nelson explained, “[I]t’s also really all-consuming… . between pregnancy and miscarrying and having surgeries and fertility treatment, it’s very hard not to think about it every day. And there are times when I’m at the doctor more than half the month … at least once a day.” It proves physically exhausting. Kay Elliot observed, “We’re no longer active. We don’t go out. We used to go out all the time. And [it] just rarely happens now… . you’re always tired.” It prompts deep introspection. Sheri Lopez recalled, “[I]t just caused us to question everything that we’d thought or known.”

Moreover, infertility shakes up spirituality and challenges religious convictions. Doreen Fernandez said, “We’re both pretty religious; my husband is actually a pastor. We had a lot of anger towards God for a while.” Often, individuals wonder if infertility is a spiritual message. Kendra Figueroa was perplexed: “I guess it’s just wondering if maybe God is really saying you don’t need to have children or just like am I supposed to have children.” Other times, faith provides support, as Madeline Lowe found: “Our faith helped a lot… . God kept telling me, ‘Hey, you’re supposed to conceive,’ so we kept trying.” Infertility expectations thus prompt introspection as well.

Individuals often realize they have undergone temporary or permanent personality changes from their Expedition, which they often attribute to medications that “change your whole demeanor” (Juanita Poole) or the length of time they’ve dealt with infertility: “You’re so pumped with hormones; almost every emotion that you’re feeling is pretty much a false one, probably, or magnified” (Stella Madison). Infertility’s emotional roller-coaster often produces turbulent moods: “I was short-tempered, I would fly off the handle, I was very sensitive to other people’s pregnancies, I would get really upset… . It was just like manic-depressive” (Bridget James). And personality changes can be more long-lasting; Jenna Moreno felt as if she “kind of checked out for a while. I got to a point where I really wasn’t happy. I wasn’t smiling. I wasn’t myself. And I almost felt like a sort of shell of who I actually am.”

There is often no going back to who one was beforehand—a bittersweet discovery. “I definitely feel stronger with what I’ve gone through, but … I feel like part of me, like an innocence will never come back” (Sasha Goodman). “In the long term, . it’s left me a little more bitter,” reflected Delores Weber, “and a little more patient and understanding of other people’s issues.” But infertility forced Adam Woods to mature: “Miscarriage was a very adult experience, and I’ve found I don’t feel like a kid anymore, in pretty much anything, and that wasn’t true before we started this.” Individuals complete their descents from the precipice as changed individuals, arriving at different destinations than they had originally mapped.

Unfortunately, it’s at this time of instability and doubt, when support is most needed, that infertility can jeopardize relationships with friends and family members. It’s painful to keep others apprised of the latest treatment developments, and so silence seems safer: “Every time it didn’t work, I didn’t want to have to call my mom… . So the less people that knew, the less people are going to be asking me questions” (Antonia Hughes). Marital and romantic relations take the brunt of infertility-related stress. “It weighed heavily on our relationships,” Brittany Watson noted. “I know a lot of people have said that it only made them stronger but for us it was really trying.” Adam Woods explained, “[W]e’d fight all the time, some nights we’d cry, we’d feel very alienated, and of course you can’t hide from this.” Changes in a partner’s personality exacerbated marital strain: “I wasn’t being my normal self; we didn’t enjoy the time we had together the way that we should” (Jenna Moreno).

Intimate relations are also strained, most often from having sex to conceive rather than for pleasure—“baby dancing,” in infertility forum lingo. Kay Elliot said, “It’s no longer about ‘We want to have sex,’ it’s ‘Is it time to have sex?’” Sex is no longer sexy: “[not] a natural thing between man and wife [but a] biological experiment or something. Just a process” (Tyrone Crider). Futile conceptive attempts lead to performance issues, particularly for men: “[T]here came a point where he couldn’t even get aroused, ’cause he just knew that there was nothing that he could do” (Victoria Santos). And if men can’t perform sexually, their partners may feel unattractive or even unloved. As Logan Hunt recalled, “[W]e were butting heads because she was putting pressure on, like, ‘We need to [have sex] tonight at 11:00 p.m.’ She had it all mapped out and timed out, and it actually ended up causing my inability to even … ejaculate. And I never had that problem… . Psychologically I was locking up. And therefore she was starting to say, ‘It must be me; you don’t like me.’” Eventually, one or the other partner might throw in the towel: “[My wife] became depressed and distant, and didn’t want to be sexually active anymore and just wanted to mope around” (Francis Foster). One or both partners’ refusal to “baby dance” might mean leaving the reproductive dance floor altogether.

Moreover, conflict ensues when partners want to pursue different treatment plans. As Sean Gray recalled, “[M]y wife wanted to immediately go the in vitro route, and I didn’t want to do that… . being Catholic … that was my challenge, and so I at first was reluctant to do it, which of course made her very angry.” Sometimes one partner wants children more than the other. “It’s been extremely trying on our marriage,” related Patrick Shields. “[S]he feels very strongly identity-wise as far as being a mother, being pregnant, having children, … I don’t identify quite the same way… . I can be happy in life without kids.” Finally, husbands find it painful to watch their wives endure treatment procedures. “It really had a significant impact on my husband’s emotional state as well,” Jenna Moreno observed. “[H]e tried as much as he could to understand what I was going through, but because it wasn’t his body, he couldn’t.” In short, running the infertility gauntlet leaves couples exhausted: “This whole thing has really pushed our marriage to a breaking point. We’re very lucky that we’re good at communicating, but it’s been really rough” (Kelley Bates). Relationships, like individuals, emerge from the Expedition changed.

Marriages can also be wellsprings of support. Most often, infertility simultaneously stresses and bolsters romantic relations: “It’s very straining on a relationship … ; in another way you’re forced to find strength in each other” (April Baldwin). Men often become emotional anchors for their wives and try to “to be strong for my partner” (Christopher Franklin). As Aaron Schneider explained, “[O]ne of us has to be the level-headed person… . I couldn’t just sit there, and [lie] on the pillow and cry with her all the time about it because it wasn’t going to be helping either one of us, so I had to be … the strong shoulder, … [reassuring her] it’s going to get better, things are going to happen… . it was taking a toll on her; it was taking a toll on me.”

And as old relationships sour, individuals often find solace with new friends who have undergone similar experiences. Danielle Greene recalled, “I had a lot of depression, anxiety, and feeling very alone until I got to a support group to find out that other people were feeling that way.” These new friends model new ways of negotiating infertility and exchange advice on coping strategies. “I was in the support group with other women that were going through infertility as well that probably showed a lot more emotion and had a lot more difficulty,” said Maggie Copeland. “I would say it wasn’t as bad for me.”

Thus, old relationships and routines are stretched and sometimes broken under infertility-related stresses and schedules, and new patterns and partnerships emerge, for better or for worse. However an individual’s Infertility Expedition unravels, it always leaves its mark. If individuals’ remarks communicate nothing else, they convey that infertility is an arduous experience—but perhaps not always an intolerable one. Those diagnosed with infertility choose next steps while mired in an emotional swamp, but the vast majority somehow manage to find their way to solid ground.

CONCLUSION: “ARE WE THERE YET?”

Patients’ and providers’ comments reveal two separate layers of emotional experience: Expeditions, or long-term adaptive periods lasting from suspected infertility to either successful conception or treatment cessation, and Attempts, shorter segments when individuals try to conceive. This model illustrates how emotions change both over monthly cycles and throughout the course of an infertility career, documenting the stages of descent from the precipice and revealing otherwise hidden positive emotions. Emotions play fundamental roles in treatment decisions and personal relationships, spurring their growth, death, and change. Eventually, for individuals who seek fertility treatment, these relationships grow to encompass doctors, nurses, and clinic staff, and they set in motion family-building efforts that trigger the informed consent project.

As of yet, however, we haven’t heard much about desperation, the emotion popularly thought to be most problematic. In reproductive contexts, desperation is a politicized cluster of other emotions—sorrow, preoccupation, restlessness, heedlessness, intense motivation to act, and so on—that critics strategically use in ways that fuel infertility-related stereotypes of individuals who can’t make good choices. These stereotypes exert real influence over individuals’ infertility experiences. But are they accurate?