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