Infertility can seem all-consuming when patients have to schedule all else around treatment protocols: “Everything revolves around it. And this went on for years, two or three years… . Your whole life is really at a standstill until you become pregnant” (Nicole Bell). “All-consuming” also means that infertility routines absorb all of patients’ internal resources—their attention, mental and emotional stamina, patience, and creativity. Adam Woods was intensely focused on conceiving:
I would’ve cut off my own leg. If it didn’t endanger the child’s future, I would’ve done pretty much anything short of hurting someone else. You make those deals with the universe… . . So the desperation comes from just being held in absolute check by it. You can’t think about anything else, you’d do anything to make it happen… . As a biologist, I mean, part of the definition of life is something that replicates itself. If a person can’t do that, they don’t actually satisfy the definition of a living organism. So at times I’ve felt like I’m just a walking zombie, that I don’t matter anymore.
It was certainly unhealthy when individuals’ lives revolved around their infertility.
Or desperation can be a boundless determination “to have a child no matter the cost” (Nick Hall); therefore, individuals “w[ere] willing to try anything and spend any amount necessary to do so” (Deanna Douglas). “A lot of my girlfriends were … trying to get pregnant, but a lot of them were scared off from IVF or fertility treatment,” Gillian Matthews reflected. “They don’t want it that bad. We wanted it bad. We were the type of people that would mortgage our house.” At times, individuals even seem to take pride in the strength of their determination.
Finally, several who feel desperate think they have no other options, “like you’ve nothing left to lose” (Cameron Ellis) or you’re “at the end of your wits, you’ve nobody and nothing to turn to, … it’s the end of the line” (Clay Padilla). This outlook can blind individuals to important information about treatment risks and consequences: “I think I had blinders on a lot of the times of just getting to point A to point B to baby-in-my-arms… . I’ll sign whatever I had to; I do whatever I had to” (Amber Butler). As these comments illustrate, in almost all “desperate” situations, individuals feel that infertility has backed them into a corner.
AT THE END OF YOUR TETHER: DESPERATION AND TREATMENT LIMITS
Desperation is frequently associated with reconsidering limits on fertility treatments. Fearing they might become too deeply involved, many patients stick firmly to their treatment limits, measured in use of donor gametes, numbers of cycles, embryos transferred, or dollars spent. Lena Coleman never wanted to use only one set of donor gametes: “if the babies couldn’t be all of ours, then it was going to be neither of ours biologically.” Christine Zimmerman, who already had one child, chose not to purchase a plan covering multiple IVF cycles because she “didn’t want to do it that many times.” And Nathaniel Sims and his wife stopped after their first IVF cycle: “the answer was pretty clear: four unfertilized eggs. And that was the line; that was when we stopped digging a ditch.”
Patients’ finances often impose treatment limits by default. Stella Madison told her physician up front they’d attempt only one IVF cycle because of dwindling finances and drained emotional resources: “I told the doctor, … ‘Look, outside of having only limited funds left, … I don’t have it in me too many more times to miscarry… . I need to put all my money in one betting hand here, and to me that’s one last round of IVF.’” Christopher Franklin agreed: “I was kinda like ‘Well, I’ll do $30K, and that’s it. Or I’ll do $15K a year, but once that’s out, we’ll wait till next year.’”
Most patients who keep to their limits are wary of becoming desperate. On the cusp of starting her first IVF cycle, Allison Perkins was determined not to let treatment control her life and financial priorities: “I don’t want us to get to a place that every year we save up enough money to do a fresh IVF cycle the next year, and that it’s just this never-ending cycle.” Racquel Kennedy took a six-month hiatus from IVF to become more grounded: “it’s kind of taken over our lives at some point. We were determined not to let it, but it becomes like the most important thing that’s going on. So we actually took a six-month break to save for the in vitro and for me to get my cool back, just to make sure we were focusing on ourselves and not just on this project.” Similarly, Inez Griffith said, “The one thing I didn’t want this process to do was to turn me into someone that had no enjoyment in life and that narrowed my worldview to think the only way to happiness was a child. I just wanted to hug those women and tell them that they were more than their infertility.”
But desperation can make it harder to stick to treatment limits, and patients frequently link it to reconsidering and then exceeding their personal restrictions: “I would define desperation as doing the absolute last thing that you thought you’d do, [IVF]” (Lindsey Burton). Early on, it can be hard for patients to place realistic limits on switching or stopping fertility treatment, especially when new treatments reveal new information and novel options. Christy Hoffman’s willingness to try IVF evolved gradually: “At the beginning, I said I would never inject myself with needles, and then I did. I said I wouldn’t undergo more than three treatment cycles with needles, and then I did. I said I would never undergo IVF, and then I felt like I had to. I finally had to realize that it was possible that I would never have my own biological child and only then did the anxiety and desperation go away.”
For this reason, patients acknowledge their treatment limits are often elastic and are often adjusted for reasons other than desperation. Simone Henry reflected, “Where I draw the line in the sand is consistently changing, and I think part of it is the feeling of being out of control, and part of it is now I have information that I didn’t have… . I once heard someone describe it [as] like a drug, because you think ‘Okay, we’ll do this and then we’ll stop, let’s do one more.’ And so I think the more I do it, the more I want it to work.” But even patients who set limits can feel desperate as they approach these upper bounds. Joyce Harrington described how desperation suffused her final IVF cycle:
I would describe “desperation” as a feeling of anxiety trying to tamp down hopelessness. It means that everything is on the line, and it conjures sweaty palms and a pit in one’s stomach. We felt increasing desperation as our treatments continued with negative results. It reached an apex with our latest round of IVF, which we decided would be our last due to financial and emotional concerns. The entire process was loaded with the knowledge that this was our last shot and that we were on the cliff. We felt tremendous relief when this round produced a positive result, and we’re now seven weeks along. The desperation is still there, however, as we know that nothing is guaranteed. I guess hopeful desperation has replaced the hopeless variety.
Some have great difficulty pausing to weigh risks alongside benefits. Patricia Burns urged, “at one point my husband even said he felt like I would keep trying to conceive even if I didn’t have him… . he could’ve left me, and I would’ve gotten donor sperm.” It was as if, when the going gets tough, the tough get tougher: “The harder it was, the more I wanted to persevere through it; to keep trying what we could try. But I don’t know if the difficulty of it is what drove me” (Brittany Watson).
The question of when to take a break or cease treatments frequently causes tension between partners. Bridget James was so eager to conceive she began another IVF cycle immediately after miscarrying: “I felt like the way for me to help cope with the loss was to get right back into treatment, and he [my husband] wanted to take some time off, and maybe even explore other avenues.” Nicole Bell acknowledged, “I was so afraid he [my husband] was going to say ‘stop’ because I never wanted to stop. I was obsessed.” She continued, “[A]s long as I had a plan of action, as long as I was doing something, I felt good. I felt proactive.” For their part, men often feel besieged when they try