I’ve Done Two Grueling Rounds of IVF. I Had No Idea About the Isolation I Was In For.

This story was originally published by Undark and has been republished here with permission.
My lower abdomen was covered in yellow bruises from injections I gave myself twice a day. I cried over tiny mishaps: when I couldn’t find my keys, when I spilled coffee grounds, when I realized I’d be late for yet another appointment at the fertility clinic to have my blood drawn and ovaries probed. It felt as if every imperfect thing I did reflected my apparent inability to get pregnant.
Last year, I joined the anxious, frustrated club of millions of people who have turned to fertility technology in hopes of having a child. I educated myself on the science of conception, the options available, and the many lifestyle factors that could work for or against me. I spent thousands of dollars, went to countless doctor’s visits for hormone and ovarian follicle tests, and subjected my body to unnatural floods of chemicals and two surgeries because I believed that the prize of becoming “with child” was within easy reach.
Although literature from my fertility clinic acknowledged that in vitro fertilization would be stressful on the body and mind, those words did not prepare me for the toll that all of this would take on my mental health. I also had no idea how isolated I would feel from close friends and family members, who couldn’t possibly understand my struggle.
For two full cycles, I gave my days over to the all-consuming, exorbitantly expensive IVF regimens. Midway through the second round, I felt as if I had lost all hope and joy about the possibility that the treatments might actually work. Suddenly, other people’s pregnancy announcements made me sad. I understood more deeply than ever why my clinic has digital reminders and a sign requesting that patients refrain from bringing children to appointments.
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In February, the White House issued an executive order that “directs policy recommendations to protect IVF access and aggressively reduce out-of-pocket and health plan costs for such treatments.” If this leads to cheaper fertility care, that would be a huge relief to patients’ bank accounts. But it doesn’t address another burden often interwoven with fertility challenges: mental health.
Fighting back tears on a recent bike ride to the clinic, I thought, Wouldn’t it be great if there were a person I could talk to at the fertility clinic about my emotional turmoil and traumatic associations with this process? But I knew there wasn’t. Having any spare time and energy to seek professional counseling seemed impossible.
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To find others going through IVF at the same time, I spent hours on Reddit. I read about how other patients had gone through numerous miscarriages and even more egg-retrieval surgeries than I had, and still had no luck. I read testimonies from my anonymous IVF siblings who had put their lives on hold in more extreme ways than I had—quitting jobs, leaving school, or declining professional opportunities to focus on this hypercontrolled regimen. They postponed vacations and developed negative feelings about their own bodies as they gained weight during hormone injections. Some said IVF had become their entire identity.
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Data backs up the mental health burden. A 2016 study led by researchers at the University of California, San Francisco, assessed the mental health of fertility patients and found that nearly 57 percent of women and 32 percent of men had symptoms of clinical depression during at least one check-in point during the 18-month study. What’s more, almost 80 percent of women and more than 60 percent of men reflected clinical anxiety symptoms during at least one assessment.
But almost a decade ago, those numbers weren’t translating into intervention. The same study found that only 21 percent of women and about 11 percent of men said that they had received mental health services during the same 18-month period. Other psychiatric disorders that may be linked to infertility include obsessive-compulsive disorder, heavy substance use, and eating disorders. In another study, scientists even found that the psychological burden of experiencing infertility was similar to that of having cancer or HIV.
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Whether stress itself actually produces worse outcomes in terms of live births has been controversial and hard to measure. Yet one study found that interventions to reduce the stress hormone cortisol prior to beginning IVF “could improve treatment outcomes,” and another stated that psychological interventions have been associated with “significant increases in pregnancy rates.”
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In a perfect world, all fertility practices would have mental health professionals available as a matter of course, in the same building. Blood work and ultrasound monitoring appointments could be scheduled immediately before or after talk therapy. In an even more perfect world, the cost of mental health care would be covered.
But there is little regulation around fertility practices in general. Likely, such a world would have to be created by the clinics themselves.
Some fertility practices do have in-house therapists on hand. One of them is Elizabeth Grill, director of psychological services at Weill Cornell Medicine’s Center for Reproductive Medicine, in New York. “The No. 1 reason why people drop out of treatment is because of the psychological burden,” she told me in a recent interview. And despite the data showing how much distress IVF patients experience, Grill said, there is still a real disconnect between patient needs and the mental health services that are provided to them.
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Grill is also the chair of RESOLVE: The National Infertility Association. RESOLVE’s website offers search tools for locating support groups and mental health professionals across the country—though not every therapist in the U.S. accepts all insurance plans, if they accept insurance at all.
One small but important service that clinics could, and sometimes do, offer struggling patients is a list of local mental health practitioners qualified to address issues relating to infertility, Grill said. The 2016 study found that less than 27 percent of the men and women surveyed reported that a fertility clinic had made information about mental health services available. “Sometimes there’s a learning curve to this where people and centers need to be educated about the importance” of the mental health burden of fertility treatment, Grill said.
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It’s also relatively easy to set up support groups for patients to meet and discuss their ups and downs. Mirroring my own experience, Grill noted, “A lot of people feel even more loss in their life around infertility because the best friend that’s been with them through every crisis suddenly doesn’t get this.” Besides on Reddit, I’ve found comfort from friends with whom I wouldn’t otherwise share nitty-gritty details of my fertility treatments because they had either frozen eggs or created children through IVF.
As of this writing, neither of my IVF rounds has led to a successful pregnancy, and I don’t know whether any fertility treatment or technology ever will. There is still a lot of mystery around why some people have a harder time getting pregnant than others. But giving us ways to cope with emotional roller coasters, vast uncertainties, and disappointment—that should be easily conceivable.