An experience I never want again: An autoethnography on infertility and mental health
Tara Rava Zolnikov, Ph.D., M.S., M.S.
Infertility affects approximately 10% of women worldwide. While the treatment of infertility through assisted reproductive technology can result in positive outcomes, there are also various adverse mental health effects associated with it. More information on how to reduce psychological effects could be learned by reading a firsthand perspective of infertility in action. This autoethnographic account describes an experience, in hopes of highlighting some areas that could lead to areas of improvement in the future. Every aspect of infertility or infecundity caused layers of emotional turmoil, as time was prolonged through testing, procedures, and treatment confirmation; finances became drained; reasons and answers were muddled; and hormone cocktails swirled intermittently throughout my body. Depression, anxiety, and hopelessness became secondary emotions to me, as I stumbled and failed to resolve during this process. In addition, I rolled along an assembly line through multiple physicians who handled my case, procedures, and protocols. Alongside assisted reproductive technology, there is a need for mental health support, continuity of care, improved patient-centeredness, and enhanced communication and expectations between the patient/physician dyad.
Funding: No funding was received for the experience or writing of this manuscript.
Growth and advancement of infertility has significantly improved since its inception in 1981.1,2,3 While the treatment of infertility through assisted reproductive technology can result in positive outcomes, there are also various adverse mental health effects associated with it; some of these effects include chronic stress, anxiety, and depression.4,5,6,7 Couples may experience these issues for many reasons, including but not limited to physical and psychological burden, relationship or personal problems, treatment rejection, or clinical matters.8 Outcomes depend on the individual; for example, psychological burden could stem from economic difficulties, fear of treatment, or unknowingness of the future.
More information on how to reduce psychological effects could be learned by reading a firsthand perspective of infecundity in action. This autoethnographic account describes an experience, in hopes of highlighting some areas that could lead to areas of improvement in the future.
Slow death of nonexistent child
My own infertility came as a surprise, for I conceived my first child almost as quick as my husband and I decided to have him. Looking back, I would have laughed at the person who told me the barbaric cut that sliced through my abdomen to release my son from my womb was not the most emotionally and physically difficult thing I would experience in the next four years. The sleepless days of infancy were dark; year one crept by like salt-withered snail. But under the guise of ‘women can do it all’, I forced myself to work even harder than before and claimed success between motherhood and my occupation. I felt pretty good at parenting and decided to splurge on that notion, bringing the idea to fruition by choosing to have another child. Clouds of uncertainty hung heavy around my head as I wondered if I would be as good of a mom to the second child.
Year two swept us off our feet. No baby, no problems, but no action. I imagined lack of success had to do with the fact that I was still breastfeeding. Okay, I’ll stop that, and we can try again. The first pregnancy post-my son was socially like my first pregnancy. Everyone was seated for the exciting news, which progressed with typical follow-up questions: what we would name him/her, when is our projected due date, etcetera. To confirm beyond a home pregnancy kit, I visited my ob/gyn, who told me it was a chemical pregnancy. She said I would naturally miscarry. Disappointment, anger, and confusion became second nature until I had my cycle: a restart, I told myself. The next pregnancy came a couple months later—blighted ovum. I underwent medical management to pass the pregnancy. Multiple failures were not my fault, but I hated my malfunctioning body just the same.
I finally realized I was going to need some help, so I made an appointment with a fertility specialist; on my first appointment, we discovered my third pregnancy, only this time, there was no heartbeat. Another D&C (dilation and curettage) and with it, took bits and pieces of my mental health. The world darkened and I became jaded. I was caressed and coddled into the arms of my fertility physician who promised me the world, “we will find out what is wrong, don’t worry!”
To find out ‘what is wrong’ means to undergo a myriad of tests over months and possibly years. Over the next year and a half, I transformed into a lab rat; each test meant another hole in my arm, a 100-mile drive to the physician’s office, money spent, time away from my son, and putting my job on hold. In total, I underwent 87 blood tests, 17 ultrasounds, and four procedures. Each office visit caused more stress, as tasks in my workload queue grew. In addition to this, I still had no answers. The only thing I learned about myself was that have slightly elevated amounts of antithrombin; this analysis led to forever a standing checkmark next to idiopathic ‘infertility,’ as I continued down the assembly line.
I finally made it to the egg retrieval phase. That was the part where I was forced to become an at-home chemist and either ask for help or inject myself with a conglomeration of medication. Besides the lack of information on what was entering my body (e.g. one injection stung like venom), my entire abdomen was covered in bruises and I walked around with a heavy weight in my stomach. Anxiety clung heavy to my back, as I wondered how much my age would play a role, how many eggs would be extracted, cognizant that I would never be able to put myself through that process again. The time came, I was put under and I put my blind trust in the on-call physician of the day. While I was not looking forward to losing another valuable workday and more time away from my son, I hoped that my body was capable and kind enough to sacrifice a few good eggs. The ten-day wait was next, fear enveloped me as I awaited the dreaded phone calls telling me my eight retrieved eggs turned into six, turned into a final four. I patted myself, thinking that surely would be enough to finish this process.
More than a year later since I first walked into the door of the fertility clinic, it was finally time for my transfer. I had planned for it to happen around the holiday season, when I would be able to take a break during school closures. I started my protocol, taking estradiol, until I went in for my bloodwork checkup; my levels were too low, so another on-call physician recommended intravaginal estrogen. I took those, swallowing my nausea and self-pride, until my next blood exam revealed that my levels increased almost 10-fold. The same physician who had conducted my egg retrieval called me and told me my transfer was canceled due to estradiol (E2) instability. In a single phone call, my holiday hopes were destroyed.
After this, I went on a natural mock trial. More driving, more tests. A new protocol was assigned shortly afterwards. I felt leery of the entire process but knew that the show must go on—I had put too much time and energy to stop at that point. Cycle day 1 finally arrived and that lead to eventual multiple office visits for blood tests and ultrasounds; then more at-home chemistry was required, as I started progesterone-in-oil shots and trigger, which caused subsequent sore spots on my body. The day arrived for my transfer and at this point, I had been told that a third random physician would be conducting the transfer. Unhappy, but lacking any options, I agreed, as I sat I that cold sterile room, while some stranger I had met five minutes prior peered in between my legs. I shrugged off the discomfort and focused on victory. I was uninformed of the process, all while the tech pressed aggressively on my full bladder and the physician seemed to wrangle about incoherently. I was in there an hour before I was apprised of the situation; he was unable to move beyond the anterior false passage to complete the transfer. To say I was shocked would be an understatement, as I threw my clothes on and bolted out of the room with tears streaming from my face. Another failure, with hopes shredded to minute afterthoughts. Comparatively, the only other times I had felt like this in my life was when my friend died, during my divorce, and when I withdrew from a prestigious doctorate program.
Every failed pregnancy and treatment part of the fertility process included a cocktail of hormones that created a synergistic effect and enhanced my emotions. The added waves of hormones to the underlying stress of the situation on top of the recurring days absent from work resulted in a Molotov. I was a ticking time-bomb; yet, no one at any point had suggested mental health support. This situation needs to be investigated from a holistic perspective, knowing fully that this not just about a physical desire or need; experiencing pregnancy loss or infertility is disheartening and demoralizing. To date, addressing devastating failed hope is not necessarily part of an infertility treatment protocol.
Solutions for Improvement
Ideas for improvement and solutions include integrated mental health support, continuity of care, improved patient-centeredness, and enhanced communication and expectations between the patient/physician dyad.
First, mental health support was never mentioned by any of the physicians (n=4) in this practice during the entire process. There are specific diagnostic tools that can be used to identify patients who need psychological support.9,10 This could be enhanced by providing gender-specific counseling and treatment as part of services provided.11 For example, oftentimes when a patient visits a primary care physician, he or she fills out a screening questionnaire, which has mental health aspects related on it; if there are concerns, the physician is able to immediately discuss these aspects with the patient. This same strategy could be applied to a fertility clinic where current mental health concerns can be immediately discussed with the fertility physician, who can then refer the patient to more appropriate mental health care afterwards. This type of outreach could improve adverse mental health outcomes associated with infertility.
Second, continuity of care did not occur, as I was passed from physician to physician during important procedures. Sustained continuity of care improves patient outcomes, especially those who experience chronic conditions, wherein the psychological symptoms of infertility are similar to those associated with other chronic medical conditions and should be treated equally.12,13 Having the same physician can ensure prospective observation data points that can recognize psychological outcomes, if evident.
Third, patient-centeredness needs to be improved, where every dimension of the person is understood and cared for during this psychological and physically sensitive process. Patient-centeredness can contribute to the quality of care (e.g. including various specialties engaged in the care process).14 An interactive model can be used to determine patient needs, understand improvements, organize system factors, and improve the upstream approach of patient, physician interaction and associated needs.15 This can result in positive care experiences, which decrease anxiety and depression scores in patients affected by infertility.16
Finally, communication and expectations of assisted reproductive technology needs to be addressed. Hope is a powerful tool that, if insufficiently met, can cause compounding stress and anxiety, as the reality of becoming pregnant and having a biological child may not surface. Providing logical, rational data is less emotionally-taxing, while still being able to present itself as informative.
Because this area of care is poorly understood and multidimensional, it is difficult to remedy; this reaffirms the fact that specific attention should be given to this patient population regarding mental health and support services. Practiced correctly, these small steps can ensure that women who are undergoing the physically difficult experience of infertility are still being mentally cared for as well. Improving mental health outcomes can simultaneously occur alongside treatment, while still being made aware of risks and hopeful goals.
- Jones HW Jr, Jones GS, Andrews MC, Acosta A, Bundren C, Garcia J, et al. The program for in vitro fertilization at Norfolk. Fertil Steril 1982;38:14–21.
- Centers for Disease Control and Prevention. ART success rates—archived ART reports. Available at: www.cdc.gov/art/reports/archive.html. Accessed August 25, 2018.
- Society for Assisted Reproductive Technology. IVF success. Available at: www.sart.org. Accessed August 25, 2018.
- Schmidt, L. (2010). Psychosocial consequences of infertility and treatment. In Reproductive endocrinology and infertility(pp. 93-100). Springer, New York, NY.
- Cousineau, T. M., & Domar, A. D. (2007). Psychological impact of infertility. Best Practice & Research Clinical Obstetrics & Gynaecology, 21(2), 293-308.
- Oddens BJ, den Tonkelaar I, Nieuwenhuyse H. Psychosocial experience in women facing fertility problems—a comparative survey. Hum Reprod 1999;14:255–61.
- Domar AD, Broome A, Zuttenmeister PC, Seibel M, Friedman R. The prevalence and predictability of depression in infertile women. Fertil Steril 1992;58:1158–63.
- Gameiro, S., Boivin, J., Peronace, L., & Verhaak, C. M. (2012). Why do patients discontinue fertility treatment? A systematic review of reasons and predictors of discontinuation in fertility treatment. Human reproduction update, 18(6), 652-669.
- Verhaak CM, Smeenk JMJ, Evers AWM, Kremer JA, Kraaimaat FW, Braat DDM. Women's emotional adjustment to IVF: a systematic review of 25 years of research. Hum Reprod Update. 2007a; 13: 27–
- Klemetti, R., Raitanen, J., Sihvo, S., Saarni, S., & Koponen, P. (2010). Infertility, mental disorders and well‐being–a nationwide survey. Acta obstetricia et gynecologica Scandinavica, 89(5), 677-682.
- Cabana, M. D., & Jee, S. H. (2004). Does continuity of care improve patient outcomes. J Fam Pract, 53(12), 974-980.
- Domar, A. D., Zuttermeister, P. C., & Friedman, R. (1993). The psychological impact of infertility: a comparison with patients with other medical conditions. Journal of psychosomatic obstetrics and gynaecology, 14, 45-52.
- den Breejen, E. M. E., Nelen, W. L. D. M., Schol, S. F. E., Kremer, J. A. M., & Hermens, R. P. M. G. (2013). Development of guideline-based indicators for patient-centredness in fertility care: what patients add. Human reproduction, 28(4), 987-996.
- Dancet, E. A. F., Van Empel, I. W. H., Rober, P., Nelen, W. L. D. M., Kremer, J. A. M., & d'Hooghe, T. M. (2011). Patient-centred infertility care: a qualitative study to listen to the patient's voice. Human Reproduction, 26(4), 827-833.
- Aarts, J. W. M., Huppelschoten, A. G., Van Empel, I. W. H., Boivin, J., Verhaak, C. M., Kremer, J. A. M., & Nelen, W. L. (2012). How patient-centred care relates to patients' quality of life and distress: a study in 427 women experiencing infertility. Human Reproduction, 27(2), 488-495.