Mingling (Infertility) Experience Research and Friendship

While curating Cradling Creativity in Philadelphia, we had the pleasure to virtually connect with Bethany Johnson, MPhil, MA and Margaret M. Quinlan, PhD, two professors at UNC Charlotte. They graciously shared with us their research on infertility and communication. What struck us even moreso was how they were personally touched by infertility – through friendship. We want to share their story as it sheds light on both the impact of infertility on scholarship and teaching but also on the importance of friendship and support.  — The ART of Infertility

By Bethany Johnson, MPhil, MA  and  Margaret M. Quinlan, PhD

Our research journey began in a hotel room on a research trip when I (Bethany) learned an IVF cycle might have failed (they were ultimately able to freeze two embryos). I was in my third year of failed treatments then. It was a horrible morning—they called while I was in the shower at 7:38 a.m. I remember the exact time because the embryologist left a message saying “I really don’t like to leave messages on people’s voicemail,” yet I was not informed when I could expect a call, and the office wouldn’t open until 9 a.m., so there was no one for me to call back. I felt powerless, devastated and angry.

Meanwhile, Maggie was so upset for me—she asked if I wanted to just go home instead of completing our research trip, but I was desperate for something else to concentrate on. Later she told me she spent the day pulling her sweater over her expanding belly, and avoiding eye contact just in case anyone asked her about her pregnancy. She also told me later she never could have stayed and worked—she would have gotten in her car to go home and grieve. I felt so out of control that the only thing that anchored me was focusing on something else. I was so thankful she was there with me and didn’t push for us to go home.

It wasn’t the first time she was there for me in my treatment journey. Previously, she brought me a beautiful baby blanket as a gift when we got a dog—a gift I never thought I’d have a reason to receive. Then when I needed an outpatient surgery and my husband was forced to be out of town, she picked me up and drove me to the clinic, waited through the procedure, drove me to a hotel and tucked me in with meds and treats afterward, since my house wasn’t habitable that day. (It was a rough season.) But the greatest gift she gave me was during that research trip. She listened while I cried and grieved, dove into the archive with me, dreamed up research conclusions, walked miles around Brooklyn while pregnant, and then, on the drive home, opened up our research future.

The magic words were these: “Well why don’t we do a study about this?”

That was four years ago. Since then, we’ve conducted three studies, published four articles, made a documentary with graduate students and worked with our participants, a graphic designer (Bo Rumley) and an artist (Alma R. Evans of Ursa Wild Design) to create treatment support cards for people in treatment. Maggie and Alma both told me they wished they had cards to give to their friends (like me), and I wished I had them to give to others. But many of our interviewees said the same thing during our first study, and that’s how we ended up reaching out to The ART of Infertility to share what emerged from our research.

Photo credit: Lynn Roberson, UNC Charlotte, Communications Director, College of Liberal Arts and Sciences

These cards eventually appeared in The ART of Infertility exhibit, along with the work of other talented artists and activists. At the opening, the cards were placed in an open mailbox, challenging viewers to imagine receiving or sending these unique messages to friends and family walking the lonely road of waiting for conception, sometimes receiving a diagnosis, and even beginning treatment or treatments. Being a part of this exhibit felt, in some ways, like the culmination of our efforts to make a difference because of my experience and the experience of so many others in our community.

 

Alma’s card in mailbox, The ART of Infertility. Photo credit: Maria Novotny

Through it all, I could count on the steadfastness of Maggie’s friendship, as well as the support of people we met throughout our work, and kept up relationships with after our studies concluded (when it was appropriate to speak with them again of course). For us, friendship and research always did and always will, overlap, even as medical statuses and experiences continue to shift and change.

Our Research on Infertility

Graduate students in “COMM 6011: Visual Ethnography” course. Photocredit: Lynn Roberson, UNC Charlotte, Communications Director, College of Liberal Arts and Sciences 

The graduate students really dove into the experience and wrestled with their own ability to be allies and supporters of people diagnosed with infertility or undergoing infertility treatments. As Maddy Michalik recalled, “This was my first experience with producing a documentary, and I learned so much about artful research methodologies as well as how to better communicate with individuals walking the (in)fertility path. Initially, I was struck by the varying degree to which patients shared their journey with others — some were very open and regularly updated friends and family on social media while others only told those that needed to know. This taught me that as with any health experience, individuals will cope and seek support in different ways, and as allies, we need to be mindful of how we communicate and offer support without being invasive or insensitive.”

Nathan Pope relayed, “Our hope is that the use of an artistic medium allowed for a more immersive, emotional experience for the viewer. Seeing an individual express their feelings and hearing their spoken word may create a more reflective space for the viewer, just as interviews created a reflective space for participants and the entire project created a contemplative moment for researchers.” Witnessing students learn the process of conducting research and wrestle with these issues as they raised awareness about meaningful support has been one of the most incredible results from our projects.

Part of the documentary features infertility greeting cards that are on display in The ART of Infertility exhibits, The graduate student-produced documentary, 1 in 8: Communicating (In)fertility will also be included in the traveling art exhibit. The first draft of 1 in 8: Communicating (In)fertility https://youtu.be/7z9jfZjoS04. The film was produced by: UNC Charlotte Communication Studies Masters Students/Producers including:  Desiree Bataba, Shanice Cameron, Cameron Davis, Samantha Maine, Elizabeth Medlin, Maddy Michalik, Nathan Pope, Miranda Rouse, and Olivia Sadler, and UNC Charlotte Senior Researchers: Margaret M. Quinlan & Bethany Johnson. The impact of our draft film continues to reverberate throughout the local community and beyond.

A goal of our (Maggie, Bethany and UNC Charlotte graduate students) arts-based infertility research is to prompt future research which deepens our understanding of (in)fertility diagnosis, treatment, and support for patients. We are grateful to be included in The ART of Infertility exhibits and look forward to future collaboration.

More On Our Research on Infertility

Johnson, B., Quinlan, M. M., & Myers, J. (2017). Commerce, industry, and security: Biomedicalization theory and the use of metaphor to describe practitioner-patient communication within Fertility, Inc. Women’s Reproductive Health, 4, 89-105.

Johnson, B., Quinlan, M. M., & Evans, A. (2017).  Research based Infertility greeting cards in traveling art exhibit. The ART of Infertility- Infertility Art Exhibit, Art Therapy. http://www.artofinfertility.org/

Johnson, B., & Quinlan, M. M. (2017, Nov). Race, racism and infertility. Racism in Science [series]. Vital: On the Human Side of Health [Sponsored by the National Endowment for the Humanities]. Retrieved from https://the-vital.com/2017/11/10/racism-infertility/           

Johnson, B., & Quinlan, M. M. (2017, Nov). Infertility: Resources for family, friends, and practitioners. Racism in Science [series]. Vital: On the Human Side of Health [Sponsored by the National Endowment for the Humanities] Retrieved from https://the-vital.com/infertility-resources/

Johnson, B., & Quinlan, M. M. (2017). Insiders and outsiders and insider(s) again in the (in)fertility world. Health Communication32, 381-385.

Johnson, B., Quinlan, M. M., & Marsh, J. S. (2017). Telenursing and nurse-patient communication within Fertility, Inc. Journal of Holistic Nursing.

Johnson, B., & Quinlan, M. M. (2016). For her own good: The expert-woman dynamic and the body politics of REI treatment. Women & Language39, 127-131.

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