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.

Bringing The ART of Infertility to My Hometown in Utah

Today we hear from Camille Hawkins, Executive Director of the Utah Infertility Resource Center. We’re excited to be collaborating with Camille to bring The ART of Infertility to Utah next month for an exhibit and programming beginning mid-February and running through mid-March.Thanks, Camille, for sharing your story!

The first time I saw the positive line on a pregnancy test I was in disbelief. Five years of planning sex around ovulation, temperature taking, pills, my husband leaving semen samples in the awkward room at the clinic, injections, undressing from the waist down, putting my cold feet in stirrups, vaginal ultrasounds and suppositories, surgeries. Having grown up in the extremely family-oriented culture of Utah, there was nothing I wanted more than to have a baby and be a mom. We had finally made it. And then it ended.

One of the hardest things about miscarrying my beautiful embryo(s) was accepting that there was nothing more I could do to increase my chances of getting (and staying) pregnant again. All of the things I had the power to do had already been done. I saved my money religiously. I ate healthy. I followed the instructions for the daily cocktail of injections. I never put a laptop on my lap or got in a hot tub. I meditated and prayed. Lots.

Infertility sucks. That’s all there is to it. What’s more, people around me often didn’t understand the almost unbearable emotional pain I was dealing with. I tried sharing my story with others, but my thoughts, feelings, and experiences were frequently invalidated by well-meaning friends, family, and colleagues. I was so desperate, depressed, and isolated. Most days it felt that the only hope in life was the idea that maybe, just maybe, a miracle would happen that would finally allow me to be a mom. The day I went to work as a counselor and met with my client who had received an abortion at the same time I was miscarrying was the day I realized I could not do this alone anymore.

I needed real connection. I needed expression. I needed to know that I wasn’t alone. A black hole was pulling me in. I desperately needed someone or something to pull me out. I started to look and found nothing. I started painting and journaling to release and communicate the pain, but I still had no one on the outside to say, “Yes, this is awful. I know your pain. I went through it too. I was on that roller coaster.”

In March of 2014 I started a support group in my living room. That support group was the seed that led to the Utah Infertility Resource Center (UIRC), a nonprofit organization serving thousands of Utahns who are facing infertility. This is done through no and low-cost infertility counseling, in-person support groups, online support, infertility awareness, informational consultations, and educational events that bring our community together. The number of infertility community members that UIRC serves continues to grow, and in Spring 2018, we will offer yet another meaningful program called “Works and Wonders: Art Inspired by the Journey of Infertility.”

I met Elizabeth and Maria during a trip I took to Washington D.C. to advocate to congressional leaders on behalf of Utah’s infertility community. I learned about their personal stories and experiences with infertility and how they, like me, were using art and writing as creative expressions to make visible the pain of infertility. They told me how they too created a non-profit organization, The ART of Infertility. This organization collects art and writing reflective of infertility and reproductive loss and curates provoking and empowering exhibits about infertility so as to build community support and provide greater education and awareness. After talking to them, I knew that my hometown needed to host one of their exhibits.

I needed real connection. I needed expression. I needed to know that I wasn’t alone.

Two years later, URIC is partnering with The ART of Infertility to host a series of month-long programming, titled “Works and Wonders: Art Inspired by the Journey of Infertility”, running from Feb 16, 2018 – Mar 16, 2018. These innovative and emotionally powerful events will consist of:

  • Arches in Perspective: The ART of Infertility in Utah”, an infertility-themed art exhibit with original works at Art Access Gallery and Urban Arts Gallery in downtown Salt Lake City organized and curated by The ART of Infertility.
  • A series of community art therapy workshops, January 20 at Art Access with therapist Emily Bagley, and at each of our six monthly support groups throughout the state.
  • A film screening of the documentary, One More Shot, with a panel discussing using the humanities to cope with infertility on February 15 at Urban Arts Gallery.
  • An opening reception at each gallery on February 16 in conjunction with the SLC Gallery Stroll.
  • And, a closing night gala at The Falls Event Center on March 16 at 6 pm.

We have already held one art therapy workshop for our clients in preparation for the exhibit and the process and outcomes were heart wrenching, touching, and profound. One of the clients who attended said, “This workshop really brought out a lot of feelings I didn’t know I had. I was able to express those feelings in a productive way, and was able to have something to remind me.” I watched each person in this workshop, and learned all it takes to create art around infertility is a willingness to express and a medium to express with. The stories of each of our clients are already beautiful and healing. It just takes a willingness to transfer it from our brains and bodies to something outside ourselves.

I know there is nothing special about my own infertility story. In fact, as Executive Director of UIRC, I now hear the same story over and over again. All Day. Every day. The good news is that because of UIRC, no one in Utah ever has to go through this journey alone ever again. I, along with Maria and Elizabeth, hope “Works and Wonders” will provide even more opportunities for Utahns struggling with infertility to get the education, connections, and opportunities for expression that I know they so desperately need. I can’t wait for you to join us!

We are still accepting artwork for this exhibit. Enter yours at http://bit.ly/ArtworkUT2018.

Maria, Elizabeth, and Camille at Infertility Advocacy Day in 2016.