Life, Interrupted

decorative artwork

The coronavirus pandemic has disrupted daily life, but for some, it’s disrupted the process of creating life.

“When the Stay at Home order across the U.S. was put into place, the American Society for Reproductive Medicine issued recommendations that reduced fertility patients access to treatments and other routine fertility procedures. They indicated that the risk for exposure to the virus was simply too high for patients and fertility healthcare workers,” Maria Novotny explained. “As such, they put a moratorium on any sort of fertility treatment or services.”

Professor explains how COVID-19 impacts
infertile people, gives them voice through art

Novotny is an assistant professor in UWM’s English department. Her research centers around the rhetoric of infertility: How do people experiencing infertility use language to address their struggles? How do they tell people around them about their difficulties in starting a family? How does language shape cultural assumptions about infertility and recurrent reproductive loss?

In addition, Novotny is the co-founder and co-director of The ART of Infertility , a non-profit organization that helps patients with infertility address their struggles through art and storytelling. It’s not the traditional wheelhouse of an English professor, but Novotny says that creating imagery or sculpture is simply another form of multimodal storytelling, just like writing.

“I run workshops inviting people to create pieces that express their experiences with infertility, both to help them heal, grieve, and cope with that, but also as a way to educate those who may never go through infertility and allow them to emotionally connect with that experience,” she said. “That leads to larger conversations about how to have a family, and the finances around it – many times, there’s not insurance coverage for (treatments). The out-of-pocket costs to form a family can be quite high with a typical round of IVF costing $12,000 on average and domestic adoptions ranging between $25,000-$40,000.”

Families and finances on hold

Infertility is recognized by the World Health Organization as a disease of the reproductive system causing an inability to naturally become pregnant. While an intimate and personal topic not often discussed in mainstream media, the disease impacts 1 in 8 couples. Additionally, access to affordable infertility care impact same-sex couples, trans individuals, and single-parents by choice. People experiencing infertility can build their family in a number of ways, including in vitro fertilization (IVF), surrogacy, or adoption, but those processes can be emotionally, financially, and physically draining.

And an infertility diagnosis by itself can be devastating, Novotny noted. Many of the patients she talks to report feeling disoriented, angry, or out of control.

Unfortunately, she added, the COVID-19 pandemic has only added to those feelings for people trying to build their families.

“Let’s say you’re in the midst of pumping your body full of hormones so you can have an egg retrieval for IVF. Essentially, (Stay at Home orders) said you couldn’t have your egg retrieval at that moment,” Novotny said. “You had just put in, especially if you didn’t have that insurance coverage, possibly up to $5,000 that was just — poof! Gone away.

“Similarly, with adoptions, challenges emerged with navigating home studies, which is a critical component in the adoption process. International adoptions also got challenging because you couldn’t necessarily travel or come back to the country with your child. This left some families in legal limbo,” she added.

Circumstances are changing as more communities, cities, and states begin to re-open, but questions, especially regarding their finances, remain for many infertile patients. Most patients hope they can be reimbursed for the money that they spent pursuing treatments that were ultimately put on hold, but that will likely come down to the policies of individual fertility clinics.

For others, the pandemic cost them more than money; it cost them their chance at a family. Some people may have lost their fertility window altogether, or some people who were candidates for adoption were unable to adopt a child.

“It can be difficult to communicate that to friends and family members who have never gone through infertility and don’t understand the emotional loss,” Novotny said.

Addressing anguish through art

That’s where the art comes in. The ART of Infertility allows patients to illustrate their struggles — from photographing literal bins of needles to show the treatments they’ve undergone to drawing brains, tornadoes, flowers, and whatever else they feel represents their journey. Some patients have begun to create art related to their struggles through the COVID-19 pandemic.

Novotny often takes that artwork and has showcased the pieces online and in public exhibitions in Los Angeles, Chicago, Philadelphia and Seattle. The art and exhibitions have also turned into a form of advocacy.

“Ultimately, it led to larger awareness efforts to where now Washington Senator Patty Murray co-sponsors many pro-infertility family-building bills in (Washington,) D.C. A lot of it is because of advocacy that grew from a public exhibit in Seattle,” Novotny said.

The ART of Infertility especially advocates for legislation that would require insurance companies to cover fertility treatments. While 17 states in the U.S. currently have a mandate, Wisconsin does not.

But at its root, the ART of Infertility is a way for infertile people to begin a conversation about a deeply personal challenge with their family and friends. Art can be a gentle way to begin a difficult conversation, Novotny said, especially for people who don’t know how to talk with their friends about infertility.

“The ultimate goal of my work is to use art and storytelling to translate those intimate experiences into educational moments that dismantle false narratives about fertility,” said Novotny. “Infertility is a difficult disease for patients to navigate because we don’t talk about it.”

Those conversations have become especially important now, she added.

“With COVID-19, there’s a lot of difficulty in figuring out how to reach out (to friends experiencing infertility) and to know what to say,” Novotny said. “There’s a lot of (fear) around people who aren’t going through infertility who are afraid of talking with their friends because they’re afraid of saying the wrong thing.

“For those who want to figure out what to say, do your research. Read about infertility and read about how that can affect someone’s identity – with their gender, how they feel about their relationship, and how it may change the relationship they have with their own families or friends, especially those who can easily get pregnant.”

By Sarah Vickery, College of Letters & Science