Doctors and surgeons are seeing more nonbinary patients

In 1979, when the first international transgender health care guidelines were published, trans people who sought treatment were under pressure to identify as either male or female to be taken seriously by providers, according to Dr. Asa Radix, senior director of research and education at the Callen-Lorde Community Health Center, which provides health care to LGBTQ people in New York City.

Since then, attitudes about gender and sexuality have radically evolved. In the 1980s and the ’90s, words such as “nonbinary,” “genderqueer” and “genderfluid,” which describe identities outside “male” and “female,” started to appear in academic and activist discourse, and have since made their way into mainstream culture.

Over the past decade, some health professionals have shifted away from treating gender identity as a disorder and are focusing instead on dysphoria, which is the distress a person feels as a result of their gender not being recognized. This distress decreases or disappears for many people who take masculinizing or feminizing hormones, according to the American Psychiatric Association. Microdosing hormones is just the latest evolution of this treatment.

Doctors and therapists who specialize in transgender care say nonbinary people have been coming to them for years, though they’ve only recently had the language to explain it.

Dr. Leandro Mena, medical director of Open Arms Healthcare Center in Jackson, Mississippi, estimated that about 100 of his 250 transgender patients are nonbinary, a number that has increased since he opened the clinic in 2013, though the number who take hormones, and dosages, vary.

“In retrospect, if you ask me, I probably gave hormones to my first nonbinary patient probably about 10 years ago,” he said. “I just didn’t recognize it or I just didn’t ask the questions that I should have asked at that time to recognize that that person was nonbinary.”

A ‘turbulent’ journey

Micah Rajunov, 33, editor of the book “Nonbinary: Memoirs of Gender and Identity,” began transitioning in 2010, before ever hearing the word “nonbinary.” Back then, Rajunov, a doctoral student at Boston University, had little understanding of what it meant to be transgender but didn’t see themselves as male or female.

After having a mastectomy in 2011, Rajunov watched a few YouTube videos made by people who were on low-dose testosterone, and decided to give it a try.

Micah Rajunov Chloe Aftel / Chloe Aftel from the series "Outside and In Between"

Rajunov described the journey to finding the right testosterone dose as “turbulent.” Rajunov’s physician was unsure what dosage to put them on, and prescribed a higher amount than Rajunov expected. Rajunov liked some of the effects — including a deeper voice — but didn’t like the growth of facial hair.

Everything seemed to be happening too fast, Rajunov said.

“I stopped for a while, I felt like I had masculinized as far as I wanted to, and I picked it back up again,” Rajunov said.

Rajunov switched to a new doctor in 2013 who helped Rajunov find a dose that worked — about a quarter of what would be considered standard.

“If I end up experiencing more masculinizing changes that I’m uncomfortable with, then I would stop, but it hasn’t gotten to that point,” Rajunov said.

Rajunov, who runs a resource blog for nonbinary people called “genderqueer.me,” has responded to thousands of emails from nonbinary people who are looking for support related to transition. About a third of the people who write in have been interested in learning about microdosing and how to find knowledgeable health care providers, Rajunov said.

When trans and nonbinary people who were assigned male at birth begin to transition, they are usually prescribed hormone blockers to suppress natural testosterone levels. But not everyone is interested in taking blockers, and some may prefer to be on lower doses, to achieve a more nonbinary appearance.

William Crook Courtesy of William Crook

William Crook, 32, who is nonbinary and lives in Phoenix, takes a standard dose of estrogen pills daily but is not taking drugs to block natural testosterone production, which Crook feared would diminish sexual function.

Crook, a bank employee, started estrogen in early March, and began noticing changes within a month. Crook’s skin grew softer and small breasts appeared on Crook’s once-flat torso.

Crook is more confident now and has no desire for surgery.

“I personally much prefer the feel and the experience of this way of doing it,” Crook said, “because it’s just giving my body this chemical that it didn’t produce enough of on its own.”

Barriers to care

While the medical community’s understanding of trans and nonbinary people has evolved, most primary care physicians in the United States are still not trained on how to treat them, said Dr. Alex Keuroghlian, director of the National LGBT Health Education Center, which educates health care organizations on how to care for lesbian, gay, bisexual, transgender and queer people.

This is a particular issue for nonbinary people who may not fit a doctor’s or insurance company’s understanding of gender. A nonbinary person who wants to go on hormones or have surgery may still be denied care because they do not present a desire to be clearly male or female, according to health professionals. The 2015 U.S. Transgender Survey found that 31 percent of nonbinary respondents had experienced an issue with their insurance coverage for hormone therapy in the previous year, compared to 24 percent of the general transgender population.

Mere Abrams, 31, a licensed clinical social worker in Palm Desert, California, who identifies as transgender and nonbinary, underwent a mastectomy in 2015 and has been on low-dose testosterone since 2014. Abrams said their therapist had to write in referral letters to their surgeon that Abrams was masculine-identified, rather than nonbinary, so Abrams wouldn’t be denied treatment.

Abrams, who connects nonbinary people with health care providers through the website onlinegendercare.com, said many doctors don’t know how to work with this population because they are not included in the current international transgender treatment guidelines, known as the World Professional Association for Transgender Health Standards of Care.

Mere Abrams Courtesy of Mere Abrams

“The guidelines do not provide medical providers with any framework for understanding the pathway a nonbinary person may want to take medically,” Abrams said.

Radix, a co-chair of the committee that is revising the guidelines, said the next version will contain a chapter on nonbinary care, but the specifics are still under review.

“One of the reasons why we need to have a chapter is because insurance companies and clinicians are sometimes reluctant to provide care for people who are nonbinary identified,” Radix said.

For Rivas, the biggest obstacle in accessing care was the five weeks it took to get an appointment at the Los Angeles LGBT Center, because of a long wait list.

Rivas was nervous before the appointment, but the doctor was familiar with microdosing and explained the possible risks and side effects, which put Rivas at ease. Rivas left the center with a small tube of testosterone ointment that can be rubbed directly into the skin. Rivas, who is currently a part-time student without insurance and between jobs, received the hormones at a discount through a program at the center.

Candace Lopez and Marisa Rivas. Jim Seida / NBC News

In time, Rivas’ body will slowly masculinize — something Rivas is both nervous and excited about.

“I’m searching for whatever it means to be aligned with myself internally and externally,” Rivas said, “and I think the day I see that that matches, I’ll feel like a lot of things will have made sense.”