I knew from a young age that I saw myself differently from the way others perceived me. Just as quickly as I noticed this difference, I also learned about the unforeseen complications of being different.

By the time I was five, I questioned the gender role I was supposed to play. But it wasn’t until I was 14 years old that I first heard the word “transgender.” I spent the next six years researching policies, legal paths, and what transitioning could look like for me; internally debating if I could accept the risks of transitioning socially, physically, and spiritually. By 20 years old, I accepted the only way I could live a fulfilled life was by taking the leap and coming out as transgender.

At age 24, within months of returning from the Peace Corps, I started Gender Affirming Hormone Replacement Therapy (GAHRT). Testosterone, in my case. Months later, I started the legal process of changing my name and gender marker — the F, M or X we have on our forms of identification. Almost a year after starting GAHRT, I underwent my first gender-affirming surgery—a double mastectomy. In that year period, I had accomplished -and recovered from- most of my personal transitioning goals.

Gender has played a major role in my ability to access other forms of health care—but not in the way one may assume. Society has placed an inflated emphasis on gender, and it is that emphasis – and not my body – which has created such challenges in accessing the health care I needed.

For instance, in addition to navigating my gender identity, I live with Polycystic Ovarian Syndrome (PCOS). PCOS is caused by a hormonal imbalance in assigned female-at-birth (AFAB) individuals and is one of the most common causes of infertility, as well as increases the likelihood of developing diabetes, heart disease, high blood pressure, sleep apnea, and other long-term health issues. An ultrasound confirmed the presence of cysts when I was 14 years old.

The New York Times released a recent piece discussing the growing controversy around treating gender-diverse individuals who seek therapy. The field of gender healthcare has grown in the past decade. With 1.6 million people in the United States, ages 13+, identifying as transgender, more voices are being uplifted and stories shared. Here are a few of my stories, told from the perspective of an agender, transgender human who was assigned female-at-birth. They illustrate the “invisible” barriers I have faced—not because I dared to transition to another gender, but because I dared to challenge society’s understanding of gender.  

Not Fitting In

From a young age, I rejected anything deemed feminine and instead presented in a masculine manner. I kept my hair short, wore “boy” clothes and pursued more masculine-associated activities. I was often confused for a boy until I reached puberty.

Once puberty began, my gender was anyone’s guess. “What are you?” was a question I often heard from bold strangers. I saw looks of confusion from others.  People would ask: “What are you? A boy or a girl?” I often responded: “Why does it matter?” The message of open judgment was clear: I was not existing correctly, something was wrong with me, and I had to change.

When I was nine, surrounded by a line of women waiting to use a bathroom stall, a woman in her mid-40s turned around to ask me if I was in the right restroom. She felt the urge to verify if I was indeed a girl. The message was clear: I did not belong. This was obvious and I was old enough to be called out for it.

With each comment, my sense of safety diminished. Initially, I moved away from femininity; it was my choice and in my control to change. However, when others rejected me, accepting femininity also meant proving I was worthy of it. At such a young age, my sense of tangible rejection and loss of control became internalized. With each additional experience, it compounded.

It also had other clear health impacts. Despite living with unmanaged PCOS since I was 12 years old, I did not see a gynecologist until I was 21. I felt safer living with the pain and long-term implications of having an unchecked condition rather than establishing and maintaining regular care. Even though I was AFAB, I did not belong in women’s spaces. To take up space felt equivalent to announcing to the world: “I may not look like it, but I swear I need to be here. Please respect me.”

The Transition

I spent the last six months of my Peace Corps service researching state laws on LGBTQ+ discrimination, medical facilities with a focus on LGBTQ+ care, and the process to change my gender marker on official documents.

The Affordable Care Act (ACA), which went into effect in 2016, prohibits most health insurances from discriminating based on gender identity. Massachusetts, where I lived at the time, implemented a similar anti-discrimination policy in 2014. In addition, Massachusetts was one of the states with the most legal protections for gender identity; housing, employment, school, healthcare, etc. Boston is also home to Fenway Health, a medical center focused on LGBTQ+ health.

While transitioning is complicated, my research and preparation resulted in a relatively smooth process until I started changing my gender marker. Even though Massachusetts implemented an anti-discrimination policy and required most health insurance companies to cover parts of gender-affirming surgery, it was still legal for some private insurance companies to deny treatment and/or care based on gender incongruence. A male-identified subscriber will not need a pap smear and a female-identified subscriber doesn’t have a prostate, for example.

The irony in that assumption is profound. While I changed the gender marker on my legal papers from “F” to “M”, my physical body stayed the same. It wasn’t me who changed, it was the world finally agreeing to recognize the real me.

Within four months, I changed my name and gender marker on everything except my birth certificate and health insurance. Why? First, birth certificates fall under the jurisdiction of the state in which they are issued. I was born in Louisiana – a state with demanding requirements. And I intentionally chose to not change the gender marker on my health insurance. I was scared my health insurance company would see the “M” gender maker and use it to justify denying the surgery I needed to feel like me: a double mastectomy.

The Uncertain Future

There are prerequisites before each step of the journey that I and so many others have undertaken. Letters from therapists and primary care providers, social expectations to fulfill, and discussions of the known and unknown long-term implications of transitioning.

In my initial consultations to start testosterone, I was cautioned to seek a hysterectomy within five years. High doses of testosterone will stop menstruation, among many other affects. In 2014, the belief was that without a period to shed the internal lining, the build-up could lead to an increase in the risk for endometrial cancer. Since then, research has shown this is “a theoretical risk”— and currently, a hysterectomy to prevent endometrial cancer is not recommended.

In 2019, I underwent a total hysterectomy with bilateral oophorectomy and salpingectomy. I had my uterus, cervix, ovaries, and fallopian tubes removed. My surgical report revealed my reproductive system was decorative, my organs served no purpose. Worse, they were causing me pain and the estrogen produced by my ovaries was affecting me physically, emotionally, and mentally.

Yet despite the damage from PCOS and subsequent infertility, my surgeon saw nothing wrong with my organs. There was no medical necessity for the hysterectomy beyond my gender dysphoria. In an ironic twist, I had an easier time getting my hysterectomy covered through insurance than if I was a cisgender woman. In that case, an insurance company would have deemed this surgery elective and denied it.

I have not seen a gynecologist since the surgery, mostly because I don’t know if I need to. I have consulted with my surgeon, primary care provider, hormone provider—a transgender man himself—and others. No one seems to have a definitive answer. The research is too new to have answers for the transgender population.

Throughout my transition, societies’ expectations created obstacles to my care. It is possible to separate gender from healthcare—and we should. The existing emphasis on gender distorts and oversimplifies the individual person in need of care. Health care providers should respect and honor the complexities of each individual instead of simplifying the care they need based on societies’ categorization of their gender.  Giving individuals the autonomy to make their own health-related decisions, and support once they do, is essential to improved outcomes for not only transgender people, but for all.