I knew from an early age that I saw myself differently from how others perceived me. Just as quickly as I noticed this difference, I also learned the unforeseen complications of being different.
At the age of five, I questioned the gender role I was supposed to play. But it wasn’t until I was 14 that I first heard the word ‘transgender’. I spent the next six years researching policies, legal pathways, and what the transition might look like for me; discuss internally whether I could accept the risks of a social, physical and spiritual transition. At 20, I accepted that the only way to live a fulfilling life was to take the leap and come out as transgender.
At age 24, a few months after 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 that we have on our ID forms. Almost a year after starting GAHRT, I had my first gender-affirming surgery – a double mastectomy. During this period, I had achieved – and recovered from – most of my personal transition goals.
Gender played a major role in my ability to access other forms of health care, but not in the way one might assume. Society placed an overemphasis on gender, and it was that emphasis – not my body – that created such challenges in accessing the health care I needed.
For example, in addition to navigating my gender identity, I live with Polycystic ovary syndrome (PCOS). PCOS is caused by a hormonal imbalance in the woman assigned 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 problems. An ultrasound confirmed the presence of cysts when I was 14 years old.
The New York Times published a recent article on the growing controversy surrounding the treatment of gender-diverse people who seek therapy. The field of gender health care has grown over the past decade. With 1.6 million people in the United States, ages 13 and older, identify as transgender, more voices are raised and stories are shared. Here are some of my stories, told from the perspective of a agender, transgender human who was assigned female at birth. They illustrate the “invisible” obstacles I faced, not because I dared to switch to another gender, but because I dared to challenge society’s understanding of gender.
From an early age, I rejected anything considered feminine and instead presented in a masculine way. I kept my hair short, wore “boyish” clothes and pursued more masculine activities. I was often mistaken for a boy until I hit puberty.
Once puberty started, my gender was uncertain. “What are you?” was a question I often heard from daring strangers. I saw confused looks from others. People asked, “What are you? A boy or a girl ? I often answered: “Why is it important?” The message of open judgment was clear: I didn’t exist properly, something was wrong with me, and I had to change.
When I was nine years old, surrounded by a line of women waiting to use a toilet cubicle, a woman in her forties turned around to ask me if I was in the right toilet. She felt the need to check if I was really a girl. The message was clear: I didn’t belong. It was obvious and I was old enough to be called out for it.
With each comment, my sense of security diminished. At first, I moved away from femininity; it was my choice and under my control to change. However, when others rejected me, accepting womanhood also meant proving myself worthy. At such a young age, my tangible feelings of rejection and loss of control became internalized. With each additional experience, it got worse.
It also had other clear health impacts. Although living with unmanaged PCOS since I was 12, I didn’t see a gynecologist until I was 21. I felt safer with the pain and long term implications of having an uncontrolled condition than establishing and maintaining regular care. Even though I was AFAB, I didn’t belong in the women-only spaces. Taking up space was equivalent to announcing to the world: “I may not look it, but I swear I need to be here. Please respect me.”
I spent the last six months of my Peace Corps service researching state laws on LGBTQ+ discrimination, medical facilities focused on LGBTQ+ care, and the process for changing my gender marker on official documents.
The Affordable Care Act (ACA), which came into force in 2016, prohibits most health insurers from discriminating based on gender identity. Massachusetts, where I was living at the time, introduced a similar anti-discrimination policy in 2014. Additionally, Massachusetts was one of the states with the most legal protections for gender identity; housing, employment, school, health care, etc. Boston is also home to Fenway Healtha medical center focused on LGBTQ+ health.
Although the transition 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 certain parts of gender-affirming surgery, it was still legal for some private insurance companies to deny a treatment and/or care due to gender incongruity. A subscriber identified as a man will not need a pap smear and a subscriber identified as a woman does not have a prostate, for example.
The irony of this assumption is profound. While I changed the gender marker on my legal papers from “F” to “M”, my physical body remained the same. It wasn’t me who changed, it was the world that finally agreed to recognize the real me.
Within four months, I changed my name and gender 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 not to change the gender marker on my health insurance. I was afraid that my health insurance company would see the creator of the “M” gender and use it to justify denying the operation I needed to feel like myself: a double mastectomy.
The uncertain future
There are prerequisites before every step of the journey that I and so many others have undertaken. Letters from therapists and primary care providers, social expectations to be met, and discussions of known and unknown long-term implications of transition.
During my first consultations to start testosterone, I was advised to request a hysterectomy within five years. High doses of testosterone will stop menstruationamong many others other effects. In 2014, the belief was that without a period to get rid of the inner lining, the buildup could lead to an increased risk of endometrial cancer. Since then, research has shown it is “a theoretical risk”— and currently, a hysterectomy to prevent endometrial cancer is not recommended.
In 2019, I suffered a total hysterectomy with bilateral oophorectomy and salpingectomy. They removed my uterus, cervix, ovaries and fallopian tubes. My surgical report revealed that my reproductive system was decorative, my organs were useless. Worse still, they were causing me pain and the estrogen produced by my ovaries was affecting me physically, emotionally and mentally.
Yet despite the damage caused by PCOS and the resulting infertility, my surgeon saw nothing wrong with my organs. There was no medical necessity for the hysterectomy beyond my gender dysphoria. Ironically, I had an easier time getting my hysterectomy covered by insurance than if I were a cisgender women. In this case, an insurance company would have deemed this surgery optional and would have refused it.
I haven’t seen a gynecologist since the operation, mainly because I don’t know if I need one. I saw my surgeon, my primary care provider, my hormone provider – a transgender man himself – and others. No one seems to have a definitive answer. The research is too recent to have answers for the transgender population.
Throughout my transition, societal expectations created barriers to my care. It is possible to separate gender from health care – and we should. The current focus on gender distorts and oversimplifies the person in need of care. Healthcare providers should respect and honor the complexities of each individual instead of simplifying the care they need based on society’s gender categorization. Giving individuals the autonomy to make their own health decisions, and support once they do, is key to improving outcomes not just for transgender people, but for everyone.
Image credit: Two placards are held up during a pride march; Author’s picture. Photos shared by the author with his consent.