I am a neurodivergent, queer, bisexual, gender fluid, nonbinary, genderqueer, intersex (demi)woman diagnosed with Turner syndrome. This is the story of my life on the edges so far.
When I was born a doctor declared, “Its a girl!” To everyone present this seemed like a perfectly reasonable assertion. By all accounts my little body appeared to be what is considered typical for a baby girl and there were no other official options. Before I could even say anything for myself the word “female” was plastered permanently on my birth certificate, my parents gave me a culturally feminine name, and brought me home where a green room with all the essentials for a newborn were waiting for me. I was a very small baby, but healthy. Everything was going “normally” for this new Upper-Midwestern, middle-class, straight, suburban family.
As a child I gravitated toward stuffed animals, drawing, looking for doggies in the neighborhood, and assuming myself and my younger brother with elaborate games of pretend. I was the kind of kid who would pick up the Candy Land game and pretend it was a storybook rather than play the game itself. My favorite movies included Mary Poppins, The Lion King, and anything with a dog in it. A complete sense of gender had yet to take form and I didn’t really question my girlhood. At least I don’t remember doing so. I must have been too busy pretending, learning, and pestering Mommy (who is allergic to practically anything with fur) for a dog to be too concerned. Although I do remember being very vocal whenever someone told me I couldn’t do something like go shirtless, wear a suit, pretend to be a boy, or sing “the man song” from Mulan or suggested I had to do something such as like pink or play with dolls because I was a girl. I was going to play how I wanted and that was that as far as I was concerned. Looking back, I remember being a happy child who loved pretending and couldn’t do anything but be unapologetically herself. This continued even as I entered the wider world of school.
Once I started preschool it didn’t take long for the adults in my life to notice I still wasn’t learning how to recite my letters or count. As a five-year-old I was having too much fun playing and enjoying the family’s new, hypoallergenic puppy to be worried about any of this so my parents worried for me. It got to the point where my mother was concerned enough to bring me into the pediatrician’s office. There I chatted up the doctor using a larger vocabulary than expected of a small child, which left the doctor asking my mother why we were there in the first place. She then explained I still didn’t know my letters or numbers and expressed her concern that I might have a learning disability. While the doctor was surprised he assured her that I was still young, it was too early to tell if there was anything “wrong,” and I would learn eventually. This reaction reveals prevalent assumptions concerning what learning disabilities look and sound like that would come to dog me going into my formal education.
Since the general population tends to associate learning disabilities with visibly below average verbal skills and intelligence it took some time for my disability to be formally recognized as my above average verbal skills were problematically taken as signs of intelligence and therefore the absence of a learning disability. At first my teachers, while still expressing concern for my learning difficulties, had the same reaction as the pediatrician, “She’s still young. It’s too early to know if she has a learning disability. She’ll learn.” Fortunately I had parents who were excellent advocates for me and ensured I received the attention and resources I needed throughout elementary school. For a long time it was believed I had dyslexia given my tendency to write letters and numbers backwards, but I was not officially given any kind of diagnosis until much later. In the meantime, with the help of parents, teachers, special ed paras, and individual education plan caseworkers, I learned to read and write and even thrived academically with certain accommodations. By the time I was in fourth grade one of my teachers discovered I had a knack for creative writing. This positive feedback opened up a whole new world of communication for me and I started to write down the stories I had been either pretending or drawing all of my life. I even started to dream of becoming a writer like the authors of the books my mother read to me and my brother every night. The Harry Potter books in particular were abundant sources of inspiration as well as motivation to continue reading.
Along with new academic skills I also gained a fuller understanding of gender in elementary school. I grew my hair out down to my waist, started playing with the doll house my grandmother made for me in addition to my other toys, and would describe myself as a girl without hesitation. Still in terms of my gender expression I wasn’t the sort of child people called a “girly girl,” but I also wasn’t the kind of child people described as a “tomboy” either. I just lived my life as a girl somewhere in between those two labels and for the most part I was fine with doing so. At least I don’t remember my gender assignment causing me any distress or confusion in those days. At school and at home I was treated as a girl and told to expect growth spurts, breast growth, and menstruation in the coming years and had no reason to question what I was being told. It seemed to be just the way things were and I knew of nothing else. With no knowledge of options beyond the sex/gender binary I was fine with being a girl and expected I would develop into a woman in the same way as the other girls. I thought everything would go on like that forever. Then the transition to middle school approached.
Middle school came with a lot of changes in school, teachers, grading methods, routine, and classmates. All the other kids around me were suddenly growing very quickly and some of them were even showing visible signs of starting puberty. I, however, was still very short and relatively the same. At first this fact didn’t concern me or anyone around me much. My parents aren’t tall and everyone including me was under the impression my breasts were beginning to develop. Once again everything seemed to be going “normally.” For better or worse that wouldn’t last.
The signs anything other than average was happening became obvious at my twelve-year doctor’s appointment. The pediatrician’s face fell while examining where I fell on the growth chart compared to the year before. He then said he wanted to measure me again, which only confirmed what he had seen. I was already leveling off on the growth chart. This warranted a referral to a pediatric endocrinologist and a series of blood tests. A few months later a blood test revealed I had Turner syndrome, a genetic condition which in my case manifested in a 45X karyotype, nonfunctional ovaries, and a lack of spontaneous visible puberty. What we thought was breast development turned out to be only baby fat. In response to my body failing to reach expectations I was put on growth hormone injections in the hopes of reaching a height of five feet with plans to start estrogen and progesterone therapy after a few years.
Middle school was a particularly awkward time for me. My peers were changing and I was remaining more or less the same. I was never bullied, but over time I started to feel isolated and betrayed by the fact that everything adults had told me to expect as an adolescent wasn’t happening for me and I would never have the life they told me I would lead. I started to question everything I had been taught about gender and my place within it. I even felt different in some inexplicable way from the Turners girls and women I met at the support group meetings held at the clinic, which made me feel even more alone and confused. I was adrift without any references or language for what I was going through.
Then to make matters even worse my individual education plan was revoked when I was in the eighth grade because I was receiving good grades. As far as the administration was concerned my academic success meant I no longer needed accommodations. I, on the other hand, knew my academic success was an indication the accommodations I was receiving were effective and I still needed them. Even then on some level I knew I was being punished for being on the edge of what society constructs as disabled subjects who are deserving and in need of accommodation and which are not. Fortunately my parents and teachers agreed with me and took steps to ensure I received the help I needed for the rest of my time in middle school and going into high school. My parents were shortly after these events made aware of the option to receive accommodations through a 504 (a provision of the Americans with Disabilities Act), which meant I needed an official diagnosis.
Fortunately, it didn’t take long to receive a diagnosis. After a few hours of tests the following summer a neuropsychologist diagnosed me with nonverbal learning disorder, which is common among people with Turner syndrome and usually presents itself in the form of low nonverbal skills, issues with spacial reasoning, social difficulties, slow processing time, and perfectionism as well as compensatory strengths in verbal skills. The diagnosis explained so much. It explained why making friends had always been so difficult, why it took me longer than most to learn new information and complete various tasks, and why I could be such a perfectionist particularly with my schoolwork. It also legitimized my need for accommodations in the eyes of the school’s administration going into high school, which was a relief.
Life improved in high school. I took advantage of opportunities to travel abroad, cut my hair to a more comfortable length, wrote for the school newspaper, gained the confidence to take advanced placement courses in European history and English despite my parents’ initial discouragement because of my learning disability, and still found the time to write my first attempt at a novel. Plus graduating from growth hormone replacement therapy to estrogen/progesterone replacement therapy allowed me to catch up with my peers in terms of physical development, which helped to resolve a lot of the social awkwardness I had been experiencing. At the same time this transition also meant going through a rough adjustment period. After starting a regiment of “birth control” pills to induce menstruation it took time to find the right medication, which meant I had issues with irregular periods. I remember my first period was at the age of sixteen and lasted for a whole month and it wasn’t the last time either. For a while I can recall having a long period like this roughly every three months and would need to go on progesterone for ten days to stop it. This lasted until my doctors and I finally found the right balance of hormones.
Still through all of its difficulties and benefits going on estrogen and progesterone replacement therapy seemed like the next logical step at the time. I had been told all my life I was a girl, would grow breasts, menstruate, and be attracted to boys. Going on this medication was presented as the next step in the treatment of Turner syndrome to ensure all of those steps happened for me. I had no resources to explore other options or seriously question any of the messages I was receiving about my gender and my body from doctors and the larger society. All the literature I read on Turner syndrome upon my diagnosis stated only girls had Turner syndrome, all of the people diagnosed with Turner syndrome I met identified or at least presented as girls and women, and no one ever made any references to anything beyond the binary or how you can still be a woman without breasts and a menstrual cycle. There was certainly no mention of sexuality in these materials let alone people with Turner syndrome who are not heterosexual. The only option at the time was deference to parental and medical authority, which meant adherence to certain cultural beliefs and expectations. This included the cultural belief that to be a woman is to have certain secondary sex characteristics and exclusive attractions to the “opposite sex” as well as the expectation that this category of “woman” is one I must belong to unquestioningly and unambiguously for the whole of my life because a doctor said so after a quick glance at my genitals when I was only seconds old. Given all these factors the decision to go on hormones was not really a decision at all. There was no real discussion about it, no consideration of how my identity might develop, nothing.
All the while I went forward with hormonal treatments and still felt different in a way I couldn’t explain. Most of my peers loved wearing dresses and putting on makeup and never expressed a desire to wear a suit as well as dresses on certain occasions, go without makeup most days, keep their body and facial hair all the time, or even feeling ambivalent about their breasts at times like I did. Even though I knew I could still be a woman and choice not to shave, not wear makeup every day, don a suit, and feel indifferent about my breasts sometimes, in my case there seemed to be something else going on at a deeper level that I could not explain. All I knew was no one seemed to feel the same way about their gender I did and it left me wondering what it all meant. Why am I not like the other girls? What’s going on with me? In short I was still confused, but having no words or role models to turn to all of these questions were buried underneath massive piles of internalized oppressions, fear, and insecurity.
Looking back on what this time was like I have a memory of my teenage self lying awake in a hotel bed with a burning question. I can’t remember exactly how old I was or where I was staying or why I was traveling. All I know is I was probably in my mid-teens and was likely traveling with my family on one of our annual family vacations. Lying there in the dark I began to wonder if I was bisexual. At the time it was difficult for me to say anything on the subject since I didn’t have much experience even in the way of crushes on anyone, male or female. In the end I concluded I was not bisexual. I just couldn’t think about being different in more than one way let alone begin to contemplate the nuances and complexities of being differently gendered specifically. This mentality continued for years.
What finally saved me was the coming out of a family member. Shortly after I turned sixteen one of my grandparents came out to me and my younger brother as a transgender woman and almost immediately we saw the parallels in our journeys. I can still remember the two of us sitting together on my parent’s family room floor and talking about our experiences with hormone replacement therapy the same day she came out to me in person. Finally, I felt understood. Looking back, I was probably identifying with her on an even deeper level as my own identity was developing in a direction more similar to my bisexual, transgender grandmother (who I now call Gran) than the rest of my heterosexual, cisgender family members. Still I needed language to explain it.
The first word I gained was intersex, which refers to those who’s chromosomes, hormones, gonads, and/or genitals are not considered standard for male or female. I was a senior in high school and had agreed to participate in a panel on families and gender transition along with both of my grandmothers and my aunt. In preparation Gran had written our bios for the event. She showed me mine, which described me as a heterosexual, cisgender woman. Gran then asked me if I felt that was accurate and I said, “Yes.” At the time I was very inexperienced sexually, had only just learned of the term cisgender, and had absolutely no concept of the variety of genders besides male and female out there in the world. I just didn’t know there were any other words to describe me. Then Gran surprised me when she said she wondered if I identified as intersex. Next thing I remember I was researching all I could about this new term and was stunned to find how much it fit how I felt about myself, my body, and my experiences as a person diagnosed with Turner Syndrome going through puberty with synthetic hormones. At the same I felt I had been kept in the dark about a significant part of my identity. All of my life there was a word for who I am and a much wider community of others like me and no one told me. No one told me there were entire groups of people like me who’s bodies didn’t quite fit into the narrow categories of male and female. Once I knew of the wider intersex community I couldn’t completely avoid the questions this new terminology and the diagnosis I had received years earlier posed for my identity: Who am I? What am I? What does this mean for my gender, for my womanhood?
Meanwhile I was also starting my first romantic relationship with a boy. Looking back, we weren’t compatible, but at the time it seemed like a good fit and I still don’t regret it. Yet I can now acknowledge I stayed in that relationship for as long as I did partly out of my subconscious fear of rejection on account of my intersex status and deep need for affection as reassurance of my worth as a desirable partner in spite of my sterility. It took leaving home and gaining some independence to get past these fears and see my own worth.
College opened a whole new world. I moved to a small college town in a neighboring state, met new people, and joined groups like Student Senate, PRIDE, and the campus feminist organization. In my academic life I took classes in new subjects including religion, women’s and gender studies, and anthropology with names like Reading the New Testament Through Marginalized Eyes, Gender Activism in a Global Context, and Participating in the Divine. There I found a passion for a social justice and conducted research on hormone replacement therapy among Turners women, investigated masculinity and virginity in the Gospel of Luke, the feminine divine in Christian traditions, and conducted a series of oral history interviews with my grandmothers on their experiences as a trans-cis couple.
In my personal life I gained more confidence and eventually left my significant other after three years of being together. We had been drifting apart since I started college and it was becoming clear the relationship was no longer healthy for either of us. After a period of grief for the loss of my first relationship and the death of my dog from old age, I started to branch out and allow myself to explore the full scope of my sexuality as a newly single person. I started to really internalize the lesson that people with Turner syndrome, like everyone else, come in all sexualities and this part of my identity was worth exploring. Gradually I became comfortable with my attraction to a cisgender woman classmate I was getting to know as well as others who did not identify as men to my knowledge. I even got to the point of coming out to family and friends as bisexual starting with my grandparents and my younger brother. Throughout this process I had fairly positive reactions and overall felt comfortable in my sexual identity, but something still didn’t quite feel right. Something was still missing.
By the time I graduated from college I had some important questions about my gender. Why did people asking for my pronouns tend to leave me somewhat uncomfortable answering only she/her/hers pronouns and wondering if there was more to the story? At the same time why did answering only they/them/theirs pronouns not feel right either? Getting others to alternate between singular they and she/her/hers pronouns seemed like it would be too much of a struggle in most cases. I didn’t know enough about other pronoun options to feel completely comfortable using them for myself. I knew he/him/his wouldn’t feel right. I just couldn’t explain it. Most of the time I felt the term woman described me well, but there were also times when I felt the term didn’t fit me entirely on its own. The same was also true of the term nonbinary by itself. At least I knew the term man didn’t work. It was all really confusing, but I was beginning to develop a new vocabulary complete with words like nonbinary, genderqueer, demigender, and gender fluid to explore and help me in my quest for my authentic gender identity; an identity I like to describe these days as woman, but not strictly so and not entirely fixed either. The truth is my identity is complex and always evolving. It very well may be a month from now I will be using different words to describe my gender identity and expression and that’s okay. Everyone should be allowed to experiment and change their mind. I’ll just have to wait and see what the future holds.
For now, I am on a year-long hiatus between college and graduate school. It has given me the time to read, earn some money as a part-time filing clerk for a small insurance agent, and further explore new terminology and forms of expression. The more I learn the more questions I have, which means I am always figuring out my gender and my identity as a whole. Still I proudly live and move along the blurry borders between and beyond male and female, straight and lesbian, cis and trans, binary and nonbinary. It is a wonderful, complex, and beautiful place to live. This space is my birthright no matter what anyone else has to say about it, because at the end of the day I am who I am in all of my complexity and nothing can change that fact.
What about you? Where do you live and move? How do your identities intersect? What words do you use? What are your edges like? What’s your story?