Amyhinton's Blog

What's in the genes?

My Journey: Two intersex paths that merge into one story

Dear Reader,

Telling my story is rather challenging and difficult. Sometimes I wonder why anyone might want to read about me. I remind myself that I have a story to tell to hopefully inform people about intersex. I was born female and intersex and until my 21st year, I had did not know the complete truth of my condition. My condition as diagnosed is Androgen Insensitivity Syndrome. I suspected my difference when I was seventeen years old, however, it was not until 2003, for years later, to gather facts and courage to get the guts to talk to my mom about my condition. Her answer changed my life and set me on a course that brings me where I am today.

My story is a simple narrative that I will do my best to explain. There are two stories to tell. The one I grew up believing and the one really happening. Sometimes the lines blur as to truth and fiction, but I think I have most of the facts straight. Let us hope.

On a serious note, being intersex is not something I am proud of, but it is also not something I am ashamed of anymore. I tell this story because I want people to learn. Of all the things I thought could be different about me, having XY chromosomes was not one of them! I started and stopped writing this narrative many times.

I am torn between what to say. There is so much to say. There is the shame, secrecy and self-loathing one might feel, which ends up sounding like a huge pity party, but it is the truth of what was going on inside. There is also the question of how much description should one give. Should I paint a picture of what I might look like with my clothes off? Or is that sacred information for only the person I am intimate with? The lines are sometimes confusing as to what to say or not to say.

I am also torn between explaining my story, while still being sensitive to sexual minorities. If you took my story and put it next to a transgendered person’s story, you will probably find similarities how we describe our feeling different. You might even find those “different” feelings in the gay and lesbian community. I want to be sensitive to those thoughts and feelings, but I also must explain that my condition is medical. Many in the intersex community would not wish to be associated with the LGBT community, but I think we both have important stories, and I am grateful I have both these communities to provide me with support and love. Additionally, there are some who would replace intersex with differences (or disorders) of sex development. And that is okay. I can into my awareness with the term intersex, so I’ll use that.

I was born with a female body, but I have XY chromosomes. I was born without a functioning reproductive system. To describe this you will probably find similarities to your own story or to stories you’ve heard from friends and loved ones. However, my story is from my own perspective, and I can only speak for myself.

Last, I want to thank the support I’ve received from family and friends throughout the years who have accepted me for who I am regardless of my condition. They were willing to listen and learn whenever I would talk about my intersex condition. I am thankful to having such a wonderful support group of other intersex people all these years to help me cope when family and friends could not.

Thank you – Amy

Note: This narrative includes issues of genitalia and sex in a descriptive manner, so please use caution when reading.

My Story

When did it all begin?

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On May 21, 1982 I was born in Laurel, Mississippi. My parents were typical working class people who had known each other since early teens. My dad was a truck driver and my mom did not really have a profession until a few years later when she got her cosmetology license. My parents dated briefly in their own teenage years during the summers my mom came to visit. Although she was born in Laurel, her family lived in Mobile, Alabama. They would both go on to marry other people. My mom had two girls from her previous marriage, and my father had a step-son from a previous marriage he raised. By chance meeting years later when they were both single, my parents married, and I came along one year later.

 At the time of my birth, the doctors did not see any difference with me physically. They probably had no cause for alarm. I was my mom’s third child, and my delivery was rather quick. To my knowledge no one knew about the chromosomes that made up my DNA. No one knew about my XY chromosomes.

 Around the age of 4, my mom noticed a lump in my lower abdomen. This alarmed her enough to take me to the hospital, and an exploratory surgery was scheduled. The doctor discovered while exploring inside me that I had no reproductive system. The only thing he found was two masses. These masses would later be called gonads. However, at the time they were unknown masses. In an extraordinary move for the time, the doctor left my gonads in tact and only took biopsies of them.

 After testing the biopsies, which included a genetic test, the report showed that I had XY chromosomes. My unknown condition was referred to doctors in our state capital. A geneticist and endocrinologist took my case. I went for an entire week to have tests ran. The doctors concluded I had what was called testicular feminization syndrome. They had pulled this information from a pediatric endocrinology book. This is interesting because later when they gave me copies of my papers and I saw this, I would comment that I already had viewed this same report.

 After the week was up we went home. The doctors chose not to do any additional surgeries or treatment. It was agreed that I would come back before I began puberty to begin hormone replacement therapy and regular checkups. That never happened. I never went back to the doctor. I cannot say if my family was scared or just wanted to assume I was perfectly normal. Regardless, I did not go back. Another possible contributing factor was that my father was really sick by this time. He was dying of a heart condition, so he was constantly in and out of the hospital, so perhaps it was the lack of insurance and the lack of time to consider taking me to the doctor.

 The next important milestone in this journey was when I was eleven years old. My mom and I were driving home one day. I suppose I might have been talking about girls getting their periods at school. My mom told me that I could not have children because I did not have a uterus (her words my have been womb where babies are made). She told me I would not have a period and my condition had no name it was so rare. I believed her because that’s what we are supposed to do. Besides I was tomboyish, so the idea of a period seemed gross and bothersome to me.

 Between the ages of 13 and 17 I hit my growth spurt full force. I grew a whole foot over a summer to 6ft tall. My voice deepened and my body changed. I never developed womanly curves or breasts, but I grew tall and big. During this time, we also lost my father. He was sick a long time, and he had a massive heart attack and died. It was a very traumatic experience.

 When I turned 16 years old I began working while going to school full time. I was also making good grades. My thoughts seriously turned toward college. I had no clue what I was going to do, but I knew I wanted to further my education. I did not come from a college bound family, so the idea of being able to even go was a foreign concept. To date, only my oldest sister and myself have finished four-year degrees. That is not to say my other family hasn’t excelled in their own rights, but just to say that I made that my goal to go and finish college, and I am proud of myself for finishing.

 It worked for McDonalds. I am glad of my time there. I had a lot of growing up to do. I learned about responsibility and my drive to go further in life also strengthened. Within 6 months I was working full time closing, plus going to school full time. By the time I turned 17 I was a manager. This was a complete learning experience for me, as I was not a people person. I preferred the quietness in life, but I knew in order to make a paycheck, I had to do whatever it took. So I put on a smile and did the work needed.

  When I was 17 years old, I found a letter my mother had hidden in a jewelry box. The letter was from my doctors 11 years before. They described my week stay in the hospital. They did not use the term “intersex” in the letter, but a term I’d never heard before: Testicular Feminization Syndrome (TFS). I had no clue what that meant, but I knew I did not like the term. My mother had always told me I had some unnamed condition, and I believed her.

Finding that letter started a four-year search that would result in my finding truth. Yes, now I might be okay with how things turned out, but I hated what that letter put me through. When I first found the letter I was in a bit of stock. I didn’t know what to do and I had no one to talk to about it. Who could I talk to that might understand? My family was not very open to talking about serious matters, so they were out. I had no close friends to really talk to. I felt so alone.

 I decided to research the Internet for TFS. This was still the late 90s so the proliferation of Internet in homes in rural Mississippi was still rare. I did a search, but found nothing about TFS. There were a few articles, but nothing substantial to give me a clue what I was looking for.

 Over the course of months, my searches became more intense. I searched for hours. One time I came across this article about a girl who was diagnosed as TFS, but the article also talked about cancer and mentioned XY chromosomes. I had no clue what that meant because I could not imagine myself as anything but a girl. XY meant male and I was not a male.

 Finding that article depressed me because deep inside I felt different. I never really knew why I felt so different. It was like I had a life that was not really my own. I even considered the thought that I might be adopted. I felt out of place. I believe now that I was depressed because I knew in my subconscious that I had XY chromosomes. I set out to do the one thing that would prove I was a female. I needed that reassurance. I had eventually conjured the nerve to talk to my mother about the letter I found, but she only asked me if I was female, and she told me that was all that mattered. I did not push the issue further.

 I decided to take matters into my own hands. I was not an outgoing person, so relationships had never been a possibility. I was afraid of most people, but I acted mean and sarcastic to push people away. Anyway, I managed to find someone who was not looking for a relationship but only to have sex. I wanted him to do one thing and one thing only. We met and went back to his place. There was no romance in this at all. I know this does not sound romantic at all, but I treated this very clinical.

 As he began I felt this horrible pain. I cannot describe it, but I thought it was normal at first. I had always heard stories from other girls how the “first time” was painful, so I expected the pain. The pain was so bad I asked him to stop. From my vaginal area I was bleeding quite bad although I didn’t know it at the time. I just thought I had lost my virginity. I had proved myself to be a female. This guy and I went our separate ways. I’m sure he was not satisfied with how it all ended, but I knew I wanted to get out of there.

 Over the course of the next few years I would meet other males and attempt to have intercourse, but the result was similar to the first time. I originally thought it was a gradual process; each time would be easier and less painful, which was what I had heard from the other gals. However, the pain never ended. These encounters only left me defeated, feeling ugly, feeling unlovable, and sad.

 Searches about my condition never ceased completely, but I would go several months without thinking or searching about this condition. I had a regular life to live, so I could not be consumed all the time by this condition. I was working and going to school full time, so I had little time for much else. As my high school days were coming to a close, I knew I wanted to get out of the town I was living in. However, college was still a scary thought. I had no clue how I would pay for it.

 My feelings inside were beginning to mature and develop more and more. I would never have admitted this in person, but my attractions were all over the board. I was never really attracted to males, but I knew I had to be because it’s what was expected. However, a small part of me became aware of an attraction to females. I grew up in a predominantly conservative Baptist tradition, so being gay was not a good thing. It was never going to be looked at as anything but deviant. I saw how black people were treated simply because of the color of their skin. I saw how people were vilified and treated like criminals for being different. I just wanted to be normal.

 By my senior year in high school I was 18 years old and living on my own. Personal family issues pushed me to the decision to live on my own. I was also in the top 10% of my class. School is where I excelled. I enjoyed languages, so I took Japanese, Spanish and German. My teachers encouraged me to go to college. High school was a great experience for me. Looking back I’m not sure how I managed school and worked full time as a manager, but I did manage it all.

 By the end of my senior year, although I was planning to go to the University of Mississippi (Ole Miss), I found out I would receive a full scholarship from the local junior college. This was exciting because no one in my family had ever received such an honor. I decided to put off going to school far away for a year.

My freshman year of college was very busy and tiring. I had almost no free time to do anything because when I was not at school, I was working. Working became my life. I began to realize that I needed to move forward and leave the world of work when I started devoting more time to work than school. I did not want to be one of those dropouts. I decided I would leave my full scholarship after only a year. I would go to my original college of choice – the University of Mississippi (Ole Miss).

When I started college at the Ole Miss was scared out of my mind. I’d never been so far away from home (4 hours). I only had a few friends. I was completely out of my element. I still wasn’t sure what I wanted to focus on in school. After a few trial and error courses, I came to decide on History and Political Science as my majors. However, this part of me knew that I could explore my true self if I were far enough away from home.

By now, I had 3 years of intersex research behind me, but I was still no closer to discovering the truth about myself. I finally received a break when I came across an article talking about testicular feminization syndrome. The article mentioned that there was a new term for TFS called Androgen Insensitivity Syndrome, so I went to the search engine and typed “Androgen Insensitivity Syndrome”.

There was an explosion of returns when I typed in this new search. The world opened up before me. I was completely surprised. All this time the information was there just as something else. My research explained that TFS was an archaic term, and AIS was the new term. However, AIS also explained that “women” affected with this condition had XY chromosomes. I was confused. How was that possible? The only people I knew who lived differently from their gender was transgendered people. I thought I would have to change genders.

It seemed that every search would keep bringing me back to the XY chromosomes. I was not completely convinced that I had XY chromosomes. I didn’t understand how it would be possible for me to have XY chromosomes and not have a penis. I then began to wonder different theories. First, perhaps the diagnosis is wrong. Maybe I don’t really have this condition. If there were a name for it, then my mother would have told me, right? Second, maybe I was born a boy and my family changed my gender? My birth certificate said a girl, but maybe that had been changed.

Regardless of the scenario or the truth, I was completely confused. You see, in my parallel universes my mother had told me that the surgery I had at 4 years old was because of a hernia I had. I was a month late being born, so I weighed 10 lbs. at birth, which my mother said caused hernias in my lower abdomen due the to strain of giving birth to me. She explained the week hospital stay at the age of 4 or 5 as having tests leukemia because I had frequent nosebleeds.

Nothing was adding up at this point. Maybe there were lies. I was angry and sad. I just didn’t know what to do. I kept on reading and reading all I could about this condition. I also found websites with people’s personal stories. I read stories of people describing their thoughts and feelings leading up to finding out the truth of their conditions. These people were describing my own thoughts and feelings in detail. It all made sense, but I still did not know the truth.

I knew I needed to talk to my mother more, but I was scared. I had pretty much convinced myself that I had XY chromosomes, but since I had never been tested (so I thought), I thought I would deliver my mother devastating news that I needed to have a genetic test done. I was not at the point to talk to my mother about my condition. I did want some answers. Before I talked to my mom, I had one more search – to find the doctors who initially treated me.

I searched campus directors to find names of my doctors from 1987/8. I was afraid they would not be working at the hospital. I found emails and sent each doctor a letter. Their reply was that they did have someone at their hospital at that time with my name, but I would have to come for an office visit before they would give me any information.

I now had to talk to my mom even though I was dreading the conversation. It took me a few months to get the courage to talk to her. But I did one evening. I told her I wanted to talk to the doctors that treated me years before. I did it under the guise of making sure I was okay and nothing was wrong with me. We talked for a while. I finally got the courage to talk to my mom about the possibility that I might have XY chromosomes. I thought I would be delivering some shocking news.

However, my mother answered, “I already know that answer, you do.” My world crumbled. I didn’t go into hysterics and cry, but I was also in shock to know the truth. To finally know the truth just gave me feeling of relief and dread at the same time, I knew things would never be the same. My thoughts go back to the day four years prior when I found that letter. Those four years just merged into one. I had finally found the missing piece of my puzzle.

To say life was great after that would be a mistake. It seems that although this was the answer I had been seeking for a long time, I also felt like I had said goodbye to a piece of my soul. Where did this leave me? Would I embrace my XY chromosomes, or would I become more feminine? I did not know. The future scared me.

I also dealt with the fact that my mother knew all these years and did not tell me the truth. I was hurt and felt betrayed. I felt much pain and agony could have been avoided if I had just learned the truth. Analyzing my problems and understanding everything I was going through had not come full circle. I spent a lot of time being alone and feeling depressed. Looking in the mirror was painful because I kept searching for a boy that was not there.

Over the summer I stayed at college taking courses. Now that I at least knew the truth I could focus on real research. My searches lead me to an online support group. I had to submit my biography, as the group was private to only members with similar conditions. I explained my current situation; being told the truth of my condition.  I was only expecting an email back. What happened next really changed my life.

I received an email within a few days with an invite to a Yahoo group. The new group of people I found was amazing. All of the sudden I had people who understood my condition. I didn’t have to try and explain why I was sad because they knew. I had a place I could voice my life and my problems, and I had a group of people who could answer and give advice the best way they could. These people saved my life.

I grew up in a world where women got married and had families. Yes, some might have careers, but their families seemed to be most important. I felt alone and lost in the world because I did not know where it left me. A woman just having a career and no family was a foreign concept where I was from. I keep saying it but the only way to describe it is feeling lost. I hated my body for betraying me. I hated everything about myself. I thought there would be only one option left for me. To end it all.

By this time in my life I had rejected higher power. I felt there could be no higher power because what higher power would inflict such cruel lives on people? I felt alone and abandoned by everyone, everything, and every power. My days were spent being sad and scared. I would be fine and walking to class, then the next minute running back to my room because I had an image in my head of people looking at me and wondering what sort of freak I was. These were my dark days. And even though my support group was there for me, I still had to go through these sad feelings. I had to deal with my anger, frustration and sadness. I felt overwhelmed and it was too much to handle.

I did learn from the group that the terms used to describe people with my condition and other conditions under one umbrella were called intersex. We were intersex people with intersex conditions. In a weird way I began to feel a part of something bigger than myself. My saving grace so to speak came when I finally realized that I was not meant to have children, but I was meant to father children. That realization made me stop (or began my process of stopping) focusing on the uterus and female reproductive system I was never meant to have.

However, I still had to come to terms with my body. I, like many with my condition, was born with what appears to be female genitalia. I passed the female test so well when I was born the doctors marked “F” on my charts. No one had any reason to believe otherwise. I guess some fetal development understanding is in order.

In utero development, the fetus begins as this mass of cells, tissues, muscle and skin that takes on a human form appearance. In development where the genital region will be a cleft forms. The DNA of the fetus determines what will happen during that development. In terms of the “normal” fetus, if it is XY then the cleft tissue will fuse together forming a scrotal sack. Internally, there are two masses of tissue that will form testicles and descend to the scrotal sack. Tissue at the top of the cleft will grow and form into a penis.  The body will also create the male reproductive system.

Now if a fetus has XX chromosomes, then the development of the fetus will go a different direction. The cleft of same tissue in the XY fetus will separate to form the outer labia (what most people call a vagina). Internally, the gonads will form into ovaries and ascend up. The XX chromosomes also dictate the body to form the uterus, fallopian tubes, cervix, and vaginal walls leading out of the body. At the top of the cleft of same tissue that would have formed a penis, the XX chromosomes dictate the tissue to form a clitoris and remain small.  The female body is formed.

However, in the case of an intersex baby with AIS, the XY chromosomes are ignored somewhat. Androgens (testosterone) are hormones that help in the development of the male fetus. When the body is insensitive to androgens, then the DNA roadmap is ignored. What happens is the body remains in this female like form. In most cases, the cleft separates like a female and a blind ending vagina, just a few centimeters long will form. The tissue that would have become a penis does not mature and stays appearing as a clitoris.

You will note that I talk only of AIS because that is my condition and the one I am most familiar. AIS is graded on a 1-7 scale. Of course, this grading is like the Nile – it is backwards. Grade 7 is called Complete Androgen Insensitivity Syndrome (CAIS). Grades 1-6 are called Partial Androgen Insensitivity Syndrome (PAIS). In CAIS the body does not absorb any testosterone. A person with CAIS looks most female.

People with PAIS, however, do accept some testosterone. Depending on the grade depends on the amount of testosterone. If a person with gonads and PAIS reaches puberty without hormone replacement, then their body can virilize upon reaching puberty. The lower the grade the more the individual looks/apprears as a male. In most cases, it is the lower grade PAIS people who end up having unwanted surgeries because at birth their genitalia is considered ambiguous.

In most cases PAIS births will result in the parents choosing to make their child a female because the doctors believe there will be no functioning penis or what is called a “micropenis”. Sometimes when the child is low grade PAIS, the parents will keep the child as a male.

When the body matures, the reproductive organs and outer genitalia also mature. This is most evident in “normal” males and females because their bodies respond to hormones. However, an intersex person can go either way. Their body does not mature, their outer genitalia will grow very little pubic hair if any at all, and what resembles the clitoris and vaginal walls do not mature either.

The blind ending vagina can be just a few centimeters long or a few inches. Each person is different. In some cases when the doctors have discovered early on that a person is intersex then they will start the person on a treatment of dilators. Basically these dilators will stretch the “vagina” to an acceptable length for when the female marries a male and begins intercourse. This would have been important information to know. I learned that because I was not properly dilated, I could have been damaged during my attempts to have sex, which could have caused serious issues such as tearing or internal bleeding.

My time in the support group learning about the different people was amazing. I learned how people were open and honest about themselves in ways they could not be with anyone else. However, I also understood why the shame and secrecy existed. People learning about fetal development were stuck in binary gender thoughts; only male and female. And the idea that anything else might exist or could exist was a foreign concept.

The Summer I found out the truth of my condition was drawing to a close. I knew I had to go home. My doctors’ appointments were scheduled during my break from school. This would also be my first time home since my mom told me the truth. My oldest sister was planning to go with my mom and me to the appointments. Part of me was relieved, but another part of me was scared. I wasn’t sure what would happen when I walked in the doctors’ office.

When I got home my mom, sisters and I did spend some time talking, but not productively. They wanted to know if I planned to become a male. Not sure where they got this from, but I guess they didn’t see the point of me going to see these doctors if I didn’t want to become a male. Part of me wanted to scream at them because they knew about my condition, but they didn’t want to learn about it. I wanted to learn about my condition because I needed to know information about who I was.

There were so many questions to ask. Why was I like this? How did it happen? Why was there no one else in the family like me? AIS was considered passed through the mother’s X chromosome. I learned from my support group that when there is one family member with an AIS condition, there would be more. But all other females in my family for several generations had children, so no one was like me.

The day we went to the doctor in Jackson, I was completely a nervous wreck. I had no clue what I was going to learn. I hadn’t had much experience with doctors in my lifetime, so I was scared. When we met with the first doctor, my mom, sister, and me all went into the room. The doctor gave me a packet of papers with my medical records. These would be the papers that defined who I was.

I guess in my mind I had pictured this doctor asking me questions about my life and giving him an update on the past 17 years. I figured he might want to learn about me. Instead he barely talked about me being intersex or any questions or concerns I had. He seemed to be mad because my parents had not brought me back to see him when I was 10 years old. That was something I had no control over.

Instead of me having my questions answered, my mom and sister began asking questions. Trying to figure out if any future kids in this family could have a condition. I felt like I had no control over my condition or my life. It was the worst feeling ever.

By the time the second appointment came, I asked my mother and sister to not come in with me. I wanted to talk to the doctor alone. I thought perhaps I could really talk to him. He gave me some information about genetics and my condition. He asked for an update regarding my life, but it was all very clinical. We talked, but there were no conclusive results in my quest.

The day left me feeling exhausted emotionally. I was ready to go home. I just didn’t think I had it in me to go any longer that day. Of course, we still had shopping and lunch that my sister came for. I cannot accurately describe the feeling I had after those appointments. It was the most awful feeling in the world. I knew I would have to tackle my quest alone without the help of my family or anyone else. My support group seemed to me my constant refuge, but they were all far away with their own lives.

I still hadn’t completely embraced that I was intersex, but I knew that I didn’t want there to be shame in what I had no control over. Towards the end of the first year I found out the truth of my condition was also the same time that a gay marriage amendment was being debated in our nation’s capital. Our school newspaper had taken up the cause of debating people for and against.

At that time I had not confronted my sexuality completely, so I was not a declared straight or lesbian person. My friends described me as asexual. My best friend and I sat down one day and wrote a letter to the editor. In this letter I explained what I was AIS, which meant I was born with this condition. I explained how society only sees what it wants. If I were with a male we would be socially heterosexual and acceptable, but genetically homosexual. If I were with a female we would be socially homosexual and unacceptable, but genetically heterosexual. I said that people should not be judged on the basis of their gender, but whom they love.

That was my first time to go public about my condition. For the most part the feedback was good. There was some negativity and words like “freak” and “mutant” being thrown out. However, the best thing that happened is that one of my gay friends invited me to a campus Gay-Straight Alliance meeting. It was a great experience and everyone treated me very kind.

Over the course of months I gained new friendships that would endure throughout my college experience. I was happy to have these people as my friends. We would set records at the school and as a group. Our school was celebrating the “Opening Doors” from the Civil Rights Era times when James Meredith was trying to gain entry as the first African-American. We gained entry to open a dialog about gay, lesbian and transgender people, as well as, intersex.

I seemed to be doing well with who I was and the direction my life was going. As my second year in school came to an end, I was very happy. I had friends and lived the college life. My summer began in the worst way. In the course of a week two family members died and I was called home. Going home was okay because I got to meet some family members I had not seen in a while. This was also around the time I would be celebrating my first year of knowing I was intersex and was part of a group who understood me.

The time at home didn’t go that entirely great. I met this cousin I don’t recall ever meeting. She was very nice and I immediately was glad we could be friends, or she treated me as a friend even though she was 30 years older than me. We talked a lot. Our conversation finally turned to me finding out I was intersex. To my shock, she told me she knew I was intersex although she didn’t know it was called intersex. Evidently, they had known for some time AND they were told by another group of family members I wasn’t that close to.

All of the sudden my feelings of shame and secrecy came back. Not because I felt my family was ashamed of me, but because in the end, I was the only one who didn’t know about my condition. I was more than devastated after learning this. I came to regard myself as “the family secret”. I did not know what to do. I knew I wanted to hurry and return to school.

Returning to school left me feeling more ashamed. Who wanted to know about me. No one would love me. However, on my return, I met someone; a girl. She and I met and talked one day. Over the course of weeks we met and talked a lot. I think we were moving toward something more than friendship. It was the first time something like that had happened to me. I was completely scared. I had to deal with the fear (and risk rejection) of telling her I was intersex. After all, she was a lesbian, would she want to be with someone with XY chromosomes.

To my surprise she took it well. Our relationship developed into something more serious and intimate. All of the sudden in that one act and moment, everything came together. Its like I understood the world, I understood my body, and I understood that I was a lesbian. Although the relationship would not last more than two years, I knew who I was, and that was a great feeling.

As my time in college was coming to a close, I was scared of what was next. I had my years of experience working with the Gay Straight Alliance and on campus in Public Relations, but I had no clue what I would be doing. I wasn’t sure where I would go from here. I knew I wanted to talk about my experience being intersex, but I was afraid. How would people react and take this. Gender identity was important to me, but how would I foster that into a discussion and learning opportunities?

I attempted to talk about gender identity and being intersex a few times on campus, but it ended not that well. I was very nervous and did not have my words right. It was a disaster. But I knew I would keep trying. This was an important issue because intersex issues were not being talked about publically. People who had the conditions were afraid of society’s reaction to them. Some were women who had been married for decades. These people were very conservative, but to find out they had XY chromosomes, they felt they were on the brink of losing everything they have. I’m sure in some ways they wondered if they were considered homosexual to be with a husband.

I graduated from Ole Miss with a degree in history and political science. My relationship was not going very well, and I was getting burnt out from school I wanted to go home. I missed my family. Shocking for me to say since I always left to get away from them. Something inside me said I needed to get to know my family again and they needed to get to know me. I was a different person. I also ended my relationship. Our time together had turned toxic. I couldn’t handle her not being open about our relationship. I had just came from 21 years of being a secret, I was not prepared to spend my next 21 years as someone’s secret. So I left her.

Unfortunately, a few months after I returned home, Hurricane Katrina hit. My plans were to come back to school after some time at home, but Katrina delayed my departure indefinitely. I wanted to be near my family.

I began searching for jobs, but no one was hiring. I took a job at McDonalds because they would hire me back. I would go in and work my way up to First Assistant. I just wanted some experience in order to get hired elsewhere. Eventually I was hired where I am currently employed in marketing and graphics.

My activism after returning home took a backseat. There wasn’t much going on in this area, and I needed to focus on being an adult. I thought it would be better to focus on my immediate future. Being intersex had gradually just become a part of me without me feeling inferior to humanity. Yes, there were days I felt crappy at the thought of being different, but we all have differences we must overcome. Why should I have this pity party for something I cannot change or choose?

I kept in contact with some folks from Oxford. I had cultured friendships outside the Gay-Straight Alliance. In 2004 a group of people got together to help form a PFLAG group (Parents, Families and Friends of Lesbians and Gays). I was so happy to see healthy productive gay and lesbian relationships that were long-term and loving. This was the inspiration I needed to know I could have the same.

After I moved back home I kept in contact with these people. In particular a few who were involved with the Unitarian Universalist church in Oxford, MS. They were friends with people at the UU church near my home, Our Home Universalist Unitarian Church. Evidently, they had people putting feelers out about forming their own PFLAG group in my hometown. I was excited at the thought, but I had not had many dealings with people in this area and being “out” as a lesbian. I was a bit scared.

I’d dealt with people in my past that were accepting, but also tried to push a religious agenda. I couldn’t handle that. The best I could do was spirituality, not religion. My own fear kept me from attending the church. However, I found out the minister for the church was gay, which opened my eyes even more. I had the opportunity to speak with him, and he was very helpful. I knew I wanted to go to the church, but making the first step was hard.

Just before I began attending church, the minister invited me to speak at his church in Tuscaloosa on the topic of intersex. I was excited and nervous because I hadn’t really told me story before in such a setting. I was afraid. The group would watch a movie and then ask questions. It actually went very well. I enjoyed doing this public discussion, and I hope in the end, everyone was helped. I felt reinvigorated to tell my story and help people understand about intersex conditions.

Since going to the Tuscaloosa function, I’ve also spoke at a similar function in Oxford, Mississippi, and I was interviewed for an article about intersex in an online publication. I am amazed at the number of people who don’t really know about intersex conditions. I’m even more startled to realize that intersex conditions only get one paragraph in most high school and college biology books. And they are usually put in a lump with genetic conditions, which includes Down syndrome; so most people think we (intersex people) have a learning development disorder.

Today, I am probably more comfortable with myself as intersex than I ever have been. However, as I get older and settled in life with my partner, I am finding myself more and more saddened at the thought of not being able to have biological children. Neither my partner nor I are from states that will allow gay couples to adopt. The best we can hope for is for one or the other of us to adopt and pray schools, doctors, etc. will recognize the other partner as a co-parent. I feel we both want a child, but it would be easier if we could have our own, but that is not possible.

However, at the heart of the matter is how I feel about myself as being intersex. Most times I hardly ever think about being intersex. I don’t wake up reminding myself I’m intersex. Many days I go weeks without thinking about it. Each time I am reminded about it, I don’t really feel sad about being intersex, just reminded. I still keep in touch with the support group. As we move in comfort of our own skins, we are finding that we’re not as in need for support as we were before. Now that intersex has gone mainstream with movies and books (Middlesex), there is less need to feel hidden.

I am just thankful I’ve had these people in my life to support and comfort me through the years. I can honestly say that if it hadn’t been for that group of remarkable people, I would not be writing this narrative.

On another note about intersex: In this past decade there has been some controversy regarding what to call intersex. Intersex has typically been used as the catchall term or umbrella term for conditions related to sexual development. This has led to an effort to refer to intersex conditions as Disorders of Sexual Development. Do I like the term? Not really. However, I have got in hot water in the recent past because I’ve been accused of supporting the DSD term.

It is not that I support the term whole heartedly, but we must have a term for diagnostic purposes, and I do not feel intersex is really the right term. Intersex has become or evolved into a political term. Similar to what queer is used for now days. It is like someone who needs a valium prescription to fly. In order to get the prescription the doctors must diagnose the person with a condition. Doctors will diagnose the person as having a compulsion; the compulsion the fear of flying. Compulsion might be mistakenly thought of as OCD or psychotic. However, the person is not really crazy, just scared of flying. That is the world we live in.

The term “Disorders of Sexual Development” is hated by some because they do not want to be labeled a disorder. I can agree. My specific condition is known as Androgen Insensitivity Syndrome, and previous my condition was known as Testicular Feminization Syndrome. I don’t want to be labeled as having a syndrome, but I also realize that it is a diagnosis. It is not really who I am. It is a condition I have, but not who I am.

As we move further into the 21st century I am sure there will be more and more controversies over intersex conditions. Right now I want to work towards a treatment where parents are not so willing to have unnecessary surgeries on their children just to make them “normal”.  Too often doctors have erroneously supported the ideas that parents should fear and shame the body differences of their children, but the reality is that children should be left alone. It should be for the individual to decide what the best course of treatment should be. Unless that child is in immediate danger, harm or pain, then he or she should be left alone.

We should not be forcing parents into shame and unwanted surgeries just because their child might be different. We must take a stand for the children who are born and who will be born with a genetic condition that leave their anatomy less than perfect. A binary gender can be established without forcing unnecessary surgeries.

I can honestly say I was a fortunate one. I spent years angry because my parents had not taken me back to the doctors. However, now I am grateful. What if doctors had removed my gonads? What if I was dependent on hormone replacement therapy for the rest of my life? I just wonder how my life might be different had there been medical intervention. Sometimes I think that it would have been better, but as I mature more I realize that I am better off now because I get to make those decisions. I get to decide when or if my gonads will be removed. I can decide my own path.

Many were not so lucky. They did not find out about their condition until later in life (40s). These individuals were not even told in a conventional manner. They found out because their doctor died or retired, and they retrieved their medical records from the office to take to the new doctor. It was there they took a peek at their records and saw things like “XY female”, “androgen insensitivity syndrome”, or “hermaphrodite”. If the doctors were too afraid to tell someone of their true condition, then it must be bad, right? It must be shameful and worth hiding.

I am thankful for my life today. I have someone who loves me, and I love her in return. Without finding out about my condition and coming to terms with being intersex, I would never have found this wonderful person in my life. And regardless of the fact that we cannot be married because we are labeled lesbians, I am just so happy that we get to share our lives together. Although some of our intersex group has went our separate ways and lost touch, I still hold intersex brothers and sisters near and dear to my heart. The love and support these unsung heroes have given me through the years has truly changed my life. Being intersex was once a mystery, then a curse, and now it is my blessing.

Since writing this article, I have moved to Cincinnati, Ohio, left my job of eight years and now work as an instructor, and I legally married my wife. As of June 2015, our marriage is recognized in 50 states, and hopefully all counties in those states soon enough 🙂 

8 thoughts on “My Journey: Two intersex paths that merge into one story

  1. David R. Craven on said:

    Amy, thank you for posting this. You have deeply touched my heart.

  2. christopher on said:

    thank you soo much for sharing your story Amy
    xoxo

  3. Alison on said:

    Thank you so much for sharing your story. I found it very educational and it really gave me a better understanding of what you have gone through and what being intersex truely is.

  4. Nice story and with me, I am a biological born intersex/DSD person with Kallmann’s syndrome

  5. Amy, thank you so much for telling your story. We have a young friend who is intersex and I would like to suggest the yahoo group you mentioned as a source of support–can you post (or email me privately) to let me know which group it is? I tried doing a search but it is very hard to weed through all the groups which are welcoming to intersex and narrow it down to the ones specific to intersex. Also, would you say the group could benefit friends of the intersex individuals? If not, do you know of resources available to folks such as ourselves? We have family members trying to help but it is such a unique situation that guidance would be valuable…Thank you in advance for pointing us in the right direction.

  6. Thomas Joan on said:

    Thank you, Amy, for sharing your story! I admire your honesty, your courage and determination, and it pleases me to read that you are well and happy.

    Every person has a story and yours is exceptional. Best wishes always.

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