by Francinah ‘Girly’ Phiri
When I look back on my childhood, I think of it fondly. I grew up in Alexandra township, and I would say that I was as carefree as any child would be. I had a great childhood. We were happy.
I think I was around the age of 16 or 17 years old when I first started to realise that I was intersex, although I did not know how to explain it at the time. All I knew was that I was different in some way. My friends would talk about their periods and their pubic hair, and this made me curious. I did not have any of these things. Back then, if you had not started your period by a certain age, you were accused of being naughty and sleeping with a boy, but I hadn’t slept with anyone. It worried me, and I began to wonder whether there was something wrong with me. I started questioning. I asked my friends about their periods and was told that this is something that all girls must go through. I then asked my aunt why I had not gotten my period yet, if this was something that was supposed to happen to all girls. My concerns grew despite being told that it was normal in some cases for these things to start late. So, at the age of 17 years old I went to the clinic alone for the first time.
When I arrived at the clinic, I told the nurses that I was not experiencing a monthly menstrual cycle like my friends were, and that I didn’t know whether I should be worried or not. The first thing they asked me to do was to have a pregnancy test. When the test results came back negative, they referred me to Hillbrow Hospital where I was booked for an appointment with a gynaecologist. Once again, I went to the appointment alone and my life was changed forever. The carefree nature of my childhood was gone.
After being checked and scanned at this appointment I was told that I had internal testes, instead of ovaries and a womb. My initial reaction was confusion, I was lost. I did not understand what they were saying to me. How was this possible? How could I, a young teenage girl, not have a womb or ovaries? Is this not what girls were ‘supposed’ to have? They then told me that I needed to have surgery to remove the testes from my body, and I was again flooded with the same confusion and sense of feeling lost. How could I have surgery for something I did not understand? I did not want this, so I left. I left and I never returned to that hospital again. I pushed what they had told me to the back of my mind and convinced myself that they had to have made a mistake. How could I accept something I did not understand? Something that doctors did not help me understand?
The problems began when my siblings and I relocated to Venda in Limpopo to live with my dad’s new wife. I was constantly forced to remember that I was different, forced to remember what I tried so hard to forget when I left that hospital. When she noticed that I did not menstruate, my stepmother interrogated me about it. I tried my best to explain to her what the doctors had told me – and she threw my reality back in my face. She rejected the possibility that my own body could even exist. I went back to the clinic, and I explained my experience to them. I wanted them to check, and I hoped that they would confirm that I was right, confirm that the doctors at Hillbrow Hospital had indeed made a mistake. I left disappointed. They were confused, and I was once again referred to a hospital. I went back to my stepmother and shared with her what the clinic workers had told me. She responded by telling me that my problems had nothing to do with her. After pushing me to explain my body, after shaming me, she would not even give me money for the taxi fare to get myself to the hospital. I was alone, again.
I had to hitchhike my way to the nearest hospital. It was quite far as the area where we were living in Venda did not have a hospital nearby. I was given another appointment to see a gynaecologist, but it was only scheduled for a week later. I explained to them that if I went home, I would not be able to come back because of the distance, but they told me that there was nothing they could do for me. I needed this appointment. So, with nowhere to go and no options left I decided to sleep in the hospital bathrooms until the doctor could see me. I spent night after night, for a week, sleeping in those cold bathrooms, scared for my safety and with nothing to eat. All I could do was wait. It was extremely hard, but I waited. That was how important this appointment was to me.
When I finally saw the doctor after that long week, I was told the very same thing again, that I needed to have surgery. This time, though, they told me that the condition I had could potentially become cancerous in future. This time, I could not push what they told me to the back of my mind. A new emotion joined the ever-present confusion from these visits – fear. Cancer was serious after all.
I hitch hiked back to my stepmother’s home, but upon my arrival she chased me away accusing me of having been with men throughout the week I had been at the hospital and that I was only returning to her house because I was tired of them. I tried, again, to explain to her what was going on, and once again she denied my reality and called it impossible. I had spent a week starving and alone, trying to get answers so that I could better understand myself in order to better explain and prove myself to her, but my very existence was denied – again – and I was thrown out of my stepmother’s home despite my pleas.
I decided to go back home to Alexandra and managed to get some money for transportation from a local church pastor. It was just enough to get me to Johannesburg CBD, so close and yet so far from my home, from my father. I approached a man asking for help, as I needed money to bridge this gap. He agreed to help me and offered me a place to stay for the night and said that he would give me money in the morning. I was filled with so much gratitude. I had been alone on this journey for so long, constantly trying to take care of myself without any support, and finally, someone was willing to help me. But this gratitude did not last long, and that night ended up being the worst night of my life.
I have never told anyone what happened to me. I did not know whether to go to the police station in the morning because the man had given me money as promised. I just wanted to go home, so I did. When I got there, my dad welcomed me with open arms. He was thankful I had made it back, and I was so relieved to finally be in a space where I would be supported and listened to. I told him about my trips to the hospitals, about what they had said to me, and my father was there for me as I started the process all over again.
At the age of 22, I went back to Hillbrow hospital. In the time between the first visit that had changed my life and this one, the hospital had shut down and had become a clinic. They gave me a referral letter to go to Charlotte Maxeke Johannesburg Academic Hospital where I once again went through the checks and scans, which were a process that I was all too familiar with at that point. They told me the very same thing that the previous doctors had told me. They explained my body using big words that I didn’t understand and told me that if I did not proceed with the surgery to remove the internal testes I was born with, I could develop cancer. They said that surgery was my only solution. Defeated, I agreed. I believed that there was nothing more I could do. Cancer was serious, after all. Even my dad said to me that he did not want to lose me over cancer. Everyone fears cancer, so I did it.
The procedure was more terrible than the worst experience that I could have ever imagined. From the moment that I was admitted I was treated like an experiment. In all my initial appointments, I was alone, but this time I was surrounded by strange faces. Medical students swarmed around me, male nurses crowded around me. Everybody watched as I was poked and prodded by different people over and over again. I felt like a case study. It was completely overwhelming. But I did it. I made it through. After the surgery, they did not even tell me what was removed from my body. That was just it. I was prescribed hormone supplements and was told that they would help me – but they explained this using their big words, so I never really understood what the doctors were saying to me. How would the supplements help me? Why did I need the help? Did I not just have this surgery to help me? What was this all for?
After my surgery, I felt like it was the end of the road for me. I did not know who I was, what I was, or where I fit in. At this point I was also being constantly ridiculed by the relatives who knew about my surgery. I was called “shemale,” an “it,” “cursed” and I could not defend myself because I did not understand what I had gone through and why. I needed to speak to someone. Yet even when I attempted to speak to a psychologist, they were asking me questions about my body. Again, I was a spectacle – still being poked at, just in a different way.
The healthcare system is not intersex friendly. As an intersex person, I say this with confidence. You go seeking help, and they make you feel miserable. It feels like you are trying to take two steps forward but instead end up being taken ten steps backwards because of the treatment you are getting from healthcare practitioners. You are humiliated and treated as though you are not a human being whilst they gossip about you right in your face. You, as a person trying to get help from professionals who are meant to help you, do not feel safe. My experience at healthcare facilities has made me afraid of the clinic. Sometimes when I am sick, I am still too scared to go there to seek help. Being an intersex person takes courage.
For this to change, it is high time that our voices as intersex persons are heard. Healthcare workers need to be educated. They need to know that there are people like us, and it starts with our government. We should be included in the education curriculum, so that people know that we exist. If we educate people, the intersex kids out there who need help will no longer be isolated because people will understand us better. If we educate people, the number of harmful surgeries and medical interventions that take place will decrease because we will have better knowledge about our conditions and our parents will have more information about their intersex kids. Doctors will not be able to scare and coerce them into making life-changing decisions for their children so easily. It is my greatest wish, from the depths of my heart, that healthcare workers and communities are educated, so that we can fight for better futures for intersex children. We need to feel safe when we try to get help. Intersex kids need to feel safe; they deserve to feel safe. No child should have to go through what I went through, and that starts with education.