I decided to apply to medical school when I was 30. This was a decision that I made overnight after reading about the new Graduate Entry course in a copy of the Evening Standard that had been left in my shared house. “I can do that”, I thought – “it will be easy, they need loads of doctors.” The reality was not quite as simple and I suddenly found myself jumping through the various hoops of entrance exams, applications, actual medical school, more exams, junior doctor years, more and more exams – and although it is now almost 17-years since I first read that article, I am still in training (although almost there).
I still sometimes wonder why I put myself through all this, especially later in life than the average medic. As for many bright young kids who like science, medicine was suggested to me throughout school – but it was always a very definite NO! My experience of doctors had not been good. My childhood doctor who had been kind enough, had given me devastating news about my body, all wrapped up in a cloak of secrecy and then seemed to just disappear. My transition to adult services, resulted in my questions about the effects of HRT on my body, being dismissed as “Ah, but it is a good for girls to have large breasts”. Medicine was definitely not for me.
I started university for the first time, in Brighton in the early 90s – and was subsequently referred to a hospital in London. However, I was again not provided with any more support to understand my body. The information given to me by the doctors I saw, continued to be inaccurate or even completely untrue. For most of my university days, I was able to keep the shame I felt about my body locked away and I had a good time. I made some great friends that I am still close to today – and I loved our shared house with our very own disco room. I drank far too much and would wear my best clubbing clothes to exams, as after exams there was always a ‘night out’. However, the hurt was there, hidden inside and always seemed to surface on the train up to London for my hospital appointments. I was usually quietly sobbing by the time I reached Victoria and I would continue to cry on the Tube and throughout my appointment. This made it even more difficult to express how confused I was and how many fears I had about my body. At one appointment, I begged for surgery that would somehow give me a vagina that was the ‘right length’. I was given the usual waffle about waiting until you meet a nice understanding ‘husband’ – and I think I sobbed “but I just want to have sex with anyone, whenever I want – just like everyone else”. This did not go down well and I was told curtly that she didn’t operate so that young people could just ‘sleep around’. This made me cry even harder and she told me that it seemed like I had mental health issues and maybe I should get support with that. I would continue to cry uncontrollably on the train on the way home, only stopping when I finally reached Brighton. My distress would then once again be locked away and I would go back to my shared house to drink wine (usually Bulgaria’s finest or Le Piat D’or, if we were feeling posh).
After finishing university, I stayed living in Brighton, so that I could continue to live with my friends. We all had quite silly temporary jobs, so that we could continue to fund our social life and mine mostly involved taking out staples for the ridiculously named ‘Uplift Team’ of an insurance company (someone on the other side of the table, restapled the documents once they were ‘microfiched’). Although for the most part, I was still superficially living a great life, the days of despair when I just wanted to take to my bed and cry, were starting to become more frequent. During this time, I registered with a new GP practice. My GP was a young woman, probably in her early 30s and she was kind, thoughtful and really listened to me. I was able to share with her how desperately unhappy I felt at times – as well as how confused I was about the information I had been given about my body.
She arranged for me to see a psychologist and so off I went into deepest darkest Hove, which at the time seemed a great distance. Every week I would talk to him about what had happened to me, the confusion that I felt as well as the periods where I felt so unhappy. I would also talk about the very ordinary parts of my life, eating dinner with friends, nights out and days at the beach. After talking to him for a few months he recommended that it might be helpful for me to have a proper look at my medical notes – and that he would talk to my GP about arranging a time for this to happen.
This was all happening during the summer of 1996, the Spice Girls had just released Wannabe and everyone had gone Football Crazy with Euro ’96. My sister was also graduating from University in London and so I went up to meet her and my parents for a celebratory meal in Chinatown. After the meal and as we were walking back to the Tube, I casually mentioned to my parents that I was due to see my GP the next day to go through all my medical notes. I had no idea at the time, but my parents were terrified by this, although managed to ask me for the name of my GP before I headed home.
The next day was a beautiful sunny Brighton day and I took my favourite back route to the surgery. This passed along (as I liked to call it) the alley of fragrant stones and then through the houses with the little flashes of sea as you passed by each road – and then down towards the Pavilion.
I felt light and almost skipped into the surgery, I had no fear and was not expecting to find out anything exceptional, possibly just a little clarity over my body and what had happened to me.
In her large sunny room, my GP sat alongside me with my medical notes in front of her. She started to tell me about how babies develop in the womb. She told me that for around the first two months, the embryo has the potential structures to develop as either male or female. However, if you have XY chromosomes, this will lead to the development of testes, which will then lead to the production of testosterone and the development of the normal male reproductive system. She explained that I had XY chromosomes and that as an embryo I had developed testes. However, as my body is completely insensitive to androgens, I was unable to respond to the testosterone I produced and my body therefore did not develop the normal male structures and instead I developed along the female route – and at birth I would have been indistinguishable from any other girl, although without a uterus or top part of the vagina.
“Wow”, I thought “this makes sense and there is a name”
Androgen Insensitivity Syndrome
I did not feel upset or traumatised by this information – it just made sense and was the first piece of the puzzle that would lead to me putting myself back together as a whole person.
“Wait till I tell my parents”, I stated. She looked at me kindly and replied “they already know – they have been calling here all day and begging me not to tell you and they are desperate to talk to you.”
This was the information that was really shocking to me. Everyone had known. My medical notes were littered with the phrases ‘she does not know the truth’, ‘she should never know the truth’.
My GP explained that my parents had been told that my diagnosis of Androgen Insensitivity Syndrome and my XY chromosomes, should be kept a secret. They were told that this information would likely be too traumatising for me to hear and would lead to significant mental health problems. They had tried to do what they had thought was best, what the doctors had all told them was in my best interests.
I could see my GP was troubled – and she explained that she really hoped she had done the right thing by telling me, as everywhere in my notes it had stated that I shouldn’t know the truth. She felt that this was wrong and that the confusion about my body was causing me distress. However, one of the reasons she had wanted me to see a psychologist, was to get a second opinion, to ensure that I would be able to cope with this information. He confirmed that although I was confused and distressed, I was bright and mentally resilient and deserved the truth about my body. My GP gave me information and the telephone number of a support group for people with Androgen Insensitivity Syndrome (AIS) and told me to come back and see her again soon, if I had any questions.
I left the surgery in shock, not at the new information I had learned about myself, but about the years of secrecy and the lies that I had been told. My pre-cancerous ovaries were not ovaries at all and were not pre-cancerous. All the many doctors I had seen had all known and had continued to lie about my body, even when I asked them directly if there was anything else. I had even previously begged my parents to tell me if they knew anything else, but they had always claimed that they knew nothing more than the doctors had told me.
I couldn’t yet face talking to my parents, what would I say to them – and how would they be able to explain? I walked to a phone box and called my house and arranged to meet my friend in a pub on the way home. I ordered a double whisky as a way to try and absorb the shock – and I sat down at a table to wait for my friend. Before she came, someone approached me and gave me a small bunch of flowers. I have no memory of who they were or what they looked like, although I remember them telling me that they had never seen anyone look like me before and they just wanted to do something to help me feel better. I think the shock and pain must have been clearly etched on my face, almost like the years of shame and secrecy were finally becoming unbound and making themselves seen. The whisky helped and after a short time my friend joined me and I was able to tell her all the truth – and for the first time, this was the real truth. She listened and we drank more whisky until I felt able to face the walk home.
My parents had also been calling my house, desperate to talk to me and desperate to explain. I spoke to them briefly and we arranged for them to come and see me the next day. Everything was still too raw for me to be able to understand what they had also been through. It would take me some years before I was really able to put myself in their position and realise that even though they had made mistakes, they had always wanted the best for me. However, maybe these initial honest conversations, were the first steps towards rebuilding trust and repairing our relationship.
I don’t think I went back to see my GP and after talking to my friend and seeing my parents, I put my new knowledge and diagnosis back in a box and spent the next few months in a whirl of gin and tonics after work, clubbing and even easy listening discos (they really were a thing in the 90s). The piece of paper with the telephone number for the AIS support group, remained folded up in my address book (also a big thing in the 90s) – and it was only a year later that I was finally ready to dial those numbers and try to make contact with other people like me.
I still think about my GP and how brave she was to dismiss the multiple statements of ‘she should never know’ that were written in my notes – and how she was able to really consider what was in my best interests. I often hear people saying that GPs aren’t experts, which is true, they are not experts in specific medical conditions. However, they are experts in their patients – and often understand their patients in a way that no other speciality is able to achieve. Although, after medical school, I eventually took a different path and did not specialise in general practice – it was a GP that inspired me to take those very first steps. It was a GP that made me see the difference a good doctor could make to someone’s life.
I would like to say a big thank you to this very caring and brave GP, as the truth was the first step towards rebuilding myself and accepting my different body. I would also like to thank all the other GPs who support and advocate for their patients – what you do is not always appreciated, but it is so important.