We Are ‘Woman’, after All

Abstract

Thandi was a 16 year old schoolgirl, when I first met her at a local state Hospital in Johannesburg, South Africa. She was referred for genetic counselling as she had recently been diagnosed with mosaic Turner Syndrome (TS). I remember being nervous beforehand as I knew I would not be able to inform her about the impact of TS because of the variable phenotype, which in her case was further complicated by the presence of mosaicism. Early in the session my concern of not being able to assure her was confirmed and so began our journey into exploring womanhood. I immediately connected with Thandi, with her radiant smile and nervous adolescent giggles. She started telling her story; she was one of three children from a socially disadvantaged background. She was granted a scholarship at a prestigious all-girl private school because of her academic and sporting achievements. This was an honour for her, and she was clearly motivated to succeed. Although liked by the other schoolgirls, she felt self-conscious about her body and embarrassed by her lack of breasts and periods. She took it upon herself to find out what was happening, and this resulted in her diagnosis. She was blase in telling me about the diagnosis and possible lack of uterus and ovaries, and I felt panicked as I realised that she knew the name of her condition but was unaware of the impact. Thandi understood my explanation of TS but her question to me “Why me?” caught me off guard. I needed an answer for her. It seemed “unfair” that this young woman, who had risen above many obstacles, was dealt this hand. We both seemed to fall into a state of helplessness, although she still seemed strong. The final blow to her resolve was the high risk for infertility. She was visibly devastated and she exposed her shame when asking whether she was like Caster Semenya. Caster is a South African gold-medalist athlete whose gender was being questioned and the means to “define gender” was a major news item at the time. As the worldwide sports governing bodies tried to determine how to define gender, insensitive and harsh comments were often made with little regard for Caster and her family. Here was Thandi, also an athlete, who now turned the same scrutiny on herself and had the insight to know that in order to attain some acceptance she would need to meet the world’s criteria. But more importantly, she had her own definition of being a woman, and she would need to be able to align herself with it; otherwise, she could lose her sense of self-acceptance and self-worth. By acknowledging her feelings of shame I tried to normalise her loss of identity and reduce the shock. Thandi left saying she was pleased to know more about TS but found the infertility issue difficult to accept. Thus, she provided a big clue to how she defines womanhood. I felt overwhelmed, not just for Thandi but also for myself. Here I was, in my 30s, thinking I understood my world but confounded by the simple question, “What defines women?” I was shocked that even knowing the physiological complexities involved in gender, I still thought of it in simple measurable terms: chromosomes & physiological features, both easily definable and socially acceptable. But on witnessing how the loss of a chromo1 Name changed for anonymity