At 15, Ankita Das was diagnosed with Polycystic Ovary Syndrome. She spent the next few years feeling ashamed that she had been afflicted with a reproductive disorder at such an early age. “Twenty eight days of bleeding, one ultrasound test and a shocked expression on my mother’s face – that is all it took to make me feel ashamed of myself,” said Das. “We live in a society where a woman’s reproductive system is a taboo and a disorder related to it, even more so. At 15, I had to deal with that.”
A student at the National Institute of Fashion Technology in Kolkata, Das describes her journey with Polycystic Ovary Syndrome as both “depressing and hilarious”. The 20-year-old remembers crying for hours after the diagnosis. Her diet was regulated, Maggi and sweets became a thing of the past, and she was put on oral contraceptive pills. “One morning I saw hair on my face, and I felt ugly and abnormal,” she said. “I started telling people that I had an incurable disease. It is hilarious, in retrospect, because of my childish way of dealing with it.”
Polycystic Ovary Syndrome, or PCOS, is a heterogeneous endocrine disorder that can lead to health complications, including menstrual dysfunction, infertility, hirsutism or male-pattern hair growth, acne, obesity, and metabolic syndrome.
Das chose PCOS as a theme for her college photography project. Titled Your Acystant to PCOS – a play on the word cyst – the project is divided into three chapters: terminology, symptoms, and its emotional and psychological impact. “The project has helped me embrace my disorder and stop being ashamed of it,” said Das.
According to a research paper published in the Fertility Science and Research Journal, studies showed a 3.7% to 22.5% prevalence of the disorder in women, with 9.13% to 36% cases in adolescents. Yet, awareness about the disease remains low. “During my research, I realised that women with PCOS do not have in-depth knowledge about it,” said Das. “They commonly associate only hirsutism and excessive bleeding with it. So, the first part started with the terminology. The second part was the physical symptoms, which everyone talks about and focuses on. And the third was the psychological part. The three parts served as step-by-step guidance.”
Das drew on her long discussions with her gynaecologist, conversation with friends and her own experiences. She also relied on several academic papers that she found online on the psychological distress in women with PCOS or studies about the effects of changing your lifestyle to treat the syndrome.
Though most of the associated terms sound like medical jargon, Das has demystified them through the use of minimalistic and simple images, a technique that she has also applied to convey the feeling of despair that those suffering from PCOS tend to deal with. Das’ photographs are almost clinical in nature and never stray from the principle of less is more.
“I wanted to be subtle and portray the intricacies of the disease in a more metaphorical, rather than a direct manner,” she said. “So I started associating things with the symptoms.” For example, a face covered in bubble wrap is used to symbolise acne, while a hairy coconut is used to denote hirsutism. The real challenge though was to portray the psychological symptoms. Das thought long and hard about how she could show low self-esteem without actually showing a girl despondently looking at a mirror. In the end, after conversations with friends, she decided the image would be that of a girl with no face.
Some of the more obvious symptoms of PCOS include hair fall, excessive body hair and a tendency to gain weight. “Once in school, some boys made fun of me saying that I had a beard [referring to my sideburns]. I wanted to disappear. In a world where I saw girls of my age, looking pretty and not having to worry about their diet or anything, I felt different.”
Though the cause of PCOS remains largely unknown, most studies suggest it boils down to lifestyle choices. Shruti Buddhavarapu was 21 when she was diagnosed with PCOS, with her doctor attributing it to Buddhavarapu’s poor diet and erratic sleeping habits. Eight years later Buddhavarapu is an editor at Tara Books and has written a research paper on the critical discourse analysis of literature and material already available on PCOS. She has also written a series of short stories for news website Firstpost that reimagined the lives of popular literary characters, such as Jane Eyre and Nancy Drew, as women living with PCOS.
For her research, Buddhavarapu relied on studies such as Heidi A Manlove’s paper, titled Polycystic Ovary Syndrome in Urban India, and books such as Lubna Pal’s Polycystic Ovary Syndrome: Current and Emerging Concepts. She found that most of the literature surrounding PCOS in India largely parade one narrative: that one is supposed to be this ideal Indian woman whose main function is to reproduce and look perfect. “There is incomplete [information] or misinformation about PCOS and it reflects on the doctors having incomplete information themselves, or not bothering to explain the condition to someone, outside of ‘take birth control and you’ll be fine’,” she said. “So I think the onus is on the doctors.”
Like Das, Buddhavarapu has dealt with throwaway comments on her appearance for years. “That rhetoric of self-care is paraded quite a bit but in a very superficial way because what they mean by self-care is that ‘you need to look good for us’,” she said. Almost every PCOS treatment, according to Buddhavarapu, focuses largely on the associated infertility and not the other symptoms; the doctors too take it seriously only when infertility comes up.
Bhupesh Goyal, a senior gynecologist with the Indian Armed Forces, explains that the majority of women with PCOS come from socio-economic backgrounds where the only major issue is infertility. “Symptoms like acne, hirsutism, obesity and hairfall are tolerated, even if reluctantly,” he said. “The sinister consequences of the disease such as diabetes, hypertension or endometrial cancer are not known or even worried about. Increase in awareness about the entire range of problems of PCOS and the fact that they are all preventable or treatable will make management of the disease more comprehensive.”
The key, according to Dr. Goyal, lies in sensitising and educating doctors, right from the primary healthcare level about the high prevalence of this disease. “There is no doubt that PCOS is an enigmatic disease where the exact pathogenesis at molecular level is still eluding us,” he said.
Das’ project, Buddhavaparu believes, is effective in how she deals with the subject without screaming about it. Instead of profiling the person with PCOS, it helps them understand some basic terminology. “It’s a beautiful art project,” she said. “I believe there’s space for all kinds of information activism with regard to PCOS, just because of its pervasiveness and under-represention in our popular culture.”