Authors: Alex Lukey and Arrthy Thayaparan (Blog Coordinators) || Interviewing: Shruti Buddhavarapu, B.A., M.A., University of British Columbia
Published: August 27th, 2021
There is no single definition of polycystic ovarian syndrome, or PCOS. But what we do know is that this complex disease is one of the most common hormonal disorders in women of reproductive age.
In this month's article for our Behind the Science Series, author and researcher Shruti Buddhavarapu discusses her master's work on the medical and gender politics of PCOS in India.
How did you become interested in women’s health research? How did you decide to research PCOS in India?
I started showing PCOS symptoms around the age of 14-15 but it took another 10 years before I officially received a diagnosis. The journey from first noticing my symptoms to finally finding a method of managing the symptoms that aligned with my views was brutal. Women are constantly gaslit in the doctor’s office. We have to toe the line between trying to be “The Good Patient”, and fighting the condescension of a system that naturally distrusts our symptoms and our accounts of those symptoms. I was also hugely disappointed by the number of doctors who asked me to come back to them when I wanted kids—not if. It was as if PCOS only mattered because it threatened my ability to reproduce.
My research on PCOS uses critical discourse theory and analysis which have been important tools for me all through academia. This methodology looks at what the language we use tells us about the social context we’re in. It assesses the ways in which the words we use (consciously and unconsciously) create and maintain social inequalities and systems of power.
Now it seems natural that I’d apply those skills to expose the professional, political and personal networks that underpin an individual experience of a particular medical syndrome.
How would you explain your research in simple terms?
My PCOS research studied the language and knowledge around illness and health. The paper I published in the Journal of Medical Humanities was a modified version of my Master’s research. I look at the lived experiences of folks with PCOS, especially in India. Which is to say, outside of medical discourse and doctor prescriptions, what does it mean to live with PCOS in the day-to-day? I wrote about how the lack of a known cause for PCOS allows for there to be convenient assumptions on womanhood and femaleness from those who benefit from patriarchy. It used to be common to tell women with PCOS that they invited the syndrome upon themselves due to a “Westernized lifestyle and diet.” I’ve heard this many times from doctors myself. Add to it the horror that women with PCOS may be infertile, which really threatens this nationalist idea of the pure, untarnished, un-Westernized and thus fertile and healthy Indian woman. This scare-mongering and moral policing of folks with PCOS serves no one. It focuses entirely on the wrong thing -- the potential of women as mothers as opposed to individuals.
What do you think is the most important impact of your research?
Back in 2015, when I wanted to perform a critical discourse analysis of folks’ experiences with PCOS through their notion of femaleness/femininity, I was surprised to find a huge lack of material. Most academic writing on PCOS was medical with only a handful of sociological articles. So I was creating the literature I wanted to cite. I try to push the boundaries we take for granted in medical literature by bringing attention to the unrelenting but often invisible biases that are present in medicine.
Why do you think we need to focus on women’s health in research?
I think there’s an urgent (mind you, it’s been long overdue, like centuries overdue) need for science and research to reflect the spectrum of a variety of lived experiences.
Basically, we need to democratize research. We need queer, non-binary, trans experiences to show up in our research, and we need them to be researchers. For too long, science has been the repository of colonial violence, centring a white, cis-male experience. Did you know that the Ferriman-Gallwey index (to measure hirsutism—a condition that results in “excessive, male-pattern” hair growth in women) was built on a caucasian model of “hairiness”? So for a long while, women of colour were judged on a scale that just didn’t factor in their genetic histories.
Why is your work and women’s health research important and needed in India?
While PCOS is something that affects folks worldwide, India has one of the highest rates of the syndrome. There are ties linking this to the alarming rates of type 2 diabetes in India. (There is a close connection between PCOS and insulin resistance—often a precursor to diabetes.)
In many ways, I want to say my research is important in India because this is where I live, and I cannot separate my location from my politics. But it also intuitively is where I need to be with my research because such a large population has PCOS in India.
Did you face any challenges conducting your research or increasing awareness of your findings?
In my case, the biggest impediment to my research was the lack of previous research. But I knew this while going in, so I was prepared for it.
Since one of my key arguments was that there was so little of it to go around (outside of scientific discussions), it only served my argument’s larger purpose. With my thesis, I wanted to say: “Here’s all the research we have so far. It is pitiful and has a history of being biased towards patriarchal ideas of womanhood. We need to change our language about PCOS to make it accessible to everyone, without bias.”
What are you working on now?
I recently published a creative non-fiction memoir about rootlessness, chronic illness and growing up and dating as a woman in urban India. It’s called “The Weight of a Cherry Blossom”. I’ve also been involved in a couple of pop-culture projects as a PCOS specialist/researcher—Buzzfeed, Mid-Day, Mumbai Mirror, Firstpost and A Sense of Place on Roundhouse Radio Vancouver.
For Firstpost, for instance, I wrote a series of reimaginings of popular classics, such as Alice in Wonderland and Jane Eyre, where the protagonists have PCOS. It is tongue-in-cheek and irreverent but was a wonderful way to open conversation about PCOS. I would like to write more about the networks of chronic illness, capitalism and notions of productivity in the workplace.
What makes you excited about the future in women’s health research?
That it’s changing! So radically, so exponentially, so determinedly. When I started research on PCOS in 2015, there was very little material in and outside of academia on the topic. Now, the number of youtube channels, IG accounts dedicated to illness discourse and women (always inclusive of trans folk) and non-binary folks’ health is so affirming. There’s so much more information coming from folks with lived experiences and women’s health researchers to the general public.
Where would you like people to connect with you?
I’m happy to chat/connect on firstname.lastname@example.org or shrutirao.com!