Tata Institute of Social Sciences
This article discusses the understanding of polycystic ovarian syndrome (PCOS) among medical professionals in the patriarchal framework and how women experience infantalisation at the hands of doctors.
R’s* experience of living with Polycystic Ovarian Syndrome (PCOS) for the last four years is quite telling of the seriousness with which this issue is dealt with by many doctors. R moved across different cities, experienced care under different doctors and received different treatment plans. Some doctors claimed that the disorder is genetic, while the others pointed to stress as being the cause behind it. Some others chose not to offer any information and just prescribed contraceptives to regulate her periods. R was living in Delhi and completing the final year of her degree when she was diagnosed with PCOS. Along with the diagnosis, her doctor asked to meet her father and told him that R needed to be married soon, as the “clock was ticking.”
This experience of being infantilised at the hands of doctors is perhaps relatable to most women and has been recorded in research on medical practitioners. Apart from being infantilised, women’s suffering and pain is often not taken seriously. For example, in 2016, a professor of reproductive health at University College London, John Guillebaud, told a reporter that it can be “almost as bad as having a heart attack,” while admitting that period pain hasn’t been given the attention it deserves, partly because men don’t suffer from it (Saini 2017). When global figures of women in science are abysmal, it should not come as a surprise that scientific methods and findings have been biased against women. “UNESCO, the United Nations Educational, Scientific and Cultural Organization, which keeps global figures on women in science, estimates that in 2013 just a little more than a quarter of all researchers in the world, were women. In North America and Western Europe, female researchers were 32% of the population. In Ethiopia, the proportion of female researchers was only 13%” (Saini 2017). Women have been systemically excluded from the process of knowledge production and it explains, to some extent, the seepage of social biases into the practice of medicine for female patients.
In this article, I will discuss the “objectivity” of gynecology as a science and discuss how treatment of PCOS is placed firmly within the confines of patriarchy, through a combination of auto-ethnography, existing research and interviews of women.
The ‘Objectivity’ of Science
Social context has always been integral to the construction of knowledge and even then certain knowledge is accepted as “fact” whereas the another kind of knowledge is deemed as “artifact” (Findlay 1993). The content of science cannot be separated from its context and hence one must not shy away from questioning it. Believing that science is objective, neutral, and free from all kinds of prejudice is problematic. For example, in the context of female reproductive health, one must question as to why terms used for menstrual phases evoke the feeling of loss: “Endometrial loss,” “Regression in size,” “Dying,” and “Failure of the anterior pituitary gland.” These terms are not neutral and convery failure and dissolution, perhaps because pregnancy is considered to be the “right” outcome of a menstrual cycle and all other stages are articulated in terms of a failed outcome. “If a lack of endometrium in the menstrual phase had been the norm, for example, then the discourse would not have contained a view of it as a loss. Rather, the ovulatory phase and pregnancy could have been expressed as possessing excessive endometrial material” (Findlay 1993). We cannot also dismiss the fact that researchers, scientists and medical practitioners who produce or practice knowledge are human beings and hence are subjected to the influences of society, culture, and institutions of which they are a part of. They are not infallible, and hence nor is the knowledge that they create above questioning and interrogation.
Gynaecologists: Guardians of ‘Family’
Most of the significant writings in obstetrics and gynaecology originated in the United States and United Kingdom during the 1950s. Obstetric and gynaecologic definitions of the “normal healthy woman” in the 1950s played upon the specific social concepts of “femininity,” reproduction and mothering. Gynaecologists defined what was normal or abnormal for women based on those three functions, and these definitions have been projected as technical and free of any value-judgment. For example, gynaecologists categorised women’s pelves in a manner such that reproduction formed the focal point of medical classifications of pelvic types. Once articulated, these medical and technical conceptualisations of women were then used as resources themselves in order to argue that the reproductive state was the criterion of normality for women. These medical practitioners regarded themselves as guardians of family values and protectors of social order. They were attempting to define what the normal healthy woman should be and it is not surprising that she was what they wanted her to be and what society wanted her to be. Women’s endocrinology focused on their reproductive, rather than their sexual, capacity. Indeed, evidence that linked women’s physiology to sexual functions was overtly minimised.
The fact that women menstruate when they do not conceive used to be described as “the weeping of a disappointed uterus” (Findlay 1993). The uterus, here, is being talked about as a separate autonomous entity whose entire purpose is to reproduce. “Professor M L Holbrook, addressing a medical society in 1870, observed that it seemed “as if the Almighty, in creating the female sex, had taken the uterus and built up a woman around it” (Ehrenreich 1978). Menopause in medical literature was described as “the death of the woman in the woman,” reflecting the premium placed on a woman’s fertility, so the day she loses her ability to reproduce, she becomes less of woman. Gynaecologists were of an opinion that too much reading or intellectual stimulation in the fragile stage of adolescence could result in permanent damage to the reproductive organs, and sickly, irritable babies (Ehrenreich 1978). Things have not really changed much since then.
PCOS: III Defined, III Understood
“PCOS is like the classic story of a number of blind men, each able to touch just one part, trying to describe what an elephant must look like” (Ellerman 2012).
This is how Thatcher describes PCOS in his book called PCOS: The Hidden Epidemic. The causes, the diagnosis, the symptoms or even the treatment, nothing in the case of this syndrome is well defined. “When I was diagnosed with PCOS, my gynaecologist prescribed medicines to treat acne and I kept wondering if this is going to solve the underlying problem. I was never informed of the side effects, I was not told that the medicine also causes depression,” a 22-year-old who was diagnosed with PCOS recently recalls.
When PCOS was first described in 1935 by American gynaecologists Irving Stein, and Michael Leventhal, it was considered to be a rare disorder. However, today as many as five million women in the United States may be affected, according to the Department of Health and Human Services, but researchers are still just beginning to uncover the disorder’s full impact. A recent study revealed that about 18 per cent of women in India, mostly from the East, suffer from Polycystic Ovarian Syndrome (PCOS). Metropolis Healthcare, a multinational chain of pathology laboratories, conducted an inclusive study to observe the trends in the PCOS cases in young women in India. Among the samples tested east India shows alarming levels of 25.88 per cent women affected by PCOS, followed by 18.62 per cent in north India (The Hindu, 2016). A community-based prevalence study, based in Australia, published in 2010 found that approximately 70 percent of the 728 women in the cohort had PCOS, but had no pre-existing diagnosis (Parker 2015). According to the American National Institute of Health (NIH) consensus criteria consist of a minimal finding of: menstrual irregularity due to olio-or anovulation, evidence of hyperandrogenism, whether clinical (hirsutism, acne, or male pattern balding) or biochemical (high serum androgen concentrations) and exclusion of other causes of hyperandrogenism and menstrual irregularity (such as congenital adrenal hyperplasia, hyperprolactinemia, and androgen-secreting tumors). But it is important to note that outside of these criteria, women with PCOS often experience other conditions that affect their short and long-term physical and mental health. Decreased quality of life from mood disturbances, decreased sexual satisfaction and weight gain have all been documented. Research shows that the treatment majorly revolves around maintaining the fertility of the woman and ignores both physical health consequences and the emotional impact. Patients are treated primarily on their symptoms even when current studies have shown that they need to be treated more holistically (Brady, Mousa and Mousa 2009).
The Thief of ‘Womanhood’
“Sometimes I wonder that had the norms defining the physical appearance of women been a little accommodative, my experience with PCOS would have been easier,” says a 21-year-old who was diagnosed with PCOS when she was 15. PCOS and its concomitant symptoms make it difficult for women to attain acceptable displays of femininity and it is just not the society that is concerned about this display but medical science too. The focus, in PCOS, is less on whether such a physical state is “healthy” or not, but on the notion that the body falls outside what is deemed acceptable in terms of normative ideals of femininity (Ellerman 2012). “In your own mind, you know that you are good, worthwhile and beautiful, but you are so much at odds with what is narrowly defined as beauty that you lose yourself in it”, says another 25-year-old woman diagnosed with PCOS. Words like ”unfeminine”, ”masculine”, ”abnormal” or ”unnatural” crop up over and over again when women talk about their body hair (Kitzinger and Willmott 2002). A lot of women I talked to said that, for them, removal of facial hair is a private act and that they don’t want their partners to see them with a “beard” or a “moustache”. “This constant effort to look a certain way and hide my real appearance is taxing and costs me my leftover self-esteem also”, says a woman who has also been living with PCOS for a while now.
PCOS primarily is being treated as an infertility disorder or a cosmetic annoyance even though it is also a metabolic disorder and has serious long-term health concerns. According to the non-profit support organisation, PCOS Challenge, Inc, PCOS awareness and support organizations receive less than 0.1% of the government, corporate, foundation, and community funding that other health conditions receive. Even researchers, who do receive funding to study PCOS, tend to study the infertility aspect of the disorder. Physical attributes of what is considered feminine is often conflated with womanhood, when in reality, it is much more than that.
PCOS and Mental Health
The mental health of women living with PCOS is at stake not only because of the pathophysiological causes but more because of the imposed burden of femininity that they have to live with. Gretchen Kubacky, a health psychologist who also has PCOS, says that the condition has a significant impact on the mental health of her clients on both at a situational and chemical level (Parker 2015).
With diagnosis of any disorder, disease, or syndrome it is reasonable to say that a patient may have anxiety. But there is an added anxiety with PCOS that is most attributable to hirsutism, irregular menses, and infertility. A study that interviewed 30 women with PCOS found out that the three most troublesome problems for them were excess hair growth, irregular menses, and infertility. All three of these characteristics were areas women described as what they defined as being feminine and, as a result of PCOS, they felt robbed of their female identity (Brady, Mousa and Mousa 2009). The reasons for the higher prevalence of anxiety and depression in PCOS are complex. Visible features of PCOS such as hirsutism, acne, and alopecia, as well as its potential consequences such as menstrual irregularity, infertility, and obesity, are deeply stigmatising to women. Many researchers have postulated a biological mechanism between the symptoms of PCOS and anxiety and depression, proposing mechanisms such as hyperandrogenism and insulin resistance, but the results have not been consistent (Chaudhari, Mazumdar and Mehta 2018).
Gynaecology as a branch of science was established to follow the patriarchal and binary language of normal woman versus abnormal woman. Amidst this patriarchal establishment of science, the diagnoses and treatment of PCOS is less about the woman living with the syndrome and more about her ability to reproduce and look “feminine”. What is being looked at as a mere cosmetic annoyance or an infertility issue by the medical science is much more than that, PCOS has been a cause of some long term physical and emotional issues that the medical science is still continuing to ignore.
*Name has been changed.
Prakriti Singh (firstname.lastname@example.org) is at the Tata Institute of Social Sciences.
This article was originally published in the Economic and Political Weekly on 22 May 2019.
Photo by Harrison /Topical Press Agency