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It’s Time for PCOS Advocacy To Embrace Fat Activism

What if fatness was allowed to be part of the experience of PCOS without multiple calls to eradicate it?

This essay contains mentions of eating disorders, PCOS, diets, and fatphobia

By Nadia Mohd Rasidi

I received my diagnosis of polycystic ovary syndrome (PCOS) when I was 15-years-old. I remember telling the doctor about my menstrual bleeding often lasting for weeks, and how it was so heavy it sometimes made me wonder if I was dying. I said nothing of my weight gain, significant even for a teenager going through puberty. Yet when I finished, he took a look at me before turning to address my mother: “Has she always been…?” Unsure how to finish his question, he settled for puffing out his cheeks and angling his elbows away from his body. The implication was unmistakable, and under his appraising gaze, my cheeks burned hot. I was mortified having my body seen and named for what it was: fat. 

A subsequent ultrasound in which my right ovary was undetectable beneath a mass of cysts confirmed the doctor’s eyeball assessment. I felt relieved, excited for a respite from the fortnight-long discomfort I experienced monthly. To my dismay, I was told that treatment was non-existent. “We can only address the symptoms, not the cause. She can go on birth control to regulate her period if she wants.” A pause. “Having kids will be an issue so when she wants that she’ll have to come back.” At that age, becoming a parent was the furthest thing from my mind and the assumption that motherhood was a fixed point in every woman’s future at which her body’s usefulness would earn her more care rankled. It was one of the first times that I sensed I had been visibly marked by the expectations imposed on my gender, and I felt my world being made smaller for it.

The nonchalance with which I was informed of my body’s difference stuck with me. Despite what I knew to be true about social constructions of femininity, PCOS’s manifestations—hirsutism, weight gain, infertility—felt like an admission of failed womanhood, and I carried an ambivalence towards my body for many years. I would still be carrying it today were it not for one thing: fat activism. Chancing upon a blog post in 2012 by my now-friend Bethany Rutter, a UK-based fat activist, on dating as a fat woman made me realize that when it came to my body, I could ask for more from myself than apathy.

Though it would be some time before I myself became vocal online and off about anti-fat bias, I slowly began to confront the fat-hatred I had internalized. My Instagram following list underwent an overhaul: I stopped following influencers whose primary attribute seemed to be thinness and populated my feed with incredible fat brown and Black women and non-binary people. Echoing writer Lindy West’s advice, I started to “look at pictures of fat women on the internet until they [didn’t] make [me] uncomfortable anymore.” 

Much of my intellectual re-education took place on Twitter, where activists like Your Fat Friend, Kivan Bay, Ashleigh Shackleford, and Ariel Woodson, amongst others, taught me about the long history of fat bodies resisting the status quo. Until then my primary concern had been finding cute clothes that fit, but now I was learning about how assumptions about fatness affected workplace discrimination, intimate partner violence, educational opportunities, and of course, medical bias. For the first time, I understood that my body wasn’t something to be brought in line but an integral part of my self worth fighting for.

More than a decade after being diagnosed, PCOS was still a huge grey area of knowledge for me. I was afraid to face it directly because, as I looked towards my 30s, it meant confronting aging and health in a way that I had been shielded from by the luxury of youth. I was worried about things like increased likelihood of diabetes and heart attacks that I had read were linked to the disorder, but I was hesitant to speak to a doctor—perhaps unsurprising given that my last interaction with a medical professional involved being prescribed weight loss after I came in with enlarged tonsils.

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Although statistics show that 1 in 10 people with ovaries have PCOS, I had no close friends who were going through the same thing. So, as I had done before when I felt alone, I turned to social media, which led me to PCOS accounts on Instagram. I had hoped that they would allay my fears, but what I found stoked all-new concerns instead. I believed that living with the aesthetic effects of PCOS might make people more sensitive to prescriptive beauty and was surprised to find that the rhetoric of PCOS was often indistinguishable from other players on the contemporary wellness stage.

PCOS advice aims for the broad sense of empowerment that colours the present wellness landscape, in which age-old solutions to the “female problems” of the disorder—too hairy, too many zits, and of course, too fat—are repackaged as lessons in intuition. “Listen to your body,” they say, with little acknowledgment that each of our voices tells a different story. While most are careful to speak out loudly and unequivocally against what are called “restriction diets”, which rely on calorie counting and reduction, they don’t shy away from encouraging gluten-free or dairy-free diets, or a generalized approach to eating that lists the “right” the kinds of foods and snacks that will allegedly help me lose weight. 

Reading these Western-centric lists, featuring varieties of vegetables, grains, nuts, etc. that are either unavailable or prohibitively expensive in Southeast Asia, makes me sweat because they remind me of the all-or-nothing response of my teenage bulimia. Given that studies suggest that people with PCOS are more likely to develop disordered eating than those without, the unwillingness to disentangle the management of this disorder from weight loss is particularly insidious.

That most self-appointed spokespeople for PCOS are typically middle-class white women from the Global North has not escaped me. Rarely do I see people who look or think like me, whose body might come from the same mould as mine, who wouldn’t be so quick to reach for the touchstone of weight gain as an unquestionably negative shared experience. Instead, on page after page, proximity to fatness is always assumed as bad, with no room allocated for the critical examination of this belief. There are a few notable exceptions challenging this view, like dietitians Angela Grassi, Julie Dillon, and Kimmie Singh, whose conscientious practices are conscious of the pitfalls of weight stigma, but there is still a long way to go.

An oft-repeated statement is that PCOS-havers need to lose “just” 5-10% of their weight to see changes in their health. Rather than addressing the effect that changed behaviors might have and entertaining the possibility that weight loss isn’t necessary to “succeed” at health, affirmations to those whose bodies continue to stray from the ideal are couched in the nuance-flattening language: don’t give up, love yourself, you’ll get there eventually. 

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But what if there is no eventually, for some or for all? What if fatness was allowed to be part of the experience of this disorder without multiple calls to eradicate it? Over and over again I have read comments by people managing their PCOS saying that their insulin was under control, their energy levels had improved, their mental health was better than it had been in years—so why couldn’t they lose more weight? What was wrong with them? And over and over again I have searched for anything that might resemble what fat activism had taught me—that some people are fat and that’s a good thing—and come up short.

When I think about how fat activism brought me back to my body and made explicit its value in a world adamant on denying it, it’s clear to me that it’s time for PCOS advocacy to embrace the liberating discourse of fat activism. The community-building in these online spaces is important, not least because of the lack of research on PCOS available from the medical system means these accounts are the primary source of information for many. But as long as weight loss is actively promoted, these communities are hostile to people, especially those of us who are people of colour, who are in the most need of hearing that we deserve to occupy space and receive care. Not if and only when we commit ourselves to the pursuit of an imagined future thinness, but right now, exactly as we are.

Nadia Mohd Rasidi is a Kuala Lumpur-based writer and fat activist. She holds a PhD in English Literature from King’s College London and can be found on Twitter at @nrasidi.

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