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Banner, Thriving with Polycystic Ovary Syndrome (PCOS) across the Lifespan ;

Failing Femininity? How PCOS Advocacy Confronts Gender-Based Medical Discrimination

Feminist Perspectives - ’Disciplined and Resistant Bodies’
Kendall Soucie (she/her), Jen Rinaldi (she/her)

Kendall is an Assistant Professor in Psychology and Jen is an Associate Professor in Legal Studies.

21 August 2023

Polycystic Ovary Syndrome (PCOS) has become a battleground in women’s and trans health, because medical interpretations of symptoms are tied to expectations of femininity that braid together sexism, cis-normativity, and fatphobia. In this piece we share the gender-affirming framework for our PCOS research and advocacy, to show that a reframing is necessary for restoring access to, and dignity in, healthcare.

What Makes a Woman

In our research we have spoken to people with PCOS about their struggles in healthcare contexts and their relationships to their ever-in-flux bodies. We have found that healthcare spaces are rife with gender-based discrimination for people with PCOS—who fight to be heard, to be taken seriously, and to be treated with respect. Despite PCOS affecting up to 1 in 5 people with ovaries worldwide, delays in receiving a diagnosis are common, lasting on average four to five years (see Gibson-Helm et al.’s study for one example of many).

Sasha Ottey, who founded PCOS Challenge (the largest PCOS advocacy organization in the world), describes in The Atlantic how diagnosis delays are due to “medical gaslighting.” What she means is that women have historically been excluded from medical research, so doctors don’t recognize gynecological symptoms, and instead assume the patient is being overdramatic or hysterical (for more on medical gaslighting, see The Guardian’s exposé).

Delays in diagnosis are especially frustrating given that, if left untreated, PCOS increases risks of heart disease, stroke, and diabetes. There are also risks of mental health concerns, like anxiety, depression, disordered eating, and poor body image. The risks identified here are elevated in frequency and severity for racialized women with PCOS, who feel invisible and disproportionally targeted in doctors' offices. PCOS produces body markers too, to the extent that the condition affects the reproductive system (irregular periods, ovarian cysts, infertility), elevates testosterone resulting in hirsutism (hair growth on the face, chest, and back), causes alopecia (hair thinning on the scalp), and fluctuates weight distribution (due to endocrine system changes). All these markers challenge a version of femininity that is culturally imagined to be normal or ideal—so doctors are dismissing medical symptoms as personal shortcomings.

To understand how these attributes get attached to gender, we draw on queer feminist theorist Judith Butler (who wrote the foundational texts Gender Trouble and Bodies that Matter). Butler writes that gender is not ready-made from birth, but materializes through repeated practice. Gender is meaning made and re-made through power relations. People who exceed gender norms—through intentional resistance, or because bodies can just be unruly—may be judged (especially by people with authority like doctors) for falling short, blamed for some personal failing, and expected to put in work to adhere.

A key example is how womanhood is culturally tied to reproductive function, which serves as a cornerstone for sexist oppression. A participant in our interviews, Kamila (a pseudonym) reflected on how doctors took years to recognize her symptoms, resulting in a cyst that required surgical removal:

I was worried, like what if I lose one of my ovaries right? Like, and as a woman too. And it was tough because in my culture and our background…to discuss a woman’s fertility being at risk was really kind of stigmatizing...After the surgery, I was just kind of shocked seeing a picture of how big the cyst was, thinking like, what could have happened?– Interview participant, Kamila

Even after diagnosis, people with PCOS report having to advocate to the point of exhaustion - and even defeat - for their healthcare needs. Other people we interviewed report that providers suggested they return for treatment when they intend to become pregnant. Current treatment options take a one-size-fits-all approach, limited to lifestyle management and regulating menstrual cycles through oral contraceptives, all to restore fertility capacity. Doctors are so focused on fertility, they miss the whole range of PCOS impacts (e.g., cardiometabolic impacts, mental health concerns, and quality of life).

Failure as Intentional Practice

That PCOS affects gender-coded body systems can be especially difficult for trans persons seeking healthcare. Queer theorist Jack Halberstam offers a way into understanding how Butler’s ideas apply to gender-queerness. He frames Butler’s work as a way of thinking “about what it means to be in a political struggle where the category of womanhood, rather than holding together and cohering, might well be splintering and falling apart”. Halberstam’s work (see his book The Queer Art of Failure) shows how trans people splinter apart gender norms, “failing” to live up to the roles they were assigned, instead practicing their own versions of gender.

This queer art of failure unsettles the way the world has solidified around a gender binary. Trans people in our study signaled that PCOS does not only impact women, so PCOS healthcare needs to be calibrated to serve more than just women. Consider how Avery embraced their elevated testosterone levels and excess body hair, but felt out-of-place when seeking medical care to ensure they remain healthy:

[The diagnosis] was reassuring internally, but stressful [because] this makes it harder to play this role and to show up in the way that I’m supposed to. …I’d argue that as a non-binary person it’s much harder because [PCOS] feels very much like a women’s issue, and it’s very gendered in the way folks talk about it.– Interview participant, Avery

Avery’s thoughts reflect how trans people struggle to access healthcare, not just related to gender confirmation—for medical stigma against trans people produces barriers to accessing all forms of healthcare provisioning (see work done by Trans Pulse on this subject). Consigning PCOS to the realm of women’s health would disregard how symptoms can be protective in relation to trans identity, described in Stacey Williams’s book The Psychology of PCOS as a 'superpower'.

Category Woman Bursting at the Seams

Body weight/shape/size poses another challenge to how womanhood is constructed and controlled in clinical spaces. Halberstam’s theory of queer failure reverberates through fat activist Charlotte Cooper’s accounting (in her book Fat Activism) of fat as both gendered, especially made into a feminine feature; and made to feel like a personal defect, fixable through lifestyle choices. But bodies are diverse, and there are plenty of reasons—PCOS included—for bodies becoming large.

The way medical providers treat weight gain as a kind of failed femininity, or understand femininity to be tied to smallness (so described in Jeannine Gailey’s The Hyper(in)visible Fat Woman), can be seen in PCOS treatment that includes, and may wholly entail, aggressive weight loss practices. Consider this passage from Rebecca’s interview:

He [my physician] said lose the weight, and your PCOS will go away. And then he didn’t give me anything for treatment. He said at his clinic, it’s about a healthy lifestyle, and I wasn’t incorporating a healthy lifestyle, so he couldn’t treat me.– Interview participant, Rebecca

Rebecca’s experience is emblematic of how doctors have turned patients away, even after a PCOS diagnosis, insisting that poor diet or laziness explained weight gain. Fat should not be a reason to deny people healthcare, and need not be the sole focus of treatment regimens.

Resisting through Health Advocacy

PCOS provides clear examples of how human bodies do not fit into tidy gender categories, and raises questions like: what if the patient does not need to reproduce, or does not care about their body hair, or cannot help their weight gain? And don’t medical providers still owe people care when these cultural hallmarks of womanhood aren’t met? Our focus on lived experience should point to the importance of patient-centered, gender-affirming care to improve health outcomes and promote health equity.

*This research has been supported by the Social Sciences and Humanities Research Council of Canada (SSHRC) -Insight Development Grant program. *

About the authors

Kendall Soucie (she/her) is an assistant professor in Psychology at the University of Windsor. She is committed to improving healthcare experiences for people with underrecognised health conditions, with a focus on PCOS. Twitter: @DrKSouc

Jen Rinaldi (she/her) is an associate professor in Legal Studies at Ontario Tech University. She has a record of working in and with queer, trans, and fat communities to document experiences of medical violence. Twitter: @RinaldiJen

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