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: