In December of 2020, actress, singer, and entertainer Keke Palmer shared an Instagram post detailing her experience with polycystic ovary syndrome, or PCOS, the ‘invisible’ condition that she recalled “attacking her from the inside out” for a majority of her life. Her experience mirrors that of many people around the world. Polycystic ovary syndrome impacts anywhere between 6% and 12% of people of reproductive age worldwide, and despite its prevalence, the disorder remains invisible in more ways than one.
Symptoms of PCOS often manifest around the first menstrual period. People with PCOS may have irregular periods, increased levels of androgens when compared to other menstruators, and, per the name, polycystic ovaries—ovaries with fluid-filled sacs on their surface. This can lead to complications like irregular periods, unexpected changes in weight, and acne.
This is merely the tip of the iceberg, as Palmer states in her 2020 Instagram post. PCOS is linked to other health conditions, such as infertility, pregnancy complications, psychological conditions, cancer, and cardiovascular conditions. Despite its contribution to life-altering realities for those who live with the condition, PCOS is referred to as the ‘invisible’ condition because of its tendency to produce ‘silent’ metabolic symptoms, such as insulin resistance and defective glucose metabolism. Like other conditions, PCOS disproportionately impacts women of color, and evaluating its status as invisible is key to addressing and bridging gaps in care.
When it comes to hormonal conditions like PCOS, time is ultimately of the essence. In other words, the worst complications for those affected are often concomitants of the delay in diagnosis. In the largest study of PCOS diagnosis experiences, participants reported delayed diagnosis and inadequate information. In other words, not only are people with PCOS not receiving timely diagnoses, but they are often left ill-equipped to manage the condition. Unfortunately, with women of color suffering from the condition at the highest rates, we must consider the contribution of race and gender bias to these circumstances.
Although establishments have worked to delineate criteria for diagnosis, the very nature of PCOS renders it difficult for physicians to name the condition on the basis of these criteria alone. Because PCOS manifests differently for every individual affected by the condition, timely diagnosis rests on the willingness of the physician to affirm the patient’s experience and investigate, when necessary. In other words, within our medical establishment, the evaluation of a patient’s health is at a physician’s discretion.
In an establishment that is already deeply entangled with racism and misogyny, this discretion can either seal or create gaps for personal biases to shape care. Unfortunately, allostatic load, or biological wear and tear, and health discrimination, may underlie Black women’s experiences with PCOS—both diagnostic and lived. Black patients are more likely to have their symptoms and complaints dismissed in general, and these conditions become worse when we consider the contribution of gender-based discrimination to clinical interactions. Black women are less likely to receive treatment for their pain, and they are also less likely to be referred to specialists—including those who have the knowledge and expertise to identify and treat hormonal conditions.
Unfortunately, medical weight stigma and fatphobia only worsen these realities, as the two remain highly racialized. Negative attitudes about people with larger bodies is pervasive within the medical sphere, and this fixation on weight negatively impacts everyone living with hormonal conditions. If a physician treats an increase in weight as an inherent pathology, they are less likely to investigate the underlying cause of the weight gain. This rules out conditions like PCOS. Alternatively, if physicians diagnose conditions on the basis of one ‘looking the part’, then they are less likely to catch patients who present with other symptoms.
When it comes to many conditions, gaps in care often mirror those of medical training, and PCOS is no exception. Physicians are not trained to recognize and treat the condition, which means that the very nature of our training within the biomedical establishment makes the clinical space conducive to prolonged diagnosis and treatment. Physicians cannot find what they are not looking for.
Despite being the leading cause of infertility for people of reproductive age, PCOS remains largely unheard of. Rather than accept its status as invisible, we must work to acknowledge the factors that make the condition overlooked. Solutions are relatively simple, but they are not easy. They call for changes on institutional and structural levels, and an unpacking of the societal beliefs that infuse the care of people with PCOS—including people of color—at every level.