How can we create a more inclusive discussion about the very common endocrine disorder, PCOS?
By Toni-Marie Gallardo
Polycystic ovarian syndrome (PCOS) is an endocrine disorder that affects 10% of people with ovaries. It can lead to ovarian cancer, endometrial cancer, problems with ovulation, diabetes, high blood pressure, and high cholesterol. It is caused by the body’s overproduction of androgens, under production of progesterone, and insulin resistance. This is a brief explanation, but I don’t want to regurgitate the same narrative that most of the PCOS online community spouts. Black, indigenous women, trans and gender nonconforming people of color (BIPOC) are often left out of the narrative.
I was officially diagnosed with PCOS in 2014. I say officially, because if you’re anything like me and other BIPOC, then you are already familiar with the dangerous but necessary tradition of self diagnosis. It took me three years to overcome the generational trauma that most BIPOC experience when going to the doctor’s office.
Low income communities and hourly wage earners often aren’t able to take time off from work, aren’t made aware of all their options, don’t trust physicians, or are simply used to creating their own remedies through traditional means. Today, although I am Mexican American with the privilege of healthcare, the trauma manifests as telling myself “it’s not that bad,” or “I’m being dramatic,” which is usually reinforced by family members. I brought up the symptoms of PCOS to my mother–she laughed and said I was just Mexican, thick and hairy, and gave me twenty bucks to start waxing.
After two years of issues, I tried to express my concern to my primary physician who refused to give me an ultrasound. Eventually, thanks to a trip to Planned Parenthood, I was able to prove an abnormal cyst growth on both ovaries, and I was finally able to discuss proper care. Having an official diagnosis after years of uncertainty was a huge relief.
I know my journey would have been vastly different had the online community for PCOS not been overwhelmingly white. I first heard about the disorder from a friend who read about the symptoms in a magazine: excess body hair, difficulty losing weight and acne. I have always been hairy, and as I started to get older I gained some weight in my thighs and stomach. I kept searching for information but found discouraging, if not embarrassing, descriptions of what I was told were my indigenous genes.
Reading white cis women refer to their symptoms as excess hair or excess weight, I had to ask myself whether there was something wrong with my appearance and why they hated hairiness and thickness so much. As women and femmes of color, our natural bodies are the antithesis to white Eurocentric beauty standards. We are forced into self-hatred and assimilation.
Although I have grown accustomed to the self-hate, the language around symptoms from sites like PCOS Divamake thickness and dark body hair seem undesirable and it made it harder for me to diagnose myself with PCOS disorder. Their embarrassment lead to me being embarrassed about my indigenous traits. Instead of providing comfort, PCOS communities made me feel ashamed.
The recent article by Maria Yagoda on Racked about PCOS reminded me of how confused and isolated I felt as a woman of color, trying to decide if there was something medically wrong with my belly and my hairy chin. BIPOC endure confusion and shame when we try to seek medical help and articles like Yagoda’s are part of the problem we face.
While the piece makes claims to feminist ideals, what we see is another brand of white cisgender feminism, erasing the complexities that BIPOC might be experiencing. It still assumes there is something shameful about the attributes, but now you actively choose to love them despite the PCOS, despite the ‘narrow ideas of femininity’ that they are encouraging in their erasure.
Being hairy, thick or “unfeminine” is not always a feminist choice– some of us just are that way. However promising, the article failed to delve into any of complex intersections of the issue and instead maintained an aggressive assertion of the gender binary. The 2017 article – along with most of the online PCOS community – fails to imagine that a body can simultaneously be perfectly healthy, happy, hairy and fat.
So, how can we create a more inclusive discussion about the very common endocrine disorder? We must take a page from the generations of strong, hairy-bodied women, non-binary folks and trans people of color before us, and create the community on our own terms. If you are someone struggling with irregular periods, or you notice your food intake inconsistent with your energy levels, or you are pre-diabetic, reach out.
Author bio: Toni-Marie Gallardo is a queer chicana actress and writer based in Los Angeles. Her writing can be found on ShopLatinx, the Knockturnal, and Wear Your Voice. Her web-series “Full Movie Here” has been highly reviewed by Glamour, Refinery 29, AV club and more. She is currently working on an online zine for queer latinx communities in the Americas, and several short film scripts to be filmed end of Summer ‘17. She is desperately trying to learn how to rollerskate. Find her on Twitter and Instagram.