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What living with PCOS has taught me about my gender identity and sexuality

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When I was first diagnosed with polycystic-ovarian syndrome (PCOS), I did not know that this medical condition would lead me to question parts of my identity. In fact, when I was first diagnosed with PCOS, I did not think anything of it at all. My health had never been much of a priority and at 16, I was far more concerned with other important things that were happening in my life, like “discovering” that I identify as bisexual. Later, at 22, I realized I also identify as nonbinary — which scared and surprised me at first but has now become an accepted part of who I am.

But at 21, the symptoms of my PCOS worsened: I gained 20 kilos in just a few years; I developed hirsutism on my face, neck, chest, and back; and acne spread over the same areas. I wanted to get my body in check; my Google searches went from “cute puppy videos” to “possible cures for PCOS” very quickly.

In one search, I came across a 2004 study in Fertility and Sterility, an international journal for research into infertility and human reproductive disorders, that tied lesbianism to PCOS. The study, conducted by lead researcher Rina Agrawal, states that out of the 618 women patients who had full-blown polycystic ovarian syndrome at the London Women’s Clinic and The Hallam Medical Center studied, 38 percent identified as lesbians. Agrawal explains that this research led her team to “hypothesize that hyperandrogenism, which is associated with polycystic ovary syndrome, may be one of the factors contributing to the sexual orientation of women.” Despite this loose association, Agrawal insists that “curing” PCOS would not be a means of “curing” lesbianism, as lesbianism should not be seen as a disease in the first place. Instead, the study asserts that there needs to be a focus on treating the health implications of PCOS for patients.

I was confused by Agrawal’s analysis. The research claims that there is a possible correlation between my queerness and my PCOS, an illness that has affected my life in innumerable ways. But it also claims that my queerness isn’t a problem to be cured, while PCOS is. Needless to say, this felt like conflicting information. I know that there is nothing wrong with being queer, but I couldn’t help but wonder: If this study has credence, and I were able to cure my PCOS, would something happen to my queerness?

It is well known that PCOS affects the way people think about their identities at least in that the illness has a significant impact on the way many of those living with it look. From excess hair growth on the face, neck, and chin, to rapid weight gain, there are many symptoms of PCOS that lead to noticeable changes in our bodies. A 2014 qualitative study conducted in Iran found that out of the 23 women with PCOS surveyed, the majority noted that the associated symptoms of PCOS (such as hirsutism, weight gain, and infertility) made them feel less confident in their femininity. In order to aid this, the researchers in this study suggested an unfortunate and highly problematic diagnosis: that doctors should consider helping patients “reconstruct their womanhood” along with their medical treatment.

This analysis undermines the reality that “femininity” cannot and should not be defined homogeneously as it looks different for everyone depending on a number of personal factors that include gender and sexuality. Yet this reality has not reached much of the medical establishment. For example, during many gynecological visits, I have had to deny my identity as bisexual and nonbinary because my doctors already imposed the identity of cis-heterosexual woman on me. This identity was considered important because they were operating under the dominant assumption that people who have “female” reproductive organs automatically aspire toward an essentialized femininity or womanhood. This assumption can be traumatic to people who possess these reproductive organs but do not identify as women or femme at all.

It hurts me to say that learning of the possibility that my identity could have been influenced by my PCOS led me to question the nature of my own gender and sexuality. I reflected on the fact that while I had come into my bisexuality with relative ease, and had always known that I was attracted to people of any gender identity, the “discovery” of my nonbinary identity did feel like it happened all of a sudden, and during one of the worst flares in my PCOS that I have ever experienced, no less. Thinking about this possible correlation made me feel displaced, like my entire world had been thrown into chaos. Do I have any claim to the LGBTQIA+ community if my identity isn’t “real”?

But after thinking through the research some more and roaming through Reddit and Tumblr threads voicing the same concerns, I have since realized that I don’t need all the answers right now. I just need a space where we can start having open and honest conversations about these issues.

“When our lived experience of theorizing is fundamentally linked to processes of self-recovery, of collective liberation, no gap exists between theory and practice,” bell hooks, a formidable feminist scholar, activist, and author based in the United States, stated in 1991. “Indeed, what such experience makes more evident is the bond between the two — that ultimately reciprocal process wherein one enables the other.”

When I first read this, I was astounded that my lived experiences, my everyday reality, could be significant enough to influence feminist thought. In fact, I was even more taken aback that using my lived experience to expand knowledge could be healing. But then I started writing about my experience with PCOS. Although unearthing the trauma this illness has caused has been difficult, it has also taught me a lot about what it means to stand up for myself and the countless other people who have been affected by it. Being brave enough to point out where the medical industry has hurt us is part of the healing process because it means that we refuse to be silenced. Speaking out may lead to our lives changing for the better by receiving treatment that takes our personal, lived experiences into consideration in ways that are respectful.

While the internet has allowed us to access much information about ourselves and our health, it’s also important to recognize that not all of the information we access is accurate. Instead, we should use the Internet to in turn generate conversations that combat potentially traumatizing views on gender and sexuality — such as the idea that femininity is hormonally tenuous or essentialized.

Ultimately, I do not believe that it really matters whether or not there is a link between PCOS and gender identity and/or sexuality. What matters is that we find a way to facilitate open and honest conversations about this topic in a way that supports the people most affected. Throughout this process of being diagnosed with PCOS, coming out as bisexual and then nonbinary, I have found that the most important ally I have had in coping with it all is the community of other queer, nonbinary people of color with PCOS. The support that we can offer one another is imperative for being able to deal with this illness together.

Ariana is one of the four fellows who were selected as part of the Young Feminist Media Fellowship between FRIDA The Young Feminist Fund and The Fbomb. A pilot project launched this year, the fellowship is an attempt to counter dominant narratives that provide little to no space to achievements and accomplishments of young feminist organizers, giving an opportunity to young feminist storytellers to tell the story themselves of young feminist trends around them.



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Ariana Smit
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