Healing my PCOS does not mean conforming to your ideal feminine body
Every morning begins the same; I wake up with a distinct pinching feeling on the right side of my pubic area. It starts off slow and soft, and becomes clearer as my vision does. By the time I am fully awake and aware of the persistent stinging, a hundred thoughts have rushed through my mind.
How is it possible that the pain is worse than before?
How am I going to get through today?
It’s all my fault!
I press my fingers deep into my skin, and drag them up and down, up and down, hoping to massage the pain away. It’s no use: I know that this day, just like every other day, will be hell on earth.
I have polycystic-ovarian syndrome (PCOS), a condition caused by a reproductive hormonal imbalance. The condition can manifest in different ways from person to person, but my symptoms include weight gain, acne, facial hair, and hyperpigmentation. I was diagnosed when I was 16 years old, at which point my body became fair ground for public commentary. From doctors and gynecologists to family and friends, it seemed like everyone in my life had something negative to say about how the appearance of my body was changing.
But those medical symptoms, and people’s reactions to them, only scraped the surface of my experience with PCOS. Five to 10 percent of women have PCOS — a statistic that doesn’t include me and my queer, nonbinary body. Beyond not feeling represented or seen by my doctors, the persistence of a binary understanding of sex and gender in the medical field has failed to account for the way I, and patients like me, deserve and need to be treated. Rather than regard my gender and sexuality as important factors in how my cyst-filled, enlarged ovaries are treated, every gynecologist I have ever been to has pressed their ideas about the ideal female body onto me in their treatment. It hurts because ever since I came out as queer and nonbinary I have felt immense confidence in finally knowing who I am. Yet, when I seek treatment for my condition, it seems as though the only way to be properly treated is by neglecting my gender and sexuality.
Gynecologists and general practitioners have told me time and time again that my hirsutism (a subjective diagnosis of “excess” hair growth), weight gain, hair loss, acne, and hyperpigmentation are all “issues” that need to be “dealt with” in order to make me “normal” again. In other words, the only way for my body to be acceptable to society is for it to conform to society’s idea of the perfect woman: hairless, thin, and with clear skin. While it is true that these symptoms are important indicators of a hormonal imbalance in my body that have had a debilitating effect on my mental health, the symptoms these doctors focus on treating do not actually threaten my physical health — treating them is cosmetic, not medically necessary. The number of stubborn hairs on my chin in and of themselves affect neither my health nor my identity.
The persistence with which the medical industry lumps together not only nonbinary and/or queer people with PCOS, but also any cisgender women who do not conform to stereotypical notions of femininity, is infuriating. Gynecologists and general practitioners should not automatically assume that a patient with so-called “female” reproductive organs identifies as a woman; that the only way to determine gender identity is by one’s genitals. This assumption is a reductive way of understanding the relationship between gender and sex, and alters the level of comfort that I and other patients like me have in being ourselves with our doctors.
For example, gynecologists constantly identify the only definitive reason to heal my PCOS as enabling me to have children with my husband one day. I have not corrected doctors who make this false assumption, but rather have hidden my identity because I do not want to have to teach them about how they should treat me. I do not want to have to explain that I do not identify as cisgender and that my partner does not either. I am also afraid that telling my doctors would lead to enduring erasure of the very identity I would explain to them — that they might not believe me or take my identity seriously because I am still (mostly) female-presenting.
The more confident I have continued to become in my identity, however, the harder it has been to pretend to be something I am not. I have dealt with depression and anxiety, symptoms of PCOS, since my diagnosis, and pretending to be something I am not compounded with these symptoms can sometimes lead to me not visiting my gynecologist and general practitioner at all. Feeling like one can’t access health care out of fear of erasure or rejection is a form of violence done to people regardless of their identity, and a form that is regularly overlooked. For example, in one 2016 study, researcher Alexandra Müller asserts that although South Africa — the country in which I live — has one of the most progressive constitutions on the rights of queer individuals, there are still widespread cases of discrimination occurring in the health care sector. Some of reasons why this is happening include the lack of education of health care professionals in the specific needs of their queer patients, not to mention the simple recognition that their patients exist in the first place.
In recent years, I have sought out resources other than those that have been available to me through the traditional medical system, most of which are books and websites dedicated to healing from PCOS. But even sites that are geared toward providing accessible, natural care for people with PCOS revert to gendered language. PCOS Diva, one of the most popular PCOS dedicated websites, states on their homepage that they “[offer] women the tools they need to gain control of their PCOS so that they can regain their fertility, femininity, health, and happiness.” This focus on femininity is alienating for queer people with PCOS, as their goals are not based on restoring some kind of essentialized femininity based on fertility, hairlessness, and thinness. Although I am confident in my identity as a queer, nonbinary person with little intention of having children, this kind of rhetoric is still isolating, and I sometimes feel trapped into having to prescribe to these ideas in order to feel like I am taking adequate care of myself.
Ultimately, I want to love myself while looking after myself. I don’t want trips to the gym to be shrouded in the idea that in order to feel “normal” again I need to mold my body into the perfect image of femininity. I want to go to the gym acknowledging that yes, I have issues that require me to maintain a healthy, balanced lifestyle, and regular exercise forms an important part of fulfilling that need. I do not believe that framing this within femininity is productive for anyone looking to heal themselves.
I also want to be able to acknowledge that yes, I do have acne and residual scarring, but that does not mean that I am “ugly” or in need of a quick fix so that people will be more accepting of me. Instead I want to enjoy looking after my skin by indulging in homemade bentonite clay face masks but still be happy going out without any makeup on, or with the fear that someone will judge me for it.
It has always been my belief that changing the way queer people are treated in health care begins with feminist organizing in accessible spaces. Social media platforms like Facebook, Instagram, and Twitter provide unique platforms for collaborations that transcend geographical barriers. In fact, PCOS-related resources that cater to queer-identifying people are cropping up all over the Internet now more than ever before. The Facebook group Qpcos, for example, offers an opportunity for queer people with PCOS to communicate with one another about their experiences, offer advice and support, and share other valuable resources. The inclusion of an “introduction card” adds a fun way to not only introduce yourself to the group, but also assert your identity in a way that is not always possible with gynecologists and general practitioners. The card is an editable JPEG that allows you to add a profile picture, your name and pronouns, your favorite form of self-care, and even some recommended resources. Sites like these are paving the way for more queer people of color with PCOS to be heard — a group that is routinely excluded from the conversation and that needs to be brought into it.
To talk more about this is important, not just for inclusivity, but for undoing the heteronormative matrix that governs the medical industrial complex.
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.
More articles by Category: Body image and body standards, Health
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