Ariana Smit’s terrific article at Women’s Media Center, “Healing my PCOS does not mean confirming to your ideal feminine body” is decorated with the author’s own artwork (example above). WMC doesn’t provide a bio, so I don’t know what pronouns Smit uses; since they are completely clear about being gender non-binary, I’m going to go with “they.”
Here’s their quandary:
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.
For those who don’t know about PCOS (polycystic ovarian syndrome), Smit gives us a little background, describing it as:
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.
They also experience intense pain, which they describe in the opening of the article, but don’t mention in the symptom list, perhaps because the pain is the symptom the medical profession seems to be least concerned with:
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.
In other words, the issues of how Smit looks take precedence over how they feel. Waking up every morning in an almost unbearable amount of pain — well, that’s just part of having PCOS. But “excess hair” (a phrase rather like “overweight”), now that’s an issue worth reckoning with. After all, “she” might not get married and have children, if “she” has “excess hair.”
As one of the best-known symptoms of PCOS is infertility, Smit takes on that concern of the medical profession:
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.
Again, buried in the “only definitive reason” language is an assumption that everyday pain is not a definitive reason to treat Smit.
The medical profession both reflects and transmits simple binary gender thinking, getting this oversimplification from the larger community and sending it back.
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.
And that’s the core of the problem. Confidence and sureness of our own self-worth is almost always somewhat vulnerable to the assumptions of people in power, and perhaps even more so to the assumptions of our peers. Smit sounds like they have good support in their nonbinary identity, and good tools to defend themselves; still, the essay screams with not only the physical pain of PCOS but the emotional pain of not being seen for who they are, not being able to walk into a doctor’s office or open a website and see acknowledgment of people like themselves. In this context, I especially appreciated their mention of a related but different group, mentioning “cisgender women who do not conform to stereotypical notions of femininity” — another cohort that might not want a doctor to focus on hair or weight gain when treating PCOS.
What does Smit want? What we all want!
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.
I came away from this essay with a very high regard for Smit, with an increased awareness of what gender nonbinary people face from the medical profession, especially when they have diseases associated with a given binary gender, and with a renewed determination to move my language away from the gender binary.
In the U.S., we’re so steeped in electoral and other national politics that I also appreciate the perspective of someone half a world away (Smit lives in South Africa) and their commitment to linking their personal experiences to a political lived reality around the world.
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