PCOS, Endometriosis, and Other Female Challenges: What We Never See In YA Fiction

Strange things started happening to my body during the first couple of years in college. I gained a lot of weight—beyond the “Freshman 15″—despite eating more healthfully than I had growing up. My skin, which I was promised would eventually grow out of its breakout stage, only continued to be riddled with zits. And, perhaps the thing that was most annoying, I started to get the periodic chin hairs that are part of our culture of joking about gender and sex norms.

They weren’t funny to me, and spending time every night plucking them made me really begin hating myself.

I lived with these things for many years before deciding that I was tired of them. It didn’t seem normal to spend time every day plucking chin hairs or wishing that I’d wake up with, if not blemish-free skin, at least skin that suggested I’d finished puberty at some point. The weight challenges I faced didn’t bother me so much as they left me wondering why.

That decision didn’t change a lot, but it did come with an incredible amount of blood work, frustration, and tears at various doctors offices. It led to being told a variety of incongruent things, too: that I wasn’t eating enough; that I was eating too much, so “why don’t I just use a food tracker to help me lose weight?;” and that the condition I likely had—via literal process of elimination of everything else (and shock on behalf of some that a fat girl had no signs of diabetes or high cholesterol)—was Polycystic Ovarian Syndrome. PCOS for short.

There are no cures for PCOS, and there’s very little understanding of it, yet it impacts one in 10 people who have a uterus. Despite the name, not all who have PCOS have cysts on their ovaries. Some may have a few, some may have a large amount. But there are a few common symptoms that, when linked together, can lead to that diagnosis. Those symptoms include acne-prone skin, hair in places there is typically not hair, thinning of hair on one’s head, unexplained weight gain and the inability to lose it, increased susceptibility to depression, irregular and/or painful menstruation, and infertility.

PCOS is an endocrine disorder that can manifest in a billion different ways and impact each person differently. For some, like myself, it’s mostly background noise. The symptoms can be annoying, and there can be days when I’m definitely feeling weak or lethargic which I know are a sign from my body to slow down and tune in. For others, the illness can render them bedridden for periods of time, unable to perform any sort of “normal” activities because of pain, bleeding, or their mental health.

Managing PCOS is a game of picking and choosing which symptoms to target. Some symptoms are much easier to find solutions to than others; some are superficial fixes and some can be far more invasive.

PCOS isn’t the only female* illness with such little understanding. Another big one is endometriosis, which is often seen as a sister illness to PCOS. Endometriosis causes immense pain, as it’s a disease where endometrium—tissue that normally lines the inside of the uterus and is shed during menses—grows outside of the uterus. But since that tissue is growing outside of its normal place, it becomes trapped in the body, rather than shedding. Like PCOS, roughly one in 10 with a uterus experience endometriosis. Like PCOS, the symptoms and experiences of each individual vary widely and few answers are readily available for those living with it.

PCOS and endometriosis can begin early. They’re often seen most frequently in young people, starting from early menses into one’s twenties and even early thirties. They can be less problematic or more throughout the different stages of one’s development.

Despite the fact that both of these illnesses, as well as others like them, are not rare, we almost never see them in young adult literature. Why is this?

We’ve seen numerous discussions in the YA world about the lack of discussion of periods. This discussion, I think, begins a conversation. It’s true: periods in YA fiction are rare. And yet, it also makes some sense to me as a reader and uterus-haver why it’s not brought up all the time in YA books with a female lead character: for many, it’s a side note in their lives. It can certainly have an impact, but like using the bathroom or taking a shower, it’s the sort of detail that’s ultimately mundane and not necessarily vital to storytelling.

That’s also a big reason why when it does show up, it’s worth noting.

But what about for those which experience periods which are anything but background noise or anything but routine?

I think about myself in my late teens, finding the spot of light in my dorm room which allowed me to see the hairs poking up from my chin best so I could pluck them before anyone else could see them. I think about going unbelievable amounts of time without a regular period, only to be rendered unable to participate in my daily life when one showed up because I was bleeding through every product within an hour. Because the headaches were so bad that moving even a little made me want to vomit.

And then I think about those who, unlike me, deal with much bigger challenges. Needing surgery to remove endometrium tissue. Wondering why their hair is so thin and fragile just months after it was normal.

A teen begins an epic quest for saving their community and then gets their period after months of not, forcing them to halt their plans in order to deal with physical pain no one wants to believe they’re experiencing. A teen’s first date with a new person requires them to spend two hours prior making sure that if they’re going to make out, there’s not a shred of evidence they sport hairs above their lips. Then worrying for hours about what would happen if their make out partner happened to run a finger across a spot of stubble. Mortifying.

The fat teen who participates in three school sports, yet constantly deals with a community of peers, of teachers and coaches, of ill-informed medical professionals, who won’t let up that they really need to lose weight in order to become “so much better.”

A teen who can’t attend prom because they’ve been hospitalized for a ruptured cyst on their ovaries. This happened to a girl in my high school, and I remember spending days wondering how the heck someone that young could have cysts on her ovaries.

Now I know, and I wonder if I’d have found it less confusing and had a bigger sense of sympathy had I seen something similar play out at any point in my young reading life.

I wonder if, had I seen anything like this in what I was reading, I’d have found more compassion, love, and respect for myself and my own body when it started telling me something was wrong. Perhaps I’d have listened, rather than choosing to ignore it for years, allowing it to cause me more pain than necessary.

We need to see this in YA fiction, even and especially in small, quieter moments that offer insights into the characters we’re spending time with, and there’s no better time than now. We’re seeing more—and stronger—depictions of mental illness and the ways it impacts the lives of teens dealing with it personally and those seeing it in the world around them. We’ve seen scads of YA falling under the “sick lit” category, telling stories of cancer and other harrowing diseases.

But we never, ever see reproductive-related pain.

Because in the world we’re in, talking about “girl pain” is wrapped up in talk of sex. It’s wrapped up in the idea that girls can and do have sex. It’s wrapped up in sexualizing what is a normal, biological part of having female reproductive organs.

We need to untangle that. We need to untangle that not only because it continues to sexualize young people in unnecessary ways, but also because it continues to put a lock on opening up important, life-altering explorations of chronic and invisible illnesses that a not-insignificant number of those with female organs experience.

Because the more we talk about it, starting young, and the more we see it, the closer we can become to encouraging more money and time be dedicated to researching and understanding these and other similar illnesses.

The closer we become to developing empathy for those living and functioning in the world around us.

 

 

*Female/Girl used periodically here because of the language used in the medical community. These illnesses are linked to having a uterus, regardless of one’s gender identity.

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