How a PCOS diagnosis changed my understanding of my body and mental illness

This essay was originally published on December 27th, 2017.

If you’re in your “childbearing years” and you have a uterus, then you’ve got an 8-20% chance of having polycystic ovarian syndrome, or PCOS. Yet, despite the prevalence of this condition, scientists and doctors understand very little about it. What we do know is that PCOS is a serious metabolic disorder. It’s linked to insulin resistance and diabetes, and to higher androgen levels, which lead to infertility. Before I donated my eggs, I had to undergo a screening test, and the results suggested that I had PCOS. PCOS didn’t prevent me from donating my eggs, but the condition can affect my life in other ways.

I don’t have painful or irregular periods, nor do I have an excessive amount of facial hair — but I do have acne and mental illnesses, both of which are linked to PCOS. I’ve also had painful ovarian cysts, which my doctors attribute to the syndrome.

As someone who wants children (and who wants to avoid the other health conditions associated with PCOS), I’ve realized that I need to do everything I can to keep my condition under control. I hardly knew anything about PCOS before my diagnosis, and it was purely by chance that I even discovered I have the syndrome. I don’t have health insurance, and my symptoms weren’t severe enough to force me to go to the doctor. And even if I had sought out a test on my own, a 2016 study published in the Journal of Clinical Endocrinology & Metabolism found that, on average, it takes two years and at least three doctors for women to finally be properly diagnosed.

Since I was a lucky enough to receive a diagnosis, I’m changing how I treat myself so I can stay healthy.

1I’ve accepted my body fat.

“Fatness” is often associated with laziness. We live in a fatphobic world where thin privilege exists, and while I don’t bear the brunt of fatphobia, it still affects my life. Doctors often lecture me about my weight while having little regard for my actual health concerns. I certainly struggle to find clothes that fit, my body isn’t considered “attractive,” and I’m often seen as lazy. I internalized that message—that I’m “lazy.” I saw my fat as a punishment for my behavior, for not exercising hard enough. But PCOS can make it hard to lose weight because your body burns protein instead of fat. Chances are that my weight is a result of my condition, not because I’m doing something “wrong.” (Though I’d like to add that the cause of someone’s weight doesn’t matter; it should have no affect on how that person feels about themself or is seen by others. Everyone, no matter their body shape, is valuable.)

Accepting my body fat has made me healthier, both psychologically and physically. Once I accepted my body, I didn’t feel compelled to obsessively exercise or to change myself. I only wanted to help my body feel better. I began eating well, exercising moderately, and drinking more water —  not out of self-hate or fear of fat, but out of the desire to protect my health.

2 I’ve learned about nutrition.

The more I researched my condition, the more I realized that my symptoms can be managed through eating certain foods and avoiding others.

In the past, I struggled with disordered eating due to anxiety. I fluctuated between eating very little and mindlessly bingeing, usually because of my mood disorders. Now, I try to focus on nutrients and benefits of certain foods — not on whether those foods will make me gain weight.

To prevent myself from developing diabetes, I now eat fewer carbs. I used to have two spoonfuls of sugar in my coffee, and I drank about five cups each day. I already drink less coffee now, and more importantly, I don’t put in any sugar. I consume more foods with anti-inflammatory properties, like tomatoes, nuts, and green tea.

3I better understand my mental health.

Like many other mentally ill people, I’ve internalized the idea that mental illness isn’t real. I know my mental illnesses exist, but I’ve been shamed into believing I’m only sick because I’m not resilient. PCOS is strongly linked to mood disorders like depression and anxiety. Learning that my condition made me more vulnerable to mental illnesses was a relief. I began to accept the fact that my mental illness—like all mental illnesses—exists for a very physical reason. My PTSD wasn’t caused by a lack of strength—it was exacerbated by my physical condition.

My diagnosis prompted me to learn to take care of my body. But what if I’d never been diagnosed? If I’d never decided to donate my eggs, my symptoms may have gotten much more severe before I learned what was happening to my body. Other people might not be so lucky. That’s why it’s imperative that we keep talking about conditions like PCOS and advocating for better healthcare access.

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