My experiences with PCOS Visibility Project
I was in eleventh grade when I first heard someone speak about PCOS unreservedly. The conversation was between a couple of my older female friends about the importance of getting tested for PCOS, as it's a pretty common disorder. Since I didn't face any menstrual problems, and there isn't much conversation around PCOS in schools, I never learned about it. It was only during the nationwide lockdown that I started learning more deeply about the symptoms of PCOS. I stopped getting my periods in March 2020 while giving my 12th boards, and for a month or so, I told myself it's probably because of the overwhelming stress of exams, lockdown, and the uncertainty which came with the pandemic. In June, I got enrolled as an Action Network Fellow under a digital youth-run media platform. The cohort of fellows was trained in techniques to disseminate information on period poverty in their local areas. Additionally, they were also encouraged to take up menstrual education through the social media platforms they were being trained to operate.
Soon, I opened an Instagram account, which aimed to increase awareness about public policies related to menstrual education, sanitation, hygiene for women, etc. This led me to follow several similar accounts speaking about everything menstruation-related. Many of these accounts spoke about PCOS since it is the most commonly occurring disorder among menstruators. Initially, I was impressed with the kind of information these accounts used to put out. I felt they were talking about menstruation in a more comprehensive manner, which was missing in my school curriculum. Nevertheless, it didn't take me very long to realize that a lot of this information was inconsistent. Information on symptoms, causes, diet control, and risk factors were sometimes vague, and often different accounts gave diametrically opposing views and information on the same issues related to PCOS.
BeyondBlood first contacted me by replying to my story where I had reshared a post by a well-known period activism account. The post mentioned the difference between PCOS and PCOD. I believed they are two different disorders for the longest time, but BeyondBlood provided me with online resources that explained how PCOD was a redundant name for PCOS. This was very intriguing for me as it made me wonder what other myths are being knowingly or unknowingly propagated by so many of these menstrual education pages. This pushed me to apply for BeyondBlood's internship to tackle misinformation about PCOS on social media.
This internship was genuinely an eye-opener to the gaps in menstruators' information and how we are collectively disenfranchised from our right to know about our body and make informed decisions about it. I came across several posts on social media claiming that PCOS puts women at risk of developing endometrial cancer, cardiovascular disease, Type 2 diabetes, anxiety, depression, obesity, and other related illnesses. For someone who suspected that they might have PCOS, this kind of information definitely induced a certain amount of anxiety. After my internship training at BeyondBlood, I realized how most of this information is exaggerated and often completely wrong. I believe it is imperative when such information is being put out that the sources be mentioned for the viewer to check on their own. Additionally, mentioning the exact risk factor or the probability of a woman with PCOS developing any of these illnesses should not induce panic among the viewers. While speaking about the connection between PCOS and anxiety or depression, none of the posts mention that the mental health complications are often rooted in the social perception of women getting obese, having acne, hirsutism, or even probable subfertility and infertility, which are all caused by PCOS. (This is not to say that all women get these symptoms). Even the mere definition of PCOS given by most of these posts is flawed. At the same time, PCOS is, in fact, a hormonal disorder. I have come across several posts calling it a genetic/metabolic/reproductive disorder and sometimes all of these together.
Several gynecologists often share misinformation about PCOS on their social media. In such a scenario, the question arises whether a doctor's prescription should be taken at face value. Women are also raising questions about the benefit of being on birth control pills. Even in this sphere, several accounts propagate the usage of birth control pills, micronutrient supplements, fat burner capsules, and many other medicines as the one-stop solution to "curing" PCOS. There are hundreds of accounts selling teas, oils, detox drinks, capsules, rollers made of precious stones, and many such items under the pretense of curing PCOS/helping relieve the symptoms. While one can still turn a blind eye to the other misinformed posts, these posts on medications/cures are completely unethical and can be responsible for compromising their viewer's health.
As part of my internship task, I was supposed to identify such misinformed posts and accounts selling products claiming to cure PCOS. Furthermore, I was supposed to directly message these accounts, highlighting the specific information which is wrong or needs to be substantiated with proper sources such as medical journals, websites, peer-reviewed studies, etc. I made sure I also sent them links to resources that outlined the correct information on the specific topic which was being talked about in their posts. More often than not, my concerns were completely ignored by them, and when a few of them did care to reply, the response was generally one of hostility. I realized it's not their fault as there already exists excessive information on PCOS, which should be rather categorized as misinformation and disinformation, making it difficult for people to identify and be receptive to the correct sources of information. There is an urgent need to engage in patient advocacy for those suffering from PCOS, especially their right to correct,evidence-based information on a disorder they're dealing with daily.