In my spare moments, I scroll through TikTok to find thrift shop inspiration and Sydney’s best bagel spots — not to be told that the oral contraceptive pill I take every night is going to kill me. As much as I have tried to rid my feed of the minute-long videos telling me just that, they continue to wriggle their way back when I least expect them. Like many others, I experience frustration at seeing the same information repackaged and spoken about by people who are not healthcare professionals. But as someone living with polycystic ovarian syndrome (PCOS), this content consistently leaves me feeling vulnerable and scared.
Combination birth control pills are widely accepted as the only way to manage PCOS on a daily basis. Given that PCOS is a hormonal condition caused by increased levels of androgens and insulin in the body, the pill provides an effective way to regulate these imbalances. As well as reducing the risk of developing ovarian or endometrial cancer, the pill can manage other symptoms of PCOS including excess body hair, irregular periods and acne. Notably, the increased risk of diabetes and infertility caused by PCOS should be treated through other medications and lifestyle changes.
When I was diagnosed with PCOS at the age of 18, these details were very similar to those my gynaecologist gave to me. Consequently, the pill has provided me with a sense of agency and independence which would simply not exist if I continued to struggle with debilitatingly heavy periods and painful cystic acne each month. So why now, at 21, do I feel that being taken away from me?
The answer lies in the countless videos of women speaking about “the pill’s side effects I wish I knew about” or “why I’m terrified of the pill” currently circulating on social media. In addition to unsubstantiated claims that “the pill changes your brain” or “will smash all of your nutrients”, Dr. Sara E. Hill’s 2019 book How The Pill Changes Everything has also become a #booktok review trend. The book itself is not ‘anti-pill’, and instead raises some important concerns around the lack of research into female reproductive health. However, the way it is discussed in popular discourses has made some users “never want to take birth control again”.
Of course, TikTok and other social media platforms provide an important space for women to share their negative experiences of birth control and build supportive communities. Furthermore, the pill does have an outrageously long and dangerous list of side effects, including deep vein thrombosis, heart attack, stroke, breast cancer and liver tumours. To deny these two things would be to deny women’s experiences and the risks they take while trying to care for themselves.
So herein lies my anger: I am constantly receiving conflicting information about the safety of the pill, and yet I do not have any other options for treatment. The pill, initially created as a form of contraception, was never even intended for use by people with PCOS. Above all, this is a testament to the chronic, structural neglect and underfunding of research in this field; one which, despite the Labor government’s commitment to $70 million in additional spending to women’s reproductive and maternal health in 2023, is unlikely to be continued in this year’s upcoming federal budget.
Does this mean I am going to stop using TikTok? Of course not. My point here is not to undermine the veracity or utility of these videos, but to instead address them from a perspective where one’s wellbeing is at risk either way. In a decision that feels like choosing between bad and worse, perhaps what we need is a third, healthier alternative — not only for the way we talk about the pill and PCOS, but how we transform this discourse into safe treatment options.