Getting real about women’s health… Sorry we’ve been lied to
Behind the rise of misinformation in women’s health
When it comes to misinformation, many have been quick to play the blame game: “how could anyone believe this? Don’t they realise it’s ridiculous?! ”
News articles, like this recent piece from The Washington Postabout the increase in online misinformation about birth control, connect it to a rise of politically charged content and ideologies across social media. And while we need to see how it’s tied with wider political discourse and acknowledge the insidious pull of social algorithms which reward divisive content, these articles miss a crucial and equally important point: women have been lied to, manipulated, and dismissed.
The problem of misinformation and the rush to (once again) put the blame on women are two sides of the same sexist coin. When women have spent years either being told that their bodies and their bodily functions are gross, stinky, and smelly, OR that they only exist as an object to be lusted over, it’s no wonder that a lot of women simply don’t feel comfortable discussing their bodies and mental health candidly.
And even when we do, we still aren’t being heard. When symptoms are simply chalked up to stress, concerns about procedures and medications are written off with “that’s just how it is,” and genuine worries are brushed off with a patronising, “you mums always worry too much,” it builds up a wall. It can leave many feeling stupid, confused, angry, invalidated. Doubting how well we know our bodies, doubting our own instincts, feeling disconnected, lost, and alone.
So, if you’re facing information gaps and stigma, and you don’t trust your HCP will listen to you, where do you go? Family. Friends. The internet.
INTERNET – A DOUBLE-EDGED SWORD
At some point or another, we can all admit to having turned to the world wide web for our health. A recent report from Superdrug found 18% of us turn to the internet and social media as our first port-of-call for health information, with 1 in 5 looking to the internet before NHS resources (source). From looking up symptoms, to posting from the comfort of anonymity to ask about something that’s worrying us, to finding an online community of people who just get us, the internet can be a balm for the health things that (sometimes literally) keep us up at night. But for all the good that online health information brings, there is a far more insidious side of misinformation and disinformation – particularly in women’s health.
Given the lack of research and funding in the women’s health space that we’ve mentioned in our previous blogs, as well as the stigma and continued misogyny that surrounds women’s health, the perfect storm has been created. To dig deeper into this, we spoke with Dr Frances Yarlett, Medical Director at The Lowdown, a women’s health research platform that provides credible, scientific information alongside reviews from women.
“Where there is a lack of understanding and research, something needs to fill this gap. And this is where misinformation online and on social media can thrive. If there is no credible place to debunk misinformation, the myths start to take over.” said Yarlett.
And the problem is particularly concerning for young women. A survey of 2,000 people from Superdrug found 43% said they learned more about sexual health from TikTok than they did at school, including 55% of 16-24 year-olds. (Tackling Health Misinformation on Social Media (superdrug.com)) Dr Babak Ashrafi, a GP specialising in sexual health who contributed to the survey, was quoted saying, “girls were more likely to act on health-related social media content, making them more vulnerable to misinformation.”
‘A WORLD OF HALF-TRUTHS’
If you’ve been doom-scrolling on Instagram or TikTok recently, or have seen the articles mentioned above, you might be aware that a lot of young women are breaking up with hormonal contraception. Once seen as an act of liberation for women, it’s started to come under scrutiny. As many have taken to the internet to voice their frustration, it’s worth acknowledging that we’ve known for a while that side effects can be worrisome, at times debilitating, for some women: it’s why around 1/3 of women stop using hormonal contraception in the first year (source). “Despite the oral contraceptive pill being available for over 60 years, the side effects of contraceptives are still shrouded with mystery – we don’t know which women will experience which side effects, how to predict them, and I don’t think we fully understand the range of side effects that can happen,” said Yarlett. “This lack of understanding of contraceptive side can cause several problems.”
Misunderstanding and a lack of clarity on side effects has caused some individuals to make a range of false claims online, including statements that it causes infertility or brain tumours, or can change users’ sense of smell and thus affect who they are attracted to. “In my clinical practice, I am hearing time and time again that women are worried about the hormonal contraceptive pill ‘changing their brain’ or ‘making them attracted to different people,’” said Yarlett. “Now, these claims are based in some truth, which is often the most powerful type of misinformation, half-truths. However, the studies that have found functional and psychological changes to women on hormonal contraceptives are small and can’t be translated into clinical context, aka real life, as there are so many other factors that can contribute to these changes.”
These concerns are pushing many to switch to non-hormonal methods, primarily the rhythm method and fertility awareness method. The rhythm method is a calendar-based method that estimates fertile days during the menstrual cycle and instructs users to abstain from sex or to use barrier protection during these days. Other fertility awareness methods involve tracking basal body temperature (BBT) first thing each morning, or tracking vaginal discharge to identify fertile days. These methods can require a change in behaviour for many individuals, and – like any form of contraceptive – may present issues for adherence. Online content often positions these as safe and effective, highlighting that it’s ‘all natural’, that it doesn’t present any side effect risks, and that the chance of getting pregnant is low even without using barrier protection. But while it might be a great option for some individuals, it’s not right for everyone and isn’t without risk. When instructions aren’t closely followed, they are only 76% effective, (Source) making it one of the least reliable forms of birth control (source).
Another concerning example of how social media contributes to misinformation about women’s health is the normalisation of severe premenstrual symptoms. On platforms like Instagram and TikTok, there is a proliferation of memes and content that makes light of debilitating premenstrual experiences, treating them as a universal and unavoidable part of being someone that has a period.
This social media trend actively perpetuates the misconception that extreme premenstrual symptoms are simply a normal and expected part of the menstrual cycle. However, the reality is that these types of severe emotional and physical symptoms may indicate a more serious condition known as premenstrual dysphoric disorder (PMDD). Recognising the difference between PMDD and regular PMS is essential so that women can receive the specialised care they need, rather than dismissing their debilitating symptoms as an unavoidable part of being female.
WHAT CAN BE DONE?
Confront taboos head-on
“It is a sad truth that the Venn diagram between taboo topics and women’s health can often feel like a circle, there’s so much overlap,” said Hannah Marcus, Trustee of Talking Taboos, a pioneering charity raising awareness and leading research on all taboos. “Taboos function by keeping topics shrouded in silence and shame and hidden from public conversation. A knowledge vacuum is created; an environment perfectly designed for misinformation to flourish. This means women are unable to find consistent, helpful information about what it happening to them, or are restricted by shame and stigma into not wanting or knowing who to ask. And so they turn to whisper networks, rumour or the internet; whether they’ll find helpful answer or made-up misinformation is a roll of the dice.” When health brands choose not to speak on a topic, use sanitised euphemisms, or use language and narratives that don’t align with lived experience, it continues to reinforce this stigma, pushing women to the margins to find information.
But for some, making the shift to confront taboos with candour can feel daunting. “This is why at Talking Taboos we’re working to bring awareness and build tools that will guide people in how to bring taboo topics into the light,” said Marcus. Talking Taboos addressed the stigma surrounding women’s bodies in last year’s Today’s Taboos report, acknowledging the ‘daily disgusts’ that abound in how vulvas are discussed. One place to start? Using correct anatomical language and ensuring that messages actually reflect anatomical realities, not pushing narratives that masquerade as ‘empowerment’ while reinforcing this stigma. Talking Taboos has also launched a new resourcewith practical advice on discussing taboo topics.
Canesten’s ‘The Truth Undressed’ education platform, puts this into practice. In collaboration with the Personal, Social, Health, and Economic (PSHE) Association, teaching materials were developed with the mission to help educate young people with vulvas about their bodies, and help to reduce the shame and discomfort surrounding intimate health. The tiered teaching resources are for Years 7-13, using anatomically accurate imagery and language. A dedicated microsite was also developed by Canesten to broaden access to the information. Since then, the initiative has continued to grow and evolve with its continued social media campaigns, demystifying vulval and vaginal health by delivering information in a way that resonates with Gen Z and Gen Alpha and lobbying work at a policy level.
The thinking behind The Truth Undressed is simple: before getting into other educational areas around relationships and sexual health, young women and girls have the right to understand their bodies – without shame, stigma, or speculation.
“For too long, the story of female health and anatomy has been told against a backdrop of what we see as a society – immediately rendering it as hypersexual and explicit or as a source of shame. These narratives have continued to be driven by social media, dictating what is ‘acceptable’, ‘perfect’, ‘normal’ when it comes to vulvas – but we know that these representations certainly aren’t reality. Instead of allowing shame and sexualisation to write the story, we wanted to put the power back into the hands of people and get real about them.”said Daria Costantini, Marketing Lead for Canesten at Bayer Consumer Health.
The work brings vulvas and vaginas out of the shadows and acknowledges the stigma and sexualisation that is often aimed at them, while addressing common questions, concerns, and myths. Diversity and inclusion were embedded in the campaign, helping to demonstrate that ‘normal and healthy’ isn’t just one idea of what a vulva looks like. Photos were taken of various individuals, capturing a range of ethnicities, gender identities, body sizes, and ages, helping to normalise vulvas in all their shapes, sizes, and colours.
“Through the collaboration, we have been able to address existing gaps in the curriculum and create an accessible resource that can be relevant and appropriate for all young people, regardless of prior knowledge. By banishing the taboo and focusing on the reality in a desexualised way, we have been able to provide the tools and information needed to help young people feel more confident in their bodies and about managing their health,” said Costantini.
Educate HCPs
While it is improving, formal training on women’s conditions and contraceptive side effects is limited. “Healthcare professionals aren’t trained in great detail about contraceptive side effects. Medics are trained to use an evidence base to make decisions and provide advice. The evidence base is scanty for contraceptive side effects and needs to be actively sought out by interested clinicians,” said Yarlett. “This means that when women start discussing side effects with clinicians, they may feel dismissed or unheard as medics respond with, ‘it can’t be your pill…’ when really, it’s ‘there’s limited research on this…’”
Finding new ways to educate HCPs on women’s health and contraception in a way that is seamless will be key to enhancing understanding and allowing for better engagement with patients. HCPs also need to be supported to engage with women on these matters empathetically, listening to their experiences, being transparent about the available research, and working together to identify appropriate solutions.
Focus on engagement and accessibility
Part of what makes misinformation online so enticing? It’s delivered by someone familiar and relatable in a captivating way – usually without any need to search for it. Sadly, the same can’t be said for robust, peer-reviewed health and medical research. “The research we have is clinical, boring and not patient-friendly,” said Yarlett, “This is in stark contrast to a friendly face on social media who is more relatable to women who have felt unheard. Naturally, people are more likely to engage with a friendly face than a 2000-word guideline or research study.”
Finding low-friction, engaging ways to create and disseminate accurate health information can make a difference in combatting health misinformation. When taking an intersectional view and acknowledging barriers to health information-seeking related to time poverty, health literacy, or distrust, it underscores the need to communicate health messages in a way that engages and brings people in, rather than broadcasting same old-same old.
Accessible resources, like The Lowdown or The Truth Undressed website, can help support conversations with patients by addressing common misconceptions with clear language with the science to back it up.
Keep women at the centre
Talk to women. Listen to women. Ensure their voices, experiences, and lives are present and reflected at every step of the work. Make sure that women who are affected by the health condition or life stage that you’re seeking to represent are included in the planning stages. Ask them if you’ve got the language right? Is the imagery appropriate? Does the way you have presented information resonate?
And so, we come to the end of our women’s health series with this blog. As you can probably tell, this is an area we are passionate about here at Curious Health and would love to hear any thinking this blog, or the others in the series have sparked for you.
Curious about how you can help turn the tide on misinformation in women’s health? Our team at Curious Health Communications Ltd have expertise across a variety of conditions and therapies in women’s health and experience in crafting insights-driven, community-led campaigns that resonate. Get in touch for a chat by emailing [email protected]
If you missed parts 1 and 2 of our blog series ‘Getting real about women’s health, click below:
Getting real about women’s health… The pain gap: it is indeed a thing
Getting real about women’s health… Fatal delays and the misdiagnosis epidemic