In the age of sourcing information from TikTok and Instagram, we talked to people building inclusive online communities to spread awareness about polycystic ovary syndrome.
From Keke Palmer to Harnaam Kaur, there’s been an influx of PCOS content popping up on Instagram reels and TikTok For You pages. It’s a hormonal condition that affects 1 in 10 women in the UK, according to the NHS, and impacts trans and non-binary people too. Getting a PCOS diagnosis is an isolating and overwhelming experience. Most information online is full of medical jargon and conflicting ideas, so it’s challenging to determine what’s useful and what’s nonsense. Research by the Patient Education and Counselling Journal in 2021 showed that the biggest challenges people with PCOS experience is finding information that’s useful to them online. When you don’t have friends, family or a wider community who understand what you’re going through, millions of people turn to social media for guidance.
Alicia Lartey is an aesthetician and content creator based in London. She has over 35,000 followers on her Instagram and Twitter accounts. Alicia’s expertise is skincare, and the condition can cause acne flare ups. “I started talking about it because a lot of my clients have PCOS and I have PCOS and it does affect the skin with things like acne, the ingrown hairs that it leaves behind, the marks from that as well.” Societal eurocentric standards of beauty are even harder to combat as a Black woman with the condition. “I think when you’re not the ideal beauty standard and then you add Blackness to that, you have to unpack having things like acne and not having ‘perfect chocolate skin’ as they say, it just makes everything a lot worse. Because people are quite ashamed of things like body hair, you feel like a pariah within a group. You’ll be around other women who don’t have it, you feel really alone and uncomfortable.”
"You'll be around other women who don’t have PCOS, you feel really alone and uncomfortable."
— Alicia Lartey
Alicia’s experiences of isolation is why Neelam Heera-Shergill created Cysters, an online community to combat myths about reproductive health. What started as a social media page in 2015 is now a registered charity, which is “aimed at people of colour, the racialised community, LGBTQ+ groups.” The organisation prides itself on inclusivity of all genders and recognises cultural differences, such as how reproductive conditions are sexualised – and therefore stigmatised – in some communities. Neelam was 18 when she was diagnosed. At 33, she’s learned more about hormone disorders than she ever expected to. “Because of Cysters, I'm learning more about the conditions. A lot of people have almost had to unlearn what they thought their condition was, and relearn what it is now and be on that journey of really trying to advocate for better information and an awareness of conditions.”
Research by the University of California uncovered that most PCOS content shared on Instagram is motivational and related to health and wellness. The study, from November 2022 concluded that doctors could encourage patients to use social media for support and information related to the condition. Although she’s built a community of thousands online, Neelam has concerns about misinformation surrounding PCOS: “What I found online is that everyone seems to be like a health expert. You see something on TikTok and then see someone else replicating it with actually not quite accurate information. There's lots of advice out there, but it isn't actually accurate sometimes. And that's what my biggest concern is. Sometimes social media targets vulnerable people who are already going through a difficult time.”
"Sometimes social media targets vulnerable people who are already going through a difficult time."
— Neelam Heera-Shergill
PHOTOGRAPHY - RF STUDIOS
Lack of reliable information on PCOS is what motivated Despina Pavlou to create her own blog, YouTube channel and podcast, PCOS Oracle, over 10 years ago. Despina, a qualified personal trainer, has over 15,000 followers on Instagram, where she reviews products, dispels misconceptions about the condition and shares fitness tips tailored to PCOS-friendly lifestyles. “I definitely think from collaborating with people in that niche, and seeing how my community has grown over the years, I can see that people feel more supported,” she said. “Of course they're still going to be some accounts out there that still try to push cookie-cutter programs and approaches that don’t get to the root cause.” Despina is an advocate for ditching quick fixes that supposedly work for everyone, and believes newly diagnosed people should keep this in mind whilst doing their research. “I think there’s no harm in turning towards social media. But the people that are, let's say, influencers or people talking about something online, should also state that you should seek medical advice. It’s good that people are talking about it on social media. That's where a lot of people spend a lot of their time. So I think it's a good way to get people learning more about it, but people need to seek out an expert if that person isn’t.”
"It's good that people are talking about PCOS on social media, but people need to seek out an expert."
— Despina Pavlou
Leila Martyn also lives with PCOS and built her wellness brand, MyOva, to destigmatize hormonal conditions. After years of unpredictable periods and then several miscarriages in her mid-30s, Leila knew she had to take action to advocate for reproductive health conditions: “PCOS takes away everything that society tells you it is to be feminine. The number one thing as a woman, you feel like your body should do is to procreate. That's what we're on this planet for, especially when you want a baby. So when that's taken away from you, you feel like your body doesn't work, and you feel a bit useless. It’s like, ‘why is this happening to me? It's so easy for other people.’ Then you hear stories of people saying they accidentally felt pregnant, and I just think I've been timing this every month.” Leila decided to find out more about PCOS, but there was little information online, and most of it was medical studies which were challenging to understand. She became determined to find a solution to an issue that caused her — and so many other people trying to conceive — a deep sense of loss, disappointment and guilt.
She finally came across a natural supplement called myo-inositol. It was backed by promising research and was said to improve egg quality, something PCOS diminishes. After seeing positive changes in her health, Leila launched MyOva in 2016. Since then, she’s had two children and helped thousands of women across the UK regulate their hormonal health. The sense of community she’s created is what stands out the most to Leila after seven years in business: “A lot of women that come to us have been on that journey where they just haven't been able to get help or validation. So, I think having the community really helps with self-esteem, just because they all feel listened to.”
PCOS is a lifelong, incurable condition. However, the symptoms of it can be reversed depending on diet, exercise and lifestyle, and these factors vary for everyone. Neelam said she feels that research into PCOS often overlooks people from racialised backgrounds, who have different experiences of the condition. Like Alicia, she feels that the beauty standard is a constantly moving, unachievable goal post for non-white people. “Naturally, when you've got things like PCOS, you're never going to fit into those brackets. You're always trying to obtain this image of being something that you're never going to get close to because it's based on an outdated western ideology of beauty. I'm Sikh, and a lot of members are practising Sikh women, and that means they don't shave their hair. If they do start getting facial hair and they have PCOS, it can be quite thick. That can be quite difficult for people on their journey.”
Alicia, Neelam, Despina and Leila have built their communities predominantly online due to a lack of space for people who look like them. They created their niches in skincare, community organising and fitness to do their part to make it easier for the next generation of people living with PCOS.