Keywords
“There has been a sharp increase in the number of women talking about the menopause on social media…as many turn online for…advice on how best to manage their symptoms.”[
[1]
]Social media can be a force for good or ill. This summary is based on my experience volunteering with the Menopause Café charity and interviews with three social media menopause influencers.
Force for good
- 1)Building community“Social media helps break the taboo of menopause by allowing users to talk about their experiences, interact with others and feel less alone. Initially, this online conversation was conducted in private groups but more recently it is being held in public, on platforms like Instagram, helping to normalise this phase of life and make it part of everyday conversation,” says Diane Danzebrink, menopause activist. The online disinhibition effect [[2]] facilitates the sharing of anxieties, experiences and tips. Provided this is not positioned as medical advice, it is supportive, eases the sense of isolation and often encourages people to contact their doctor.
- Suler
CyberPsychology & Behaviour. 2004; 7 (Mary Ann Liebert Inc.)https://drleannawolfe.com/Suler-TheOnlineDisinhibitionEffect-2004.pdfDate accessed: February 3, 2023 - 2)ActivismSocial media is a vital campaigning tool for menopause activists. It enables petitions to be shared easily. “#MakeMenopauseMatter is a grassroots campaign. Our petition has been signed and shared by over 185,000 people and has already achieved two of its aims. It is highly unlikely that a grassroots campaign would have achieved this without the help of social media,” says Danzebrink, whose campaign aims are: GP education, menopause on the school curriculum and better UK workplace support.
- 3)Education
- a)For the public: Social media is a quick, accessible way to disseminate information. The Menopause Cafe public Facebook page shares links to guidance, for example from NICE and NAMS, and articles on menopause research. Amanda Thebe, fitness expert and author of “Menopocalypse”, distilled the 2022 joint position statement on HRT by the BMS et al. into a thread on Instagram and Twitter, easily digestible by the time-pressed layperson. Thebe describes herself as “a bridge between the menopause medics and the general population…like a patient advocate. I made it my mission to give out valid information and call out misinformation”. Dr Nighat Arif, GP, regularly posts short menopause information TikTok videos, set to lively music, often in ethnic minority languages, reaching people who might not visit their GP nor read online guidance.
- b)For medics: Social media also keeps medical professionals informed. #MedTwitter “flattens hierarchies” [[3]]: non-specialists access debates between experts and question them. Anyone can read these threads, also giving the public hitherto unavailable access to experts. Journalists use #journorequest, to quickly find specialist commentators.
- a)
- 4)Research
- a)Calls for participants: I regularly receive calls for participants from menopause researchers. We circulate these on our social media channels. It's an effective way for researchers to access their target groups, and highlights the research undertaken.
- b)Social media can inform researchers which topics concern menopausal people. “The top topic for #Menopause was weight loss/fitness, with hormones second; this is different from the top topics in research as measured by articles on PubMed” [[4]].
- Arseneau M.E.
- Backonja U.
- Litchman M.L.
- Karimanfard R.
- Sheng X.
- Taylor-Swanson L.
#Menopause on instagram: a mixed-methods study.Menopause. 2021; 28 (PMID: 33399318) ([Accessed Feb 3rd 2023]): 391-399https://doi.org/10.1097/GME.0000000000001713
- a)
Force for ill
- 1)Confusion“… differences of opinion...can escalate into unhelpful online jousting. Medical health professionals take to social media aiming to share what they believe to be the correct information, but they don't all agree and seeing disagreements…online creates yet more confusion for patients,” says Danzebrink. The online disinhibition effect [[2]] can lead to social media spaces becoming “a bit toxic and a bit tribal” [
- Suler
CyberPsychology & Behaviour. 2004; 7 (Mary Ann Liebert Inc.)https://drleannawolfe.com/Suler-TheOnlineDisinhibitionEffect-2004.pdfDate accessed: February 3, 2023[3]]. - 2)NegativitySocial media amplifies the negative aspects of menopause, since those with postmenopausal zest are less likely to post, whilst those suffering severe symptoms are more likely to search for answers and vent their frustrations. “Negativity drives more clicks and shares than positivity” [[3]].
- 3)MisinformationFalse facts are liberally shared on social media, either unintentionally or for commercial gain. Thebe says “People out there with millions of followers get a tiny bit of truth and extrapolate that with a whole load of misinformation. They draw people in and it's really hard to unpick the false information they're giving, especially when there's a little bit of good stuff in there.”
- a)Unintentional: Social media thrives on sound bites; nuanced studies are simplified and frequently misrepresented in headlines such as “Everyone should take HRT forever”, “Testosterone gives you an energy boost”, “HRT prevents Alzheimer's”. Dr Annice Mukherjee, Consultant Endocrinologist, says that women are particularly trusting of claims they see made on social media by high-profile influencers. They assume these must be reliable sources of information, due to large followings and endorsements. Personal or anecdotal experiences are conflated with evidence and GPs are sometimes discredited if they follow peer-reviewed evidence rather than “influencer” guidance. “Nuance and diversity of experience are not appreciated on social media. ‘I feel fine on a very high dose of hormone therapy, so you will too’, is an example I've frequently observed,” says Dr Mukherjee. Influencers often share compelling stories about whichever intervention relieved their symptoms, be it a supplement, diet plan or medication, suggesting it will work for everyone else too. Everyone wants a silver bullet.
- b)For commercial gain: “The menopause space has become commercialised and competitive, leading to feeds being full of products and services aimed at those who have menopause in their search history,” says Danzebrink. “Social media marketers...become menopause ‘influencers’, hired to sell products by companies because they have followers” [[5]].
Arseneau et al. [[4]] found that 16 % of Instagram posts with #menopause were advertising services or products. Thebe observes that some doctors on social media use the appeal to authority “so that you can't question them because they are a doctor” whatever their speciality, often leading to selling of supplements or private practice. She asks “What's the ulterior motive for putting these extremist headlines out there?” It behoves us to “follow the money ”or cui bono and investigate posters' conflicts of interest and commercial biases.- Arseneau M.E.
- Backonja U.
- Litchman M.L.
- Karimanfard R.
- Sheng X.
- Taylor-Swanson L.
#Menopause on instagram: a mixed-methods study.Menopause. 2021; 28 (PMID: 33399318) ([Accessed Feb 3rd 2023]): 391-399https://doi.org/10.1097/GME.0000000000001713 - a)
- 4)UnregulatedSocial media platforms are unregulated businesses, driven by profit, not public good. Elon Musk's purchase of Twitter threatened the platform's reliability [[3]] and removed the credibility of blue-ticked accounts. People come to rely on these communities and information hubs, which can quickly disappear or be hijacked for other purposes.
Conclusion
“Unfortunately, social media is a two-way street – while many genuine healthcare practitioners are active in the field there are countless other self-proclaimed experts peddling (often damaging) misinformation...It's a constant battle that must be fought” [
[6]
]. Dr Mukherjee echoes this: “I am confident we will ride this wave of misinformation. We need more medics to join social media platforms like Instagram to reach women.” But this takes time, patience and a thick skin!- Short H.
The Role of social media in menopause health care.
Post Reproductive Health. 2017; 23 ([Accessed Feb 3rd 2023])https://doi.org/10.1177/2053369116680895
Contributors
Rachel Weiss is the sole author of this editorial.
Funding
No funding was received for the preparation of this editorial.
Provenance and peer review
This article was commissioned and was not externally peer reviewed.
Declaration of competing interest
The author declares that she has no competing interest.
References
- Women Turning to Social Media for Support as they Go through the menopause.([Accessed Feb 4th 2023])
- CyberPsychology & Behaviour. 2004; 7 (Mary Ann Liebert Inc.)https://drleannawolfe.com/Suler-TheOnlineDisinhibitionEffect-2004.pdfDate accessed: February 3, 2023
- Stokel-Walker, C. “RIP #medtwitter? What Twitter’s potential collapse could mean for tweeting doctors”.BMJ. 2022; 379: 2834
- #Menopause on instagram: a mixed-methods study.Menopause. 2021; 28 (PMID: 33399318) ([Accessed Feb 3rd 2023]): 391-399https://doi.org/10.1097/GME.0000000000001713
- #MissInformed about menopause on social media.([Accessed Feb 4th 2023])
- The Role of social media in menopause health care.Post Reproductive Health. 2017; 23 ([Accessed Feb 3rd 2023])https://doi.org/10.1177/2053369116680895
Article info
Publication history
Published online: March 08, 2023
Accepted:
February 21,
2023
Received:
February 14,
2023
Publication stage
In Press Journal Pre-ProofIdentification
Copyright
© 2023 Published by Elsevier B.V.
