Introduction
In the past couple of weeks, a few advertisements have become permanent fixtures across my social media apps. Most were sponsored ads from Gynoveda, a company that works for healthy menstruation by using Ayurveda. The tagline - "freedom from PCOS" plastered on the ads across three social media platforms - Instagram, YouTube, and Facebook left me particularly befuddled. I wondered why a company working in menstruation would make such a claim in the first place. In the videos, the company substantiated their claim through brief clips of women sharing their "success stories" with Gynoveda's products, particularly for PCOS. I visited their page on Instagram once, and numerous other posts began flooding my explore section on Instagram. As I dug into the PCOS related ones, I noticed a few hashtags became recurrent. These included #PCOSIndia, #PCOSWeightLoss, #PCOSAwarenessIndia, #PCOSDiet, #PCOSSupport, #PCOSCommunity among the several others. The #PCOSIndia hashtag piqued my interest, and I decided to explore further the contents and narratives of the posts tagged under this hashtag. Several posts made claims about reversing PCOS and curing it completely by employing several modalities – diets, detoxes, teas, natural techniques, clean eating and personal PCOS programs that included workouts, exercise tips and diet plans.
In this blog, I examine those posts on Instagram that make the specific claim to "reverse"/ "cure" PCOS and its symptoms and "provide complete freedom from PCOS". Through this essay, I wish to highlight the kind of misinformation that has become ubiquitous on social media (Chou, Oh, & Klein, 2018), especially for such a complex and multi-faceted condition as PCOS. At the outset, I must state that since I do not have the lived experience of PCOS, I have sought the help of my friends who have been diagnosed with PCOS. They have been kind enough to share the everyday realities of living with PCOS candidly. After providing a summary of the various posts selected for review, I analyze the narratives they perpetuate by looking at relevant literature and lived experiences of my friends with PCOS.
Understanding Health-Related Misinformation on Social Media
This section lays out what constitutes health-related misinformation on social media to build on the concepts explained here when I analyze the posts and content related to PCOS misinformation on Instagram. The COVID-19 pandemic provided us with a glimpse into how misinformation spreads like wildfire across social media platforms. Alex Hern's report on Instagram's algorithms peddling health and vaccine-related misinformation about COVID-19 in the United States shines a light on the impact they can have on individual and public opinion. Similarly, in India, social media platforms like WhatsApp, Facebook, and Instagram became hubs of perpetuating misinformation on COVID-19, its origins, remedies and conspiracy theories (Badrinathan, 2021). According to Chou, Oh, & Klein (2018), health misinformation refers to health-related claims that are "currently false due to a lack of scientific evidence". While some evidence links the sharing of health-related misinformation to users' health behaviours, health-related knowledge and attitudes, only more research in the field can establish this link with certanity. Research on social media misinformation and the previous outbreak of diseases in different parts of the world, such as the Zika virus (Bode & Vraga, 2017) and the Ebola virus (Guidry, Jin, Orr, Messner, & Megnack, 2017), platform-specific misinformation on cancer (Walsh-Buhi, 2020) or the human papillomavirus (HPV) vaccine (Massey, et al., 2020) provide deep insights into the nature, content and impact of social media misinformation.
Several theories have been adopted from pre-existing ideas across the disciplines of psychology, communication, network sciences to explain the mechanisms involved in the spread of health misinformation from a micro-level to a macro level on the internet (Wang, McKee, Torbica, & Stuckler, 2019). Health-related misinformation is particularly difficult to contain and correct, given that once a belief is adopted, accepting any contradictory or correct information that does not match the pre-existing set of beliefs becomes difficult (Bode & Vraga, 2017, citing Jerit & Barabas, 2012). Resultantly, the viewer tends to dismiss any source of information that debunks or corrects the misinformation. On social media especially, assessing the credibility of sources is not only challenging, but the lack of factual verification and accountability becomes a barrier to verified information and sources, like Wang, McKee, Torbica, & Stuckler (2019) observe.
What Do Instagram Posts Reveal?
The hashtag #pcosindia contains nearly 9000 posts where one can find an overwhelming amount of information on PCOS targeted at the Indian audience. From Mythbusters, memes, tips on lifestyle management for PCOS (diets, recipes, exercise and weight loss tips), to dissecting different aspects of PCOS. Many posts break down the use of certain medications, fertility, understanding hormonal interactions, simplifying medical terminologies. From this vast ocean of information and content, I carefully looked at posts that explicitly mentioned "PCOS reversal" or "cure" or "freedom from PCOS". Additionally, I chose posts from pages that were not PCOS-centric but created a few posts about reversing PCOS using a few tips and techniques. Some posts were as recent as June 01, 2021, while some dated back to 2020. One post (among other similar posts) from the account LetFoodCureYou by a doctor states that PCOS reversal meant regulating one's hormones without pills and medications. The account's solution is to do everything naturally and suggest simply eating healthy home-cooked foods and maintaining a healthy routine. Another account, PCOS.Dietitian.Asiyaali, a nutritionist by profession, runs the page Crunch & Cheer and claims that through a personal program, one can reverse PCOS naturally. Other posts from the same account also make similar claims.
At some places, the account speaks of "managing PCOS", while at some places, it claims to "reverse PCOS". Another account run by a doctor called PositiveFit_27 shows a before and after weight loss photo. The person running the account shows how she naturally reversed her PCOS through diet and lifestyle modifications only. This post that has multiple congratulatory comments also advises to "keep grinding" to lose weight. An account run by Dietician_SunnyGupta while a weight-loss centric page features a few posts aiming at "fat/weight loss diets" for PCOS. The captions of these posts reveal why the dietician believes that even a small amount of weight loss can reverse PCOS symptoms by targetting the "root causes" of the condition. Other pages (including the ones above) actively advise people against hormonal or birth-control medicines, such as an account called GetFitWithAnkit.
Addressing Inconsistent Claims
Having described some of the content of these posts in detail, in the following sections, I connect some of the broader themes to the larger question of health misinformation on social media. Across the posts, particularly those with claims on PCOS reversal and cure, three main areas emerge – one, posts that give diet-based advice; two, content related to exercise and workouts for PCOS and three, medications for PCOS. Among the posts that address diets and different types of foods for PCOS, one sees clear distinctions between "healthy" versus "unhealthy" foods, "foods to be included" versus "foods to be avoided". A lot of posts also prescribe colourful, eye-catching food recipes as healthy alternatives to everyday recipes. Some even prescribe detoxes and extreme steps such as dry fasting, where one does not eat nor drink anything for extended periods to release toxins from the body.
Across the posts, these food tips (which are numerous and vary widely in their claims) are depicted as guarantees to PCOS reversal and cure. Most do not mention it explicitly, but the accounts direct the viewers towards the "personalized PCOS programs" available on their accounts. The proof that their programs work efficiently is the user testimonies in the form of compilations of messages. These testimonies share how solely through diets and weight loss, the individual has successfully started their periods naturally, and their PCOS “problems” have come to an end.
Several accounts that make posts about PCOS-based weight loss are indeed weight-loss centric accounts. The occasional post about PCOS also comes from this framework. Often the posts on PCOS will only focus on weight loss (such as stating the kilos of weight one shed, or before and after pictures) but on reading the full caption; one sees the words "reversal" and "complete cure" in some parts of the text. For example, accounts by doctors or dieticians such as PositiveFit_27 or Dietician_SunnyGupta are filled with posts on before and after weight loss pictures, workout videos and detox diets. On scrolling down PCOS.Dietitian.Asiyaali's account, one sees it is primarily weight-loss based.
The account's focus has relatively recently shifted to PCOS-related content (cure/healing/reversing/managing PCOS, the account's stand remains unclear). Posts from these weight loss-centric accounts show individuals losing weight, but as users consuming this information, we don't know if they gained the weight back, we're able to maintain the weight they lost, and the methods and techniques through which they lost the said weight on the posts. Most of these accounts prescribe weight loss as the first line of treatment for PCOS while also acknowledging that weight loss is not the only solution or treatment option. This inconsistency in the claims is seen across these posts and the various posts tagged under other hashtags related to PCOS. The hashtag #reversePCOS is a prominent example where posts on claims on a complete reversal of PCOS come from several weight-loss centric accounts that eventually direct the viewer to their personalized programs.
The third category that shines across some of these posts is the idea of pill shaming. From the bio of some accounts to their posts and the captions, the word "naturally" is often found in big, bold letters. Some posts from accounts such as LetFoodCureYou pose questions to the viewers asking, "How can PCOS be reversed without taking any pills?" The answer to that, the account states, is an all-natural approach to reversing all symptoms of PCOS – from ovulation to fertility to conceiving – each aspect is contingent on making lifestyle changes only through diet and exercise. Others such as GetFitWithAnkit tell individuals to avoid as many pills as possible. These attitudes that place a moral value (usually by calling it wrong or unnecessary) on those taking medicines and pills, especially in PCOS, constitute pill shaming. Their insistence on only seeking natural cures for PCOS and claiming that sleep, food and a routine will guarantee the complete reversal of all PCOS symptoms presents a one-fits-all narrative to those consuming this information. In doing so, they negate the highly individualized and heterogeneous nature of PCOS since several people depend on various medications to manage their symptoms of PCOS better. For each query, concern and question about individual problems in the comments of these posts, the accounts, yet again, push the viewers towards their PCOS reversal programs.
The information these accounts share then become contradictory, with claims shifting on the diet and exercise tips post after post and account after account. In some places, these accounts acknowledge how and why weight gain happens for PCOS (through infographics and easy-to-understand diagrams) and why losing weight becomes extra difficult with PCOS. They also acknowledge that weight loss is not the only step ahead for living with PCOS. Yet, there is a constant emphasis on the benefits of weight loss. Many posts advise keeping one's stress in check yet asking the viewers to keep grinding and stay motivated without making excuses for not losing weight. Many posts address the mental health concerns that people with PCOS encounter in their everyday lives, such as anxiety, depression, fatigue, tiredness, and surviving with the many symptoms of PCOS. Some even dispel myths about PCOS being one's fault or ill-luck. Yet, most such posts fail to mention the barriers to healthcare, dearth of readily available, evidence-based information on one's syndrome and support from healthcare professionals. In the face of such contradictory, varied and large volumes of information, personal narratives and testimonies of living with PCOS are crucial and insightful. The next segment focuses on the testimonials on these posts, the personal narratives from my conversations with my friends with PCOS, and literature exploring lived experiences of people living with PCOS.
What Do User Testimonials and Personal Narratives Reveal?
Articles, blogs and essays were written by people living with PCOS document the trials and tribulations individuals face in their everyday lives. Extensive qualitative interviews that explore the lived experiences of people with PCOS (Snyder, 2006; Williams, Sheffield, & Knibb, 2015; Tomlinson, et al., 2017) concur that getting a diagnosis, being believed enough
by the doctors to receive proper care, to the everyday management of one’s symptoms and
dealing with the comorbidities heavily impact one’s emotional and psychological well-being. Comments on several posts reveal that fat and overweight patients (I use the word here as a neutral descriptor of one’s body) were told to simply lose weight by most doctors they visited. They mentioned that their doctor, often the gynaecologist, barely went beyond weight loss and medications and did not provide them with support or insight into the intricacies of their syndrome.
As a result, individuals diagnosed with PCOS were left with limited information on their condition and therefore turned to the internet, online support spaces and social media to find answers to their questions, queries and concerns. In doing so, they tried to make sense of their experiences and gain support and insights from people who struggle like them. In one such study, women described that searching for answers by themselves, given the limited help and support from healthcare professionals, was "exhausting", "frustrating", and "confusing" (Sanchez & Jones, 2016). Further, research on the information needs of those diagnosed with PCOS crucially points that this paucity of reliable information on a range of symptoms such as fertility-related queries, weight-management concerns also delays diagnosis, leaving individuals helpless and uncertain about where to look for information (Avery & Braunack Mayer, 2007).
When I asked my friend T, who has been living with PCOS for several years, about her experiences, she noted that "living with PCOS is quite difficult". She explained how diet, exercise and different medicines all have a complex interplay when one lives with PCOS. My other friend, M, described the long struggle that she faced before getting a definitive diagnosis for PCOS and the impact that hormonal imbalances had on her journey. Both T and M went to multiple doctors searching for correct diagnosis, support and proper treatment and found that the information they received was sparse and unhelpful. T noted that given the abundance of misinformation on PCOS on the internet, she prefers to look at websites where doctors or clinicians medically review the information. It adds a layer of authenticity and reliability to what information she consumes. She found a few nutritionists on Instagram.
Whose advice helped her, but she ensures that the nutritionists she follows are registered and with qualified degrees. M found information on medications and the side effects of such medicines mainly through her friends who have been diagnosed with PCOS. They informed her about their experiences with oral contraceptive pills and other hormonal medications. As T also pointed out, a support system or a community (even if virtual) becomes necessary and a source of comfort when living with PCOS. T also cautions that weight loss is not always a guarantee to getting regular periods as most doctors believe and sheds light on the various other factors that must be given equal weightage while managing PCOS symptoms. T and M's journeys with PCOS, though different, demonstrate the difficulties in managing everyday symptoms and the comorbidities that come with the syndrome.
A commonality one can observe across PCOS reversal posts on Instagram are the user testimonies on each account. They stand as concrete proof to the viewer that once enrolled in the personalized PCOS reversal/cure program, curing and reversing PCOS becomes relatively simple and easy. As mentioned above, the personalized PCOS reversal programs emphasize a "natural approach" by only including lifestyle changes (dietary changes and exercises) and insisting on avoiding all medicines such as metformin and birth control pills. A testimony on an account run by a doctor reads that through the account's personalized PCOS program, "90% of PCOS was reversed". Someone else on the same account writes that the doctor assured them that all symptoms of PCOS could be reversed solely through the diets prescribed in the personalized program. These testimonies come from a PCOS-centric page. For other weight-loss centric accounts, testimonies for PCOS-related weight loss overlap with testimonies on regular weight loss. It is worth questioning the intention behind weight loss-centric accounts suddenly shifting gears towards PCOS-related content on their accounts, especially those that guarantee the viewers complete reversal/cure to their syndrome.
Despite accounts taking cognizance and acknowledging the myriad, individualized ways in which one lives with PCOS, accounts disseminating tips and information to its viewers continue to set unrealistic goals for people already living with a chronic condition. Posts that suggest shedding nearly 30 to 40 kilos of weight within months to completely eliminate the entire constellation of symptoms that are a part of PCOS do a disservice to the people who struggle with weight loss after the weight gain that occurs in PCOS. They also pass moral judgements on people inadvertently through the "if this user of the PCOS reversal program can do it, so can you" trope. This leads to the erasure of personal struggles of many individuals who face varying degrees of barriers to proper healthcare facilities, struggle with several comorbidities or are simply doing their best in their capacities. The last segment deals with the implications of this rising trend of PCOS reversal programs on Instagram. Their role in disseminating such information to viewers adds to the already large volumes of myths and misinformation surrounding PCOS.
Adding to the Noise?
A quick Google search with the words "PCOS reversal" throws up websites after websites that claim the "natural ways to reverse PCOS" with the exact information one sees on Instagram – natural, exclusively through diets and exercises, with reduced dependency on medicines. However, websites that address PCOS myths also remind the viewers that there is no cure for PCOS. Numerous peer-reviewed research articles reiterate that the aetiology of PCOS remains largely unclear and unknown (Teede, Deeks, & Moran, 2010; Khadilkar, 2019). Years of research also point to several linkages and contributors towards PCOS, such as insulin resistance, hyperandrogenism, environmental and genetic factors and obesity (Escobar Morreale, 2018). Most importantly, the "complete cure" espoused by some accounts is not rooted in any scientific, evidence-based literature. The scientific literature, on the other hand, recognizes that there is no universal treatment for PCOS and that in this lifelong syndrome, the treatment must be symptom-oriented, "dynamic and adaptive to changing circumstances", focusing specifically on one's personal needs and expectations (Teede, Deeks, & Moran, 2010; Escobar-Morreale, 2018).
What is rather baffling is that some of these accounts fully acknowledged this in the caption section in their posts and themselves remark how heterogeneous and individualized PCOS symptoms are for individuals. Yet, they continue to peddle the claim that PCOS reversal is possible. They continue to focus on the false claim that there is a root cause for PCOS that must be the target of all treatment plans, and once this is addressed, all things fall into place. This warrants questioning what exactly do these accounts aim to achieve by building seemingly supportive spaces on these falsehoods? How does contributing to misinformation help those who turn to online spaces for support? What do these accounts achieve by depicting living with PCOS as a relatively linear, straightforward journey when endless personal accounts and narratives highlight the bumpy roads of their PCOS journeys?
Given that there are no mechanisms to verify sources of information on PCOS, how does someone seeking answers for their syndrome sift through the layers of information? Once the said (mis)information is posted on the internet, assessing the reach and impact of the post on those consuming it becomes challenging. The fact that the #reversePCOS hashtag on Instagram has over 1000+ posts bears testimony to how quickly ideas built on misinformation can proliferate on social media. One can genuinely witness the desperation that drives many people to turn to these pages after suffering for years without guidance and support from their healthcare providers. They also place immense faith and trust in getting the support and help through these accounts that they should have received throughout their journey with PCOS. When several PCOS-reversal accounts are run by practising doctors who are registered dietitians and nutritionists, what then makes them perpetuate such false claims?
The Way Forward?
Several questions come to me as I conclude this essay. How does one navigate such contradicting and an overwhelming amount of information when they seek answers related to PCOS? What role can social media platforms play in curbing the spread of misinformation? How can doctors and healthcare professionals take more cognizance of the information gap present in the treatment methods? Can social media and the medical sciences work in tandem to create a more robust support system for those who turn to these places in search of support and guidance? What about those individuals with PCOS who cannot access social media platforms of Instagram and Facebook to seek help from online spaces?
Most posts assume that people who have access to the internet and social media platforms are English speakers (given that posts using other languages are non-existent) and have access and can afford the prescribed diet and exercise options. This (mis)information across the social media platforms circulates only within the platforms, leaving those without any access bereft of the support and guidance to navigate their syndrome. Suggestions to address and tackle health-related misinformation on social media include critical studies on social media platforms to understand better how misinformation spreads and unpacking the psychological factors behind accepting and believing misinformation (Chou, Gaysynsky, & Cappella, 2020). Further, studying the consequences of exposure to misinformation is necessary to understand the impacts on health-related attitudes, behaviours and knowledge. Others note the importance of increasing the "availability of interventions and avenues of support" and better support from healthcare providers to help people make informed choices about managing their lives with PCOS (Weiss & Bulmer, 2011).
The above suggestions point to a glaring need to dissect how social media in India perpetuate misinformation on chronic conditions like PCOS and the long-term impacts of these claims on those consuming the said information. It is also crucial to unpack the underlying motives behind PCOS-reversal programs and why people seek help from such programs. After all, all testimonies and personal narratives establish one truth rather concretely – people living with PCOS are doing their best and their fullest to navigate a remarkably complex, multi-faceted syndrome. They deserve the highest quality of care and support they can receive.
References
Avery, J., & Braunack-Mayer, A. (2007). The information needs of women diagnosed with Polycystic Ovarian Syndrome – implications for treatment and health outcomes. BMC Women's Health, 7(9). doi:10.1186/1472-6874-7-9
Badrinathan, S. (2021, June 07). Opinion: India is facing an epidemic of misinformation alongside Covid-19. Retrieved from The Washington Post: https://www.washingtonpost.com/opinions/2021/06/07/india-misinformation-covid 19-pandemic/
Bode, L., & Vraga, E. (2017). See something, say something: Correction of global health misinformation on social media. Health Communication, 33(9), 1131-1140. doi:http://dx.doi.org/10.1080/10410236.2017.1331312
Chou, W.-Y. S., Gaysynsky, A., & Cappella, J. (2020). Where we go from here: Health misinformation on social media. American journal of public health, 110(53), S273– S275. doi:https://doi.org/10.2105/AJPH.2020.305905
Chou, W.-Y. S., Oh, A., & Klein, W. M. (2018, December 18). Addressing health-related misinformation on social media. JAMA, 320(23), 2417-2418. doi:doi:10.1001/jama.2018.16865
Dry fasting: Health benefits, how to do it and why it's better than ‘wet’ fasting. (2020, June 09). Retrieved from Hindustan Times: https://www.hindustantimes.com/fitness/dry fasting-health-benefits-how-to-do-it-and-why-its-better-than-wet-fasting/story IY2kYMZ8UFLyz8tor9FVPP.html
Escobar-Morreale, H. (2018). Polycystic ovary syndrome: Definition, aetiology, diagnosis and treatment. Nature Reviews Endocrinology, 14, 270-284. doi:https://doi.org/10.1038/nrendo.2018.24
Guidry, J., Jin, Y., Orr, C., Messner, M., & Megnack, S. (2017). Ebola on Instagram and Twitter: How health organizations address the health crisis in their social media engagement. Public Relations Review, 43(3), 477-486. doi:https://doi.org/10.1016/j.pubrev.2017.04.009
Khadilkar, S. (2019). Can Polycystic Ovarian Syndrome be cured? Unfolding the concept of secondary Polycystic Ovarian Syndrome! The Journal of Obstetrics and Gynecology of India, 69, 297-302. doi:https://doi.org/10.1007/s13224-019-01253-z
Massey, P. M., K. M., Hauer, M. K., Selvan, P., Koku, E., & Leader, A. E. (2020). Dimensions of misinformation about the HPV vaccine on Instagram: Content and network analysis of social media characteristics. Journal of Medical Internet Research, 22(12), e21451. doi:10.2196/21451
Miller, D. P., Spangler, J. G., Vitolins, M. Z., Davis, S. W., H, I. E., M. G., & Crandall, S. J. (2013). Are medical students aware of their anti-obesity bias? Academic Medicine: Journal of the Association of American Medical Colleges, 88(7), 978-982. doi:https://doi.org/10.1097/ACM.0b013e318294f817
Pill Shaming in PCOS. (2021, January 09). Retrieved from PCOS Vitality: https://www.pcosvitality.com/post/pill-shaming-in-pcos
Puhl, R. M., & Heuer, C. A. (2010). Obesity stigma: Important considerations for public health. American Journal of Public Health, 100(6), 1019-1028. doi:https://doi.org/10.2105/AJPH.2009.159491
Sanchez, N., & Jones, H. (2016). "Less than a wife": A study of Polycystic Ovary Syndrome content in teen and women's digital magazines. Journal of Medical Internet Research, 18(6), e89. doi:https://doi.org/10.2196/jmir.5417
Snyder, B. S. (2006). The lived experience of women diagnosed with Polycystic Ovary Syndrome. Journal of obstetric, gynecologic, and neonatal nursing: JOGNN, 35(3), 385-392. doi:https://doi.org/10.1111/j.1552-6909.2006.00047.x
Teede, H., Deeks, A., & Moran, L. (2010). Polycystic ovary syndrome: A complex condition with psychological, reproductive and metabolic manifestations that impacts on health across the lifespan. BMC Medicine, 8. doi:https://doi.org/10.1186/1741-7015-8-41
Tomlinson, J., Pinkney, J., Adams, L., Stenhouse, E., Bendall, A., Corrigan, O., & Letherby, G. (2017). The diagnosis and lived experience of polycystic ovary syndrome: A qualitative study. Journal of Advanced Nursing, 73(10), 2318–2326. doi:10.1111/jan.1
Walsh-Buhi, E. R. (2020). Social media and cancer misinformation: Additional platforms to explore. American Journal of Public Health, S292-S293. doi:https://doi.org/10.2105/AJPH.2020.305949
Wang, Y., McKee, M., Torbica, A., & Stuckler, D. (2019). Systematic literature review on the spread of health-related misinformation on social media. Social Science & Medicine, 240. doi:https://doi.org/10.1016/j.socscimed.2019.112552.
Weiss, T., & Bulmer, S. M. (2011). Young women’s experiences living with Polycystic Ovary Syndrome. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 40, 709-718. doi:10.1111/j.1552-6909.2011.01299.x
Williams, S., Sheffield, D., & Knibb, R. (2015). 'Everything's from the inside out with PCOS': Exploring women's experiences of living with polycystic ovary syndrome and comorbidities through Skype™ interviews. Health Psychology Open, 2(2), 1-10. doi:https://doi.org/10.1177/2055102915603051