Online Health Misinformation, Apathetic Doctors and Anecdotal Evidence: One Pakistani Woman with PCOs Turns to Create Her Own Ozempic

This story was originally published in GenderIT.org.

I read the following sentence in Julian Barnes’ The Sense of an Ending: ‘What you end up remembering isn't always the same as what you have witnessed.’ 

This is how I would choose to describe my journey with Polycystic Ovary Syndrome (PCOs) and the very few visits to the doctor through it. Growing up, I barely ever had my period on time. Nothing much was ever done about it, or none that I remember, except one trip to an elderly male doctor who told me that my follicles weren’t maturing enough and recommended seeing a female doctor. He never told me what ‘follicles not maturing’ meant. Another time, a lady doctor gave me a pill to induce my period without even remotely suggesting how to deal with the condition in the long term. This visit, however, is just a fleeting image in my mind. My mother too, through the years, has sworn by remedies like gurr (jaggery) boiled in milk to induce period, which I have done but can’t be sure if any of it actually ever worked.

Over the years, women around me have shared similar stories in abundance; of doctors gaslighting them, of being asked to lose weight over and over, of being given birth control pills, and so on – many of which have been my experiences too and part of the reason why I don’t go to the doctors anymore. These stories are mine as much as other women’s. I remember them, as a collective. 

There are, however, women whose lives have been irreversibly affected by the lack of accurate information online, apathetic doctors, the oversimplification of research through Instagram reels, influencer culture, and anecdotal advice. All of this got to Alia* (she/her), now a 26-year-old woman from Karachi but then barely 18, who struggled to tune in with her body for the longest time.

An elderly male doctor told me that my follicles weren’t maturing enough and recommended seeing a female doctor. He never told me what ‘follicles not maturing’ meant. Another time, a lady doctor gave me a pill to induce my period without even remotely suggesting how to deal with the condition in the long term.

Alia, my lead source for this story, was diagnosed with PCOs in 2017. Her journey with online health misinformation and weight loss, however, pre-dates her diagnosis. Alia was 13 years old when she started thinking about losing weight. She says there hasn’t been a time in her teenage years or adulthood when she had not wanted to lose weight. Growing up, Alia saw her mother adopt many kinds of diets, particularly the General Motors (GM) diet, for fat loss. The GM diet is a strict, 7-day eating pattern (or a crash diet) that’s said to promote weight loss but is dangerously low in many nutrients and unsupported by research; the diet plan has been debunked many times. Besides anecdotal evidence, there is nothing to actually back up the claims of the diet which insists on including “negative-calorie foods” that burn more calories than they provide, but there is no evidence to support this. If you do a quick search for #GMDiet on Instagram, there are over 45 thousand posts that mention it, just the hashtag alone. 

In addition, this diet is consistently promoted by celebrities in Pakistan which has likely impacted many young girls and women alike. Similarly, Indian fitness and wellness content creators have also advocated for the GM diet plan, adding to a non-exhaustive list of people giving misinformed ideas to their audiences.

Alia says that her “mother was never obese or even plus-size, but midsize at best,” but still engaged in fad diets. She would advise Alia to eat well, but her mother’s diets naturally left an imprint on her. She started looking up similar diets when she got her first phone at the age of 15.

Alia says her Instagram Explore still shows her reels on fat loss or weight loss on PCOs even after she has stopped consuming such content. She attributes this to “11 years of algorithm training”.

Algorithmic amplification of misinformation

Instagram emphasises that if someone posts something that third-party fact-checkers label as misinformation, they don’t take it down, but apply a label and demote the post in Feed and Stories. While, in theory, this makes sense, with influencers posting anecdotal content, especially of their experience with managing PCOs, there is no clear-cut way for third-party fact-checkers, or anyone else for that matter to flag that as misinformation. They are just someone’s experiences, and how do you categorise that? Most of these reels have thousands of likes, comments, and shares, and it is because of their popularity and engagement that they gain more and more traction, and are then prioritised by the algorithm.

Alia says her Instagram Explore still shows her reels on fat loss or weight loss on PCOs even after she has stopped consuming such content. She attributes this to “11 years of algorithm training".

According to the World Health Organization, approximately 116 million women around the world are impacted by PCOs, while 70% of the cases remain undiagnosed. With so many women remaining undiagnosed but trying to make sense of their condition and pain levels by turning to the internet and anecdotal content, such high engagement on the said reels is hardly surprising. 

Alia echoes this sentiment. In 2017, she bled for 30 days non-stop before she let her mother know. She was taken to the doctor who hardly focused on the blood loss and her present condition, and talked mostly of Alia’s fertility issues in the future if it wasn’t fixed. Even then Alia knew that she should have been prescribed some sort of iron pills to make up for the blood loss but the doctor only cared about how fertile or infertile she was and would be. 

Then in 2018, during one of her scheduled gynaecologist appointments, she was prescribed 250 mg Metformin – a medication to treat type 2 diabetes, twice a day (500mg total) and a birth control pill, to be taken daily. It’s important to note that not everyone with PCOs needs metformin, and only after appropriate tests are done that it can be determined whether a person in question requires it. It is, however, a regular practice in Pakistan to prescribe it for PCOs. The logic is this; when someone has PCOs, their insulin levels are likely dysregulated hence the weight gain. Metformin helps regulate insulin levels and eventually aids weight loss. With so much emphasis placed on weight loss in Pakistan, given the societal norms and doctors’ inability to holistically deal with PCOs in women, this medication is the go-to along with the birth control pill Alia was prescribed. She took normal doses for a year until she met a friend who was prescribed the same medication as well and was very happy with the results. In an act of misunderstood self-medication, Alia upped her dosage from 500 mg to 1500 mg, and in her own words, “I did it because she and I had quite a lot of similarities in our life. Same routines, same personalities, same body [image] issues, same self-hatred of how we look. She seemed very happy with her [Metformin] weight loss & told me she likes herself now. So I thought we are almost the same person - if it worked for her, it would definitely work for me. And it did for long enough to keep believing it.” 

Later in 2021, she started using weight loss and appetite suppressants that an ad on Instagram and glowing online reviews led her to buy, along with a 1500 mg dosage of Metformin. Alia says she was creating her “own Ozempic” which resulted in her going on one meal a day. 

Alia emphasised that I must not take her as a stupid person, and I don’t, because I know the relentless focus on weight loss in Pakistani culture, and I am more than aware of what it does to us. I am 30 years old, I have lived a full and eventful life, and now I am at a point where I think I have developed a healthy relationship with food. This does not mean I am not asked to lose weight every time I am in a gathering of uncles and aunts. Just recently at a wedding, I was told by five extended family members that I had gained too much weight and that I did not look good. I was likened to a hippopotamus and many other animals, all in jest. For a few days, I ate barely two meals a day. Through it all, I was in denial that I was doing anything of the sort until I physically felt weak and was snapped back to reality. The Pakistani society is very adept at forcing you into this toxic cycle of hating yourself and your body, so no, I do not blame Alia at all.

Alia started using weight loss and appetite suppressants that an ad on Instagram and glowing online reviews led her to buy, along with a 1500 mg dosage of Metformin. Alia says she was creating her “own Ozempic” which resulted in her going on one meal a day.

When online spaces, too, focus so much on body types and weight loss, you are bound to internalise that you are the problem. Alia says, as part of her internet habits, she maintains a Daraz (Pakistan’s equivalent of Amazon) cart. The platform has picked up on her past internet history and shows her recommendations for things such as a stomach flattener. This falls under E-commerce personalization techniques and with the country lacking a comprehensive data protection law and Pakistanis not being very data-aware, we don’t have much control over how this data is used and where it’s sold.

Getting on this weight loss journey naturally affected Alia’s relationship with food. Finally, by the end of 2022, she realised that she had developed an eating disorder. By this time, Alia says, “I had started hanging out with a new group of friends who are my current group as well. I noticed that none of them talk about weight. It felt oddly relieving and my first time being in a space without being notified of my weight.”

Alia is currently in recovery and while she has seen a therapist for her eating disorder, she doesn’t think they were able to help her at all. Most of what she is doing is her own efforts now and the support of her new friends. 

To some extent, Alia’s story is mine, and to some, every other woman’s in Pakistan. While we could argue that things –in this case, reels or weight-loss supplements or anecdotal content – are not inherently good or bad and it’s their usage that dictates them so, we cannot deny that we live in an age of information disorder. There is more information available than can be fact-checked manually, and while this has been a point of conversation in media spaces for a while now, it is also important to contextualise this information overload in terms of societal fabrics that exist around the world, such as that of Pakistan.

When online spaces, too, focus so much on body types and weight loss, you are bound to internalise that you are the problem.

The country has had a complicated history with health misinformation. Consider Shakeel Afridi; the Pakistani physician who allegedly helped the CIA run a fake hepatitis vaccine program in Abbottabad, Khyber Pakhtunkhwa, Pakistan, to confirm Osama bin Laden's presence by collecting DNA samples. This has, over the years, led to militants and Islamic clerics propagating the belief that vaccinators are foreign spies. Hence, Polio still exists, misinformation stays, with the overall attitude of the country is now such that citizens struggle to fully trust health practitioners and the government’s directives. Add to this list entrenched patriarchy, archaic beauty standards, and gynaecologists muddling their medical opinion with societal norms, especially when it comes to treating PCOs and trusting women’s pain. People then naturally turn to online platforms, because the internet at least gives you the illusion that you have control over what you choose to read and consume, to get medical information that brings with it an even bigger plethora of problems. Social media platforms, in particular, while frequently providing safe spaces for people to express themselves, also tend to do the opposite. By providing more opportunities for the users to understand the data and algorithm practices of social media or e-commerce platforms, maybe we could find a safer way forward. The responsibility befalls the platforms, more than anyone or anything else.

*Name has been changed for anonymity.