Capitalize on patients' TikTok-driven health questions to nurture improved communication, deepen trust, and refine treatment strategies
TikTok is a short-form video app that has become increasingly popular in recent years, ad boasts more than 1 billion users world wide. The app's algorithm is designed to show users content that they are most likely to be interested in, based on their past interactions with the app. This means that each user's For You page (FYP) is unique to them, and two people using the app at the same time may see completely different videos.
The TikTok algorithm takes into account a variety of factors when determining what content to show each user, including:
The time spent watching a video
Whether or not the video was liked
Facial expressions while watching a video
Age
Internet and search history
Audio
This means that the TikTok algorithm is constantly learning and adapting to each user's individual interests. As a result, users are more likely to see content that they enjoy, which can lead to increased engagement with the app.
The TikTok algorithm has also been criticized for its potential to create echo chambers and filter bubbles. Echo chambers occur when users are only exposed to content that reinforces their existing beliefs, while filter bubbles occur when users are only exposed to content that is similar to what they have already seen. This can lead to users becoming less informed and more polarized in their views.
However, overall, the result is that some people see some combination of other users dancing, jokes and pranks, parenting advice, pop culture references, political opinions, and, for many, signs and symptoms of medical conditions.
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Some of the most commonly discussed conditions include ADHD, Autism, Hyper-mobility Ehlers Danlos Syndrome (hEDS or EDS), Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), Gastroparesis, Tic disorders and Tourette Syndrome (TS), Obsessive Compulsive Disorders (OCD), Dissociative Identity Disorder (DID), PTSD and complex Post Traumatic Disorder (cPTSD), Burn Out, Anxiety, Depression, Eating Disorders (ED) or disordered eating behaviors, Orthorexia, Migraines, Post Acute Covid-19 Syndrome (PACS, PASC, or Long Covid), Hypothyroidism, PCOS, and so much more. If someone has health anxiety, it's easy to see how this can quickly become harmful.
Healthcare providers have been largely dissatisfied with their patients seeing this content. Many have noted how the subsequent self-diagnoses can be harmful, and how the downsides of these TikToks are greater than the positives. There are Reddit communities, such as "illness fakers" dedicated to calling out fraudulent, or supposed fraudulent, users who are pilling up diagnoses on their own. Dr. Adelyao, a practicing psychologist for Banner health, makes this argument about their harm:
As we’ve seen during the pandemic, anyone can pose as whoever they want to on the internet. A PhD posing as a medical doctor. A self-proclaimed health guru posing as a nutritionist. Whatever the case or situation, [people] are quick to believe what they see and hear on the internet without doing much questioning or further research. It creates this horoscope type of effect. People see enough of these videos, they start to relate to any number of the potential symptoms and even begin to present with some of the same symptoms,” Dr. Adelayo said. “The thing is psychological illnesses don’t happen that way. Just because you pee a lot, doesn’t mean you have diabetes. You don’t have diabetes because you say you have diabetes.”
On the other hand, many people have noted how amazing it is to connect with a large community of other people who have the same diagnosis and lifestyle. I have seen and experienced firsthand how validating it is, and how comforting it can be to know that you are not alone in your experience with a condition. It can also allow people to see how other people live, and expose them to other conditions they would not normally consider.
One user and disability activist, Britt, 21, stated it in this article by Yahoo:
"[TikTok] is definitely one of the easiest ways for people to see what it actually looks like to live as somebody with a disability.”
TikTok can be an incredible place to amplify disability voices and issues, as well as foster community. And for some, the app can serve to highlight how different each individual experience of a condition can be. For example, Autism Spectrum Disorder (ASD) is a highly individualized condition and the video application can serve to highlight and educate others about how that condition can feel.
No matter your personal thoughts on TikTok, there's one fact we can't ignore - if you're a healthcare professional and your patients are using it, then it's essential to be willing to discuss what they're seeing there. In my own practice, I've found it very helpful to initiate conversations with patients, both young and old, about what they're encountering online.
A powerful question that doctors could, and I'd argue should, ask their patients concerning TikTok is this:
"Have you come across any medical conditions on TikTok or the internet that you're curious about or would like to discuss?"
This question can break down walls, allowing patients to feel that they can open up to their healthcare providers without fear of judgment, offering them genuine help for their symptoms or addressing worries that might have been nagging at them.
As stated earlier, TikTok formulates their algorithm by deciphering what is interesting to that user. If your patient is getting ADHD TikToks or TikToks telling them they have POTS or hypothyroid or PCOS, it is for a reason and shouldn't be ignored.
As I mentioned before, TikTok tailors its content to each user's interests. If your patient frequently sees TikToks about conditions like ADHD, POTS, hypothyroidism, or PCOS, it's not just a random occurrence - it indicates they're finding something engaging or relatable about these videos. The content could resonate due to symptoms they're experiencing, such as distractibility, fatigue, brain fog, dissociation, or dysmenorrhea (painful periods).
Remember, these are real symptoms for your patients. If we as healthcare providers don't explicitly show our willingness to help, patients might lean into potential misinformation they find online. It's our role to guide them towards accurate, reliable information and help them understand their health better.
Final thoughts
The act of discussing a patient's social media feed can prove beneficial, both for the patient and the healthcare provider. It provides an opportunity to uncover symptoms that warrant attention or to consider potential diagnoses that merit serious exploration. In an era where information is rapidly and widely available, it's likely that many conditions are underdiagnosed, particularly when we consider the unfortunate history of medical sexism and racism that still pervades our healthcare system.
As a medical community, we shouldn't be startled by the increasing number of diagnoses. This does not necessarily suggest an unprecedented surge in these conditions or that these diagnoses aren't genuine. Rather, it indicates that we are finally recognizing these conditions for what they are, enabling individuals to receive the necessary help they've always needed.
The rise in diagnoses is not a sign of an epidemic, but a step towards better, more comprehensive healthcare.
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