How Do I Know If The Information About Mental Health On Social Media Is Accurate?

There’s Just Way Too Much Information!

Social has certainly changed the way information is generated, dispersed, and consumed. But why have many people turned to social media for medical and mental health advice? Many people have reported that they don’t feel doctors took enough time with them or a significant enough history and don’t trust doctors or Big Pharma. Tik Tok mental health information videos are reportedly less intimidating than going to a therapist, while some videos normalized getting help and made the process feel less intimidating and mysterious. Adolescents report higher therapeutic alliance with professionals competent in understanding and discussing social media. Some people feel more comfortable asking questions anonymously on doctors Tik ToK videos as opposed to in person in a doctor’s office, also don’t have to wait months for information. Many reportedly feel as though their symptoms were overlooked or their struggled were minimized by a mental health professional (“medical gaslighting”) or invalidated by family. Many clinicians and laypeople alike have criticized the DSM-5 way of diagnosing as “deficit-based” and talks about “suffering” and “abnormalities.” People tend to appreciate feeling validated and destigmatized on social media, especially for more “taboo” topics of suicide, psychiatric hospitalization, autism presentations in minority populations, and gender dysphoria etc. The psychological benefit may be higher for marginalized communities who can feel validated, receive information they wouldn’t have access to, engage with other geographical areas and populations. Many enjoying storytelling and personal narratives regarding mental health on social media, People enjoy the “lived experience” of people living with disorders on social media as young adults value relatability, genuineness, and vulnerability. Tik Tok has reportedly been helpful to incorporate humor when sharing experiences of psychological distress, which facilitates coping and social connection. Social Media has been validating for many autistic people. Forums (Reddit, Quora, WrongPlanet) reportedly tend to be more positive (reframing deficits as differences, giving ppl a voice) and factual. Digital platforms also enable autistic people to generate their own counternarratives to common misconceptions and allowing them to “unmask”, Communities like #AuDHD #actuallyautistic, and #autistok.

Now, of course there are some downsides and potential dangerous of putting mental health information on social media- what might those be? In fact, in December of 2020 WHO declared an “infodemic” of health misinformation, In 2024 NYCDOH labeled SM “an environmental toxin” and cautioned about its effects on youths mental health. Individuals with low health literacy (understanding complex health information and research) are more likely to delay care, refuse care, have increased hospitalizations, poorer health status, and higher mortality rates. Social media often promotes black and white/dichotomous thinking as opposed to critical thinking. and often triggers emotional reactivity with its content. People of color and/or low SES are more targeted and negatively affected by misinformation, which can deepen disparities. On the one hand, people diagnosed with the disorders they speak about should be considered experts, on the other hand they may not be researchers/professionals and their experiences may be unique. Misinformation regarding mental illness is dangerous and can result in misdiagnosis, mistreatment, and other forms of psychological of physical harm. One study found that of the Tik Tok videos with #mentalhealth (17 billion views), almost half of these videos expressed symptoms of mental distress or “trauma dumping”, which could affect others’ mental health. Many diagnoses have been promoted that either have not been confirmed by any medical professionals or are inappropriate for the symptoms proposed (e.g., leaky gut syndrome, electromagnetic hypersensitivity, leaky brain syndrome). A consequence of misinformation can be mistrust in empirically support interventions, which could lead users to try potentially ineffective of even harmful treatments treatments are then popularized as well (e.g., chelation therapy, cranial-sacral therapy, hyperbaric oxygen chambers). Many parents are concerned about exploring psychotropic medications so they are easily swayed by the proposition of homeopathic/alternative treatments, some of which can cause harm. Additionally, some supplements can causes significant bodily harm if taken incorrectly as a result of misinformation. Many common myths about autism promoted on social media are: autism can be cured, people with autism lack emotion/empathy, autism is from vaccines/poor parenting/tylenol/5G etc., autism results in low iq or difficulty learning, autistic people don’t have a sense of humor. Some general mental health myths are promoted including misunderstanding some clinical terms like trigger, trauma, flashback, gaslighting, antisocial, narcissistic etc. and normalizing cutting, suicide attempts, school shootings, and other types of extreme behaviors.

So, Dr. F, how do you know there is all this misinformation out there? It is really that bad? On study revealed that young adults (13-29) viewed content that was less accurate as it was more favorable, and more accurate as less favorable. Per a study conduced by the WHO, 8 of 9 kids were exposed to harmful healthcare misinformation within 35 minutes of signing onto Tik Tok, including things like DIY abortion videos. Per a recent study, out of a sample of 1000 Tik Tok videos with the hashtag mental health, most of which were personal stories, opinions, and perspectives, 33% were found to be misleading and those tended to have the most engagement. Additionally, 94% of videos on Tik Tok do not refer to any course for their claims and only 20% shared their credentials. One study found that out of 100 top-viewed Tik Tok videos, about ADHD 51% of videos were misleading and/or provided misinformation or would trigger health anxiety. 55% of claims align with empirically support ADHD treatment, only 21% as useful when evaluated by psychiatrists. Moreover, 73% of informational autism videos on Tik Tok had inaccurate or overgeneralized information, 41% of ASD videos inaccurate or misleading (3-question test will tell you in your autistic) and 32% overgeneralized (ppl with autism don’t enjoy socializing, other personal experience not specific to ASD).

Misinformation and disinformation are introduced online by many different sources: vested interests, works of fiction, news media, and “gossip.” Because of many social media algorithms, especially on Tik Tok, users can become easily stuck in an exponential hole of misinformation. TikTok is not designed to be conducive to psychoeducation and make it challenging to prioritize nuance, high risk of confirmation bias (find information to confirm what you already believe or want to believe). When misinformation goes viral, it tends to be the same person or small group who is sharing the information on multiple platforms. Some “articles” are purely written by AI and then popularized by celebrities or influencers. A large portion of misinformation is put forth by “bots” and then retweeted or shared by different kinds of accounts. At this time, there are minimal regulatory bodies over social media and it is easy for anyone to label themself as a life coach, motivational coach, counselor, certified in…). Often times a treatment or clinics appeal more because of level of “influencing” versus scientific or anecdotal evidence of credibility. Computers/AI can now predict people’s personalities, which can be used to manipulate or influence them in terms of SM algorithms or what information is displayed in a Google search. Moreover, there are several fake news sites that promote fake articles about food/supplements/alternative medicine (e.g., elderberries can prevent the flu better than the flu vaccine). There has been concern of those just putting out controversial or misunderstood information in an effort to gain followers or for “clout”, as about half of mental health related videos stood to gain financially from their content (often by selling products). Some people worry that doctors being influencers can be a potential conflict of interest depending on their motivations. Many reviews/testimonials are fake or paid and many websites reportedly fail to disclose sponsorships and other collaborations or funding. The objective of certain tik tok videos is social contagion or to go viral/challenges/trans, so less surprising when the same thing happens with mental health or identity. People on social media often cite studies from dubious or fake journals with fake or low quality studies.

Why does it happen so easily? Well, many reasons. Per a recent study, people like buzzwords and misinformation spreads extremely fast. More easily accessible websites and those with layman terms or explanation have the most misinformation. Many people search health/mental health information on Google and other search engines to inform what treatment they choose or which professional they visit. Per the research, viewers tended to be less interested in videos from mental health professionals because they were “kind of boring, like just people saying facts and stuff.” Many will say “everyone is a little ADHD or ASD”, leading to confusion about what a diagnosis means. One study explained that perceived trustworthiness/credibility is more important than expertise when it comes to the persuasion of misinformation. The things is: anecdotes often feel like data on social media. Per the research, the more time viewers spent online and viewing videos, the higher they tended to trust the reliability of the information, including information relating to self-diagnosis. Echo chamber effect (if you hear it enough times) and Illusory truth effect (repeated claims are more likely to be judge as true, even without data) increase likelihood of believing misinformation. Many posts on social media are intended to target people’s insecurities and change their behavior accordingly. People with illness anxiety disorder (formerly hypochondriasis) tend to be highly vulnerable to new labels and new treatments, fear works easily as a motivator.

Let’s discuss social media, self-diagnosis, and misdiagnosis. Some may fake mental illness or “disorders” in an attempt to gain attention, followers, “fit in”, or be interesting, it is now cool and trendy to be quirky and neurodivergent (5 billion views for #neurodivergent). Some adolescents struggle w identity and a strong desire to be different, and some people feel like they need a similar diagnosis to connect with others about similar experiences. Many people on Tik Tok have been accused of “fakeclaiming.” As Nicholas Kardaras states in his book, Digital Madness, people tend to lose uniqueness and more vulnerable to engaging in GroupThink when on social media- leading to what some have called “munchausen by internet” or “digital factitious disorder.” One study from 2023 discussed mass psychogenic illness as a form of conversion disorder as a certain mental illness or symptom/behavior can spread rapidly across a social group or community with no organic etiology. In another study, some Tik Tok viewers expressed concerns about romanticizing certain disorders or experiences with mental health as this could result in overgeneralization and youth pathologizing “normal” human experiences and resulting in inaccurate self-diagnosis. There was a significant increase 2020 and on in kids/young adults who presented at clinics/ERs seeking diagnoses or with new behavioral symptoms. Some feel they were “diagnosed by Tik Tok” based upon the algorithm (though these have questionable predictive power and can be biased) and what videos they were presented with on their For You Page (FYP) on Tik Tok. There are several “tests” promoted online to “diagnose” often just intended to consider further evaluation not to actually diagnose (many not valid or reliable). Online IQ and personality tests are readily available and misleading, encouraging self-diagnosis, similar to horoscopes (This is called the Barnum Effect). There was a significant lack of agreement between self-rated and clinician-assessed trait measures, highlighting the need for separate interpretations.

In terms of specific disorders, the most common disorders that seem to be “caught” on social media include ASD, ADHD, Tourettes, gender dysphoria, DID (formerly MPD), and eating disorders. #autism and #ADHD fell within tik tok most-viewed health-related hashtags. On Tik Tok, If you can blink in time to a song, have trouble focusing in school, forget things sometimes, trouble getting motivated, or have been told you’re lazy you might have ADHD. One study found that self-reported traits among adults evaluated for ASD were not predictive of receiving a diagnosis and self-reported traits do not always confer the same meaning in individuals with and without a clinical ASD diagnosis.In fact, self-reported autistic traits in the general population, for those without an ASD dx, may be reflective of generalized social avoidance and self-consciousness regarding social skills rather than autism-specific social difficulties. Many were also reposting at one point that “enjoying eating with a tiny spoon linked to autism” (no data supporting). Between 2020 and 2022 there was a sharp increase of adolescent females presenting with new-onset tics or Tourettes. These “Tik Tok Tics” typically occurred later in childhood, were more destructive, more apparent, and higher overlap with others’ tics. #tourette was viewed 5 billion times on Tik Tok alone. The most exaggerated tic/Tourettes videos got the most views and generally had the most inaccurate portrayals. Some videos would include the Tourette label but actually engage in self-injurious behaviors. There was a 71% increase in PANS/PANDAS during the pandemic period, strong relationship between tics and PANDAS. Similar experience for Dissociative Identity Disorder (DID), with some claiming that they “switch personalties” up to 50 times per day. In December of 2021, #DID had 1.3 billion views on TikTok. In general, typically the more extreme or exaggerated symptoms, the more views and engagement.

So, How can we fix it? What are some solutions to this infodemic and “information-bombing” so to speak that we are all subjected to? Jacobs et al (2017) explained that an important component of preventive health practice is the provision and availability of information regarding risks to health and promotional measures for enhancing health status. Balancing the scale between preserving the right to freedom of speech and suppressing the spread of misinformation has been a long-standing issue. In 2023, the “Kids Online Safety Act” was passed with intention to regulate mental health misinformation and advertising to children. In 2024, WHO announced a partnership between health influencers and Tik Tok/Meta to promote science-based information and encourage positive health dialogues to counter misinformation, but this could get complicated because of the profits of misinformation/controversial videos and much is tied up in corporate choices or lack of transparency, conflict of interest. There are some organizations, such as NewsGuard, which have collaborated with the WHO to rate the reliability of news information across the internet and social media, NewsGuard is a browser extension that uses a red-green signal to indicate whether a website adheres to basic standards of credibility and transparency. Tik Tok does have a trust and safety protection team; however, they struggle to keep up with the content, and many users will use code words or emojis as a loophole to keep posting, Safety and fact-checking policies on social media are often ambiguous and hard to regulate, methods of warning users of misinformation on social media have largely been ineffective and are sometimes counterproductive. Some suggest redesigning social media search algorithms so that credible sources of information are elevated to the top, tagging content that is evidenced-based as well as a clear disclaimer about content being for educational purposes and not directive purposes should be communicated. In terms of AI, one recommendation has been to control where AI programs get their information from (e.g., Mayo Clinic, vs a fake news site). Here’s some advice: try not to be influenced about what you feel is right and true, read the research and look for reliability/replication, question “goodness/halo” foods, diets, or supplements, question anything that is overhyped, regulate fake journals and media for misinformation, retractions and errors need to be reported immediately, be aware/informed/skeptical, a critical thinker, stop incentivizing research. Keep in mind, oftentimes the most expensive treatments are expensive and hard to access- be wary of affordable and readily available treatments, though some are of course effective, Beware of anything that promotes a “quick fix.” And if mental health professionals (myself included) want to promote more accurate information on social media, they have to create more engaging and relatable content or by using sponsored ads that would be appealing to a younger population.