TikTok Shouldn’t Be TikDoc: Combating Self-Diagnosis Online

As government scrutiny and even some statewide TikTok bans trickle in, concerns about the app’s impact on youth mental health are often repeated. Among the concerned are the bereft parents of a teen who killed himself last year, reportedly after seeing self-harm content on TikTok.

While states and some organizations decide whether TikTok poses enough danger to warrant a ban, I want to sound the alarm about an online mental health risk that’s even more chronic and not limited to TikTok: an epidemic of self-diagnosis, fueled by social media, that’s leading to improper treatment, missed treatment and the trivialization of serious mental health conditions.

If there’s a silver lining to the COVID-era mental health crisis, it’s that people seem more willing than ever to talk about mental health struggles with friends, with colleagues and sometimes to the whole world online. Even better, they’re willing to get help. The percentage of adults aged 18 to 44 seeking mental health treatment rose significantly during the first years of the pandemic, according to data from the Centers for Disease Control and Prevention.

If you spend any time online, you can’t miss the new candor about mental health conditions. TikTok and Instagram influencers share their struggles and diagnoses on camera. In recent years, executives on LinkedIn have shared photos of antidepressant medication with the hashtag #PostYourPill. Actor-singer-beauty mogul Selena Gomez launched an entire content platform focused on “mental fitness.” Conditions such as anxiety disorder, ADHD and OCD are not only being de-stigmatized, in some contexts, they’re trending.

Open discussion of mental health is undoubtedly a good thing when it eradicates shame, results in people feeling less alone or motivates somebody to seek needed professional care. But in this new era of openness, we risk oversimplification and even trivialization of complex medical conditions, increasing the risk of overtreatment for some, undertreatment for others and overall mistreatment of people exposed to a cacophony of mental health conversations online but lacking access to balanced, authoritative information and quality clinical care.

Let’s say a young woman perusing TikTok sees an influencer sharing that he has attention-deficit/hyperactivity disorder, then – thanks to social media algorithms – over the next week, more ADHD-related content appears in the young woman’s feed. Some of the symptoms feel relatable, so she does a YouTube search on ADHD. After watching a few of the thousands of videos on the topic, she decides that she herself has ADHD.

This is not unusual. Some therapists at Talkspace, where I serve as the chief medical officer, report they have clients coming to sessions with more complex or specific self-diagnoses. Whereas a client might have said, “I think I’m depressed,” a few years ago, now more are saying, “I think I have borderline personality disorder” or “I think I’m on the autism spectrum.”

Such self-diagnosis can be dangerous. When a social media user becomes convinced that they have a mental health disorder, it can lead them to seek inappropriate treatments. They may announce their self-diagnosis to a primary care provider who doesn’t have sufficient mental health expertise to appropriately evaluate the presenting symptoms. Or the patient may wind up using a telehealth provider to get a prescription medication that’s not helpful or is dangerous. In the case of the hypothetical young woman above, she’d likely be seeing ads for ADHD-focused telehealth prescribers within days, if not minutes, of initially engaging with ADHD influencers.

Diagnosing a mental health disorder isn’t as simple as checking off a list of symptoms. Many healthy people experience symptoms of a mental health condition, but the true measure of whether those symptoms merit a diagnosis and treatment is whether they impair the individual’s ability to function. That determination requires working with a licensed mental health professional to evaluate the frequency, intensity, severity and specificity of those symptoms, and understand them within the broader context of life events, stressors and family history.

A “reel” diagnosis needs a real-life one

To address the “TikTok effect” and stop the dangers of self-diagnosis, mental health professionals must meet people where they are: online and actively searching for answers, inadvertently creating a curated feed.

Social media companies and other platforms with user-generated content have a responsibility to create guardrails that ensure clinically-vetted and accurate information is within reach of anybody seeking content about mental health conditions.

For example, if you enter the search terms “depression” or “suicide” into Instagram, you’re offered a list of mental health resources. However, searches related to specific conditions like OCD, ADHD and Tourette’s link directly to memes and user-generated videos of (to put it generously) mixed quality. Since the start of the pandemic, we’ve seen how quickly social platforms could flag content related to COVID or vaccines and direct people to CDC information on those topics. Therefore, it does not seem unreasonable to expect the same for content around sensitive mental health topics.

When somebody hears about a condition online and believes, correctly or not, that it affects them, they are more likely to feel worried, triggered or even distraught. Thankfully, that same technology can quickly link them with mental health care without stigma or stress and allow them to find real answers under a professional’s guidance – if they land at a responsible, high-quality source of tele-mental health. We recently revamped our own site to provide clinical insights from a dedicated team of licensed, practicing clinicians to add dimension to the spectrum between experiencing symptoms and having a condition.

Unfortunately, some telehealth services are all too quick to prescribe medications, including controlled substances, based solely on answers to online questions. At Talkspace, I am personally committed to our policy of not prescribing controlled substances online. When our board-certified psychiatrists and psychiatric nurse practitioners do prescribe medication, it is only after live video consultations and a comprehensive psychiatric evaluation.

Because mental health conditions are so much more complex than what can be captured by a checklist of symptoms, I’m wary of any company that prescribes without live consultations. When digital health companies feed into the misconception that everyone with depressive symptoms is clinically depressed or anyone who’s easily distracted has ADHD, they risk hurting more people than they help.

At a time when it’s all too easy for both the worried well and people with serious mental health conditions to self-diagnose online, it’s imperative that both social media and digital health companies do everything possible to direct vulnerable audiences to trustworthy information and comprehensive, ethical care.

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