About a year into the pandemic, Kianna, a high-school student in Baltimore, on the west coast of the United States, was feeling increasingly isolated. Sitting alone in her bedroom gave her too much time to think, she says, so sometimes she would fixate on her seclusion or start critiquing her appearance.
“I remember just being on TikTok for hours during my day,” says the 17-year-old. “That’s when my self-esteem started declining.”
At the time, in early 2021, her school classes were virtual, and she had begun texting friends instead of talking to them. Her anxiety bred headaches, poor sleep and the odd feeling of living outside her body. Then she started seeing videos on TikTok about depersonalisation disorder, a type of dissociative condition that can make people feel disconnected, as if their body is detached from their thoughts, almost like being in a dream.
It’s almost as though me, as a professional — with a master’s degree, a clinical license and years of experience — is competing with these TikTokers
“I have this,” she recalls thinking to herself. But mental illness wasn’t the type of thing she would normally discuss with her friends or family. She didn’t tell anyone about her revelation. “I was so in my head that something was wrong with me.”
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In recent years, discussions about mental health have proliferated on social media, particularly on TikTok, where the format allows for easily digestible, intimate videos that appear in a never-ending algorithmic feed. And for those researching various disorders, it has become increasingly easy to find bite-sized definitions and self-assessment quizzes online. While this bounty of unfiltered resources can serve to reduce the stigma associated with mental illness, there are downsides.
A number of American mental-health providers say they are seeing an uptick in teenagers and young adults who are diagnosing themselves with mental illnesses – including rare disorders – after learning more about the conditions online. In some cases this information can lead them towards getting the help they need, but it can also result in people incorrectly labelling themselves, avoiding a professional assessment and embracing ineffective or inappropriate treatments.
Annie Barsch, a licensed marriage and family therapist in Elburn, Illinois, a suburb of Chicago, has fielded multiple inquiries from teenagers and adolescents who arrive at her office with a specific diagnosis in mind.
“People go, ‘Well, if I have the symptom, I have to have the disorder’ – but it’s not that kind of relationship,” she says. Some will say, “I’m so OCD,” she adds. But “if you’re organised and you have structure and you like things a certain way and you’re functioning, you don’t have obsessive-compulsive disorder – you’re organised,” Barsch says. “People who have OCD cannot function because of their compulsions.”
Some adolescents will choose to believe TikTok over a therapist, she says, and for several sessions they “keep pushing the same agenda.” And when clients become fixated on a particular diagnosis, providers say they must walk the fine line between offering a reality check and finding a way to support their clients, who are often deeply concerned. “It’s almost as though me, as a professional – with a master’s degree, a clinical licence and years of experience – is competing with these TikTokers,” Barsch says.
TikTok is one of the most popular web domains in the world, particularly among adolescents and young adults, and its algorithms are adept at showing people content that is similar to what they have lingered on in the past. (Instagram and Facebook users also see this type of content via the Reels feature.) The format – looping videos that are often less than a minute long – doesn’t leave much room for nuance. Viewers in search of mental health information may find little more than a bullet list of symptoms.
On TikTok they show ‘Oh, I’m this, and look at how cool I am,’ and then people will look up to those people — and it’s just so skewed and not, like, reality
But part of what makes diagnosis so complicated is that the same disorder can express itself in a child, adolescent and adult very differently – in other words, the same list of symptoms does not apply to every age group.
“It’s incredibly easy to misdiagnose,” says Mitch Prinstein, the chief science officer of the American Psychological Association. “You might have symptoms that look like what an adult’s depression would look like, but as a child or adolescent it very well could mean something completely different.” It can also be hard to be self-aware of certain symptoms, he says, and these really ought to be observed by an objective party.
Therapists must look at the range of experiences a client is having, when they occur and for how long. Are they functioning in their life? How are they sleeping, eating, relating to others? How is their mood and motivation?
A TikTok spokesperson said in a statement: “We strongly encourage individuals to seek professional medical advice if they are in need of support,” adding that the company continues to invest in digital literacy education aimed at helping people evaluate online content.
Sara Anne Hawkins, a licensed marriage and family therapist in Minneapolis, says that three of her young clients recently told her they have misophonia, a condition that can make people feel rage upon hearing other people’s sounds, like chewing or breathing. “They’re self-effacing about it, like, ‘Oh god, I got this off TikTok,’” she says. “They’re, like, ‘This is me, right?’”
As it turned out, only one of her clients ended up struggling with the disorder. Regardless, bringing it up provided an opportunity for all three to further discuss any feelings of anger and irritability. “I think it empowers youth to know it’s not just them making something up, or it’s not all in my head – ‘Look, other people feel this way, too’,” she says. But, Hawkins adds, “a little bit of information can be dangerous.”
Hawkins’ son, Ronan Cosgrove, who has been on TikTok for about four years, says that among some of his peers it has become trendy to identify with a mental-health disorder. For them, he says, it is considered a personality trait rather than something you want to heal. “On TikTok they show, ‘Oh, I’m this, and look at how cool I am,’ and then people will look up to those people – and it’s just so skewed and not, like, reality,” the 16-year-old says. “It’s so easy to get roped in.”
A great concern is that adolescents may be making faulty self-diagnoses and treatment plans in the absence of professional insight
Kids are searching for a community, and are using their current struggle with mental-health symptoms as a way to find like-minded people, sometimes wearing their symptoms as a badge of pride or a shorthand way to explain themselves to others, Prinstein says. And some adolescents may seek mental health information online because the adults in their lives are not open to talking about it. “It’s incredibly disheartening,” he adds.
A study published in March analysed 100 videos on TikTok with the hashtag #mentalhealth that had collectively received more than 1 billion views. It showed that adolescents appear to be turning to TikTok as a source of support, and the advice there is largely driven by users’ conversations.
“A great concern is that adolescents may be making faulty self-diagnoses and treatment plans in the absence of professional insight,” says Corey H Basch, a professor of public health at William Paterson University of New Jersey and the lead author of the study. And teenagers may also come across inaccurate information or accounts that encourage harmful behaviour, like cutting, or trigger those who are struggling, she says.
On the flip side, she adds, finding a positive, supportive community online can be powerful, especially for those who are marginalised or who lack access to mental-health resources.
That was the case for 23-year-old Jorge Alvarez, a young-adult mental-health advocate and content creator in Elmwood Park, New Jersey, who received his first clue that he might have attention deficit hyperactivity disorder on TikTok when he was 20. “It kind of brought me into a world that I would have never otherwise have seen,” he says.
As he listened to people share symptoms, he recognised some as being eerily familiar – because they had actually happened to him. “One was impulsively getting up in a work meeting or in the middle of an assignment to go get ice cream,” he says. “It wasn’t just a food craving. It was like my brain needed this dopamine.”
Your diagnosis is not who you are – it’s a part of what you have
In college, when he was taking pre-medical classes, he struggled in his science courses and suffered from anxiety and depression. When he began to think he might have ADHD, he spoke with three psychiatrists and two therapists before eventually being evaluated for ADHD at his school’s mental-health centre. After a few testing sessions there, he finally received a formal diagnosis.
“Oh, my God, it was so transformative,” Alvarez says. The impulsivity and other difficulties he had experienced now made sense. With the help of medication and therapy he felt less overwhelmed and began completing some tasks in half the time it normally took.
If a teenager comes to their parents to discuss something they’ve seen on TikTok or another social media platform, it’s best to remain open and curious, experts say.
“Take that as an opportunity to engage them and find out more about your teenager and some of the challenges and struggles that your teenager is going through,” says Anish Dube, chair of the Council on Children, Adolescents and their Families at the American Psychiatric Association. “What are some of the things that they enjoy about this person or page they’re following? What are they identifying with? What is it that they’re concerned about?”
Often the information presented on social media can be inaccurate or overly simplistic, so Dube also recommended pointing kids toward reliable sources like the APA’s directory of mental health topics, which is also available in Spanish, and the American Academy of Child and Adolescent Psychiatry’s resources page for families and youths.
In a college setting, sometimes students are seeking a diagnosis in order to receive services or an accommodation, says Seli Fakorzi, the director of mental health operations at TimelyMD, a virtual health provider that serves more than 1.5 million students on more than 230 US college campuses.
But other times, she says, they just want to discover why they feel different, “or what makes me the same as other people that I know that struggle with the same thing.”
Hawkins says it’s also important to help kids understand that “your diagnosis is not who you are – it’s a part of what you have.”
“Diagnosis is a starting point of understanding,” she adds. “It’s not the endpoint.”
Kianna, the teenager in Baltimore who believed she had depersonalisation disorder, discovered additional videos on TikTok claiming the condition could be treated by varying your daily routines and starting new hobbies. So she began to do so in earnest: crocheting, writing in a journal and learning to roller-skate.
But none of it was helping.
Then, later that year, she returned to school in person and starting spending time with her friends. “I suddenly felt like I was happy again,” Kianna says.
Eventually she saw her school’s psychologist, who reassured Kianna that she did not have depersonalisation disorder, but also did not discount the difficulties she experienced during remote learning.
“You don’t really need to have a mental health disorder to be suffering,” Kianna says. “Everyone needs emotional support.” – This article originally appeared in The New York Times