For Some Women With ADHD, TikTok Is the First Place They Felt Heard

Emilie Leyes, 27, works with actors in New York to build mental resilience and manage work stress. When she started scrolling through TikToks about attention deficit hyperactivity disorder (ADHD), it was because she wanted to learn more about people with ADHD—so that she could better help clients who had the condition.

Leyes quickly discovered, though, that she identified strongly with the people in these videos.

“​​I truly had no idea I had ADHD until I joined TikTok,” she says.

Leyes is one of many women to conclude that they have ADHD after spending time on the platform. The ADHD hashtag on TikTok has 14.5 billion views; #adhdawareness has more than 500 million, and the videos themselves can have hundreds of thousands—if not millions—of hits. Some clips list symptoms; others offer tips for coping with daily life with ADHD. A number aim to reduce the shame and stigma often attached to the condition. They could be comedy skits about getting distracted or struggling to clean the apartment, opening with phrases like, “People with ADHD will understand this video on a different level.” Others are explanatory videos about ways to stick to a routine or organize your space.

For many women who see these videos in their feed, it’s the first time they’ve learned about some of the symptoms of ADHD, beyond the most widely known: hyperactivity and trouble focusing. “As an overachieving child who got good grades, [ADHD] was never on my radar,” Leyes told TIME in an email. “I was shocked to discover through TiKTok that my experiences were consistent with ADHD.”

At the same time, experts in psychology say that it can be dangerous to rely on social media platforms such as TikTok for information on mental health conditions that require a professional’s diagnosis. And although many social media platforms share information on mental health, TikTok is a particularly effective place for health-based messages to spread—for better or worse. Because of how the algorithm works, it’s likely to show you content you didn’t even know you’d want to see—or, for that matter, tell you about a condition you didn’t know you might have.

Why women are turning to TikTok for advice on ADHD

Leyes isn’t alone in her shock to discover, well into adulthood, that she has ADHD. In a essay published in 2018 in the Brown University Child and Adolescent Behavior Letter, Anne Walters, clinical professor of psychiatry and human behavior at Brown, writes that studies estimate as many as half to three-quarters of all women with ADHD are not diagnosed, and many of the cases were overlooked in childhood because “ADHD in girls and women looks different than symptoms in boys or men.”

According to the Mayo Clinic, ADHD is “a mental health disorder that includes a combination of persistent problems, such as difficulty paying attention, hyperactivity and impulsive behavior.” Although ADHD is commonly thought of as a disorder of hyperactivity, the U.K.’s National Health Service says that girls are more likely to show inattentiveness in a quieter way, with less classroom disruption.

Some experts say the problem is made worse by the pressure on girls to “mask” their ADHD—that is, to conceal their symptoms. “Little girls for so long were just meant to be quiet and pretty and to not make a fuss,” says Lorraine Collins, a counselor and psychotherapist in London. “So many will edit themselves in order to feel accepted.”

A 2014 research review also found that ADHD is sometimes discounted in women because other, more commonly diagnosed disorders are diagnosed instead—like anxiety or depression. “‘Maybe it’s just anxiety’ is a very common copout,” explains Dr. Inna Kanevsky, a psychology professor at San Diego Mesa College. The waters can be muddied, she says, because untreated ADHD can sometimes cause anxiety, but ADHD could co-exist. Nonetheless, many women walk away with only one diagnosis.

That’s if they access medical care at all.

“The waiting list is so long, you think ‘Well, it can’t be that serious, it’s not being prioritized. I’ll just get on with it,’” Collins says. “But your life starts becoming unmanageable, because you’re getting more and more distressed.” In the U.K., Reddit forums are flooded with people complaining about waiting for years for a diagnosis, unless they pay for private healthcare.

Similarly in the U.S., “It’s really expensive to find out if you have ADHD,” Kanevsky says. “If you can’t get insurance then you have to go private, and if you go private it’s thousands of dollars. Not everybody has the resources.”

Because of racism and discrimination, Black women may face extra barriers in getting an official diagnosis. For one thing, most research on the disorder has focused on white men, researchers concluded in a 2009 report published in the journal Women & Health. Another issue is how Black women are treated when they step into the doctor’s office.

A 2019 study published in Health Services Research analyzed the reasons for unmet need for mental health care among Black people in America, and reported that “discrimination based on mental illness and on race was even more exacerbated among Black women.” The study goes on to say that, for both men and women, those negative experiences with mental health care affected whether or not they continued to seek treatment.

Many Black women report not being believed or heard when they go down the official route. Stereotypes can contribute to this. “For Black women who are seen as ‘the strong Black woman,’ things get missed,” Collins says, such as emotional pain and struggle. “There’s the perception that ‘the strong Black woman’ can just get on with it.”

By contrast, women watching TikToks about ADHD symptoms may feel welcomed into an online community of like-minded people who not only behave like them, but believe them.

The problem of misleading information

Still, it’s important that TikTok users understand where their information is coming from and that not all health information they encounter is reliable. Professionals do use the platform to educate people about the condition, but unqualified people with limited knowledge do, too. The sheer volume of ADHD videos means that some myths about the condition inevitably abound.

Anthony Yeung, at the University of British Columbia, is the co-author of a study published in the Canadian Journal of Psychiatry in 2022 which found that approximately half of the ADHD TikToks it analyzed were misleading. “We noticed videos which said, ‘If you don’t like doing homework, you have ADHD’; ‘If you zone out during meetings, you probably have ADHD,” he says. “These are extremely common things, especially now that the pandemic has shifted the way we work.”

Yeung says these videos often include Barnum statements (named after the showman P. T. Barnum), which are assertions vague enough that almost everyone feels that it applies to them. Yeung explains: “But if everyone has a mental health disorder or a psychiatric condition, that means no one does. So we do need mental health providers and clinicians to make that distinction.”

Information from TikTok can be difficult to verify, says Lola Garant, who runs an ADHD-focused coaching business and an account on TikTok under the username @theweirdocoach. “This is always the danger that comes with a social media platform,” Garant tells TIME in an email. “You can’t validate where the information comes from and the main driving force behind the platform is fame. People want to get more views or followers and are sometimes willing to say things that aren’t 100% true to gain those things.”

The role of the algorithm

TikTok’s highly engaging algorithm and ‘For You’ page is key to all of this.

When Yeung started studying ADHD videos, he noticed something interesting: “The TikTok algorithm started to recommend more and more [ADHD] videos. I thought: ‘Wow. I’m now starting to see how this can create a very personalized algorithm.’” The TikTok algorithm is eerily good at predicting what people might like to watch. After detecting user interest in a certain topic, it will keep recommending similar videos. So if you’ve shown an interest in TikToks about ADHD, you’re probably going to see a lot more of them. According to Yeung’s findings, this means that you’ll probably be exposed to more misleading claims about the condition.

TikTok also predicts what you will enjoy by looking at the preferences of people who are similar to you, explains Sarah Cen, a researcher at the department of electrical engineering and computer science at MIT. This process is known as collaborative filtering. “For instance, if two people click on a bunch of similar videos, the algorithm infers that they have similar tastes,” Cen says.

Misinformation about ADHD could therefore potentially enter your feed simply because of your shared interests with other users. It’s easy to see how users get sucked down a rabbit hole.

As Cen says, key to this is that “regulation of social media, especially in the U.S., is lax right now… it’s got to the point where there’s way too much information and we can’t sort through it properly. We don’t have any way to tell who’s credible and who’s not. Who can we trust?”

A TikTok spokesperson told TIME: “We’re proud that TikTok has become a place where people can share their personal experiences with mental health and support one another, and we take our responsibility to keep our platform a safe space for these important conversations seriously. That’s why we continue to invest in digital literacy education aimed at helping people evaluate and understand content they engage with online. We encourage anyone seeking mental health advice, support or diagnosis to reach out to a qualified professional.”

Collins says, when it comes to finding trustworthy information, “It’s about being discerning about where you go [on the platform]. Make sure whoever’s speaking is registered and accredited, and they back everything up with research and data. Then, follow it up. Go to official websites where you can get some solid advice.”

Reducing stigma, understanding a diagnosis

As with every social platform, TikTok offers positives and negatives. One positive is that people are using the platform to open up about ADHD. “There have been lots of attempts [on TikTok] to reduce the stigma about mental health conditions. As a psychiatrist, I think that’s great,” Yeung says.

The platform also provides much-needed community and support for people who aren’t finding it elsewhere. “When they see other people talking about their experiences—and all their quirks that made them feel like they were weird can be explained with 4 letters—it can be a relief,” Garant says.

It can also provide guidance on how to manage symptoms. Leyes says that after watching TikToks about ADHD, “I began to understand why my brain works the way it does.”

She also adds that it helped her secure an official diagnosis: “If it hadn’t been for the resources I gained from social media, I wouldn’t have known what to ask for, how to describe my experience, and how to navigate the diagnosis once it became official.”

Collins agrees that social media tips can be useful. “For finding ways to self-regulate your emotions and to manage your time, it can be brilliant,” she says. But, she says, TikTok is not a replacement for proper healthcare. “Yes, you want to understand yourself and get to the bottom of how you’re feeling—that’s good, that’s part of self-care—but also know that you need the guidance of a health care professional.”