Health

On TikTok, ADHD Women Finally Feel Heard


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

However, Leyes quickly discovered that she clearly identifies with the people in these videos.

“I didn’t really know I had ADHD until I joined TikTok,” she said.

Leyes is one of many women who conclude they have ADHD after spending time on the platform. The ADHD hashtag on TikTok has 14.5 billion views; #adhdawareness has over 500 million, and the videos themselves can get hundreds of thousands — if not millions — of hits. Some clips list the symptoms; Others offer tips for dealing with everyday life with ADHD. A number intended to reduce the shame and stigma often associated with a medical condition. They can be comedy skits about being distracted or struggling to clean an apartment, opening with phrases like “People with ADHD will understand this video on a whole other level.” Others are videos that explain ways to maintain a routine or organize your space.

For many women who watch these videos in their feeds, it’s the first time they’ve learned about some of the symptoms of ADHD, in addition to the most widely known: hyperactivity and difficulty exercising. central. “As an over-study kid who gets good grades, [ADHD] Leyes told TIME in an email. “I was shocked when I found out through TiKTok that my experience was consistent with ADHD.”

At the same time, psychologists say it can be dangerous to rely on social media platforms like TikTok for information about mental health conditions that require expert diagnosis. And while many social media platforms share information about mental health, TikTok is a particularly effective place for health-based messages to be spread — for better or for worse. Because of the way the algorithm works, it has the potential to show you content you didn’t even know you wanted to see — or for that matter, tell you about a condition you didn’t know you had. can be acquired.

Why women turn to TikTok for ADHD counseling

Leyes was not alone in being shocked to discover that, in adulthood, she had ADHD. In one essay Published in 2018 in the Brown University Letters on Child and Adolescent Behavior, Anne Walters, clinical professor of psychiatry and human behavior at Brown, writes that studies estimate approximately half to three-quarters of all women with ADHD go undiagnosed, and many of these cases are missed during childhood because “ADHD in girls and women looks different from symptoms in children.” brother or man.”

Based on 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 often thought of as a hyperactivity disorder, The UK’s National Health Service says that girls are more likely to show a lack of attention in a quieter, less disruptive way in the classroom.

Some experts say the problem is made worse by pressure on girls to “cover up” their ADHD — that is, to hide their symptoms. Lorraine Collins, a consultant and psychotherapist in London, said: ‘Little girls have long wanted to be quiet, pretty and not make a fuss. “So a lot of people will self-edit to feel accepted.”

One 2014 Research Review also found that ADHD is sometimes reduced in women because other disorders are more commonly diagnosed instead — like anxiety or depression. “Maybe it’s just anxiety,” explains Dr. Inna Kanevsky, professor of psychology at the University of San Diego Mesa. Water can be cloudy, she says, because untreated ADHD can sometimes cause anxiety, but ADHD can coexist. However, many women walk away with just one diagnosis.

That is if they access medical care.

“The waiting list is so long, you think ‘Wow, it can’t be that serious, it’s not a priority. I’m going to get on with it,” Collins said. “But your life starts to become unmanageable, because you’re suffering more and more.” In the UK, Reddit forums are flooded with people complaining about waiting years for a diagnosis, unless they pay for private healthcare.

Likewise in the US, “Finding out if you have ADHD,” says Kanevsky. “If you can’t get insurance you have to go private, and if you go private, it’s thousands of dollars. Not everyone has enough resources. “

Because of racism and discrimination, Black women may face more barriers to being officially diagnosed. However, most research on the disorder has focused on white men, the researchers concluded in a recent study. Report 2009 Published in the journal Women & Health. Another issue is how black women are treated when they walk into a doctor’s office.

A 2019 study published in the journal Health Services Research analyzed the reasons black women were not receiving mental health care in the United States, and reported that “discrimination due to mental illness and race is even more severe in black women.” The study goes on to say that, for both men and women, negative experiences with mental health care influence whether they continue to seek treatment.

Many black women said they were not believed or heard when they went the official route. Prejudice can contribute to this. “For black women who are seen as ‘strong black women’, everything is going to be missed, such as the emotional pain and struggle,” says Collins. “There’s this notion that the ‘strong black woman’ can just get on with it.”

In contrast, women who watch TikToks for ADHD symptoms can feel welcome into an online community of like-minded people who not only behave like them but believe them.

Misinformation problem

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

Anthony Yeung, at the University of British Columbia, is a co-author of research published in the Canadian Journal of Psychiatry in 2022, found that about half of the TikTok ADHD it analyzed were misleading. “We see videos that say: ‘If you don’t like doing your homework, you have ADHD’; “If you zone out in meetings, you could have ADHD,” he says. “These are incredibly common, especially now that the pandemic has changed the way we work.”

Yeung said these videos often include Barnum’s statements (named after performer PT Barnum), are statements that are vague enough that most people feel that it applies to them. “But if everyone has a mental health disorder or mental illness, that means no one has,” explains Yeung. So we need mental health providers and clinicians to make that difference.”

Information from TikTok can be difficult to verify, said Lola Garant, who runs a coaching business focused on ADHD and has an account on TikTok with the username @theweirdocoach. “This has always been the danger that comes with social media platforms,” Garant told TIME in an email. “You cannot validate where the information is coming from and the main driver behind the platform is popularity. People want more views or followers and are sometimes willing to say things that are not 100% true to get there.”

The role of algorithms

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

When Yeung started researching ADHD videos, he noticed something interesting: “The TikTok algorithm started suggesting more and more [ADHD] video. I thought: ‘Wow. Now I’m starting to see how this can make for a very personalized algorithm. ‘” The TikTok algorithm is very good at predicting what people might enjoy watching. After detecting user interest in a certain topic, it will continue to recommend similar videos. So if you’ve shown interest on TikToks about ADHD, you’ll probably see more. According to Yeung’s findings, this means you’ll likely be exposed to more false claims about your condition.

According to Sarah Cen, a researcher in the department of electrical engineering and computer science at MIT, TikTok also predicts what you’ll like by looking at the interests of people like you. This process is called collaborative filtering. “For example, if two people click on a series of similar videos, the algorithm assumes they have similar interests,” says Cen.

As a result, ADHD misinformation can enter your feed just because of your shared interests with other users. It’s easy to see how the user is sucked down a rabbit hole.

As Cen puts it, the crux of the matter is that “regulation on social media, especially in the US, is lax…it’s gotten to the point where there’s too much information and we can’t sort it all out in one place. reasonable way. We don’t have any way of distinguishing who is trustworthy and who is not. Who can we trust? “

A spokesperson for TikTok told TIME: “We are proud that TikTok has become a place where people can share their personal experiences with mental health and support each other. That’s why we continue to invest in digital literacy education to help people appreciate and understand the content they interact with online. We encourage anyone seeking mental health advice, support or diagnosis to contact a qualified professional. “

Collins says, when it comes to finding reliable information, “It’s about being smart about where you’re going [on the platform]. Make sure whoever is speaking is registered and accredited, and backs everything up with research and data. Then follow it. Visit the official website where you can get some solid advice. “

Reduce stigma, understand diagnosis

As with every other social platform, TikTok offers positives and negatives. One positive thing is that people are using this platform to be open about ADHD. “There was a lot of effort [on TikTok] to reduce stigma about mental health conditions. As a psychiatrist, I think that’s great,” said Yeung.

The platform also provides much-needed community and support to those who don’t find it elsewhere. “When they see other people talking about their experiences — and all the quirks that make them feel weird can be explained by four letters — it can be a relief,” says Garant.

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

She also added that it helped her secure an official diagnosis: “If it weren’t for the resources I’ve gotten from social media, I wouldn’t know what to ask for, how to describe it. describe my experience and how to navigate the diagnosis once it becomes official.”

Collins agrees that social media tips can be helpful. “For finding ways to self-regulate emotions and manage your time, that can be great,” she says. However, she said, TikTok is not a substitute for proper healthcare. “Yes, you want to get to know yourself and get to the bottom of how you feel — that’s fine, it’s part of self-care — but also know that you need the guidance of a care professional. health”.

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