Trending or Troubling: Social Media’s Role in Mental Health Diagnoses

Sara CrockerJanuary 8, 2024
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By Sara Crocker | Photography by Mirelle Inglefield & Karina Romero

Before the pandemic, James Salas lived a life on the go. 

He took 18 to 20 hours of classes in college nearly every semester to keep his attention – or to retake lectures, where he struggled to maintain focus. After graduating from Our Lady of the Lake University in San Antonio, Texas, he dove headfirst into his work, holding a range of jobs in the scientific field  while simultaneously serving as the primary caregiver for his ailing mom. She died in 2017, followed by his dad in 2018. Salas had barely begun processing his grief and life on his own when the world shuttered in the early stages of the COVID-19 pandemic. He was forced to stay home and be still. He turned to TikTok.

By the 36-year-old’s own estimation, he was spending six to seven hours a day “doomscrolling” through videos on the social media platform during the height of quarantine. First, it was Star Wars, music and comedy content. Then, creators with Tourette syndrome showed up on his For You page – TikTok’s designated area to discover new videos and creators. After that, the pharmaceutical chemist – who now lives in Phoenix – began seeing more content related to mental health and neurodiversity, including attention deficit and hyperactivity disorder and autism. 

“The algorithm on TikTok is like, ‘Oh, you’re into things with mental health,’” Salas says of the videos he was being served. He related to the experiences people shared about ADHD and autism. “I was like, ‘Oh, I have that.’”

It was an aha moment to which anyone who has felt a mysterious pain or noticed an odd blemish on their skin, and subsequently turned to WebMD for answers, can surely relate. But the phenomenon has spread from our bodies to our minds. About one in four people are using information gleaned from social media to self-diagnose mental-health conditions, according to a survey by the digital health-care platform Tebra. It’s a marked increase that Arizona mental-health providers have observed in the past few years. 

Valley pharmacy chemist James Salas related to videos he saw about autism and ADHD on TikTok.
Valley pharmacy chemist James Salas related to videos he saw about autism and ADHD on TikTok.

“I think people are always searching to try to understand themselves, and right now, social media is a huge way that people are connecting with the world, and then, therefore, feeling that they’re connecting with themselves.” 

“I’m seeing that so, so frequently, and in a way that seemed to increase quite a bit over the pandemic in particular,” says Adam Holman, a licensed clinical social worker and owner of Main Quest Psychotherapy in Tempe. In particular, he’s seen an increase in questions around ADHD, autism and borderline personality disorder – mirroring content topics that have proliferated on social media. 

Practitioners say this marks another evolution in the way that people use the Internet to understand what’s going on with their body or mind, first starting with search tools like WebMD and giving way to social sharing that can create community and give people a window into their experience with a condition.

“I think people are always searching to try to understand themselves, and right now, social media is a huge way that people are connecting with the world, and then, therefore, feeling that they’re connecting with themselves,” says Dr. Ryan House, co-founder of Mental Health Center of America, which has locations in Phoenix and Mesa.

While practitioners applaud the social space for making conversations about mental health accessible and less stigmatized, they say that self-diagnosis can present challenges – a patient may be eager to work on a particular issue or perceived condition, while a practitioner will want to look at a patient’s mental health more holistically. 

“It does become really tricky when someone shows up and has this internal certainty over meeting these criteria,” Holman says. “My thought process is always, ‘I’m treating a person, not a diagnosis.’”

Although he will start from an assumption that his client is likely right, he’s also taking into consideration the amount of overlap in mental-health symptoms – a nuance that can be lost in short, attention-grabbing social media videos. “They may be experiencing a lot of those symptoms legitimately, but the root of those symptoms might be coming from a different diagnosis,” he says. 

House echoes that, noting anecdotally that about half of the people who come into his office with a self-diagnosis are right about it. “That doesn’t mean that they’re not accurate in what they’re going through. It’s just not an accurate diagnosis,” he says. “That’s why having a real, thorough clinical interview is so important.”

But only 43 percent of people who self-diagnose a mental-health condition follow up with a medical professional, according to the Tebra survey. Cost and availability of mental-health providers can drive that lack of follow-up, as well as the initial diagnosis.

Helpful Tool or “Self-Fulfilling Prophecy”?

Those factors make social media platforms a fertile ground for discussion and self-diagnosis – both for mental and physical health conditions. 

For years, medical professionals have shared similar kudos and cautions around using online self-diagnostic tools for physical ailments. They have pointed to the pros of a more engaged patient who can better advocate for themself, but also the pitfalls of searching and then panicking over the possibilities. Some physicians have taken to spaces like Reddit to share “the most outrageous self-diagnosis that you’ve heard from a patient.” In one example, a pharmacist noted that patients have come to him convinced they have Stevens-Johnson syndrome – a rare but serious skin condition that can be caused by medication. Instead, the pharmacist shared, it was laundry detergent that had caused the rash. 

Just as someone could over-pathologize skin irritation based on what they’ve found online, there’s risk that people can do the same with mental-health conditions. This is particularly something practitioners warn of with young people, who spend much more time online and are still developing and defining themselves as people. They run a greater risk of making a self-diagnosis part of who they are.

Banner Behavioral Health Hospital raised concerns around TikTok use and teens self-diagnosing a number of conditions, including Tourette syndrome. In a blog post, the hospital noted seeing a surge in teenage girls presenting “physical and verbal tics.” Physicians shared in the post that the underlying cause was “stress and possibly underlying anxiety or depression.” Patients received individualized treatment plans – and two weeks off of TikTok. Following treatment, their tics were gone, the hospital reported. 

Other practitioners likewise have treated patients who were certain of a diagnosis, only to realize, after working with their provider, that something else was causing their symptoms.

Dr. Kristen Northup, a licensed clinical psychologist at Mental Health Center of America in Phoenix, says she treated a young person who believed they had ADHD. But as they began therapy and addressed “environmental factors,” like getting enough sleep and having a nutritious diet, the patient’s symptoms resolved. She understands why more people are questioning if they may have ADHD.

“If you look at the world around us, there’s so many things trying to grab our attention, like television, text messages [and] emails, so it’s no surprise that people are struggling to stay focused and complete tasks,” Northup says.

Holman likewise encountered a patient who self-diagnosed several different mental-health conditions, first through TikTok and then online screening tools. “They came to the realization on their own, ‘I really highlighted the existence of these things in my life because I had so much exposure to them,’” Holman recalls.

In these cases, patients sought out treatment that allowed them to work through these things and get at the root of the issue. “[It’s] a good reminder, if you’re not sure, to use the phone to call someone to investigate versus continuing to scroll,” Holman says. 

For those who continue to consume information online, “that tends to start to be a self-fulfilling prophecy at times for our young people that don’t have a lot of that more concrete, more healthy, mature social identity of self,” House says. “They start to form their identity through their disorder.” 

Finding an Online Community

On the flip side, social media can spark meaningful exploration. 

Phoenix artist Dylan Mierzwinski uses Instagram to share her work and experiences as a business owner, including struggles she’s encountered with productivity and planning. A connection she made on the platform with a fellow artist who has ADHD is what ultimately spurred her to seek support and advice from a medical professional about the disorder.

“It’s so wild that this stranger out in the world helped me reveal this crucial part of myself that has always been there, and be able to name it,” says Mierzwinski, who was medically diagnosed with ADHD at 28 but has spent her life building coping mechanisms to get by.

Artist Dylan Mierzwinski was encouraged to seek help for her ADHD via social media.
Artist Dylan Mierzwinski was encouraged to seek help for her ADHD via social media.

Social media has also been a way for her to find community – she follows for the memes about ADHD, not advice – and she’s had people reach out to her.

“It’s tricky; there’s a lot of experiences that can feel like ADHD,” Mierzwinski says. “I always try to remind people to get an opinion from a psych that they trust.” 

But, she recognizes that may not be possible for everyone, so if she does share any tips on social media, they’re the type of life skills she has learned that can benefit anyone, like setting alarms or reminders.

“I try to remind people that they can help themselves, even if they can’t access the health care or medication piece of it yet,” she says. 

Wanting to share credible insights and information, Holman creates short videos on topics such as relationships, trauma and ADHD (something he was diagnosed with at 25) that he shares on TikTok, Instagram and YouTube.

“I was having a lot of the same conversations [with clients] over and over again… I was like, ‘Why am I doing this on an individual scale when it seems evident that a bunch of people are needing this same message?’” Holman recalls. 

He’s not alone. Harvard University has convened people who have built an online following about #mentalhealth for a Creators Summit on Mental Health, and Instagram launched a pilot Well-being Creator Collective in 2022, both with the aim of equipping influencers with accurate mental-health information. 

“Ultimately, I just want people to have good mental health and want the access to be there,” Holman says. “We have this wonderful tool that exists in social media and the Internet, as long as we’re using the tool in a helpful way.” 

Clinical social worker Adam Holman says discussion and questions about ADHD, autism and borderline personality disorder have proliferated on social media.
Clinical social worker Adam Holman says discussion and questions about ADHD, autism and borderline personality disorder have proliferated on social media.

“Thrival Mode”

Despite feeling seen by the content he saw on TikTok, Salas knew he had to see a licensed professional to be certain. 

“As a scientist, I’m extremely critical of things that pop up on social media,” he says. 

When seeking care, Salas “asked to be evaluated for anything and everything,” and was diagnosed with ADHD. His physician recommended treating that first, then exploring other issues from there. Immediately, Salas says he noticed a difference thanks to medication and therapy. And, that led him to confront issues he’d avoided, from losing his parents to the trauma he experienced growing up. His therapist recommended he seek care with a trauma-informed counselor, who diagnosed him with PTSD. 

Salas first sought care in 2021 and says this fall was the first time he’d felt able to be at peace and to do things because he wanted to, not because he was looking for something to avoid being alone with his thoughts. 

“I don’t have to do things to survive,” says Salas, who has graduated from therapy and is beginning to write a book about his life. He describes where he’s at as “thrival mode,” rather than survival mode. “My quality of life has just exponentially gotten better, but all that started with TikTok,” he says.

While Salas believes he would have eventually reached out for support, he feels TikTok, which he now only uses for maybe 20 minutes a day, shortened his timeline.

“It’s possible I could have still gotten on this journey regardless, but the rate and the time in which it occurred would not have been possible without it,” he says. “People don’t talk about those things in random conversation.”