“I Know What’s Wrong With Me”

Social Media and the Lure of Self-Diagnosis

Magazine Issue
September/October 2023
ILLUSTRATION © SVETAZI

Since I was first licensed to practice therapy over three decades ago, I’ve seen plenty of trends in mental health come and go. Some, such as increased understanding of autism and trauma, have been immeasurably helpful to therapists and clients alike; others, such as the early-’90s wave of “recovered” sexual-abuse memories, have been quite harmful, not only to the general public, but to the field itself. What fueled this harmful wave? A book.

The Courage to Heal, first published in 1988, took over the bestseller lists with its pages of extremely vague indicators of abuse, like feeling the need to be perfect, having trouble expressing feelings, being overprotective as a parent, and feeling alienated or lonely. Having read it, thousands of women struggling with a variety of issues—from significant childhood trauma to anxiety or postpartum depression to difficulty with a boss—decided to find a supportive therapist who’d help them discover the source of their pain: that they’d been sexually abused, even if they had no memory of any abuse.

As a new social worker at the time, I was a spectator to the embrace of this pop-culture-fueled phenomenon. With plans to recover more and more memories, women and their therapists began proactively scheduling admissions to the inpatient psychiatric unit where I worked. The medical staff was all-in. I know it sounds bizarre now, but it became commonplace to hear the stories of women who’d discovered—with the help of support groups, therapists, and the vague symptoms in The Courage to Heal—that they were sexual victims of satanic cults embedded in small towns or abused by multiple members of their families.

Undeniably, the “false memory debate,” as it was deemed, brought something previously unspeakable—the existence and impact of sexual abuse—into the light. But the accusations that were propelled by bad information and social momentum were accepted as fact, by the media and even by juries. Countless families were destroyed. People were arrested and jailed for their crimes. And many women truly struggling with anxiety, depression, often in the midst of a career crisis or an unhappy marriage, did not get the help they needed. After all, the message was clear: if you had these (vague) symptoms, this was the explanation. Your resulting identity was unquestioned and immovable—and it solidified your place in a community of women, supported by mental health professionals, who understood your struggles.

Luckily, you might be thinking, we’ve progressed from that era. But the phenomenon of questionable and socially driven mental health information giving people an untransmutable identity persists—and it’s stronger than ever. While celebrities, outspoken clinicians, and social media influencers have made great strides in destigmatizing mental health challenges—providing young people with clinical language and frameworks to help them make sense of their internal and external worlds—social media is also filled with diagnostic quizzes and graphics that promote psychiatric diagnoses, sometimes for advocacy and awareness, but often for profit and clicks. And once a self-diagnosis is made, the lack of critical thought around it is alarming.

In particular, self-diagnosed borderline personality disorder and obsessive-compulsive disorder seem to be gaining popularity, especially among young people. One middle school counselor told me that she’s increasingly hearing students make pronouncements like, “I feel the need to organize my colored pencils in a certain way: I think I have OCD or autism.” Most of the time, she can trace these self-diagnoses to viral videos on TikTok, like a recent one with 6.7 million views from Khloé Kardashian showing a row of neatly lined cookie jars and captioned, “You say OCD is a disease; I say it’s a blessing!” No wonder 12-year-olds are confused!

The more I combed through mental health information on social media, the more it reinforced how easy it is to self-diagnose, and how appealing this can be. Fifteen-second TikTok videos capitalize on the Barnum effect (named after the circus showman Phineas Barnum), a psychological phenomenon where descriptions are vague enough for people to assume they’re accurate. As with daily horoscopes that make loose predictions, symptom lists for mental health issues on social media are often general enough to resonate with a wide range of individuals. One video declared that you could consider yourself an “overthinker” in need of treatment if “you’ve ever worried that you somehow made someone upset, you’ve ever worried that someone doesn’t like you, or you’ve ever thought you did something wrong.” Evidently, I’m a certifiable overthinker. Probably because I’m a Virgo.

Meg, a 24-year-old I treated for anxiety when she was in high school and occasionally saw through her college years, was a bright and motivated student whose parents continually encouraged her to “reach for the stars.” When she decided to go to law school, her father, an attorney, became increasingly intrusive, wanting to read her papers and expecting access to whatever she was studying in her classes. Her first year went well, all things considered; but during her second year, she began feeling overwhelmed, had difficulty sleeping, and continually found herself questioning whether she really wanted to go into law.

During fall break, she scheduled an appointment with me. “Sometimes I’m okay,” she said, “but then I feel panicky. And I’m not getting along with my roommates.” Since I’d known Meg and her parents for years, this anxiety felt familiar to me, but she rebuffed my suggestions that some of what she was experiencing had to do with the increased pressure from her father, roommate conflicts, and the demands of law school. “It’s more than that,” she said. “I did some research, and I’m afraid I’m bipolar. I looked at the list of symptoms: I have unstable relationships, and my moods are up and down. Plus, my cousin is an addict, and I bet she’s bipolar, too. This runs in families. It’s the only explanation for the ups and downs I’ve been experiencing. I need to see a psychiatrist.”

Meg’s research had consisted of TikTok and YouTube videos. Although I didn’t believe she was bipolar (and told her so), I gave her the name of a psychiatrist to contact. Knowing the wait to see him would be several weeks, we scheduled another session to do some short-term problem-solving. For starters, she needed to have an uncomfortable conversation with her roommates about their excessive drinking and the resultant chaos in the apartment. She decided to drop a particularly time-consuming law-school project and go back to the gym. We also brainstormed ways to handle her father’s “enthusiasm.” Soon, she started feeling less anxious about her ability to handle classes and less afraid of her feelings. In the end, she canceled her appointment with the psychiatrist. Now, a few years later, she’s successfully managing her anxiety and the demands of her new profession.

Permanence vs. Adjustment

Mental health professionals I’ve talked with are increasingly concerned with the stance they see in many of their clients that a diagnosis is a permanent and dominant part of their identity—which is particularly problematic if the diagnosis is inaccurate. “Sometimes people need to embrace a particular identity for a time,” says Chris Willard, a psychologist who works with college students and young adults. “It helps them until they can outgrow or modify it. But social media can keep them locked in because losing that part of their identity might mean losing their followers, their sense of having a tribe. The more we fuse with our identity, the harder it is to evolve.”

Willard also sees the self-diagnosis trend picking up in women who are trying to balance parenting, careers, relationships, and larger societal issues like racism and diminishing reproductive rights. It’s no surprise that stressed-out, exhausted mothers have difficulty concentrating and feel like they’re at the end of their rope. According to a 2021 Pew Research Study, 74 percent of mothers in opposite-sex relationships say they manage their children’s schedules and activities, often on top of household duties and work outside the home. The result? Willard says he’s talking to more moms who are concluding they have adult ADHD.

How in the world did they come to this conclusion? To find out, I took an online quiz for ADHD, trying to channel the state of a young woman in a demanding job who’s managing her children’s activities (though, honestly, most of my answers also fit yours truly, a 57-year-old overextended social worker whose kids are grown and out of the house). It asked: Do you lose track of your thoughts? Do you have to move around after sitting still for a period of time? Do you feel anxious? Mostly, I selected the sometimes option. Then, I provided my email and within seconds, I received the results of my quiz in my inbox: I had ADHD, combined type! I could click to purchase my full report and 30-day online program. I’ve been getting daily emails from them ever since. “It turns out that a lot of female users with the same score as you were able to significantly reduce their ADHD symptoms,” the most recent cajoled. My clinical eyes were rolling back in my head.

How are today’s clinicians helping young people see the relationship between how they feel, think, and connect amid life’s inevitable challenges? Personally, I recognize and validate the impact of these challenges, while offering language and approaches that emphasize malleability. I continually teach my young clients how to step back and observe how thoughts and feelings change, and what they do to escalate or deescalate their responses to those emotions. The goal is not to feel calm all the time, nor to eliminate stressors, but to do as Viktor Frankl described: pause in that space between stimulus and response to consider the power of our next move.

As a therapist, I’ve always seen myself in the business of change. Part of helping people change in big and small ways means accepting that we’re always in process, consistently adjusting and redefining what works and what doesn’t. Now, people are benefiting from the temporary certainty that accompanies self-diagnosis, but at a cost. Often, they sacrifice growth, curiosity, and even adventure. I fear the lens of diagnosis as permanent identity discounts the plasticity of, well, life!

Angie, a clinician in her mid-30s working in a university setting, told me she continually runs up against this issue with the anxious college students she treats. “They’re very disappointed with my approach,” she says, “because I challenge them to look at patterns in their life and see what can change.” It’s uncomfortable for them, and she’s often met with anger. In fact, a neurotypical student once told her that she wanted the right to be “freely anxious,” and Angie’s teaching of skills was the same thing as telling her to mask. “You’re trying to change me, and that’s part of the problem,” the student had exclaimed. “This is who I am! You’re not honoring who I am!”

Even more challenging, says Angie, is the approach that her psychology interns have adopted: therapists, they tell her, are not supposed to challenge anything from clients, or question their perspective in any way. (When I heard her say this, I was immediately reminded of my early career, when I was told not to question or confront anyone’s “recovered memories” or the treatments being used to uncover them.) Angie wants her college students and trainees to take a both/and approach: how do we both acknowledge the validity of systemic problems and allow for useful self-reflection, analysis, and growth? But many of them aren’t buying it. As a systems-trained therapist who believes in critical thought and the possibility of change, her frustration is palpable. She wonders where the field is headed.

The Benefits

What about the benefits of this self-diagnosis trend? Many people see the potential of self-diagnosis to start important conversations in the consulting room. One school counselor who works in a high-achieving school for grades 6–12 told me that when students come to her with a specific diagnosis in mind, it can serve as a first step toward a needed evaluation. “As we gather more information,” she says, “we might find that the student has an undiagnosed learning issue. We can then offer direct support and help them better understand why they’ve been struggling.” For some students, a self-diagnosis is simply a way to talk about themselves and try something on, which, in essence, is what tweens have always done: only they now have access to newly popularized clinical language with which to do it. This new language is also shaping discussions between parents and kids. More than ever, counselors report, kids are going to their parents to talk about emotional and relational issues; and parents are responding openly and reasonably.

Plus, sometimes self-diagnosis is accurate. Robert, a teen whose best friend was my client, reached out to me because he was having disturbing thoughts that frightened him. At first, he’d believed he was going crazy and told no one. But after doing some online research, he’d begun to suspect that he was having intrusive thoughts. OCD ran in his family—his aunt washed her hands until they were raw and wouldn’t let anyone in her house. But until he’d found a blog about OCD online, he didn’t know that the intrusive thoughts he’d been having—that he might’ve accidentally injured someone at his work in a grocery store or that he might impulsively drive his car into oncoming traffic—could be a symptom of the disorder. The more he read, the more relieved he felt, which ultimately gave him the confidence to reach out to me for help.

As a crusty therapist who begrudgingly navigates the landscape of social media, I find it easy to blame the problems that come with rampant self-diagnosis on armchair mental health experts, who don’t seem to have much expertise but do have millions of followers. “What other people think doesn’t matter. But what you do DOES,” wrote one Instagram self-described mental health coach. I doubt this global approach works so well in the context of most relationships, I mused, reading this advice.

It feels good to blame others. But as therapists, we must practice what we preach and engage in some self-examination. What have we done as a field to contribute to the rigidity inherent in diagnosis? The public seems to be pushing back in its own way, loosening the boundaries. Should we be doing more to push back against the rigidity with them? How susceptible are we as a profession to the comfort of labels, or as author-philosopher Ian Hacking described it in a 2006 article for the London Book Review, the practice of “making up people”?

According to Hacking, the more diagnoses we come up with, the more trainings we go to, and the more specialties we create, the more people cooperate with being categorized. If we teach our young people how to classify themselves and give them the language to do so, aren’t we directly contributing to the surge in self-diagnosing? And shouldn’t we embrace it if it has the potential to spawn understanding and skill-building? Or should we be holding tighter to our well-earned expertise, our deep knowledge of human suffering, and how best to categorize and alleviate it? Either way, what are we afraid of?

 

ILLUSTRATION © SVETAZI

Lynn Lyons

Lynn Lyons, LICSW, is a speaker, trainer, and practicing clinician specializing in the treatment of anxious families. She’s the coauthor of Anxious Kids, Anxious Parents and is the co-host of the podcast Flusterclux. Her latest book for adults is The Anxiety Audit.