Abstract
This essay discusses the trend of self-diagnosis for mental disorders by people consuming social media, such as TikTok videos. It then examines the complexity of proper diagnosis while discussing the challenges the DSM-5 faces in providing clear guidance on diagnosis. Lastly, it addresses the risks of self-diagnosis and steps people can take to not succumb to those risks.
Introduction
In the summer of 2022, my family was about to enjoy a much-needed vacation. But before we began the 1500-mile drive, we were slightly concerned about a noise from the family van. The van was dropped off at the local mechanic who regularly changes the oil in all our vehicles. Later in the afternoon, the mechanic called back and said the van would need a $7000 repair and even suggested buying a new car might be cheaper. Shocked by this diagnosis, we took the van to another mechanic we knew from buying a used car. After a day, this other mechanic said he had seen this problem in vans many times before and it would cost less than $500 to repair. Of course, we went with the second mechanic and the van is still working great to this day.
The risks and dangers of misdiagnoses can be significant, even for a mechanical car that is relatively less complicated than the human brain. In the case of our van, the misdiagnosis would have cost us significantly and the problem would still not have been fixed. However, for humans, the risks and dangers of misdiagnosing a mental condition can be even more substantial.
With the widespread availability of information online and the broad reach of social media, the practice of self-diagnosis and sharing one’s story online has presented new challenges to the mental health community. The framework for diagnoses, including the use of the DSM-5, is intended to facilitate common understanding and nomenclature for psychologists and psychiatrists, as well as aid in predictions and information sharing and even guide therapeutic practices (Maddux & Winstead, 2016; David & Deeley, 2024). But despite significant research and debate, the DSM-5 is not perfect, which fact underscores the complexity of diagnosis. Even so, many unqualified and untrained people self-diagnose because of ease of access to the DSM-5 and because they hear others discussing their symptoms of disorders on social media. This practice has led to problems such as definition dilution and perceived absolution of responsibility for one’s actions (Cassata, 2024; David & Deeley, 2024). While self-diagnosis may have its place, individuals who choose this route should always seek professional assistance and remain open to the possibility that their self-diagnosis could be incorrect.
Self-diagnosis of Mental Disorders Via TikTok
Juliana Dodds (The Project, 2022) did not feel understood. In a search for answers, she turned to watching content on social media, including TikTok. When she heard others’ stories, she felt they could fully explain her perspective. Many people, like Juliana, are looking for answers as to why they act the way they do. For some people, the discovery of social media influencers explaining their symptoms becomes a launching point of self-discovery, which leads to a conversation with their psychologist and may confirm the diagnosis. However, not all cases are as straightforward as watching a video, talking to a therapist, and receiving confirmation of a diagnosis. Others may feel validated after watching social media, but when discussing the issue with a psychologist, and after being tested multiple times, the self-diagnosis is incorrect. Some patients become convinced they have a specific mental disorder despite what the psychologist says. Juliana falls in the latter category, and although her doctor diagnosed her with complex post-traumatic stress disorder, she is convinced she has attention-deficit/hyperactivity disorder.
The trend of self-diagnosis stemming from social media has become so pervasive, that a recent study was conducted to understand how accurate or inaccurate these influencers are. Cassata (2024) reviewed the study conducted by Drexel University’s A.J. Drexel Autism Institute and found that less than a third of the most popular autism-related content included correct information and that over 40% of those videos “were completely inaccurate.” The study further noted the extent of the misinformation, stating that many egregiously inaccurate videos had been viewed close to 150 million times. While the power and reach of social media grants millions of people access to potentially valuable information, which may kick-start them on the path to recovery, it nevertheless remains vitally important that proper diagnosis is applied. Often the diagnosis process takes time and can be very complex.
DSM-5 and Complexity of Diagnosis
The DSM-5-TR (American Psychological Association, 2022) contains over 1,000 pages of text, criteria, definitions, tables, and statistics. Countless hours of research and debate underlies the wide-ranging scope of mental diagnoses enumerated in the manual. In the section entitled “Use of the Manual” the authors both describe the extensive assessment that should be performed, as well as warn readers of the dangers of “simply [checking] off the symptoms” (p. 21, 2022). Indeed, case formulation should include a detailed clinical history and a succinct summary of the social, psychological, and biological factors that may have contributed to the development of a particular mental disorder. Even after all factors have been considered, ultimately, clinical judgment is critical in determining the relative severity and significance of an individual's signs, symptoms, and diagnosis.
Despite the numerous hours of research and effort poured into the DSM-5, a review of its history proves that this resource is not perfect. While great strides have been made to make it the valuable resource it is today, forthcoming editions and revisions will face difficulty in basing future additions on empirical support as well as managing the shift from a categorial model to a dimensional model (see Maddux & Winstead, p. 100, 2016).
With many research questions left unanswered, some take the approach of advocating for the addition of a disorder to garner attention so that empirical data could be collected on the disorder, as was the case with “severe irritability in youth” (p. 101, 2016). While perhaps a worthy cause, this practice has the risk of defining a disorder that does not truly exist. As to the shift in classification, more are beginning to recognize the consistent failures of the categorical model, and therefore the DSM-5 has begun the shift toward a dimensional model. Shifting to a dimensional model will allow for a continuum of mental disorders based on severity, frequency, or intensity, and will allow clinicians to provide a richer diagnosis as well as improved pathways to treatment.
In sum, the numerous considerations that should go into a diagnosis are guided by years of clinical training, as well as countless hours of research and debate to produce the DSM-5. Even with the critiques the DSM-5 faces, this situation further underscores the importance of a proper diagnosis by trained and qualified clinicians, and self-diagnosis from watching a TikTok video is fraught with peril.
Risks and Proper Use of Self-diagnosis
Virtually anyone can access the DSM-5. While obtaining this resource is easy, its use in diagnosing a disorder requires hours of training and practice. Many people will read the DSM-5 and begin to draw conclusions that they exhibit the hallmarks of a particular disorder. They may even take the added step of sharing their story on social media. Others follow proper channels and seek an expert to determine if the disorder warrants an official diagnosis. Two major risks of self-diagnosing are definition dilution (Cassata, 2024) and perceived absolution of responsibility for one’s actions (David & Deeley, 2024). While self-diagnosis, whether through reading the DSM-5 or watching a video on social media, may be the catalyst for the individual to get the help they need, they must not stop there. They ought to consult an expert and seek professional help.
One major risk of self-diagnosis is definition dilution. This means as more untrained people improperly explain a diagnosis on social media, the viewers of those misinformed videos also jump to inaccurate conclusions. The viewers, in turn, spread the misinformation, as well as become convinced they have a particular disorder. When a viewer visits a trained clinician and hears they may have a different disorder, the patient may become upset and even believe they are being gaslit (Cassata, 2024).
Another major risk of self-diagnosis is the perception that the patient is absolved of the responsibility for seeking a cure because fundamentally the self-diagnosing patient believes the symptoms they exhibit are normal and do not constitute a disorder. David and Deeley (2024) observed that self-diagnosis stems from “grass roots movements” such as the neurodiversity movement, which seek to “[reframe] several diagnostic categories as (mere) variations of normality” and even propose that these are not disorders (p. 1057, 2024). Once this concept (that a disorder is normal) is accepted (either individually or socially), the individual could assume an attitude that “the world needs to accommodate him and ‘his autism’” and he need not search for a cure or alter his behavior in any way (p. 1058, 2024).
There is room for allowing the potential for self-diagnosis, with several caveats. If a person has sought professional help and if in the course of exploring all possibilities, the patient discovers information on social media, and most importantly, if they discuss what they’ve learned with their trained mental health provider, then perhaps social media has a place in the diagnosis process. The Internet has connected billions of people. For some who may have limited resources and time, perhaps social media content might fast-track the diagnosis process. But the importance of not succumbing to naïveté cannot be emphasized enough. The patient should always keep an open mind when consuming social media and should generally be willing to trust trained experts. Cassata (2024) interviewed a trained clinician who wisely stated, “Social media, in and of itself, is not the enemy … the real threat seems to be our unquestioning, naïve relationship to social media and our belief that diagnoses can be self-made without consulting a professional.”
Conclusion
In conclusion, with the widespread availability of online information and the broad reach of social media, self-diagnosis and sharing personal stories online have posed new challenges to clinicians, psychologists, and therapists. The diagnostic framework, including the DSM-5, is designed to create a common understanding and lexicon for psychologists and psychiatrists. It also aids in making predictions, facilitating information sharing, and guiding therapeutic practices. However, despite extensive research and debate, the DSM-5 is not perfect, which further highlights the complexity of diagnosis. Nonetheless, many unqualified and untrained individuals self-diagnose due to the ease of access to information and exposure to stories influencers share on social media. This practice has led to issues such as the dilution of diagnostic definitions and the perceived absolution of responsibility for one's actions. While there may be a space for self-diagnosis, those who go down this path should always consult professional help and always keep an open mind that the self-diagnosis may be wrong.
References
American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders, text revision (5th ed.). American Psychiatric Association.
Cassata, C. (2024, April 11). Autism: TikTok Leading People to Inaccurate Self-Diagnosis (J. Peeples & J. Seladi-Schulman, Eds.). Healthline. https://www.healthline.com/health-news/autism-self-diagnosis-tiktok
David, A. S., & Deeley, Q. (2024). Dangers of self-diagnosis in neuropsychiatry. Psychological Medicine, 54(6), 1057-1060. https://doi.org/10.1017/S0033291724000308
Maddux, J. E., & Winstead, B. A. (2016). Psychopathology : Foundations For A Contemporary Understanding (4th ed.). Routledge/Taylor & Francis Group.
The Project. (2022, December 6). Dr TikTok: People Using TikTok To Self-Diagnose Neurodivergent Conditions Such As ADHD Or Autism. Www.youtube.com. https://www.youtube.com/watch?v=qhx7PnHZ7cY&ab_channel=TheProject
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