The Appeal, and the Peril, of Self-Diagnosis
A serious risk, even if "official" diagnoses are often flawed.
Posted September 7, 2022 | Reviewed by Vanessa Lancaster
- The so-called “self-diagnosis” of mental health conditions, such as ADHD and DID, is an influential trend among young people on social media.
- “Diagnosis,” however, is a misleading concept because it implies that in labeling their experience, lay people are engaged in medical practice.
- In cultural spaces like social media, diagnostic categories are freed from medical control and the implications of psychiatric disorders.
So-called self-diagnosis of mental health conditions is a growing trend among young Americans. The explosion of user-generated content on social media platforms like TikTok and Instagram encouraging identification with a disorder is widely documented. For instance, hashtags on TikTok in 2021 include 2.7 billion views for ADHD (attention deficit hyperactivity disorder), 2.5 billion for Tourette's, and 1.5 billion for DID (dissociative identity disorder).
Clinicians have reported spikes in these conditions and others, such as obsessive compulsive disorder, autism, and borderline personality disorder.
Personal experience videos appear to be the most influential. In these short recordings, creators share their struggle with a condition, demonstrate or identify symptoms, explain how a diagnosis brought an epiphany of self-understanding, recount the steps they are taking to address the problem, and the like. A recent study reported that of the 100 most popular ADHD videos on TikTok, the highest engagement was with personal experience videos, averaging nearly 3.9 million views each. An earlier study of ADHD videos on YouTube found the highest number of “likes” for personal experience stories.
People I have interviewed over the years often speak in terms of “self-diagnosis.” They refer to Google searches, newspaper and magazine articles, talks with friends and family, and pharmaceutical advertisements as sources of stories and ideas about particular disorders that resonated with them and persuaded them that they suffered from a particular condition. Most then sought professional help.
Although calling this identification a “self-diagnosis” is common practice, it is misleading. For one, a “diagnosis” is a conclusion that follows a medical examination by a qualified professional. Lay people may apply psychiatric labels to their experience before or even in the absence of any professional consultation, but those labels have no formal standing. That’s why, when writing about “self-diagnosis,” authors are forced to contrast it with an “official" diagnosis—that is, one made by a doctor or nurse practitioner and carrying medical, and legal, authority.
Of course, patients contribute to a diagnosis by initiating the medical consultation and presenting symptoms for consideration. They may even play a role in negotiating the diagnosis. But at the end of the day, they cannot diagnose themselves. Confusion in this regard may be one reason why people who have given themselves a diagnostic label often get angry or change doctors when the clinician does not concur.
More importantly, “self-diagnosis” is misleading because it implies that in labeling experience, lay people and doctors are both, and similarly, engaged in a medical practice. Doctors are not my focus here, but it is worth noting that their “official” diagnoses are also often flawed. Studies show that many professionals make diagnoses based on reports of distress without regard for the diagnostic criteria in the Diagnostic and Statistical Manual of Mental Disorders (DSM). The most comprehensive epidemiological study of mental health to date, for instance, found that in only half of treated cases of “mental disorder” did the person being diagnosed meet even the minimal diagnostic criteria. What doctors are doing in such cases hardly seems properly medical if medical means treating a disorder.
In the case of lay people, what are those who label themselves identifying with? Between the representations of disorders that people encounter in popular sources, on the one hand, and official medical discourse—as presented, for instance, in the DSM—on the other, there is a considerable gap.
Media and commercial representations, as many studies have found, do not reproduce clinical meanings. An egregious example is a user-produced video mentioned in the TikTok study. It listed “anxiety shivers,” “random noise making,” and “being competitive” as symptoms of ADHD. None appear in the DSM. This sort of symptom inflation is common.
The widespread popularization of disorders has made them virtual “floating signifiers” for all manner of troublesome, frustrating, and disappointing experiences, from poor performance at work or school to feelings of being beleaguered and overwhelmed by all one has to do. Often enough, it is fair to say, the everyday distress, role conflicts, and lifestyle issues that motivate the personal appropriation of these categories have little to do with a mental disorder.
Consider how people talk about the conditions they use to articulate and explain their struggles and identities. Interviewees in my study did not treat their self-labeled conditions as having objective, predefined medical meanings on the model of afflictions like diabetes or heart disease. Rather, they defined the conditions in their own self-referential terms, flexibly fitting a definition to their own way of thinking about the meaning of their experience and their self-identity. Almost always, they adapted the diagnostic categories to leave out the undesirable connotations of mental illness and include the need for medication.
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One interviewee, whom I’ll call Helen, labeled her experience “depression” after her online research and discussion with a friend led her to view depression as a spectrum of bad feelings. She learned, she said, that there are “many different states of depression,” ranging from:
... just in a bad mood type of thing, to can’t get out of bed, can’t sleep anymore, don’t have any interest in your family, and on down the line to the point where you attempt suicide, or [have] suicidal thoughts.
Along this continuum, she situated herself on the mild end and distinguished what she was dealing with from a mental disorder.
At the same time, Helen embraced this “depression” framing to explain her exhaustion and unhappiness with her job. She went to the doctor and, like many others, reported that her aim was not so much to receive a diagnosis as to get a confirmation for the “depression” she had already come to identify with and to get a prescription for the medication she already believed she needed. In this, Helen was successful.
People like Helen are not playing doctor. They are operating in a cultural space fostered by the lifestyle promises of pharmaceutical ads and now taken up by others, including influencers on social media. This space is outside the jurisdiction and formal control of medicine. In it, diagnostic categories are freed from their psychiatric context as disorders. They are made available for self-identification to serve many purposes, both symbolic (accounting for struggles, easing a sense of responsibility, gaining a community, etc.) and practical, especially as help in gaining access to medication.
Rather than self-diagnosis, personal “appropriation” might be the more accurate term for this growing practice.
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