Self-Diagnosis of Mental Disorders

• (i) What are the perceived benefits and harms of self-diagnosing with a mental disorder?

• (ii) In what way might people have different attitudes toward self-diagnosis in adolescents compared to adults?

• (iii) What factors are believed to contribute to someone self-diagnosing with a mental disorder?

Ethical Considerations

Ethical approval was obtained through the authors’ divisional ethics committee. Ethical considerations were informed by existing guidelines for using internet-based data in research (Adams, 2024^; Hewson & Buchanan, 2021^; Markham & Buchanan, 2012). Informed consent was not obtained because Reddit users are anonymous, but this is widely considered acceptable because Reddit is a public website where there is likely to be no perception and/or expectation of privacy (British Psychological Society, 2021). Despite this, we took a number of steps to protect user anonymity and maintain ethical integrity. First, we collected data from publicly accessible, moderated subreddits with no statement prohibiting the use of their content for academic research. Second, in line with a similar previous study, we only included subreddits with a minimum of 1000 members, as users in these forums would likely consider posts within this context to be more public than private in nature, and we collected Reddit data that was at least 1 month old to give moderators time to identify and remove any personal information (Dixon‐Ward & Chan, 2022). Third, following existing guidance (McDermott et al., 2013), we cleaned the data by replacing usernames with participant numbers and removing dates of comments, subreddit links, and titles. Finally, we paraphrased quotes that appear in this paper with the aim of capturing the meaning of the comment without it being traceable to the original user via a search engine (Reagle, 2022). We entered all presented quotes into an online search engine and Reddit to confirm that we could not trace them back to their original source.

Data Collection Procedure

Comments were obtained from three subreddits on relevant topics (unnamed to preserve anonymity) and a fourth search using the general Reddit search function. In each location, searches were conducted for the terms “self-diagnosis” and “self-diagnosing” individually. The Reddit search filter was set to display threads that were created within the past year. Threads were manually filtered based on the following inclusion criteria: (i) written in English, (ii) posted on moderated, public subreddits with a minimum of 1000 members, (iii) posted between July 2022 and June 2023 (i.e., in the 12 months preceding data collection), (iv) posted within a thread of at least five comments, and (v) discussed self-diagnosis in the context of “mental illness,” “mental health,” or a specified mental disorder (e.g., anxiety and dissociative identity disorder). For threads exceeding 100 comments, only the first 100 comments were analyzed (this number was selected for pragmatic reasons, to capture an appropriate depth and breadth of responses within and across threads without generating an unwieldy dataset; this kind of pragmatic decision regarding sample size is typical in large-scale qualitative research (Braun et al., 2021).

The exclusion criteria were as follows: (i) comments including an external link, article, picture, or video, (ii) comments with fewer than 10 words, (iii) comments from an automoderator (a Reddit bot that enforces community guidelines) or deleted user (N.B. if the deleted user created the original post in the thread, then only subsequent comments were analyzed), (iv) comments that discussed self-diagnosis only in relation to neurodevelopmental conditions (e.g., ADHD or autism) and/or physical health conditions (including functional neurological disorders and Tourette’s), and (v) comments from subreddits prohibiting the inclusion of its content in academic research. Comments related to neurodevelopmental conditions and physical health conditions were excluded due to conceptual reasons: it is likely that there are different factors associated with self-diagnosis for these individuals, particularly with regard to the benefit of understanding one’s long-term identity via the self-diagnosis of neurodevelopmental conditions, that require separate study (Overton et al., 2023). We therefore chose to explore only self-diagnosis of mental disorders in this study to keep our research questions sufficiently focused (Koro-Ljungberg & Hayes, 2010).

For each search, all threads were analyzed after taking into account the inclusion/exclusion criteria above. If there were more than 50 threads for a given search, only the first 50 threads were analyzed. This was again done for pragmatic reasons, in terms of achieving an appropriately rich dataset that was not unwieldy to analyze (Braun et al., 2021). This yielded 87 threads, with a total of 2247 user comments (a combination of first posts and subsequent responses). Using the RedditExtractoR package within R (Rivera, 2023), the data from these threads were scraped from Reddit’s application programming interface (API) into an Excel spreadsheet. For each thread, the number of scraped comments was manually checked against the number of original comments on Reddit to reduce the risk of missing data, which has been observed in previous studies that used similar computational methods to collect Reddit data (Gaffney & Matias, 2018). The scraped comments were then manually checked in line with the inclusion/exclusion criteria, and the entire dataset was cleaned to protect anonymity. The final dataset consisted of 87 threads with a combined total of 1195 comments and first posts from 813 contributors. The mean word count for all included comments and first posts was 83.55 words (SD = 116.25, range = 10–2367).

Analysis Strategy

The data was analyzed using reflexive thematic analysis, a qualitative approach that enables researchers to identify shared patterns of meaning (e.g., understandings, perceptions, and views) within a dataset. Reflexive thematic analysis views researchers as active agents who bring their experiences, values, and mannerisms to the research process (Braun & Clarke, 2019^; Varpio et al., 2017). When acknowledged by a reflexive researcher, these qualities promote rich and thoughtful engagement with the data (Terry et al., 2017).

We used a combined inductive–deductive approach, involving analysis that was primarily data-driven but partly guided by existing conceptual ideas regarding the self-diagnosis of mental disorders (Braun & Clarke, 2022^; Byrne, 2022). Additionally, we took a critical realist stance to analysis. Critical realism describes the position that a person’s knowledge and how they express it is inevitably affected by and constructed through their language and socio-cultural context, but that there are also underlying structures and phenomena that exist in the outside world that shape their knowledge (Willig, 2008). Thus, we consider that a person’s experiences and opinions, including those shared in Reddit forums, are subjective but also grounded in real social and material circumstances (such as access to healthcare or exposure to social media). This critical realist stance has shaped our thematic analysis, in which we consider the wider social context as well as the specific experiences and attitudes expressed by users.

Reflexivity Statement

Reflexivity involves examining how researchers’ experiences and values shape how knowledge is created from the data (Willig, 2008). Both authors have experienced chronic medically unexplained physical health symptoms and acknowledge that this has contributed to a sense of understanding as to why people might self-diagnose and an interest in its possible benefits and harms to the individual. Author 1 has also worked in a clinical health psychology service, where she became particularly interested in the impact that language use may have on a person’s well-being. Author 2’s research program focuses on understanding the recent increase in adolescent mental health problems, and she is particularly interested in understanding how increased mental health awareness, including on social media, has impacted individuals’ understanding of their mental health. Both authors acknowledge that these personal and professional experiences have likely shaped their interpretation of the data and informed the analysis presented here.

Analytical Procedure

Reflexive thematic analysis was conducted, following Braun and Clarke’s six-phase approach (Braun & Clarke, 2006^, 2019). NVivo version 14 was used to support the analysis (Lumivero, 2023). To support reflexivity, author 1 kept a reflective journal (see Supplemental materials 1). Author 1 led the analysis, but both authors engaged in crystallization together to deepen her understanding and interpretation of the data and wider research area, and to support credible findings (Ellingson, 2008^; Tracy, 2010) (see Supplemental materials 1).

In the first phase defined by Braun and Clarke, data familiarization, author 1 read through the entire dataset during the cleaning process and noted possible patterns in her reflexive journal (see Supplemental materials 1; Braun & Clarke, 2006). To begin the second phase, coding, the authors initially independently coded the same randomly selected 10% of the dataset and discussed this together during a crystallization meeting. During this meeting, both authors shared early thoughts about potentially important ideas in the data. For example, it was discussed how “fake” self-diagnosis could be understood in two ways, either as being deliberately fake (i.e., pretending to have a mental disorder) or deluded (i.e., mistaking sub-clinical levels of distress as disorder) and how users typically did not clarify how they distinguished these two (see Supplemental materials 1). At the end of this crystallization process, author 1 had a list of 220 codes.

Building on these initial codes, author 1 then generated codes for the remainder of the dataset. Data was coded primarily at a semantic level (i.e., focused on explicit, surface-level meaning rather than possible underlying concepts or implied meaning). At the end of this phase, there were 450 codes. The authors then had a second crystallization meeting to discuss these 450 preliminary codes. After this meeting, author 1 carried out several steps to produce a more manageable number of codes for the next phase of analysis; similar codes were collated, duplicate codes were merged, and some codes were discarded because they were associated with shallow, sparse data. These steps reduced the 450 preliminary codes to a list of 90 codes (see Supplemental materials 2) and, based on these 90 codes, author 1 began the third phase of analysis, theme generation. Five preliminary themes were generated (see Supplemental materials 1).

During the fourth and fifth phases, reviewing themes and defining and naming themes, the authors had a third crystallization meeting. Discussion centered around the coherence of the themes in relation to the codes and the entire dataset, and selecting names that best reflected the narrative of each theme (see Supplemental materials 3). The five final themes are described in more detail below.

Theme 1: There is Tension Over Who is the Expert in Diagnosis

In these Reddit forums, there was considerable disagreement about who has the expertise to diagnose mental disorders: the professionally trained clinician or the person experiencing the symptoms. This led to conflicting opinions over the acceptability of self-diagnosis. Most commonly, people viewed clinicians as the experts in diagnosis, and therefore any attempts to self-diagnose were seen as inevitably inaccurate, flawed, or biased. For these individuals, clinicians were considered the only legitimate route to diagnosis because of the complex professional knowledge required:

It’s essential that clinicians diagnose. Diagnostic criteria need to be considered alongside lots of factors, including levels of distress and interference with daily life.

This complex professional expertise was contrasted with self-diagnosis via the internet, which was presented as sub-standard and rife with misinformation. The external opinion offered by clinicians was also considered an essential aspect of diagnosis: people reported that “even clinicians” should not self-diagnose because an outside perspective provides the necessary, objective opinion to mitigate bias. Indeed, people reported that self-diagnosis is susceptible to confirmation bias, where people interpret their symptoms in a way that confirms their existing beliefs:

You might find yourself interpreting behaviours as symptoms of the disorder you believe you have.

These individuals therefore argued that self-diagnosis was acceptable only as a transitory theory before clinical judgment was sought. This group argued that since clinicians are the experts in diagnosis, self-diagnosis should be discussed using tentative language only; for example, one user wrote, “It’s okay to say I think I have X, but you can’t say I have X until you have a clinical diagnosis.” Some people even argued that “self-speculation” and “self-suspecting” are more appropriate terms than self-diagnosis, implying that diagnosis is a protected, exclusive concept and that the power to diagnose resides in a clinician only.

In contrast, other Reddit users argued that the individual themselves has the necessary knowledge to self-diagnose and that therefore this process is entirely reasonable and acceptable. Indeed, several people argued that a clinical diagnosis of a mental disorder is based on an individual’s self-reported symptoms anyway, and that mental disorders are therefore “inherently self-diagnosed.” Since diagnostic criteria are widely available online, they believed that self-diagnosis is entirely logical and reasonable:

A doctor can’t look at you and say you are depressed. They can only ask you questions that you can already ask yourself.

Taking this further, some people argued that self-diagnosis is not only reasonable but also recommended. These users found it illogical that they would need a clinical diagnosis because they considered themselves to be the experts of their own experience and believed that they (and only they) have the self-insight required to make the most accurate diagnosis:

Simply read up on different disorders … you have the best understanding of yourself.

Another group acknowledged both sides of this tension and believed that ultimately clinicians and the individual themselves are both experts, both “useful pieces of the puzzle.” Given this, collaboration was believed to lead to the most accurate diagnosis. Ultimately, these users believed that while individuals can provide expert insight into their own experiences, this should be considered alongside clinical expertise for the most accurate diagnosis:

You have the most insight into yourself, but a clinician has the most insight into how to diagnose, so it makes sense to collaborate.

In summary, most users believed that diagnosis of mental disorders requires at least some clinical involvement and therefore self-diagnosis is acceptable only as a transitory theory before professional assessment. However, the disagreement from others (who believed that the necessary expertise lies in the individual experiencing symptoms) highlights that self-diagnosis is a contentious topic and that anyone attempting to self-diagnosis is likely to be met with at least some skepticism about whether their description is accurate or valid.

Theme 2: Self-Diagnosis is a Route to Self-Understanding in an Inaccessible System

This theme highlights that some users felt self-diagnosis is understandable and unavoidable within the context of an inaccessible healthcare system. Two main barriers to accessing professional help were identified: high cost and long wait-times. Financial barriers were commonly discussed with reference to countries without government-funded healthcare systems, where individuals have to pay for healthcare insurance or services. People acknowledged that this can make getting a clinical assessment particularly challenging, and even impossible. More generally, long wait-times were also discussed; users commonly described having to wait several years until assessment. In light of these barriers, having the chance to be assessed and diagnosed by a clinician was viewed as a “privilege,” highlighting that while this is desirable, it is out of reach for many—and that self-diagnosis is therefore the only option for a person trying to understand and manage their distress:

Healthcare is incredibly hard to access for so many people, so if someone can recognise symptoms of for example depression, and use that to find coping strategies then that can be better than nothing.

Within this context, users acknowledged that self-diagnosis is understandable because it is challenging to live with uncertainty surrounding the nature of one’s own distress. Several users with a clinical diagnosis remembered this challenge and explained that, while waiting to see a clinician, self-diagnosis is often a desperate attempt to make sense of distress and gain some relief. However, even for these users, there was an overriding sense that self-diagnosis was acceptable only when there was no alternative, and ideally should happen only on a temporary basis. In line with Theme 1, users who were supportive toward self-diagnosis still said that ideally this should be a transitory step before finally getting professional help:

I was in a nightmare for years thinking there was something was wrong with me, until I found validation through self-diagnosis, before getting a clinical diagnosis.

Theme 3: Teenagers on Social Media are the Problem

Individuals deemed to have self-diagnosed outside of these accepted boundaries were often heavily criticized by Reddit users. Theme 3 highlights that the most marked of this criticism tended to be targeted toward teenagers, particularly teenagers believed to have inappropriately self-diagnosed based on social media. Two types of inappropriate self-diagnosis were discussed: those who mistake low-level distress as disorder and those who intentionally deceive others by pretending to have a disorder. Although users made a distinction between these two groups, there was no detail about the process informing this.

With regard to the first type, users commented that low-level, transient distress is often being mistakenly self-diagnosed as a mental disorder (“People are confusing regular human emotions like stress or sadness with mental illnesses”). This type of inaccurate self-diagnosis was often discussed with frustration and anger.

Personality disorders are complex as f**k. I swear to God these kids think borderline personality disorder is having mood swings and a crush.

However, despite negative attitudes toward this behavior, there were conflicting attitudes toward whether this behavior is truly young people’s “fault.” There was recognition that this excessive self-diagnosis happens precisely because of young people’s developmental stage—specifically the emotional fluctuations associated with pubertal hormones and brain development in adolescence. Yet, identifying adolescent biology as the explanation for self-diagnosis also came with dismissive language—users commented that apparent symptoms are “probably just hormonal changes during puberty” or due to ongoing brain development. Thus, users seemed to use developmental explanations to be sympathetic and understanding toward teenagers who engage in inappropriate self-diagnosis, while in parallel using the same explanations to dismiss and disregard their distress.

Similarly, there was a recognition that while social media use contributes to inappropriate self-diagnosis in young people, this is not entirely their fault. Some users were clearly critical of how young people interpret the information they see online, particularly posts that encourage individuals to identify symptoms in themselves, with one user stating, “everyone under 30 thinks they can diagnose themselves now.” However, it was acknowledged that people make sense of their mental health using the language available to them—and misinformation on social media was believed to drive adolescents to misinterpret low-level distress as disorder.

Posts about mental health that acknowledge their difficulties … with vague or even incorrect information … social media blurred the line between struggles and illness.

There was also a sense that the combination of adolescent development and social media use makes young people particularly vulnerable to self-diagnosis. For example, some users suggested that ongoing brain development in adolescence makes it difficult for young people to understand the wealth of information online and the difference between transient distress and mental illness; others recognized that adolescents’ greater sensitivity to social influence makes them particularly likely to adopt the diagnostic language they see online. Again, the tone of posts seemed to indicate that while self-diagnosis may be understandable in light of misinformation on social media and the way this interacts with adolescent development, it is still likely to be inaccurate and therefore inappropriate.

Separately, users believed that some young people are engaging in a second form of inappropriate self-diagnosis: that of actively pretending to have mental disorders. This was identified by users explicitly writing that they thought people who self-diagnose were doing so intentionally, for example, by “lying for attention” or “role playing for fun.” This was typically viewed as an attempt to gain social status and establish an identity. Indeed, a wide range of terms were used to suggest that mental disorders have become attractive and socially desirable to some young people: “cool,” “trendy,” “quirky,” “special,” “a fashion accessory,” and “ticket into a club.” This form of inaccurate self-diagnosis was met with more explicitly negative attitudes. Some people held extremely strong negative opinions toward adolescents engaging in this practice, frequently swearing, implying that it is inexcusable:

They think that shit makes them quirky or interesting. It’s annoying as hell.

Much of this criticism was targeted toward dissociative identity disorder (DID). Specifically, users believed that adolescents may deliberately label themselves with DID as a way to explore different aspects of their identity through “roleplay” and gain peer validation. These motivations were typically linked to two adolescent-specific factors: identity development and increased sensitivity to peer pressure. Users believed that this behavior typically occurred within, and was motivated by, online communities, namely, TikTok and Discord. There was concern that this experimentation with identities had become a competition among groups of teenagers with individuals attempting to improve upon their peers’ diagnoses to gain social status:

There’s a huge competition amongst adolescents at the moment as to who has the most severe disorder. DID sits at the top.

In sum, users believed that adolescents in particular are often self-diagnosing in an inappropriate way and that social media and factors specific to adolescence contribute to this behavior.

Theme 4: Self-Diagnosis can Become Self-Fulfilling

This theme explores the harmful impact that self-diagnosis of mental disorders may have on the individual who self-diagnoses. Typically, these attitudes were targeted toward individuals who inaccurately self-diagnosed (i.e., those who mislabelled milder forms of distress) but sometimes related to anyone who self-diagnosed. Users acknowledged that diagnostic language is powerful; the phrase “heavy label” was used implying that this language can have a significant influence over the way we perceive ourselves and our experience. Specifically, several users discussed the possibility that self-diagnosis can become a self-fulfilling prophecy, by triggering a change in thoughts, feelings, and/or behavior that ultimately increases distress or other symptoms. For example, some users wrote that self-diagnosis can “destroy” a person’s self-esteem, or can generate or exacerbate symptoms such as dissociation. One user referred to the damaging effect of self-diagnosis on their mental health as “auto-sabotage.” Additionally, an adolescent user (who gave their age in their comment) described their experience of pretending to have DID and outlines how the behavioral change that followed this had a wide-ranging negative impact on their mental health, education, and social life:

Over time, I stopped roleplaying characters everywhere and I genuinely believed I had DID. My social and academic life fell apart, and I felt empty.

Several users discussed how, once someone had adopted a self-diagnosis, the pathway to increased distress or other symptoms could happen very rapidly and was difficult to control. There was a sense that once someone had started down this path, sometimes described as a “rabbit hole,” it was almost impossible to turn back:

It’s so easy to inaccurately self-diagnose and this can have devastating long-term effects—you can unintentionally mindf**k yourself into having symptoms.

In sum, users highlighted that the language we use to understand our mental health has great importance; they believed that the way we define our experiences shapes our reality, and therefore self-diagnosing with a mental disorder can change an individual’s thoughts, feelings, and behavior in a destructive way that leads the diagnosis to become self-fulfilling.

Theme 5: Now No One is Believed

Many users described how they have negative attitudes toward self-diagnosis because they believe it to be harmful for others. Specifically, users discussed how the “epidemic” of inaccurate self-diagnosis means that anyone claiming to have a mental disorder is now not being taken seriously. Users discussed how inaccurate self-diagnosis is misleadingly presenting mental disorders as either “cute or fun” or associated with transient, low-level distress, and this was seen to increase public misunderstanding of the severity of mental disorders by diluting or making light of it. The underlying assumption seemed to be that the increase in self-diagnosis was due to people wrongly labelling milder distress as a mental disorder and in turn shifting the public perception of mental disorder to the milder end of the symptom spectrum. Users with a clinical diagnosis described this misrepresentation as “exhausting,” “agitating,” and “horribly invalidating.” They highlighted that the “influx” of inaccurate self-diagnosis can make living with a mental disorder even more challenging and distressing, by undermining their own experiences:

People tend to dismiss my debilitating anxiety and depression because everyone has these disorders and they’re all fine.

In light of this misrepresentation, this group commented that it is hard to find support from others in a similar position because relevant online communities feel saturated with people identifying with disorders they do not have. As a result, users with clinical diagnoses described feeling misunderstood and invalidated even in spaces where they had hoped to find recognition and support.

However, the concern about being invalidated does not only involve those who are clinically diagnosed. Users also highlighted that self-diagnosing individuals are not being taken seriously, even when they should be. Indeed, some people seemed to assume that because self-diagnosis can be inaccurate, every self-diagnosis is inaccurate, which echoes attitudes highlighted in Theme 1. This generalization was conveyed through references to self-diagnosis being “completely invalid” and wrong in all cases. One user suggested that “all the self-diagnosers inevitably perform their disorders.” This group believed that since self-diagnosis is always wrong, self-diagnosis indicates that the person is a liar and that “the necessary response is social rejection.” In response to this, several users appeared to internalize others’ skepticism toward self-diagnosis, apologizing for appearing to self-diagnose and doubting the credibility of their own distress. In some cases, this prevented them from seeking professional support:

People dismissing self-diagnosis made me doubt myself. It took ages for me to feel brave enough to see a clinician because people kept saying “you aren’t anxious.”

This suggests that failing to take self-diagnosis seriously risks overlooking individuals who are struggling with their mental health, whether they have a mental disorder that is currently undiagnosed or are experiencing sub-clinical levels of distress that warrants support. Several users implied that even individuals who might be deliberately faking a mental disorder are all too often dismissed and that, while their self-diagnosis may be inaccurate, they too are often experiencing some level of distress that should be acknowledged and taken seriously. Thus, ironically, a consequence of increased self-diagnosis (i.e., an attempt to understand and communicate one’s distress) seems to be that many people in distress are now not being validated or believed. Ultimately, the narrative of this theme implies that psychiatric language should be reserved for those who really need it, but all levels of distress should be acknowledged and supported.

Together, the five themes highlight the complexity of the attitudes that people hold about self-diagnosis of mental disorder and contributed meaningful answers to our three research questions. With regard to our first question, about the perceived benefits and harms of self-diagnosis, our analysis indicated that self-diagnosis is considered to be both a powerful, helpful means of understanding and communicating one’s distress, and a risky practice that can lead to self-fulfilling prophecies and the undermining of other people’s difficulties. Our second question examined the possible differences in attitudes toward adults and adolescents who self-diagnose, and our analysis indicated that there were particularly aggressive, dismissive attitudes toward adolescents engaging in self-diagnosis, with the commonly held belief that they are self-diagnosing inappropriately due to a combination of factors related to social media and ongoing psychological development. Our third and final question, about what factors people believe lead to self-diagnosis, was answered across the analysis: Reddit users believed many factors are relevant, including practical necessity (lack of professional support), a desire to understand oneself, a need to cope, or a deceptive desire to gain attention from others. Ultimately, the attitudes presented here reveal a frequently hostile climate for anyone who attempts to diagnosis themselves with a mental disorder.