The tic in TikTok and (where) all systems go: Mass social media induced illness and Munchausen’s by internet as explanatory models for social media associated abnormal illness behavior

Abstract

This paper explores the recent phenomenon of adolescents presenting en masse (both online and in clinical settings) with symptoms seemingly acquired from viewing illness-related content posted by social media influencers. The most frequently reproduced illnesses have included Dissociative Identity Disorder (DID) and Tourette Syndrome. It discusses evidence that the recent spate of new-onset, severe tics are a form of Mass Psychogenic Illness facilitated by social media networks (a phenomenon labeled Mass Social Media Induced Illness). It then suggests that many of those self-diagnosed with DID may be manifesting a similar, technologically-facilitated conversion phenomenon. It then explores another explanatory model: that these simulacra of DID and Tourette Syndrome may also arise via a mechanism more closely resembling social media facilitated Factitious Disorder. Similar presentations, of individuals falsifying cancer, have previously been labeled Munchausen’s by Internet. It then proposes an overarching construct, Social Media Associated Abnormal Illness Behavior (SMAAIB), that is agnostic regarding phenomenology. Within this framework, it explores the ways in which de-commodifying attention, connection and care (measured once in appointments and admissions, now in ‘likes’ and ‘shares’) and obtaining a full picture of the patient’s psychological, sociological and cultural grounding can offer deeper understanding and ultimately a path to wellness.

Keywords

Factitious disorder internet conversion disorder social media dissociative identity disorder TikTok Munchausen’s by internet mass social media induced illness

Introduction

Mass Psychogenic Illness is a form of conversion disorder that spreads rapidly in cohesive social groups and has been recognized for centuries (Bartholomew & Wessely, 2002; Wessely, 1987). In the last two decades, the Internet has enabled spread of such symptoms among people who have never met, but who share a digitally-enhanced sense of belonging (Bartholomew et al., 2012). In the context of the COVID-19 pandemic and associated drastic increase in screen time, numerous clinicians have noted the spread of what appear to be functional tics, and labeled these either “TikTok Tics” or “Mass Social Media Induced Illness” (Olvera et al., 2021; Müller-Vahl et al., 2021). There has been a similar trend in presentations with reports of Dissociative Identity Disorder (DID) among individuals who have viewed online content related to this diagnosis (Lucas, 2021; Shepherd, 2021). While it is possible that these are all conversion phenomena, there is also some evidence—though thus far only explicated in the lay press--that these may be deliberately manufactured, or a form of factitious disorder (Brown, 2021; Shepherd, 2021). Similar online presentations of falsified physical illness have previously been labeled Munchausens By Internet, a title we suggest applies here as well (Feldman, 2000). Treating this phenomenon involves understanding the motivations for assuming symptoms—whether with conscious intent or no. We suggest Social Media Associated Abnormal Illness Behavior (SMAAIB) as an overarching construct to capture both voluntary and involuntary production of such symptoms that is psychologically driven.

Case presentation

Ginger is a 16 year old girl you have been following monthly since age 8, when she began therapy and fluoxetine to address social anxiety and school refusal. Today she presents for a followup appointment. While now attending school regularly, she is on social media nearly all of the time she is not in school.

When you speak with Ginger alone she tells you, “I think you should know, we have Dissociative Identity Disorder. There are 33 of us in the system. This is Ace, the protector, talking to you. I’m a 20-year-old asexual man. But there’s also Rebel, our gatekeeper, who’s 17. Baby is a trauma holder, she can’t talk...”

Ginger’s mother affirms the patient has been using this vocabulary with her as well, and viewing posts with hashtags like #system and #dissociativeidentitydisorder. Ginger has also begun posting about her “system” on Tiktok. In one video she beams at the camera, “Hi, I’m Ginger, the host!” then drops her head only to pop back up again sucking her thumb (a caption reads “I’m Baby”), then showing a sneering face (captioned “Rebel”). Another post is text-only: “I’m switching so often that I’m failing math—Rebel came out while we were taking a test and he doesn’t pay attention so we failed.” Ginger’s mother denies seeing any of the ‘switching’ Ginger describes, adamantly denies any history of trauma (which you have also never heard of in the long course of her treatment), and denies any failed tests.

“Is she just making this up?” Ginger’s mother asks. “Is this real? Did she catch this online somehow?”

Footnote: This case is not based on any single patient seen at the author’s clinic, but rather a fictional case based on common presentations of this type.

Mass psychogenic illness goes online: Conversion.com

Our search for an explanation for Ginger’s presentation begins with a phenomenon documented for centuries: Mass Psychogenic Illness. A form of conversion disorder, it involves the “rapid spread of illness signs or symptoms affecting members of a cohesive group, originating from a nervous system disturbance...whereby physical complaints that are exhibited unconsciously have no corresponding organic etiology” (Bartholomew & Wessely, 2002, p. 300). Historically, sufferers blamed toxins or evil spirits; awareness of illness in others with whom one socially identifies is the trigger in Bartholomew and Wessely’s (2002) modern model. Wessely (1987) differentiates between “mass anxiety” and “mass motor hysteria” subtypes, the latter marked by motor symptoms spreading among individuals in stressful environments.

Once, Mass Psychogenic Illness occurred only in geographically distinct clusters. “Motor hysteria” outbreaks occurred in strict German schools during the late 19th century: students developed tremor and agraphia during school hours but were unaffected during gymnastics classes or at home. Consistent with later, similar epidemics, spread was from higher-status ‘index cases’ and occurred within the confines of (geographically limited) social networks (Bartholomew & Wessely, 2002; Wessely, 1987). Sufferers were overwhelmingly young and female. Recent case–control studies show associations between trauma history and hypnotizability—a proxy for suggestibility—and susceptibility to Mass Psychogenic Illness (Bartholomew & Wessely, 2002; Sapkota et al., 2020). With the development of mass media, however, such epidemics began to spread without physical proximity. This was first widely noted in the context of “motor hysteria” among a group of high school girls in LeRoy, New York in 2011. Videos and news stories of affected girls’ tics, slurred speech and astasia/abasia circulated widely. Individuals who viewed the girls’ movements online then posted videos or descriptions of themselves experiencing nearly identical symptoms. As a neurologist associated with this case stated in Bartholomew et al.’s (2012) study, “One individual posts something, then the next person who posts something not only are the movements bizarre and not consistent with known movement disorders, but it’s the same kind of movements. This mimicry goes on with Facebook.”

Recently Müller Vahl et al. (2021) described a similar phenomenon, christened Mass Social-Media Induced Illness (MSMI). It, too, involved social-media driven transmission from a high-status index case, but within social networks spanning continents (Müller-Vahl et al., 2021; Olvera et al., 2021). The proposed “virtual index case” is a popular German Youtube influencer who posts extensively about his Tourette Syndrome. Like cases within the Leroy cluster, viewers saw his, or other videos inspired by his experience. They then exhibited movements and vocalizations that were similar, but more bizarre, and inconsistent with Tourette Syndrome. In some cases the similarities were striking. Olvera et al.’s (2021) study of individuals posting about their tics on TikTok in March 2021 found 53% had a vocal tic of saying ‘beans’ (even non-English speakers; after review of many videos the research team found this is a vocal tic of an extremely popular British Youtuber). Movements were more extreme—complex and destructive (like throwing items), copropraxic, more frequent, and more numerous in type than typical for Tourette Syndrome (Müller-Vahl et al., 2021; Olvera et al., 2021). This is the digital heir of the “mass motor hysteria” subtype of mass psychogenic illness—and it is spreading.

A growing trend, and growing doubts

The COVID-19 pandemic and subsequent lockdowns dramatically increased U.S. adolescents’ time online, in one study reaching almost 8 hours per day (Nagata et al., 2021). Much of that time was spent on social media: in Fall 2020, 69% of US adolescents used TikTok at least once a month and in 2021 Oberlo reported 90% of TikTok users log in at least daily (Mohsin, 2021). Just as Müller-Vahl et al. (2021) found a relationship between “virtual index cases” and purported MSMI Tourette Syndrome in Europe, it seems a DID variant of MSMI is on the rise in the United States. Across the United States, psychiatrists and psychologists have noted dramatic increases in presentations like Ginger’s. In our own clinic, prior to 2021, there were no such cases. In January they began appearing, and in September 2021 alone we saw as many as in the previous 6 months. Some individuals were already in care but disclosed new-onset DID concerns, while others presented for the first time with “Dissociative Identity Disorder” as a chief complaint. Several potential “index cases” exist: handful of DID influencers have hundreds of thousands of followers, and one account has over a million. These accounts record daily the daily lives of people who purport to have dozens of alters, switching upwards of 50 times per day. Some even delineate these switches with changes of clothing, wigs, or nametags (Lucas, 2021). As of December 2021 #did had 1.3 billion views. Several videos under the #system hashtag had almost 2 million ‘likes’ as of September 2021 (Lucas, 2021). Like patients with MSMI-driven “tics,” adolescents with MSMI DID present like the influencers they follow—but with more extreme/exaggerated symptoms and an absence of subtler/less well-known symptoms or comorbidities. Many cases resemble what has been labeled “imitative” DID: “Most of the imitating behavior we observe is unconsciously motivated: these patients are truly confused about who they are. They cling to the DID model because it structures their inner world...it is not so much the general assumption of the sick role but of a specific sick role: DID.” (Draijer and Boon, 1999, p. 246)

Once an adolescent views DID content, algorithms funnel them related posts. This is the first thing users see on their individualized landing page: the For You page, featuring videos curated for each user based on past viewing patterns. Exposure intensifies. Adolescents not only passively consume content; they create it, serving as potential secondary virtual exposures for others. A 2019 survey showed that while 68% of monthly active TikTok users watched someone else’s video, 55% uploaded their own (Mohsin, 2021).

While the MSMI model assumes this phenomenon is driven by an involuntary mechanism, popular press headlines like “My Teen is Faking a Disability on TikTok” attest to other ways of understanding presentations like Ginger’s (Brown, 2021). In this article a father writes to a parenting columnist about his child, who is posting videos on “Disability TikTok” about a disease for which neither father, nor therapist, nor pediatrician have ever seen evidence. It would be highly unusual for an organic or even conversion phenomenon to manifest solely in online posts, with no symptoms evident in everyday life. Stories like “Inside TikTok’s Booming Dissociative Identity Disorder Community,” (Lucas, 2021) and “Is Illness Appropriation TikTok’s Most Troubling New Trend?” (Shepherd, 2021) have captured growing societal concerns about such cases, raising the possibility adolescents may be volitionally reproducing symptoms.

Notably, 64% of Tiktok posters in Olvera et al.’s (2021) sample from March 2021 included some statement on their channel addressing allegations of faking—some even producing doctor’s notes as evidence. The online sphere rings with such accusations, which are then derided by the accused as “fakeclaiming” and “gatekeeping.” For good or ill, within the closed ranks of these illness communities, any action short of implicitly accepting any individual’s self-diagnosis is seen as cyberbullying (Shepherd, 2021). Even physicians questioning diagnoses are seen as invalidating or gaslighting (we will leave aside for now the view—held by many, professionals and laypeople—that ALL presentations of DID are spurious) (McHugh, 1995).

Munchausen’s by internet as alternate explanatory model

MSMI is not the sole explanatory model for such behaviors. Some presentations, like Ginger’s or the Slate letter writer’s, suggest deliberate manufacture as possibilities. Malingering means the goal is to gain some material advantage; worth considering given 64% of TikTok tic posters in Olvera’s study had merchandise for sale related to their tics, or stated they were available for paid appearances (Olvera et al., 2021). Presentations with the sole goal of increasing ‘views’ would also be considered malingering. If a poster’s motivation is to assume the sick role, Factitious Disorder is the appropriate diagnosis. Typically providers think of Munchausen’s by Proxy when considering manufactured illness in pediatric patients, but children and adolescents do feign illness themselves at rates equivalent to the adult population (Ehrlich et al., 2008). Factitious Disorder patients may falsely report diagnoses, claim symptoms that are not actually occurring, or physically induce illness or injury (Yates & Feldman, 2016; Ehrlich et al., 2008). Improbable (or impossible) presentations, particularly if they do not follow the natural history of an illness—a 16 years old with no trauma history developing dozens of wildly disparate personalities over the course of a month, for instance—suggest Factitious Disorder at least as much as MSMI. Unusual familiarity with specialized medical terminology or evidence of fabrication are similarly suggestive. Both MSMI and Factitious Disorder are more common in female patients, and both are highly comorbid with other psychiatric conditions (Müller-Vahl et al., 2021; Yates & Feldman, 2016).

“Munchausen’s by Internet” (MBI) is the online analogue of Factitious Disorder, first characterized by Dr. Marc Feldman and focused on false claims of physical illness—usually to access online support groups for cancer (Feldman, 2000). The characteristics he identified in those patients decades ago still hold true for factitious online psychiatric presentations, and could be extended to in-person behavior by those with symptoms “acquired” via online exposures (Pulman & Taylor, 2012). First, individuals with MBI frequently duplicate material from online sources like social media posts. Second, illness characteristics are often exaggerated and extreme--adolescents with long coprolalic outbursts, or Ginger’s thirty-three “alters”. Obviously falsifiable claims are a strong indicator. (Feldman, 2000).

Several features are concerning for factitious DID more specifically. Bringing “proof” of a dissociative diagnosis to consultation (or posting doctors’ notes, as in Olvera’s cohort), absence of comorbid PTSD, or telling people outside close confidants/therapists about a DID diagnosis may raise suspicions (Thomas, 2001). It is particularly notable if DID becomes a frequent topic of conversation or primary focus of relationships (Pietkiewicz et al., 2021; Thomas, 2001). Factitious or imitative presentations of DID tend to change as an individual gains information (or misinformation, since social media is rife with it) about DID (Draijer and Boon, 1999; Thomas, 2001). Individuals with factitious DID also tend to be highly dramatic (many switches, many dramatically different alters) and frequently use the DID label as an excuse for avoiding unpleasant activities or consequences (Draijer and Boon, 1999; Pietkiewicz et al., 2021). They may also show disappointment or anger—even ‘firing’ a physician--when DID is ruled out (Thomas, 2001). Note commonalities among DID posters, who ipso facto are sharing with many others and making this aspect of their lives a focus of interaction, if not an identity itself. Rapid-fire switching is frequently the topic of posts, and anyone questioning the self-diagnosis is seen as invalidating at best and abusive at worst (Shepherd, 2021).

The impact of medium

Munchausen’s by Internet (MBI) is unique from FD both in medium and audience. The online medium makes simulation easier; according to Walther’s (1996) Hyperpersonal Model of Communication, the infinite editability of online messages (including videos and photos) allows unprecedented ability to optimize the impression one makes on others. MBI sufferers generally crave care per se rather than the medical care of a doctor, and so the audience is also different. Rather than ‘performing’ illness for a physician to gain care, MBI involves performance in a broader online space. The function of such disclosure differs from the so-called dyadic disclosure that occurs between two individuals, and has been termed “broadcasting disclosure” (Bazarova & Choi, 2014). In classical self-disclosure theory, broadcasting disclosure is associated with the sharing of relatively innocuous information; however the online world allows a group of thousands to assume the intimacy of a classroom. Adolescents disclose distress or other intimate information on social media in a broadcasting context when seeking support, underestimating the risks of disclosure and overestimating intimacy (Bazarova & Choi, 2014; Zhao et al., 2021). On platforms where disclosure of mental illness is associated with greater feedback and community response, adolescents may feel the immediate emotional rewards outweigh the long-term risks (Ostendorf et al., 2020). This is particularly true among individuals like Ginger who prefer online interaction and frequently self-disclose online (Gioia & Boursier, 2021).

Both MSMI and MBI are the result of a deep desire to be ‘seen.’ Online disclosure, particularly of illness (or manufactured illness in the case of MBI), fosters a sense of intimacy that may exceed that possible in face-to-face communication (Walther, 2007; Griffith & Stein, 2021). Receivers of online disclosures may be more likely than receivers of face-to-face disclosures to attribute this to interpersonal closeness rather than other motives (Jiang et al., 2011). A sense of relational intimacy then develops more quickly online than in face-to-face interactions, with reciprocal reinforcement of greater trust/idealization and greater disclosure (Hian et al., 2004, Jiang et al., 2011). The online space is primed for rapid (felt) intimacy-building, and MSMI may occur when symptoms are unconsciously adopted to support belonging, while MBI occurs when symptom adoption is conscious.

MSMI and MBI are also both efforts to be seen within an algorithm-driven social context that rewards the most extreme symptoms with views; the Darwinism of the Algorithm, we might call it. This is a social context where disclosures of distress result in “notes” of caring, even if only from a stranger a continent away. MSMI sufferers who may have few close connections in their daily lives can belong to a ‘cohesive group’ even if only through acquired symptoms (Bartholomew & Wessely, 2002). Adolescents struggling with identity diffusion and an aching desire to be different may find both an explanation for their feelings and a sense of specialness in imitative DID (Draijer and Boon, 1999). In both cases, perception of connectedness is essential and assumed symptoms (such as a sense of being ‘not oneself’) must be emotionally salient to the group: “If a belief is to be propagated and sustained over a long period...all involved must be able to identify with the behavior chosen. Without the perception of a common shared quality the episode will either be transient or may not take place at all.” (Wessely, 1987, p. 116).

Social media associated abnormal illness behavior

We propose the term Social Media Associated Abnormal Illness Behavior (SMAAIB) to collect both MSMI and MBI presentations under a construct that is agnostic regarding phenomenology. Abnormal illness behavior has been described as: “the persistence of a maladaptive mode of experiencing, perceiving, evaluating, and responding to one’s own health status despite the fact that a doctor has provided a lucid and accurate appraisal of the situation...with opportunities for discussion, negotiation, and clarification, based on adequate assessment of all relevant biological, psychological, social and cultural factors.” (Pilowsky, 1990, p. 207) Of course this assumes interaction with an idealized physician, with standards that even the best physicians inconsistently attain. Similarly many individuals (with MBI particularly) do not seek out physicians at all, or encounter them only coincidentally.

Both falsely refusing and inappropriately leveraging the sick role fall under the SMAAIB construct, and the very definition offers instructions for management. SMAAIB includes somatically and psychologically focused illness behavior, and may be volitionally or involuntarily produced. It includes boththe adolescent with MBI filming consciously produced tic-like outbursts due to an overwhelming desire to be seen and the highly suggestible MSMI patient yelling and throwing items after months of watching Tourette Syndrome content in the isolation of COVID-19 lockdown. It includes the patient with MSMI marked by DID-like symptoms (what Draijer & Boon, 1999, would call “imitative” DID)--firmly convinced this diagnosis explains her adolescent search for identity—and the MBI TikToker finally getting the attention he craves.

In these cases it is essential to build rapport—not only to understand, but to enable recovery. This involves not only providing the physician’s explanatory model for SMAAIB (of whatever type), but also discussion of the patient’s model, and negotiation between the two (Pilowsky, 1990) It is also essential to understand not only biological but also psychological, social and cultural contributions to the presentation. Providing care, understanding and face to face interactions outside the artificially hyperpersonal setting of social media is necessary. In cases of SMAAIB, healing comes first by disconnection, then connecting anew: disconnecting (in part) from social media, and disconnection of attention and belonging from illness representation. Connection necessarily follows, unpredicated on illness behavior: between adolescent and treater, adolescent and parents, and the adolescent with themselves. Health emerges when adolescents are supported for who they are as whole human beings, not diagnoses.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Andrea Giedinghagen

Author biography

Andrea Giedinghagen is a graduate of Washington University in St. Louis School of Medicine, with a robust clinical practice focusing on gender expansive children and adolescents. Her research interests include the impacts of trauma and resilience factors on LGBTQ+ youth mental health.

Appendix

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