“Rapid onset gender dysphoria” study misunderstands trans depersonalization, ends up blaming Zinnia Jones

Zinnia Jones

Disease vector

Lisa Littman’s long-awaited “rapid onset gender dysphoria” (ROGD) study was finally published in full on August 16 in PLOS One (Littman, 2018), and its findings have turned out to be just as underwhelming and tenuous as suggested by her 2017 poster abstract (Littman, 2017). The paper has offered new insight into the full scope of incompetence, logical leaps, and sheer guesswork tying this hypothesis together. Its methodological issues alone – using anti-trans groups to recruit parents who don’t believe their kids are trans, and then accepting this as evidence that these kids aren’t trans – have already been widely criticized, to the point that her employer, Brown University, withdrew their press release about the study. The staff of PLOS One have also left a note on her paper indicating that they are aware of these serious issues, and that they will be seeking further expert review.

Methodology aside, there’s still much, much more to find fault with in this gum-and-paperclips study, and I’m already in the process of assisting PLOS One with their review of its findings. Why? Because the study misrepresents my work, and directly implicates me in the contagious spread of a new “disease”.

This is going to take some explaining.

 

How does “rapid onset gender dysphoria” work?

In the full study, Littman finally explains what “ROGD” is actually supposed to be, and how it is allegedly acquired and, yes, even spread to others. She proposes that ROGD is essentially a false belief of dysphoria occurring in cisgender youth, and that they come to this belief via the following process:

It is unlikely that friends and the internet can make people transgender. However, it is plausible that the following can be initiated, magnified, spread, and maintained via the mechanisms of social and peer contagion: (1) the belief that non-specific symptoms (including the symptoms associated with trauma, symptoms of psychiatric problems, and symptoms that are part of normal puberty) should be perceived as gender dysphoria and their presence as proof of being transgender; 2) the belief that the only path to happiness is transition; and 3) the belief that anyone who disagrees with the self-assessment of being transgender or the plan for transition is transphobic, abusive, and should be cut out of one’s life. The spread of these beliefs could allow vulnerable AYAs to misinterpret their emotions, incorrectly believe themselves to be transgender and in need of transition, and then inappropriately reject all information that is contrary to these beliefs. In other words, “gender dysphoria” may be used as a catch-all explanation for any kind of distress, psychological pain, and discomfort that an AYA is feeling while transition is being promoted as a cure-all solution.

She further claims that this false-belief dysphoria can be spread in online communities through certain specific means:

There are many examples on popular sites such as Reddit (www.reddit.com with subreddit ask/r/transgender) and Tumblr (www.tumblr.com) where online advice promotes the idea that nonspecific symptoms should be considered to be gender dysphoria, conveys an urgency to transition, and instructs individuals how to deceive parents, doctors, and therapists to obtain hormones quickly.

So, what “nonspecific symptoms” are being misconstrued as gender dysphoria? Littman provides only one example in figure 1, under “Vague and nonspecific symptoms called signs of GD”:

“Signs of indirect gender dysphoria: 1. Continual difficulty with simply getting through the day. 2. A sense of misalignment, disconnect, or estrangement from your own emotions. 3. A feeling of just going through the motions in everyday life, as if you’re always reading from a script. 4. A seeming pointlessness to your life, and no sense of any real meaning or ultimate purpose. 5. Knowing you’re somehow different from everyone else, and wishing you could be normal like them.”

This is attributed to a Tumblr blog, transgenderteensurvivalguide.tumblr.com. But my regular readers may recognize this as my own work. This excerpt is taken from my September 2013 post, “’That was dysphoria?’ 8 signs and symptoms of indirect gender dysphoria”. But despite the Tumblr post in question linking to a copy of my article, Littman chose to quote only a bullet-point summary rather than the full version with far more detailed and lengthy descriptions.

She also calls these “vague and nonspecific symptoms” while cutting off her excerpt right before I explained their connection to gender dysphoria. Littman quotes five summarized sections, yet leaves out sections 6 (“A notable escalation in the severity of these symptoms during puberty”) and 8 (“Substantial resolution of these symptoms in a very obvious way upon transitioning, particularly upon initiating HRT”). Despite the rather obvious associations between gender dysphoria, adolescent onset, and resolution of dysphoric symptoms after transitioning, Littman chose to omit these sections of my article and then label it as “vague and nonspecific symptoms called signs of GD”.

Her description of these symptoms as vague and unrelated to gender dysphoria is simply inaccurate. The original article is the most-read post I’ve ever made and has been viewed hundreds of thousands of times, and I’ve personally heard from hundreds of trans people who felt that these descriptions helped them understand and recognize their own gender dysphoria. The experiences I’ve written about have resonated deeply with many trans people, and the original article is so frequently passed around trans support communities that it’s often considered basic reading on gender dysphoria and questions of gender identity. Why? Because, rather than being “vague and nonspecific”, it describes a real and consistent symptom profile that is known to be often associated with untreated gender dysphoria.

 

That was dysphoria – and depersonalization

More: Depersonalization in gender dysphoria: widespread and widely unrecognized

Although “That was dysphoria?” is a personal account written from a lay perspective, much of what I described reflects the symptoms of a little-known condition called depersonalization. Depersonalization disorder, also known as depersonalization/derealization syndrome or chronic depersonalization, is a syndrome characterized by feelings of “unreality” or “no self”. This is not a delusional or psychotic condition – perception of reality is intact and accurate, but their conscious experience takes on an unsettling and unpleasant texture. This cluster of symptoms is also distinct from both depression and anxiety (Michal et al., 2011). Sufferers feel separated or estranged from their own thoughts and feelings, often perceiving themselves as split into a detached observer of both their inner and outer life, and can frequently experience this as an ongoing and compulsive rumination. They frequently feel emotionally numbed – “I know I have feelings but I don’t feel them” – and may even feel physically numbed, describing sensations such as having a “head full of cotton”.

They sense that some essential quality is lacking in how they experience the world, and may feel “robotic”, “dead”, or like a “zombie”, going through the motions of life as if simply reading from a script. They may lose any sense of personal agency in their life. Reality itself feels “unreal” to them, and is often felt to be flat, dreamlike, colorless, lifeless, or like a picture with no depth. They may feel separated from the world as if by a veil or a glass window. These symptoms, typically experienced as chronic and unremitting throughout one’s life, produce an overall sense of disconnectedness from life and disinvolvement with the world (American Psychiatric Association, 2013; Sierra, 2009). Chronic depersonalization also appears most frequently during adolescence (Medford, 2012). Although the syndrome is highly emotionally distressing, many sufferers may not be aware that this is an actual condition, and may believe that this is simply what “normal” feels like (Steinberg et al., 1993).

Compare this to the descriptions of my experiences in “That was dysphoria?” which Littman omitted from her excerpt:

  • “I would feel like crying, I would know on some level that I should be crying, but I just couldn’t make it happen.”
  • “… I would be smothered in this horrible feeling of emotional deadness. It felt like my head was full of concrete…”
  • “Everything always seemed like it was somehow less real than it ought to be.”
  • “I didn’t feel like I was my own person – I had no sense of myself as someone who could make my own choices and decisions as I wished.”
  • “I felt like an actor, being handed my lines by someone else, and I didn’t know how to be anything other than that.”
  • “It felt like my mind was constantly talking to itself without any interruption, and it was overanalyzing everything around me. Some second, parallel existence seemed to be running alongside my direct experience of consciousness: an inner monologue of sorts, but a very toxic one.”
  • “There always seemed to be some invisible skin separating me from the rest of reality – I could move around in the real world, interact with it, but never actually touch it or feel it.”
  • “For a few years, my emotions weren’t just blunted or dysfunctional – they went missing almost entirely. I felt nothing, day in and day out.”
  • “When you don’t know what this is, or that it’s even an actual condition, it’s easy to mistake it for who you naturally are. … I didn’t know there was anything wrong with me.”

These are certainly not “vague and nonspecific symptoms” as Littman labels them – they are part of a real, known condition. But why would myself and the wider trans community call them “signs of gender dysphoria”? Are we just making easily-influenced kids think they’re trans when they’re really experiencing something else entirely?

No. As it turns out, chronic depersonalization is vastly more common in trans people compared to the general population, and transitioning is associated with a significant reduction in depersonalization symptoms. Not only is it inaccurate to call these “vague signs and symptoms” – it’s also inaccurate to imply that these are wholly unrelated to gender dysphoria.

 

Clinical research on transgender depersonalization

More: Elevated rates of depersonalization in gender dysphoria

An estimated 1% of the general population suffers from chronic depersonalization (Michal et al., 2016). However, studies of transgender subjects have found a prevalence of clinically significant depersonalization/derealization symptoms ranging from 10.2% (Kersting et al., 2003) to 14.6% (Colizzi et al., 2015). Given estimates that 0.6% of the population is transgender (Flores et al., 2016), this would indicate that while 6 per 1,000 people in the general population are trans, up to 81 per 1,000 people with chronic depersonalization could be trans. Far from being vague, nonspecific, and not connected to gender dysphoria, this is a genuine syndrome widely experienced by trans people.

Medical transition treatment is also known to be linked to reduction in depersonalization symptoms. Colizzi et al. (2015) found that depersonalization symptoms in trans people declined significantly after treatment with hormone therapy was initiated. Consistent with these observations, Walling et al. (1998) found that depersonalization symptoms were much lower in trans people who had reassignment surgery compared to those who had not, and Wolfradt & Neumann (2001) reported that trans women who’d undergone SRS had levels of depersonalization symptoms similar to cisgender controls. Colizzi et al. (2015) raise the possibility that dissociative symptoms such as depersonalization and derealization could be seen not as a separate or unrelated pathology, but “as a genuine feature of the GD”.

The observation of a connection between depersonalization and transition status which Littman chose to omit – “Substantial resolution of these symptoms in a very obvious way upon transitioning, particularly upon initiating HRT” – is not groundless or speculative. It has been confirmed by a consistent body of research on depersonalization in trans people.

 

Trans community experiences of depersonalization

More: Themes of depersonalization in transgender autobiographies

Depersonalization in the context of gender dysphoria is far from a recent phenomenon. Historical descriptions of depersonalization in trans people are not difficult to come by – accounts of these symptoms can be found in the memoirs of pioneering transgender public figures. Travel writer Jan Morris (1974) describes a range of experiences which align closely with depersonalization symptoms, such as feeling that she sees the “grand constants of the human cycle … only from a distance, or through glass.” She notes that “a person who stands all on his own, utterly detached from his fellows, may come to feel that reality itself is an illusion”, and compares herself to silenced and isolated prisoners who “sometimes lost all grasp of their own existences, and became non-persons even to themselves.” Morris further describes herself as experiencing “a detachment so involuntary that I often felt I really wasn’t there, but was viewing it all from some silent chamber of my own”, which she also refers to as a “remote and eerie capsule”.

After transitioning, she observes herself emerging from a “rough hide” that “deadens the sensations of the body”: “I had no armour: I seemed to feel not only the heat and the cold more, but also the stimulants of the world about me.” She compares life as a man compared to life as a woman as being “like stepping from cheap theatre into reality”. Finally, Morris notes that she no longer feels “isolated and unreal”, and now has a greater grasp of emotional experience: “Not only can I imagine more vividly now how other people feel: released at last from those old bridles and blinkers, I am beginning to know how I feel myself.”

Christine Jorgensen (1967), one of the first trans women to come out and publicly transition, highlights similar experiences in her autobiography. During treatment with estrogen, she notes that she no longer experienced “listlessness and fatigue”, and that she “became alive” and felt “better than ever before”. Jorgensen further observed that while she “never did fit into life before”, “I have never been such a real person as I am today”.

Experiences such as these have been echoed by contemporary trans writers: Imogen Binnie (2014), author of Nevada, describes discontinuing HRT for fertility reasons as having her “emotional body” revert “to what it was when I was twenty-two, in the closet, emotionally numb and going through the motions of being a human being without any real investment.” Additionally, I’ve collected numerous personal reports of depersonalization-like symptoms among trans people, including dozens shared on trans support forums like Reddit’s /r/asktransgender.

Contrary to any characterization of this as a random assortment of vague symptoms indicating nothing, these specific depersonalization-associated symptoms appear consistently in many trans people from the first trans public figures of decades ago to modern-day trans writers and community members.

 

Rapid onset gender dysphoria is an unnecessary and unsupported “Typhoid Zinnia” hypothesis

So: Littman has selectively quoted my own work on depersonalization symptoms in gender dysphoria as her solitary example of “vague and nonspecific symptoms called signs of GD”, when these symptoms are in fact specific to a known condition that is disproportionately associated with gender dysphoria. She has attributed this to “Tumblr” and apparently neglected to locate its original source, my own article which was updated with further clinical evidence of transgender depersonalization symptoms more than a year before her paper was published. And in tying this in to her proposal that a false-belief dysphoria called “rapid onset gender dysphoria” can be acquired by “the belief that non-specific symptoms … should be perceived as gender dysphoria and their presence as proof of being transgender”, she has undermined that very hypothesis with her own apparent unawareness of depersonalization as a real syndrome and its known connection to gender dysphoria.

This is not entirely surprising. Chronic depersonalization is not a widely known condition, and “a dramatic neglect of DP in clinical routine” has been described (Michal et al., 2011); sufferers typically experience these symptoms for 7 to 12 years before receiving a diagnosis of depersonalization, and may have lived with this for half of their lifetime (Hunter et al., 2017). But it is quite a different matter when a researcher fails to recognize this syndrome, mislabels these symptoms as “vague and nonspecific”, proposes that this specific list of symptoms plays a key role in the spread of a new kind of “false gender dysphoria” condition, and then somehow slips this through peer review into a major journal. Thanks to this mixture of ignorance and neglect, my work has not only been entirely misrepresented, but blamed for spreading a contagious “disease” – a supposed condition whose theoretical basis is itself deeply compromised by this misrepresentation of my work.

Littman does not seem to have realized that what she is describing as a false belief of dysphoria, in the context of my work and its influence, is actually a genuine transgender reality. She has proposed, without adequate evidence, that exposure to this content is leading likely-cisgender youth and even adults to conclude falsely that they have gender dysphoria. Such a “Typhoid Zinnia” hypothesis is not only unsupported, but unnecessary: what she is observing can already be sufficiently explained and accounted for by known phenomena surrounding gender dysphoria.

Depersonalization is an unfamiliar concept to many, and depersonalization in gender dysphoria even moreso – the term itself hardly ever appeared in transgender communities for most of history, even though descriptions of the characteristic symptoms often did. It is entirely possible that my own publications delineating these symptoms, recognizing this as a discrete phenomenon tied to gender dysphoria and giving it a name, have had significant influence in raising awareness of depersonalization’s connection to gender dysphoria where this awareness did not previously exist. What this means in practical terms is that there may have been many trans people who had not yet come to realize their own transness, and experienced their untreated gender dysphoria in the form of prominent and distinct symptoms of depersonalization – but did not know that these symptoms could be tied to gender dysphoria. Upon coming into contact with material explaining exactly that connection, they may then come to understand this in the context of their own gender questioning and more general gender-dysphoric feelings, and may recognize themselves as trans and potentially come out and transition.

Again, hundreds of trans people have reported this happening in their lives specifically due to reading my articles on this topic. We know that this happens. We don’t know that “rapid onset gender dysphoria” does. And in the absence of this material – in the absence of this awareness of depersonalization in gender dysphoria – we would not be left with a successfully contained outbreak of false-belief dysphoria among cis people. We would be left with more trans people who do not have the resources available to understand a very real condition, recognize their authentic selves, or take steps that are known to improve these symptoms.

More: Psychosocial impact of depersonalization

This is not a trivial or disposable aspect of the transgender experience – it is a matter of moral urgency. Untreated depersonalization is known to be associated with highly elevated rates of depression, anxiety, and suicidality (Michal et al., 2016; Michal et al., 2011, Michal et al., 2010). Given the transgender community’s high rates of exactly these conditions, recognizing depersonalization symptoms in trans people and providing treatment that’s known to ameliorate these symptoms – gender-affirming care – is essential.

Littman’s other examples of “online advice” potentially contributing to the acquisition of a false-belief dysphoria are just as flimsy. Her cited “instructions on lying” to healthcare providers in order to obtain transition treatment are not a new phenomenon; trans people have shared advice with one another on navigating the potential gatekeeping of clinicians since at least the 1960s. And “urgency to transition” during puberty is not fearmongering, but fact: studies of trans adolescents who were given puberty blockers prior to transition have found that these youth are effectively no longer gender dysphoric at all (Cohen-Kettenis & van Goozen, 1997; de Vries et al., 2014).

Other significant issues exist throughout the paper as well, which I plan to address in further detail – depersonalization disorder in gender dysphoria is simply the area in which I have the most experience. PLOS One describes its peer-review process as concentrating “on technical rather than subjective concerns”, with publications “made available for community-based open peer review involving online annotation, discussion, and rating.” I now offer that peer review.


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References

  • American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing. [Excerpt]
  • Binnie, I. (2014, February 9). The Banal and the Profane. Lambda Literary. Retrieved from https://www.lambdaliterary.org/
  • Cohen-Kettenis, P. T., & van Goozen, S. H. (1997). Sex reassignment of adolescent transsexuals: a follow-up study. Journal of the American Academy of Child and Adolescent Psychiatry, 36(2), 263–271. [Abstract]
  • Colizzi, M., Costa, R., & Todarello, O. (2015). Dissociative symptoms in individuals with gender dysphoria: is the elevated prevalence real? Psychiatry Research, 226(1), 173–180. [Abstract]
  • de Vries, A. L. C., McGuire, J. K., Steensma, T. D., Wagenaar, E. C. F., Doreleijers, T. A. H., & Cohen-Kettenis, P. T. (2014). Young adult psychological outcome after puberty suppression and gender reassignment. Pediatrics, 134(4), 696–704. [Abstract]
  • Flores, A. R., Herman, J. L., Gates, G. J., & Brown, T. N. T. (2016). How many adults identify as transgender in the United States? Los Angeles, CA: The Williams Institute, UCLA. [Full text]
  • Hunter, E. C. M., Charlton, J., & David, A. S. (2017). Depersonalisation and derealisation: assessment and management. BMJ, 356, j745. [Abstract]
  • Jorgensen, C. (1967). Christine Jorgensen: A personal autobiography. New York, NY: Paul S. Eriksson.
  • Kersting, A., Reutemann, M., Gast, U., Ohrmann, P., Suslow, T., Michael, N., & Arolt, V. (2003). Dissociative disorders and traumatic childhood experiences in transsexuals. Journal of Nervous and Mental Disease, 191(3), 182–189. [Abstract]
  • Littman, L. L. (2017). Rapid onset of gender dysphoria in adolescents and young adults: a descriptive study. Journal of Adolescent Health, 60(2), S95-S96. [Poster abstract]
  • Littman, L. L. (2018). Rapid-onset gender dysphoria in adolescents and young adults: a study of parental reports. PLOS ONE, 13(8), e0202330. [Full text]
  • Medford, N. (2012). Emotion and the unreal self: depersonalization disorder and de-affectualization. Emotion Review, 4(2), 139–144. [Abstract]
  • Michal, M., Adler, J., Wiltink, J. Reiner, I., Tschan, R., Wölfling, K., . . . Zwerenz, R. (2016). A case series of 223 patients with depersonalization-derealization syndrome. BMC Psychiatry, 16, 203. [Full text]
  • Michal, M., Glaesmer, H., Zwerenz, R., Knebel, A., Wiltink, J., Brähler, E., & Beutel, M. E. (2011). Base rates for depersonalization according to the 2-item version of the Cambridge Depersonalization Scale (CDS-2) and its associations with depression/anxiety in the general population. Journal of Affective Disorders, 128(1–2), 106–111. [Abstract]
  • Michal, M., Wiltink, J., Till, Y., Wild, P. S., Münzel, T., Blankenberg, S., & Beutel, M. E. (2010). Type-D personality and depersonalization are associated with suicidal ideation in the German general population aged 35-74: results from the Gutenberg Heart Study. Journal of Affective Disorders, 125(1–3), 227–233. [Abstract]
  • Morris, J. (1974). Conundrum. New York, NY: Harcourt Brace Jovanovich.
  • Sierra, M. (2009). Depersonalization: A new look at a neglected syndrome. New York, NY: Cambridge University Press.
  • Steinberg, M., Cicchetti, D., Buchanan, J., Hall, P., & Rounsaville, B. (1993). Clinical assessment of dissociative symptoms and disorders: the Structured Clinical Interview for DSM-IV Dissociative Disorders (SCID-D). Dissociation, 6(1), 3–15. [Full text]
  • Walling, D. P., Goodwin, J. M., & Cole, C. M. (1998). Dissociation in a transsexual population. Journal of Sex Education and Therapy, 23(2), 121–123. [Abstract]
  • Wolfradt, U., & Neumann, K. (2001). Depersonalization, self-esteem, and body image in male-to-female transsexuals compared to male and female controls. Archives of Sexual Behavior, 30(3), 301–310. [Abstract]

About Zinnia Jones

My work focuses on insights to be found across transgender healthcare, public health, psychiatry, and history of medicine, integrating these many perspectives and guided by the lived experiences of trans people. I live in Orlando with my family, and work mainly in technical writing.
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