Embodying the (Dis)embodiment: Narrating Depersonalization-Derealization Disorder

Embodying the (Dis)embodiment: Narrating Depersonalization-Derealization Disorder

A grandfather surprises his granddaughter by driving hundreds of miles to attend her high school graduation, weeks before he passes away from cancer. A teenager gets a letter of acceptance to her dream college program, and is so hopeful for the opportunities her future holds. A young adult leaves her home country for the first time, and is in awe of the beauty and diversity of this world.

In resistance to the stigma surrounding the disclosure of mental disorders in academia, I narrate my experience to illuminate the material and discursive tensions that accompany Depersonalization-Derealization Disorder. Though each individual impacted by this disorder may experience the condition differently, my hope is that by contributing my story, I can make the diagnosis less isolating for others, create knowledge in this area, and extend understanding of (dis)embodiemt as a product of Depersonalization-Derealization Disorder.

Depersonalization-derealization disorder (also referred to as DDD, DPDD, DPD, depersonalization disorder, DD disorder and DPDR) is a disorder that impacts between 1% and 2% of the population, and is most commonly onset before the age of 25, rarely ever occurring after age 40 (Baker et al., 2003; Cleveland Clinic, 2020). Although DDD is understudied in the field of Communication Studies, there is a growing body of experimental and theoretical research about the condition in other fields. Depersonalization-derealization disorder is generally understood as “a persistent or recurring feeling of being detached from one’s body or mental processes, like an outside observer of one’s life (depersonalization), and/or a feeling of being detached from one’s surroundings (derealization)” (Spiegel, 2021, para 1). Onset can be triggered by a traumatic experience, specific drugs, panic, and more (Millman et al., 2020). Often, DDD is confused with other dissociative disorders, such as dissociative identity disorder (DID) and dissociative amnesia (American Psychological Association; APA, 2018). Although DDD is often categorized as a dissociative disorder, there have been arguments as to whether it fully encompasses the dissociative symptoms based on the Dissociative Experiences Scale (Carlson & Putnam, 1993; Millman et al., 2020). Classification of the disorder is important because that can influence how treatment plans are created (Millman et al., 2020). Regardless of its categorization, rarely is DDD included in the larger discourse of mental health and mental illness, especially within the field of Communication Studies.

There are two main categories of dissociative symptoms that an individual with DDD experiences: depersonalization and derealization. Depersonalization is when an individual may experience a detachment from their self, both mentally and physically (Cleveland Clinic, 2020). This can lead to the feeling of all their senses being “turned off,” difficulty identifying memories or connection to memories, and a lack of control of the body and mind (Raypole, 2019). Depersonalization may be a way for a person to cope with trauma by detaching from their self (International Society for the Study of Trauma and Dissociation, ISST-D, 2020). Derealization is when an individual experiences a detachment from their reality. These feelings can make an individual feel like they are observing themselves outside of their body, or that they are in a dream-like world where nothing is real (APA, 2018). Because derealization distorts perception of the outside world, this can help an individual cope with trauma because it makes their source of trauma seem less real (ISST-D, 2020).

Though researchers and practitioners have found success with a range of interventions, there is not yet strong evidence for any specific treatment strategy (Medford et al., 2005) perhaps due to a limited understanding of symptom variability in individual experiences (Millman et al., 2020). The goal of treatment for DDD patients is typically to address the triggers of symptoms (Cleveland Clinic, 2020). Interestingly, lifestyle factors (diet, alcohol, and exercise) that work for some individuals to lessen their symptoms were shown to actually worsen the symptoms for others (Baker et al., 2003), thus highlighting the nuance of the condition. Researchers have hypothesized that those with DDD should have “close and dynamic physical and synchronous interactions with their environment” in order for individuals to feel more embodied and connected to the world around them (Ciaunica et al., 2022, p. 10).

When an individual with DDD enters an episode of depersonalization or derealization, they are aware that what they are experiencing is abnormal and know it is not their “true” reality (Cleveland Clinic, 2020). However, communicating exactly how their symptoms are manifesting is difficult due to the sigma of feeling like they are “going crazy”(Raypole, 2019). Each individual with DDD might communicate their symptoms differently, so it is important to raise awareness about individual-level nuances of DDD in order to gain a holistic understanding of the disorder and how it can manifest. Communication is the avenue through which our social realities are constituted, and therefore it is important to extend communication theorizing to mental health and mental illness contexts, such as DDD. This paper will explore the ways in which communication surrounding DDD both anchors and alleviates the disembodiment that accompanies the DDD experience.

Part One: The Diagnosis

Nothing makes sense. The world around me looks like I am watching a TV with a faulty picture. My couch looks pixelated and the air moves like static. I don’t hear a single thing. Is the world really this quiet? I open my mouth to fill the silence, but the voice that penetrates the air doesn’t belong to me… at least, I don’t think it does. I look around for an unexpected guest and see no other bodies in the room. I speak again, only to hear the same, strange voice.

Like most Americans, I was experiencing extreme stress and uncertainty due to the COVID-19 pandemic. In efforts to take back my control of the year 2020, I quit my industry job to move across the country and begin a PhD program. Although I had relocated alone before, the COVID-19 pandemic made this move unique. Even though I am an introvert, I am usually able to create a support system quickly. This time was different because I didn’t know anyone in my new town before I moved. Because all the graduate classes I took were online, I would go days without seeing another colleague or a reason to leave my apartment. However, I still had to teach in-person.

As one might imagine, teaching in-person during the height of the pandemic (before vaccines were available) was an unsettling task. The students did not want to be inside a crowded room any more than I did, and they were not subtle with their attitudes towards the course. As a graduate assistant, I had no power in moving my classes online, or even in making them hybrid. Each time I tried to explain this to my students, I was met with attacks to my character such as “don’t you care that we don’t feel safe in-person?” Of course I cared. I didn’t feel safe either, but my job was to teach the course in accordance with university policies. Though these interactions were emotionally laborious and impacted my mental health, my previous experiences with mental health challenges had given me the tools I needed to survive and detach myself from the things I cannot control. However, having these interactions as my only in-person contact was nothing short of taxing.

A little over a month into the semester, I was in a traumatic car accident. I was driving to teach in-person, and within an instant, everything changed. My sense of safety was taken away, as I had encountered the harsh reality that I only have control over so much. A few days later I was met with panic attacks—one after the other, and they just would not stop. Then, the dissociative episodes started. I had no idea where to turn. I called a hotline.

Recorded phone message: ….“if you believe you are in immediate danger to yourself or others, please hang up and dial 911.”

The operator stayed on the phone with me for close an hour. We talked about my car accident, my recent life changes, my hopes for the future, and more. As I described my episodes, it was almost difficult for me to believe the words coming out of my mouth. This was the first time I shared, out loud, what I had been experiencing. Surely, I had to be exaggerating or confused. Should I really be admitting that I am questioning myself and my reality? However, the operator assured me that I was not crazy; that what I was experiencing was common for those who were under extreme stress or who had experienced trauma. Her acknowledgement of my experience helped to alleviate the burden I had been carrying that there was something seriously wrong with me. She helped me to schedule an in-network therapy appointment the very next day. I began to see my new therapist several times a week. We would talk about my episodes, practice grounding techniques, and I would read her the thoughts and feelings I wrote in my journal. Two months later, after screenings to rule out other physical and mental health issues, I received my diagnosis.

Receiving my diagnosis was the first time I had heard of Depersonalization-Derealization Disorder. Although it was comforting to know that my experiences were common enough to have an official name in the DSM-5, my therapist shared that she had never had a patient with DDD before me. Her empathetic understanding still made me feel safe (Tietbohi, 2021). I was also surprised to learn that I would not be prescribed medication. If a patient with DDD is prescribed medication, it is usually to treat the accompanying depression or anxiety that might accompany DDD (Cleveland Clinic, 2020). I was told that it would be best to try to address my triggers instead of starting a new medication.

Part Two: Coming to Terms

Although I was not ashamed of DDD, I considered the details of my diagnosis and experiences private information that should be handled with care, especially as I embarked on the journey of learning more about DDD. According to communication privacy management(CPM; Petronio, 2002; Petronio, 2018), private information is any information that carries a degree of vulnerability. When considering disclosing private information to others, CPM (Petronio, 2002) posits that individuals go through privacy negotiations in order to decide how their private information should be managed.

Early on, I created core and catalyst criteria to protect the privacy boundaries of my condition. Through the lens of CPM, core criteria are rules that remain consistent, and catalyst criteria are rules that may changed based on context or situational factors (Petronio, 2018). I was okay with letting others know I was struggling mentally, but I kept the details particularly sealed. During the beginning of my journey, I was more open with friends about my condition than I was with family members. My main consideration for this was because my family was hundreds of miles away, and the last thing I wanted to do was put extra worry or stress on them (Ebersole & Hernandez, 2016). Additionally, I knew I would be met with questions I did not have answers to. Because I was still learning about what living with DDD meant, I was worried that difficult questions would trigger more feelings of disembodiment. If I could not answer a question about DDD, or if my answer was different than an answer someone else found on Google, would that make me feel even more disconnected from my own diagnosis? Would that make my diagnosis feel less real? Would this lead to further entrenchment in my own disembodiment?

My therapist walked me through grounding techniques to help me center myself during dissociative episodes, which really helped. Although those techniques are helpful when navigating the episodes, they do not help me to avoid or prevent them. No matter what I tried, I simply could not control when my brain decided to dissociate from my self or my surroundings. I had a difficult time accepting and acknowledging the fact that I had little control over this, and I found it more difficult to explain than if I had little control over my physical body. This self-uncertainty seemed to be fueled by “a lack of knowledge about the self” (Knobloch & Solomon, 1999, p. 262). How could I expect others to understand my condition if I, myself, could not explain it? How could I help others understand what my new reality was like if my new reality did not always feel real to me?

My therapist was particularly concerned about my lack of in-person social support, as the virtual space only affords so much. She suggested I get a pet, so I got a puppy. Had I ever had a dog before? No. I had no idea what I had gotten myself into, but it ended up being an extremely impactful decision.

Rio [my puppy] has been the best thing to happen to me lately. Before I brought him home, I was forgetting to take care of myself because my needs didn’t always make themselves known. Rio has no problem letting me know what he needs, and when he needs it. Most days he is the only reason I go outside. When Rio has to potty, we go outside. When Rio needs to get some energy out, we go on a walk. When Rio needs a meal, I figure I should probably eat something too.

When people asked me why I got a dog, especially during coursework in rigorous PhD program, I was as honest with them as I could be. Sometimes I told people I got him for mental health reasons, and other times I told people that Rio was my response to the pandemic. Are either of these complete lies? No. However, they were attempts to mask the vulnerability of my true answer: “my therapist thought that a pet would consistently bring me back to reality.” This dialectical tension in considering how much I want to conceal or reveal about my mental condition is consistent with other studies that have found selective disclosure about mental illness to be a common choice (Eaton et al., 2017).

Rio was truly the only success in making sure I stayed on a schedule, took care of myself, and was never lonely. Due to the length of time it took to negotiate privacy boundaries with myself, I found comfort through crafting normalcy. The communication theory of resilience (CTR; Buzzanell, 2010) posits that crafting normalcy through language and routines is helpful in rebuilding your life after a disruption. Although Rio was a new addition to my life, he helped me to come back to reality and start to put my life back in order. He helped me feel normal again and come to terms with the new version of myself that I was learning more about. Rio was a material element added to my life that could not be ignored, and in turn we were able to co-create transformational results in my “new normal.” Interestingly, this construction of a new social reality happened mostly through communication that did not materialize into words. Rio always felt my physical presence, and he never doubted whether or not I was real. Even when I felt disembodied, he knew he could rely on me to meet his needs.

Part Three: Life with DDD

Today I saw a TikTok that resonated with me deeply. It was of a girl sitting in her car, talking into her phone camera, and crying. She goes on to say how she had a bad trip a few years ago, and now she has to accept living with the uncomfortable symptoms of depersonalization and derealization. While she didn’t explicitly mention the names of the symptoms, her descriptions were spot on. I commented to let her know she wasn’t alone. My comment stood out among the others saying things like “lol go see a psychiatrist” and “you should have known the risks before doing drugs.”

Although conversations about mental health and mental illness have become much more normalized, we still have a long way to go in terms of the stigmas associated with them. Stigma management communication theory (SMC; Meisenbach, 2010) posits that individuals will decide how to discursively manage their stigma “based on their attitude toward their stigma’s public applicability to them and on their attitude toward challenging or maintaining other’s perceptions of the stigma” (p. 278). The SMC framework offers several strategies to mange stigma after an individual chooses to accept that the stigma applies to them: passive acceptance, openly displaying the stigmatized attributes, apologizing for displaying the stigma, using humor, blaming the stigma, isolating, and using social buffers (Meisenbach, 2010). Through the lens of SMC, I have chosen to accept the stigma of DDD and mental disorders and have allowed the stigma to be incorporated into the construction of my personal identity.

When it comes to my own management, I change my strategies based on the social context. Due to this, my catalyst criteria are always changing and adapting. Consistent with the SMC framework, I typically use self-deprecating humor when I refer to my mental health to authorized co-owners of my DDD diagnosis (Meisenbach, 2010). Conversations around mental disorders can often be uncomfortable for the recipients of the information, especially when the recipient has not experienced any mental health concerns. I find that when I use sarcasm or dark humor to navigate the topic, I see a visible sigh of relief from my conversation partner. I let these initial disclosures with people impact how future interactions with them and others like them will go. I do find that the “mystery” surrounding DDD is helpful in accepting and owning the stigma. Because most people in my life have never heard about DDD, I can assume that they are not comparing my experience to others and that I have control over how the condition is conceptualized. Having this agency helps to alleviate disembodiment because there are less preconceived notions and barriers to break through.

Being open about my mental condition has helped me to become a more empathetic instructor in the classroom. By being transparent with my students and making them co-owners of my diagnosis (i.e., “my mental health isn’t the greatest today”), many have also started to take the liberty of being more transparent with me. The semester I started doing this from the first day of class, I noticed that emails notifying me about an absence started to look different. Emails went from things like “I have to go to a funeral” or “I have a doctors appointment” to “I’m just not able to get out of bed today” or “I need a mental health day.” When students are more open with me, I can better connect them to campus resources, and also just give them a chance to validate the fact that prioritizing their mental health is okay.

However, I do worry about the material consequences of being so open about my diagnosis for several reasons. First, I want to pursue a career in academia, but what happens when the hiring committee reads this autoethnography? What stigmas will they associate with my ability to perform the duties of the position they are hiring for? What people in their own life will they compare me to? Should I have kept my privacy boundaries sealed to better my chances of getting a job? Second, because DDD is under-researched, what happens if my experience is the only one within reach for others? This condition is so nuanced, and those diagnosed with DDD are not a monolith. What criticism might be directed my way when someone describes an experience vastly different from my own? Third, little is known about how DDD manifests across the lifetime. What if, a few months from now, my symptoms go away? What if I had contributed to the conversation on a disorder that I no longer experienced?

Discussion

The overarching goal of this critical self-examination was to bring awareness to the disembodied experience that is a product of DDD. Depersonalization-derealization disorder is rarely included in the larger discourse of mental health and mental illness, even though it is estimated to impact 1%–2% of the population. Hopefully by sharing my story, this piece can serve as a narrative blueprint (Fox, 2007) for others as they embark on their sensemaking journey. Although the DDD experience is nuanced and will look different for everyone that is diagnosed, understanding more of what this condition can look like will help validate the experiences of others. Patient perceptions of their own disorder are also extremely important for managing their condition (Millman et al., 2020), so individuals should be encouraged and empowered to engage in their own sensemaking. The more understanding that researchers and practitioners have about DDD, the better they can support those who are impacted.

In this autoethnography, CPM, CTR, and SMC provided frameworks to analyze interactions and situations through to better understand how privacy, resilience, and stigma impact communicative interactions with and about DDD. However, the current body of communication literature has yet to deeply explore mental conditions such as DDD. Scholars have explored related topics such as stigma and mental illness (Flood-Grady & Koenig Kellas, 2019), memorable messages about mental health (Greenwell, 2019), eating disorders (Vidovic et al., 2005), anxiety (McLaughlin & Hatzenbuehler, 2009), among others. As a field, we still have a long way to go in terms of understanding mental disorders and illness through the lens of communication. The explanations from this paper about how privacy, resilience, and stigma are negotiated within my DDD experience might translate well to different types of mental conditions.

Because DDD is an extremely nuanced condition, autoethnographic and performative methodologies can provide the insight needed to lay the foundation for future research. As Langellier (1999) writes, “personal narrative performance is situated not just within locally occasioned talk-a conversation, public speech, ritual-but also within the forces of discourse that shape language, identity, and experience” (p. 127). By sharing our stories and experiences, we have the power to shape the way that DDD is viewed and discussed within the medical community, academia, and elsewhere.