“I Was Very Convinced That I Didn’t Exist”: 5 People Describe Their Experience With Dissociation

Here’s what it’s really like to experience dissociation in a persistent, life-affecting way.

Imagine that you’re moving through the world in a fog, able to control your body, but not feeling fully inside it — like you’re playing a video game of your life as a slightly removed spectator. This is how I experience my depersonalization-derealization disorder, a dissociative disorder that manifests as feeling disconnected from your body, mental processes, and surroundings.

While dissociation equates to feeling detached, depersonalization is feeling distant from yourself; it’s like you are an outside observer of your body or acting as if on autopilot. Derealization means feeling removed from your environment, like you are living in a dream or a haze, or there’s an imaginary force field separating you from other people.

About half of all people experience these feelings at least once in their lifetime, but 2% meet the criteria for depersonalization-derealization disorder, and have repetitive and persistent episodes of dissociation.

I’ve noticed a growing tendency for people to mention dissociation on social media in a joking or casual manner, which is certainly a way to cope with not wanting to connect to the reality of the world. But these flippant references sometimes can feel like they’re betraying the severity of the condition. When it gets really bad, I shut down. I can’t speak to my loved ones or access my emotions. Sex is out of the question, because I feel like a shell of a human. There are monthlong stretches of my life where I question if I was ever really there at all.

“Dissociation is a normal and healthy response to trauma, stress, boredom, or overwhelm. It’s our brain giving us a break,” Andrea Gutiérrez-Glik, LCSW, told me. The level of dissociation can vary. To measure it, she applies the “back-of-the-head scale,” a tool that visualizes the extent of a person’s derealization via hand measurements. Holding your hand as far as you can from your face indicates that you’re feeling present. Holding it an inch closer to your face means, as Gutiérrez-Gilk put it, “I’m present, but maybe I’m thinking about what’s for dinner tonight.” Moving it a bit closer to your face, she said, might signify, “I’m not noticing how my body feels and I’m thinking about what I have to do later.” Placing your hand right up to your face means “you’re not aware of the present moment,” she said.

Patients who would place their hand “behind their head” are in derealization territory, Gutiérrez-Glik said. “[It’s the feeling of] watching yourself, feeling like you’re in the corner of the room totally disconnected from your body or from yourself.” She added that while most people can relate to the feeling of “zoning out,” those who experience more severe dissociation can have instances of memory loss (dissociative amnesia) or feel like they have “multiple traumatized senses of selves” (dissociative identity disorder, which was previously called multiple personality disorder). If someone with the disorder is experiencing ongoing trauma, then dissociation can become “fixed and automatic” outside of one’s control, with some people reporting that they’ve been stuck in a dissociative period for weeks, months, or even years at a time.

Some studies in the United States report that dissociation disproportionately affects people who are transgender and/or experience gender dysphoria (at least three times more than the general population), and that Asian and Black people report higher rates of dissociative disorders than their white counterparts. Gutiérrez-Glik, who works with primarily LGBTQ+ patients, said daily instances of violence, including anti-gay, anti-trans, and racist microaggressions and discrimination, can lead people to “feel like the world around is not real or that you’re not real in it.” The average onset age for depersonalization is 16, but people can experience episodes from early childhood; less than 20% of people with the disorder start having episodes after the age of 20, according to NAMI.

While acknowledging that therapy is inaccessible for many, Gutiérrez-Glik stresses it’s important for anyone who thinks they’re experiencing dissociation to consult a mental health professional to see if they meet the criteria for a diagnosis. But many of the people I talked to reported that it’s been easier for them to be formally diagnosed with other disorders, like depression or PTSD, even if they mention dissociative symptoms to medical practitioners. Some found that mental health providers didn’t know how to treat dissociation specifically. Though the term has become more widespread, there’s room for more awareness about the disorder, how to treat it, and how to cope with it.

I asked five people, most of them queer and femme, about their experiences with dissociation. (Their responses are edited for length and clarity.)

(she/her), 25, first-generation Korean American

I was diagnosed with PTSD my freshman year of college, and at the time, I narratized it as a result of my sexual assault on campus and the fallout. But I think my dissociation actually began before. I think it had to do with the intense amount of pressure I was putting on myself to get into an Ivy League school because I didn’t want my mom, who had immigrated to this country at a young age and had an arranged marriage, to feel like she had wasted her life for nothing. A lot of immigrant children will understand the shape of dissociation, because your whole life is about disconnect and alienation, feeling like you don't really belong anywhere. These are similar feelings to dissociation.

My father is schizoaffective bipolar type, and it deeply fractured my understanding of reality and what a “normal person” is like. My mom was like, “No wonder you have anxiety, your father attacks you randomly one day or tells you that you’re not his child, and then he’ll be really nice to you the next day.” She was resistant to mental health treatment and didn’t know how to explain what was happening and because of that, my brother and I suffered a lot.

I was very convinced that I didn’t exist.

After talking to a doctor and getting help and medication, I learned that my most severe depersonalization episode had veered into the psychotic. It was in my junior year [of college]. I was walking down the street and suddenly, I started to cry and didn’t even feel it. I was very convinced that I didn’t exist. When you’re dissociating, it feels off, but there's still this level of consciousness or connection that’s alerting you that something’s off. When you're psychotic, that connection is severed. It’s like someone trying to convince you that the sky is not blue, but you know that it’s blue. Suddenly the sky has never been blue. It was the worst few hours of my life.

Since then, healing and coping has been a frontier that is not at all Instagrammable. I’ve done three years of outpatient intensive treatment. I’ve been in therapy. I’ve done inpatient. The severity of my mental illness will always guarantee that even if I know all of the psychoanalytic reasons for the way I am, I still have to cope with the aftershocks. The best way I’ve found to cope is water. Foucault talks about this in Madness and Civilization; he traces the history of the use of water to cope with mental illness and dysregulation. Warm showers, being close to water, listening to it, and feeling it is one of the only ways for me to emerge from a dissociative episode.

(she/her), 21, Black, New York, business management student

I remember when I was about 14, I would leave my high school and then, an hour or two later, end up in the middle of my therapy appointment with no recollection of anything in between. I would have full-on conversations with my mom, be on social media, but I just wasn’t actually there. These episodes would happen a couple of times a week and occasionally a couple times a day. It was like my body was on autopilot and my brain was knocked out cold, like someone had punched it. I was also having a lot of suicidal thoughts then. I never got diagnosed for my dissociation, but I had several psychiatrists who told me that my symptoms were common among people who have depression, anxiety, ADHD, and borderline personality disorder. Later, I saw posts on Instagram about dissociation and its relationship to anxiety and depression, and it finally clicked.

When I was 15, my psychiatrist wanted to diagnose me as borderline, so I spent a lot of years clinging to that identity. Growing up, I had this whole identity crisis, being a fat Black girl from a middle-class background going to a private school on the Upper East Side, where it’s literally like Gossip Girl. From day one, I was the number one target for the other girls to bully, whether it was for my race or my size, or my family’s socioeconomic status. Plus, being Black in America, my family never really knew where they came from, and when I asked, my parents would say, “the South.” They didn’t know any more because their parents or ancestors didn’t know, either.

Then, I found out I was adopted. I thought, I not only don’t know who I am, but I wasn’t who I thought I was, which is nobody. I always felt like there was this missing connection between me and my bio mom, like it was the piece of a puzzle that just never came in the puzzle box.

Since then, I’ve been in contact with my bio mom, which is great, and I have two little siblings who are wonderful. But I’ve come to learn that all adoptees have some form of adoption trauma. I’ve been more intentional with looking for communities of adoptees. For me, it’s more than just having a POC space, a Black space, or a Black queer space, but a group of people who get what’s it’s like to not really know where you come from. Now, I’m honestly glad that everything happened the way it did, and I don’t want to be anyone else. I love this version of me.

(they/them), 23, second-generation Chinese American, New York

I first started experiencing dissociation around junior year of high school, when I was 16. It was around that time I realized I was nonbinary. For most of my life, the gender role of “woman” was about confinement and limitation, in terms of my appearance and behavior. I would go into the bathroom at school and look at myself in the mirror like, Who is that? Then I’d think back and realize, Oh, I was not really in my body for most of that day.

It went on into college, where I developed substance issues with weed and alcohol, because I was trying to make my physical experience of the world less painful. I had a bad crisis in 2017. I was at a café, stressed and sleep-deprived, and suddenly I felt like I was floating above my body and couldn’t move. After that, I took leave for mental health reasons, and I saw a psychiatrist, who was really concerned about my dissociation. It became clear to me that I had to find some long-term coping mechanisms, so I became interested in yoga and Buddhism, which has taught me that there’s a deep connection between the spirit, mind, body, and soul. Interestingly enough, dissociating also led me to get a lot of tattoos from 2016 to now, which helped me feel like I’m in control of my body.

2018 was a shift for me. I realized I wanted to be a writer, so I started putting energy into journaling and reading — things that made me feel like my life was more my own. I didn’t need to escape my body, because I was being a bit more true to myself. Recently, I’ve been doing mindfulness therapy and emotional regulation therapy. It's also become really important to share my experience with others, especially trans people, because dissociation can make sexual experiences traumatizing or completely unfathomable. There can be a lot of pain there, because American culture values sex so much.

I think racism can cause dissociation, at least for Asian Americans, because Orientalism is built into history classes and American culture, so it’s easy to see your body and yourself in terms of what white society wants from you. For Black people and Asian people, there’s an expectation of performing labor for white people in this capitalist system, stemming from slavery and indentured servitude.

(she/her), 23, white, Germany, student

My first clear memories where I'm certain I was dissociating were around 12 or 13 years old. I think I've been doing it for a lot longer, but around that time, the splitting of my mother and my then-stepfather was making it worse. The episodes became longer. I didn't want things to be real, so I just didn't feel them as if they were real. At some point, about eight years ago, it didn’t really go away, so now, it’s easier to notice the moments where I don't have it. I’ve been in therapy now for about three years with a therapist that I like.

I didn't want things to be real, so I just didn't feel them as if they were real.

My favorite example of how to describe dissociation is when you're in a dream and you know that it’s not real, but you also don't have full control over it. It's this very vague sense of surreality or cloudedness. I'm too far from my own emotions. When it's a very strong episode, I have to make sure that my senses are working, so I feel different textures, light an aromatic candle, or go outside to get air. Sometimes it helps to do squats. Or sometimes I just give up, take a nap, and just try to restart. Talking about it sometimes just makes it worse.

I don’t think people in Germany are truly aware that this is something that people truly struggle with. Dissociation is not something that people really notice. I just say, “I’m not feeling well. I feel faint, I gotta go home.” It’s hard to explain that it’s really a problem, because it doesn’t sound so bad. It comes across like you’re just a little out of your head or unfocused. It’s kind of shitty, especially in situations where you’re happy and you’d like to be able to remember and take it all with you.

(she/her), 24, Aotearoa (New Zealand), Taiwanese Tauiwi

I started disassociating from a very young age, and I didn’t realize how good I was at it until I came into adulthood. It was the perfect mechanism — I felt I could get by through being an autopilot version of myself. I was quite an anxious child and dealt with depression from a young age, and there was a history of trauma and anger issues from my papa’s side of the family.

In uni, you’re figuring out who you truly are, and at that point in time, things got quite difficult. My father got physically violent. That was a huge time where I just switched off. I couldn’t recall basic memories of what I did yesterday or what I had for breakfast. I kept thinking, Why can’t I get over it? Some people have it so much worse. But going through therapy, I’ve learned that acknowledging your pain doesn’t take away from other peoples’ pain. It’s the first step to your journey to healing.

My beautiful therapist now, who is half-Maori, half-Indian, gave me a Maramataka journal, which is the Maori way of looking at the year, based on the lunar calendar. There are three prompts in it: “What’s going around in your head? What’s going on in your surroundings? What’s going around in your community?” I think that level of unpacking is so helpful because when you’re dissociating, you don’t realize how much you’re taking in a lot of the current world subconsciously. Like, we’re in a pandemic right now, no wonder [you might be] feeling a little bit of impending doom.

I’ve been diagnosed with depression, but I’ve never been diagnosed with dissociation. My therapist, who has told me [in sessions] that I dissociate, moves away from the Pākehā model of diagnosis. [It can be] very helpful in a lot of ways, but it depends on what your therapist or [health professional] is able to do with that information. ●

*A pseudonym has been requested for privacy reasons.

This story is part of our Body Week series. To read more, click here.

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