DDD: Living with Depersonalization Derealization Disorder
First, a quick caveat: I am not a physician, nor counselor or psychologist, and this article deals with my personal experiences with DDD and finding treatment. Consult with your own doctor or care provider if you are in need of professional help.
If I had to pick the most impactful moment of my life thus far, developing Depersonalization-Derealization Disorder (DDD) would unfortunately be the first on my list. Having lived with the disorder for a bit over a year now, one of the most frustrating aspects of this disorder is the relative invisibility and lack of attention it has garnered thus far, both in the general public and in medical communities. It’s time to change this.
This article is meant to be an overview of DDD from a non-professional point of view. It’s intended both for people who think they may suffer from the disorder, and for people who want to expand their awareness about mental health in general. Half of the article (Defining DDD and Living with DDD) is directed at those suffering from dissociative disorders, and half (Describing DDD and Helping with DDD) is intended for a broader audience that want a better understanding of what it’s like to live with, and how to support others.
Go brew yourself a cup of tea (I’m sipping peppermint tea as I write this), because there are a lot of definitions and examples coming up. I promise it’s worth it in the long term.
Ready? Let’s go.
Defining DDD
Depersonalization is a set of symptoms that involves feeling like your identity or self is in some way unreal. This means feeling “out of body”, but also includes other manifestations. Some people feel like an automaton, unable to tell where their thoughts and words are coming from. Some people look into the mirror and cannot recognize their reflection. Some feel like their senses are numbed and missing. Others feel like their memories aren’t their own, or feel emotionless about them.
Derealization is a set of symptoms that are similar, but involve feeling like everything outside of yourself is unreal. A typical derealization response is “I feel like I’m trapped in a dream”, but derealization also often involves changes of perception. Some people see things around them as blurry, lose their peripheral vision, or find things become muted. Others experience an opposite sensory response in which everything becomes overwhelmingly clear and sharp. Perceptions of time and distance become blurred or unsteady.
Both of these fall under the auspices of dissociation. Textbook dissociation is similar to zoning out or intense daydreaming, but as we’ve seen above there are many forms of this, and all involve a disconnection between the person and reality without hallucinations or schizophrenia.
These sets of symptoms accompany panic attacks and trauma, but are rarely studied in a chronic form. Until the DSM-V (the fifth edition of The Diagnostic and Statistical Manual of Mental Disorders, the official diagnostic text used by most US-based psychologists and psychiatrists), this condition was largely ignored and had no appropriate diagnosis. Now, with the DSM-V, we have the official diagnosis Depersonalization Derealization Disorder (DDD). Specifically this entails four criteria:
- Depersonalization and/or derealization symptoms
- Intact reality testing (the recognition that unreal experiences are not real)
- Symptoms aren’t due to another preexisting disorder
- Symptoms cause significant impairment of day to day life and/or significant distress
Describing DDD
I’ve found that in my experience sharing information about DDD, people without it don’t understand the reach of the disorder when presented with the DSM-V definition and symptoms. I’ve struggled for a year to come up with some fragmented descriptions expressing the severity and all-encompassing scope of DDD.
Depersonalization doesn’t always feel like being out of body. It also is accompanied by what Elena Bezzubova describes as compulsive self-observation— an inability to stop monitoring realness, heightened and often triggered by the initial feeling of being unreal. This compulsive self-observation is similar to Illness Anxiety Disorder (monitoring physical symptoms with hyper acuity) and Obsessive-Compulsive Disorder (especially with obsessive checking of symptoms or levels of dissociation). I often conflate it with OCD in my own personal experiences—a tremendous amount of my day involves monitoring myself subconsciously and it interrupting my stream of consciousness.
Dissociative symptoms are perceptive in nature—a change in your perception cannot be simply ignored and unlearned, as it is embodied and instinctive. These symptoms need not cause distress, however, no matter how distressing they are. There exists a space between perceiving depersonalization and reacting to it with anxiety, and starting to find that space has taken me more than a year of work and several medications. For most, that space can take a lifetime to find, but there are behavioral therapy approaches that can help with this (more on this later).
This perceptual shift, obsessive attention, and the contradictions that these bring are the hardest things to communicate to friends, family, and coworkers — along with the high level of distress this causes. I’ve gone through a lot of metaphors before, but one thing that can help a great deal is the concept of dialectics, pulled from Dialectical Behavioral Therapy (DBT).
In DBT we talk about dialectics as equally real opposing forces that appear to contradict another, but in reality do not. We work to reconcile opposing attitudes (like our “rational mind” and our “emotional mind”) to find a middle path, and begin to see things in grayscale (even when our actual choices may remain black and white).
DDD is full of dialectics that when presented together may help paint a clearer picture of our experiences:
- Depersonalization may be an adaptation to distance from unbearable pain, but it itself can cause tremendous mental anguish
- Dissociation can worsen anxiety, but anxiety can in turn worsen dissociation
- Derealization can involve the blurring of surroundings or perceptions, but at the same time involve the heightening or overwhelming intensity of other perceptions.
- Perceptual distortions seem real, while their subjects seem unreal.
- A person can survive countless episodes of DP/DR, yet each episode still can feel new and emergent
- Someone can simultaneously appear present, but be far removed from an experience when depersonalized. Where is my voice coming from while I’m presenting in this business meeting?
One last dialectic, I think, is incredibly important to emphasize both for describing the disorder and for approaching the most effective strategies for coping with it:
It is vital to realize that thinking about and self-monitoring DDD is hazardous, yet reminding oneself of this is itself self-monitoring and can worsen DDD.
This desire for DDD not to be a chronic condition, and to find some way to treat or cure it is, actively makes DDD worse. I’ve seen online support groups teeming with people looking to try anything and everything to assuage their symptoms, but in doing so reinforcing the disconnection that they feel. I’ve seen countless people come back claiming partial remission who attribute this to keeping their mind off of it instead.
This aspect of DDD overlaps with OCD and PTSD, however, in a devious way—alongside those with OCD and PTSD, many DDD sufferers experience hypervigilance, that is, a heightened state of all senses intent on detecting activity or threats. In this case, DDD suffers can become highly aware of their dissociation, and in doing so worsen their condition. The crux of treatment is behavioral therapy to adapt to the disorder, and the approaches from Acceptance Commitment Therapy (ACT) and Dialectical Behavioral Therapy (DBT) tend to address this particular dialectic head on.
Living with DDD
DDD is chronic for many patients. However, some basics of ACT are beneficial in approaching this frightening fact with confidence.
There are two broad approaches in ACT: acceptance of your condition, and commitment to your values and life. Similarly, two powerful tools from DBT are radical acceptance (the complete and total acceptance of something that may be painful), and one-mindedness (acting mindfully and entirely on everything you do). These are not quick skills to learn, and take years to work into the fabric of our lives, but are worthwhile to practice daily.
In order to radically accept DDD, there are several things I’ve found helpful to accept:
- DDD is a disorder of perception. I will perceive things differently from other people, or from how I would normally perceive things.
- DDD is uncomfortable, and sometimes painful. This pain is not permanent, even if the disorder might be.
- Living with DDD may mean having to take control of my life more carefully than I might without the disorder, in order to avoid triggers for anxiety and emotional dysregulation that worsen DP/DR. This effort also ensures I’m living my best, most healthy life.
- Dwelling on and thinking about my DDD or adjacent ideas (like existential questions) is not a good use of my time. It’s better for me to refocus on something of value to me.
DBT also includes a distress-tolerance skill called turning the mind, in which each time your mind goes to a thought you have no need for, you draw your attention back to some object of focus. This is more difficult and painful at first, but over several months becomes second nature. When you find yourself focused on your dissociation, focus on something of value to you. As you find yourself focusing again on your dissociation, bring the attention back quietly without anger or disappointment. If you continue to have trouble, bring your attention to something grounding, like focusing on the taste of your favorite fruit or an essential oil you love the smell of—this in DBT is a distress-tolerance skill called self-soothing. Self-soothing means taking care of your needs and improving your environment to allow you to suffer less when faced with escalated distress.
ACT has a second focus beyond acceptance—commitment. Depersonalization is terrifying because it appears to completely erase your identity, your sense of self, and as a result your values in life. This is not the case; your perception is what has changed. Take for example this interaction with my psychologist:
Me: I feel like I don’t have values anymore.
Psychologist: *pointing to my purple dyed hair* why did you dye your hair?
Me: Oh, because I want to be read as queer visibly, and safe to women and other minorities at first glance as a result.
Psychologist: And what is that?
Me: Oh, that’s one of my values!
This was a major revelation in the moment: we continue to do things because of our life values, even when we feel disconnected from them! If we fail to identify our values, we can look at our automatic actions and the things we prioritize in our lives, and deconstruct our values from our actions. In ACT, one practice we observe is value assessment, also known as “value clarification”. By using this approach (often aided by a worksheet or list of possible life values), we can begin to identify the values most important to our day-to-day life.
From this assessment, we can see which values DDD interferes with, or which values we might be ignoring. ACT then asks that we plan actions based on these values. I find it helpful to identify short and long term goals (or at the least, long term goals) that align with my values and improve my life in those areas. This is part of what DBT describes as “building a life worth living” and is beneficial because it gives us things to focus on beyond DDD that slowly rebuild a sense of identity and pride in our actions, ensuring we’re living our life as fully as possible.
I’ve also found it incredibly helpful to list out the good experiences I’ve had each month—writing a year-in-review letter for my friends made me realize that the year I’d described to myself as being entirely me coping actually was made up of a lot of joyful moments and more initiatives in traveling and trying new things than any other year in my life. I reached out and tried those things as a method of coping; saying yes to pleasant experiences even when I felt awful helped me drown out repeated thoughts about DDD. In ACT, we point out that given the choice between being in distress while engaging with nothing and being in distress while engaging with something pleasant, we should choose the latter every time.
There are pharmaceutical treatments for DDD as well. Studies of patients with DDD show their brains behave differently, indicating a neurlogical or neurochemical component to dissociative disorders. Unfortunately, no pharmaceutical solution exists that is approved by the FDA, and options are still lacking. DDD is often comorbid with other mood disorders, though, so treating any target is a good way to improve one’s life quality. Prescriptions that have been most studied for DDD include:
- Lamotrigine (Lamictal), usually used as a mood stabilizer
- Fluoxetine (Prozac) and other SSRIs, first-line medications for unipolar depression and anxiety
- Olanzapine (Zyprexa), typically prescribed as an anti-psychotic
- Clomipramine (Anafranil), a tricyclic antidepressant with proven results for sufferers of OCD
- Benzodiazepines (like Clonazepam/Klonopin), typically taken as needed for intense anxiety and panic rather than daily, due to their addictive quality
- Naltrexone (Revia or Vivitrol), an opioid antagonist
Which medications will have which effects is a subject that is largely personal, so you should consult with a trained physician. I have found some relief from Lurasidone (Latuda, a drug similar to Olanzapine) and starting an SSRI intended to target OCD (Fluvoxamine). Treating my existing ADHD (with Vyvanse) has helped me stay focused on the important things around me, and less focused on dissociation. Transcranial magnetic stimulation has also been studied and presents some efficacy in treating DDD. All of these, however, are the results of small studies that lack repetitions and attention from the medical community, so our understanding of how to treat the disorder is still inchoate.
None of these are cures. DDD may be chronic and lifelong, terrifying in its intensity, but these skills are ways of dealing with it in the long term, while DBT distress tolerance skills provide a good way of coping in the short term. One other fantastic strategy that has helped me is simple: surround myself with people I love, who know what I am going through.
Helping with DDD
One of the most difficult aspects of helping a friend with DDD is that their level of relative distress is almost never visible except when it is most intense. Outward signs of increased depersonalization and derealization are largely personal from patient to patient. I make an attempt to communicate this to my friends by saying I feel “out of it” as a euphemism. I communicate this directly because quite honestly, it would not get communicated otherwise through non-verbals, etc. Having an (often informal) agreed way of indicating when dissociation is rough can be beneficial for letting others know when they can assist you.
It’s not that easy to help when depersonalization grows more severe—the most important thing for me when I find the symptoms overwhelming is to try to occupy myself entirely. Invite me to play a game. Engage me in something unrelated. Include me in what you’re doing. These are great ways to focus attention away from hypervigilant observation towards a mindful approach. Being alone is also generally a bad thing for DDD. If I’m struggling, even though I’m an introvert, I prefer to be around other people and socialize (or even just co-habitation).
One of the most overwhelming aspects of this is the worry that nobody understands your experience, and that words are largely incapable of expressing the apparent opposites that make up this disorder. Empathy is unavailable at the times you need it, unless you explicitly reach out for help. Lives are lived minute by minute, not by days, weeks, or months, whereas we often view mental illnesses as having periods of intensity that demand more support from support structures, and periods of remission when that support can abate. DDD is constant, and the search for empathy can be grueling on both sufferers and their friends.
For me, it helps also to communicate a list of triggers that exacerbate my DDD. One of these is really generic: I feel worse at night than I do during the day, and mornings are equally tough until I get started with my day. Friends know to check-in around then and make flexible plans during those times. I also have noticed that my DDD (and depression) get much worse after events and other engaging activities, which means friends texting when they get home, etc. can make a big difference.
I think ultimately, though, the best way to help someone cope with DDD is to invite them into your life and engage with them fully, being understanding of their disability, but pushing them to continue to do the things they previously loved and to participate socially with you. Having things to look forward to makes a big difference, and you can help provide that, even in small things like tea and a quick chat. That’s the biggest idea behind coping with DDD. It’s another dialectic: we work to continue our life and ignore our disorder, while we avoid triggers and take care of ourselves in order to minimize the effect of the disorder. DDD is by no means a blessing (it is a curse through and through), but in coping and healing it presents the opportunity to focus on living each day fully and mindfully, and in doing so, building a better life.
