Depersonalization disorder – the invisible disorder
Depersonalization is a disorder that is invisible and unrecognizable to the outside world.
People who live with depersonalization live and work with other people, oftentimes for decades, without anyone noticing their disorder. People with depersonalization seem normal and do not attract any particular attention. Oftentimes, they are successful in their careers or even work in leadership functions, live in stable relationships, have children, pursue their interests, and meet friends.
However, on the inside depersonalization is a disorder that hardly ever grants the affected person any freedom. It influences feelings, sensory perceptions – for these reasons it is omnipresent.
Whoever is affected by depersonalization disorder feels detached from the world, perceives themselves and everything around them as unreal, must constantly look through fog or a veil, struggle to identify dull sounds, make the cognitive effort to shift an altered perspective of their surroundings to the correct one, and gropes one’s path, step by step, along a floor that feels like it is made of cotton wool.
People with depersonalization often use phrases like “as if” or “like” when they try to explain their condition. “It’s as if I was looking through fog”, “as if my ears were filled with cotton”. Using a comparison as a helping construct to describe symptoms is often troublesome for those affected, as it only sheds light on an uncomplete depiction of what those affected experience or feel. The comparisons by far do not live up to what is really going on. On the other hand, using a comparison shows that those affected are very much aware that what they feel corresponds to an inner reality, rather than an outer one.
More often than not, depersonalization is not considered an independent disorder. Until only a few years ago, depersonalization disorder was merely considered a symptom of other psychiatric disorders (mostly anxiety disorders, depression, PTSD). In those cases when psychiatrists and psychotherapists were even able to adequately classify the symptoms or name them, they hardly considered the possibility of depersonalization disorder. Therefore, people with depersonalization disorder were diagnosed into another disorder and correspondingly treated with the wrong remedies.
Although in the meantime depersonalization disorder has appeared in international classification systems as an independent disorder, many doctors are still unaware of its existence. Those affected often take months on end looking for doctors who are able to classify the symptoms correctly and who can provide adequate support. This is the case even though depersonalization disorder is not rare.
Most people experience short phases of depersonalization once or several times during their lives. Stress, fatigue, extreme happiness or intoxication can be triggers for it. About 1-2% of the world’s population are affected by recurring phases of depersonalization or by chronic depersonalization lasting a longer period of time. This makes depersonalization the third most common disorder after depression and anxiety disorder. Many of those affected by depersonalization disorder are also affected by other psychiatric disorders; however, the majority do not manifest other psychiatric disorders. Around a third of those affected by depersonalization disorder experience depersonalization for several years or even decades in a recurring manner; a further third experience their recurring depersonalization turn into chronic depersonalization. The last third experience chronic depersonalization from its onset. This means that overall, two thirds of people affected by depersonalization disorder suffer from chronic symptoms of depersonalization.
Not all of those affected can point to a particular trigger for their depersonalization. Often, depersonalization seems to develop out of the blue and can become chronic over several years without those affected ever being able to pinpoint a reason for it. Therefore, the assumption that depersonalization disorder is really an anxiety disorder, depression or PTSD is not correct.
More recent studies point to the fact that people who see themselves as exposed to constant stress (of whichever kind) are more likely to experience phases of depersonalization (see for example http://www.report-psychologie.de/news/artikel/depersonalization-bei-jugendlichen-haeufiger-als-erwartet-2014-12-16/). It is possible that depersonalization is also a symptom that protects people from too much stress.
Depersonalization as a dissociative disorder
When it comes to the symptoms, depersonalization is part of the spectrum of dissociative disorders, that is disorders in which perceptions of time, space and the self become mixed up or are even dissolved altogether. Those who are affected by depersonalization have a hard time perceiving themselves as holistic beings in a particular space at a particular time. They often experience themselves as being internally fragmented and have difficulties to understand the unambiguity of time and space.
For those affected by depersonalization, an experience made only minutes ago can turn into a memory from a long-gone time. People with depersonalization can have difficulties locating themselves or objects in a room or recognizing a room from the correct perspective, because often they cannot perceive things as three-dimensional anymore. Those affected by depersonalization often watch themselves from above and feel like a robot is acting for them. They might also be able to feel what a rock on the ground feels as if they themselves were the rock, as the distinction between subject and object is no longer valid for them.
While many people try to achieve such feelings and experiences through drugs or other intoxicating substances, those affected by depersonalization experience their own feelings and perceptions as a constant nightmare that never ends.
Depersonalization is often referred to as a philosophical disorder (see for example: http://www.deutschlandfunkkultur.de/eine-wand-zur-aussenwelt.1067.de.html?dram:article_id=242124). Unlike any other disorder, depersonalization disorder makes it clear that our perception of what we believe to be our selves and our surroundings is only a construct, an achievement of resistance of our brains. Depersonalization also makes clear that “normal perception” is only ONE form of perception, reality could also be completely different. Therefore, it is not surprising that people with depersonalization spend a lot of time thinking about the nature of reality and which role and space they themselves have within it.
Adaptive achievement of people with depersonalization disorder
People suffering from depersonalization disorder accomplish an astounding degree of adaptive achievement in order to be able to exist in a world whose perception and experience they no longer share. This adaptive achievement also has negative effects on those affected by depersonalization, as it requires constant and significant effort. As such, people with depersonalization do not only suffer from the effects of the disorder itself, but also suffer from further discomforts that only develop because of depersonalization. On this page, these are referred to as accompanying effects or co-symptoms of the disorder. These co-symptoms differ from person to person and cannot be described here to their full extent:
Due to their mostly dull or foggy perception, people with depersonalization often need to concentrate particularly hard in order to be able to follow a conversation or to continually be able to work on a task. The constant tension and heightened concentration can lead to headaches, chronic fatigue or carelessness. During periods of severe depersonalization, those affected are sometimes not able to pursue a regulated activity at all anymore.
Because of the affected person’s feeling that everything happens automatically, like a robot acting instead of them, also interactions with other people can be rendered more difficult. Those affected often feel lifeless and have the feeling of only performing on stage in front of others, because they do not feel involved in situations with their actual selves. Because of this, many people with depersonalization retreat from social life. In times of severe depersonalization, it can happen that those affected cut ties with others completely.
Due to the dissolution of three-dimensional perception of space, people with depersonalization can have difficulties locating themselves, other people or also objects in rooms. This can lead to walking difficulties, constant bumping into things or trying to grasp thin air. In periods of severe depersonalization, also falls or accidents can occur.
Due to the dissolution of the continuity of time, people with depersonalization sometimes have a harder time remembering things or the past. This leads to people with depersonalization disorder needing to study learning content several times. It can also lead to past events no longer being accessible to them. Therefore, people with depersonalization often avoid small talk about past events due to the fear of others noticing that they only have incomplete memories. During times of particularly severe depersonalization, the ability to remember may be so strongly impeded that those affected may have the feeling of not having any memories at all.
Finally, the condition of depersonalization scares those affected by it. People with depersonalization can have the feeling of going mad; they are scared of hearing voices or fear being put into an insane asylum for the rest of their lives. Others complain about strange bodily experiences like constant feelings of chocking in the neck or the feeling of suddenly going completely deaf or blind. For some of those affected, the fear caused by depersonalization is even more severe than the symptom of depersonalization itself.
Treatment of depersonalization disorder
Thus far, there is no guaranteed treatment method against depersonalization disorder. Also, among psychotropic drugs there are no medications that are specifically tailored to depersonalization disorder. In individual cases, medications that are approved for other disorders have helped those affected (off-label-use). Psychotherapy can support those with depersonalization disorder to better understand themselves and their disorder, and finally also to overcome the symptom. In cases of depersonalization it is therefore highly recommended to get into contact with a psychotherapist. However, it is important to find a person that is already familiar with the symptom of depersonalization.
Also, several methods of self-treatment and self-care have proven useful in coping with the disorder on a personal level. These very methods are the focus of this website. The website takes very seriously the perceptions and feelings of people suffering from depersonalization disorder and tries to introduce relevant methods and approaches.