Diagnosing a Depersonalization/Derealization Disorder

People with depersonalization/derealization disorder know better than most that feeling disconnected from yourself and your surroundings can be disturbing and difficult to cope with—especially if you have a hard time explaining your experience to your doctor or those around you.

Depersonalization/derealization disorder affects an estimated 1 percent to 2 percent of U.S. adults at some point in their lives, according to the Cleveland Clinic. Yet, the general public doesn't have as much of an awareness for the condition as they do for other disorders that occur at a similar rate, such as obsessive-compulsive disorder (OCD).

Although experts tell us we all may experience rare and fleeting moments of depersonalization or derealization—that is, feeling disconnected from and unfamiliar with ourselves or our surroundings—for people with depersonalization/derealization disorder, those feelings could become chronic, either persisting constantly or occurring in recurrent episodes.

The United Kingdom–based charity Unreal seeks to spread awareness of this disorder, as well as provide support for sufferers. Joe Perkins, a trustee of the charity, said patients he works with have noted challenges in getting diagnosed due to a lack of awareness of the disorder. Perkins, who has had depersonalization/derealization disorder for the past 14 years, experienced similar challenges.

"The awareness of [depersonalization/derealization disorder] in general, and even in medical circles, is really, really low," he said. "So, myself and the people that I've spoken to who also have it, we've had the experience of having these weird sensations, not knowing what they are, and then having years and years of misdiagnosis and people not believing [us] and trying various medications that just aren't appropriate for the problem, because no one knows about it."

Perkins said that his perception of public awareness of depersonalization/derealization disorder is lower now than it was 14 years ago when he first started experiencing symptoms. For several years he searched for answers as to why he felt deeply disconnected, as if he was living on autopilot and observing life happening to him from outside of himself. He said he had a lightbulb moment when he discovered the term "depersonalization" and found its symptoms matched his lived experience.

"You kind of become the de-facto expert in the condition—you have to kind of give yourself that medical knowledge and become a sort of makeshift psychologist," Perkins said. "And you literally have to pitch the experts, 'I think I have this. I tick all the boxes. I know you've tried to diagnose me as, you know, anxiety or depression or whatever, but this is more accurate. This is me in this list of symptoms for something else.' You have to try and find someone that actually believes you and who has even heard of it, let alone has the expertise to diagnose and treat it."

Shaun O'Connor, who developed and then recovered from depersonalization/derealization disorder from 2005 to 2007, said he found that he had to become his own advocate and expert in depersonalization/derealization disorder due to a lack of specific information available on the disorder itself, and how to recover from it. Since then, O'Connor has authored "The DP Manual," a self-help book he wrote in hopes of helping other sufferers through sharing his experience of working toward recovery.

"For me, it was like somebody had put a pane of glass between me and the world, or like I was in a fishbowl and just watching everything happen," O'Connor said of his symptoms. "As far as my surroundings went, the world looked like it was in 2-D. And I felt like I wasn't real. I felt like people and places around me weren't real. It can literally feel like you're in a dream because you're so disconnected from the world around you."

O'Connor said because no one knew what was wrong with him, he was in constant fear he was going crazy—until he found the term depersonalization online and began engaging with others with the disorder through online forums. Ultimately, he found that constantly focusing on his symptoms and hyper-focusing on the ins and outs of the disorder created an anxiety loop, which only served to reinforce his symptoms.

"Eventually I started to research and practice cognitive behavioral therapy techniques on my own," he explained. "And I started to focus my attention away from the symptoms deliberately instead of focusing on it all the time."

O'Connor noted it wasn't easy at first, but this approach eventually helped him to fully recover.

"I realized after a couple of months that the symptoms were no longer 24/7," he said. "It had ups and downs and it seems to be dependent on my habits and my thoughts and my behaviors."

The causes of depersonalization/derealization disorder are not yet fully understood, though it's believed individuals who have experienced severe trauma or stress, substance abuse issues, certain personality traits or a history of anxiety and depression may be at a greater risk for developing the disorder.

Treatment for depersonalization and derealization is typically only required if the feelings become chronic or if they start to come in recurring episodes. The Mayo Clinic reports that psychotherapy is the primary treatment for the disorder, though medications are sometimes used for additional help. Since derealization and depersonalization are marked by feelings of disconnection, mindfulness practices are often used to help people start to feel reconnected to their minds, their bodies and the world around them.

Despite living with chronic depersonalization/derealization disorder, Perkins said he remains hopeful recovery is possible because of how many people he has seen eventually find significant improvement in symptoms and, in some cases, full recovery.

Even when there's no end in sight, Perkins said he has managed to cope by finding community with others who also have depersonalization/derealization disorder. One way he does that is by connecting with others through the free peer support groups facilitated by Unreal.

Since depersonalization/derealization disorder often leads to physical and emotional isolation, it's no surprise people suffering from it may also suffer problems with daily responsibilities and relationships, including romantic and sexual connections. Some medications used to manage symptoms may negatively impact sex drive as well. If you find that your medication is causing these side effects, talk to your doctor as they can adjust your dose or offer alternative medicines if necessary.

Though maintaining relationships while feeling disconnected is an effort that comes with its fair share of challenges, Perkins said he encourages those with depersonalization/derealization disorder to resist isolating themselves. He believes meaningful relationships, even of the romantic kind, can thrive as long as there's an abundance of communication.

"Interpersonal relationships have probably been the hardest because the honest truth of it is that feelings like happiness and love, you can't feel them the way others feel those emotions," Perkins said. "But, I would say you can kind of experience those emotions intellectually rather than actually feeling them."

He recommends that the best approach to take in a romantic relationship while living with depersonalization/derealization disorder is to be honest from the start.

"I've been with my partner now for five and a half years, and that's the way we've kept going," Perkins said. "If she has a question about my condition, she asks me. And I answer, as honestly as I can, even though that's quite difficult to put into words. So I don't think people should give up hope of finding a romantic relationship if they have the disorder as long as they're honest from the start and you communicate and try to understand each other."