According to DSM-5 (the psych standard operating procedure manual), derealization (DR) falls under the dissociative disorders category.
A. The presence of persistent or recurrent experiences of depersonalization, derealization or both:
Depersonalization: Experiences of unreality, detachment, or being an outside observer with respect to one’s thoughts, feelings, sensations, body, or actions (e.g., perceptual alterations, distorted sense of time, unreal or absent self, emotional and/or physical numbing).
Derealization: Experiences of unreality or detachment with respect to surroundings (e.g., individuals or objects are experienced as unreal, dreamlike, foggy, lifeless, or visually distorted.
While I’ve spent the last eight years trying to sort it out in my mind, it seems a bit absurd to call it derealization, when in fact it made me come to life in a different way. My kryptonite became my superpower. Let me see how I can explain this…
What is DR?
For me, it is first recognized as a visual distortion, but the sensations are not tied into sight alone. It is a full body experience. All senses are on high alert. I feel as if I am floating just slightly above my body. The detachment is that of a dream, but with a clarity you wouldn’t expect even in a lucid sleep state. Everything is crisp and clear. My eyes pick up every vein of each leaf hanging on the branches of a tree. The feathers on the wings of the birds as they fly past. Every color, more vibrant. The layers of sound, where my ears separate out each tone. Sensory receptors on my skin notice every shift in the atmosphere, the position of the sun, the movement of the clouds, the direction of the wind.
As you are reading this, you might think that it sounds extraordinary, and it can be. But if you don’t know what is happening to you, it can be fucking horrifying.
The first episode of DR came after a series of panic attacks. I was diagnosed with generalized panic disorder (GAD) and agoraphobia. Psychologically, DR is a way for your brain to protect you. It quite literally shuts you off from the world by pulling you back and disconnecting you from that which your mind is perceiving as dangerous. However, there are many instances where people report DR that is unrelated to an anxiety disorder or PTSD type situation. Sometimes it’s reported as an effect of using a hallucinogenic substance. And I’ve even seen articles where it has been tied into spiritual awakening.
So, what gives? Could this really just be a classic case of a brain glitch? Or is there something more to it?
When I was first diagnosed, I was incapacitated. In my mind, leaving my house was comparable to jumping out of a plane with no parachute. I would force myself to do it. Required lots of internal dialogue, and although it was a nightmare, I made up my mind that I was not going to let this thing kill me. But believe me when I tell you, it was trying to kill me.
Activities as simple as driving down the highway or going to the mall were monumental tasks. The fluorescent lights in the stores would sear through me, so I wore sunglasses everywhere I went. The sounds were so loud I felt like I needed earplugs. When someone or something would pass by me, I felt like I was under attack, my body flinching to avoid contact.
Twenty steps back for every one step forward. In the first days, my family was concerned, but they didn’t realize what was happening inside my head. They thought I just needed a little time to reset, and I’d be better. Their patience started waning after a few months in, and I wasn’t even close to getting back on my feet. For some people, an episode of DR lasts only a few minutes. For me, I was experiencing it every waking moment. Months turned into years.
If I had to hear one more person tell me how fucking fantastic my life was, or that I should just “relax…take it easy…stop stressing,” I was going to drive into the bay. (I’m being dramatic, drowning is a fear of mine, but you get me, right?) So, I did what any other respectable perfectionist would do, I faked my mental health. “Yes, I’m feeling great. It’s not even bothering me anymore.” For the record, I don’t recommend this move. Now, not only was I living in Alice’s Wonderland, but by denying the issue I was even more isolated from everyone and everything.
Most of my fears were tied into health anxiety. I was constantly under the impression that I was actively dying, despite being robustly healthy. I guess looking back that’s a silly thought, since we are all technically dying and living at every moment. But eh…rabbit hole.
During the span of a few years, I had likely seen every specialist in the healthcare system. All raved about how “normal” I was. That was interesting to hear, considering I felt enormously abnormal. A career in medicine ended up being a curse rather than a blessing. I knew too much. Every rare disease, every potential organ system dysfunction was up front and center. My brain subconsciously took inventory of what was happening in my body at millisecond intervals. If the pace of my heartbeat increased, or a breath was slightly delayed, the chain reaction was initiated, and I would find myself on the way to a nuclear meltdown. Any and every symptom was a surefire sign that I was about to face my last moments on this Earth. But alas, here I am to tell you this story.
Nothing helps ease health anxiety like the doctor finding a tumor in your brain. Initially, there was a suspected link between my panic attacks and my suddenly elevated thyroid hormones. After ruling out a problem with the thyroid gland itself, the investigation moved on to the next possible culprit, my pituitary gland. Right smack in the center of my brain they found a small adenoma or benign growth. I was strangely relieved that they found something. In that moment I gave myself a break from feeling like I had fabricated this all in my mind. However, this was short lived.
While there were talks about seeing the neurosurgeon, the first step was to monitor me for a bit before jumping into any type of invasive intervention. Somehow, just as quickly as my test results elevated, they suddenly dropped back into normal range. At the next scheduled CT scan of my brain the small tumor was inexplicably gone. The doctor seemed a bit shocked by this. He said it was common for a growth to stay the same size, or sometimes increase a bit, but for it to disappear completely was surely unexpected. Somehow, my medical emergency no longer existed. With no physical explanation for my DR symptoms, I found myself back in the category of certifiably insane.
Trying to explain DR to someone who has never experienced it is pointless. The only thing it accomplishes is making you feel even more alone than you already do. Thankfully, I did have one therapist who was able to identify what was going on, correctly diagnose it, and help me learn to cope. For him, I am forever grateful. I knew he understood when he was able to explain it to me before I even started my rehearsed spiel. He assured me that I was not losing my mind, and that what was going on could be explained entirely by science.
Do you know me? Maybe not. But I love science. So yessss, this was the best news anyone could have ever told me.
I truly believe that we could save lives by simply teaching the science of depression and anxiety to those suffering from it. Education is the key to our health.
While it may be an easy fix for a therapist to throw medication upon medication to their patients, it isn’t always the best move. Why not first try to educate them? Explain the origin of their issues and how this physiologically changes the chemistry in their brains. We all went to school for a reason, let’s not have that information go to waste. In my opinion, the first step to recovery in any medical case, psychological or physical, is understanding what is going on in our bodies. Only then, can we begin to make the right steps to progress and heal.
To be clear, I don’t want this to get twisted. There are people who require and benefit from medication for their conditions and there is no shame there. However, my intention is to point out that a therapist who is willing to take the time to sit down and explain the way our brains are wired would find more success with their patients than one who is incapable of doing so. In my case, finding a therapist who was educated and had the ability to educate was rare. And I assure you, I had enough encounters with different psych professionals to make this claim.
DR was terrifying for me. My brain feared it so much, that whenever it perceived the sensation, it immediately tried to redirect the thought. You might think… “Nice work brain, that sure was a close call. You almost fell down that DR hole again.” Unfortunately, good ol’ science comes back for the win. This is not how our minds work.
By redirecting an anxious thought, you are basically confirming to the brain that it is warranted in continuing to fear that thought. In this case, avoidance was validating that DR was in fact terrifying and that it would lead to my demise. This is where I needed to do some brain workouts, bump up my mental muscles. Using cognitive behavioral techniques, I was directed to force myself to face my DR. Not only was I about to face it, but I was encouraged to let myself be completely engulfed.
My therapist even went as far as having me make recordings, in my own voice, saying that I would never return to normal, and as a result of my anxiety disorder I would surely die. I listened to them over and over, tears streaming down my face as I pressed play again and again. Until one glorious day, I started the recording, and I had no reaction at all. I played it once more. This time I began laughing at how ridiculous I sounded. I was completely desensitized by the thought. This was my turning point.
Coming to terms with my DR has taken me years. I remember when I was first diagnosed, and I signed on to every reddit thread I could find. People would tell their stories of how long they suffered, the length of their episodes, and how they got through it. Most were short term. Unrealistically I set deadlines for a cure. I would be better by the Fall, by next year, by the time I was 35. Yet, here I am, almost eight years later, and my DR has never entirely resolved. But while it may still be present, it doesn’t control my life anymore.
How did I do it? I finally smartened up and realized it was as simple as initiating a change in perspective.
I have an old family friend, who also happens to be a spiritual counselor. In one of our chats, she gave me some life-changing advice. She suggested that maybe it would be more useful to see DR as a gift, the superpower that it is, rather than the handicap that had been holding me back this entire time.
What a novel idea? Get creative. Put in a little effort and change your perspective.
In my journal entry dated January 16, 2021, I wrote in red pencil “the energy inside has no outlet, get it out. CREATE SOMETHING … ANYTHING.” And so, I underlined my statements several times, and I did just that. It started with reworking what living with DR meant to me.
While my transition started to amp up during this time, I was still floundering to find the path. Thankfully, in the last few months I’ve found my way home and it feels so good. Being truly happy after being miserable for so long is life’s most natural high. Nothing can compare. I honestly didn’t even recognize the depths that I was in because I had been living there for so long. But I am out, and I am alive. And now, it is my calling to lend a hand to anyone who needs it.
Derealization, disconnection. This is no longer what this sensation is to me. Instead, it is something miraculous. I used to fear what was going on because I felt like I was keeping myself apart from the world, safe behind the screen. Peeking through the window with the glass pane in between as protection. But the veil has fallen, and my worlds have combined. The beautiful thoughts that are created from deep within my soul are woven into the physical world that is in front of me. The line is dissolved, and I am creating my future, willing it all into existence.
My spell check is confused, but the word makes the most sense for what is happening here. The anxiety melts away when I realize that I can float between my greatest dreams and the world around me. They are one and the same.
I am finally free. You can be too.