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My Recovery Story

First, let me say that the reason you'll see more bleak stories and comments than positive ones is that once you've recovered, you're back to living your life and you've moved past it, so generally speaking you don't feel like taking the time to revisit and write about your hellish experience. But, I did promise the universe that if I made it out, I would do my best to help others like myself- so here goes.

Technically, my story started as a kid, as I was always a fairly high-strung person. I HAD to succeed at every drawing I made or spelling test I took, and was devastated if a teacher scolded me. I didn't know it then, but I've ALWAYS been anxious. My first brush with DPDR (like many people) happened when I was around 13 and I smoked weed for the first time. Like the rookies we were, my friend and I each smoked almost a WHOLE joint. I don't know if it was laced with something, or it was just WAY too much, but before I had finished I was spiraling into this "weird" sensation. I felt totally out of body, it was difficult to just take a few steps. I thought I was losing my mind. I don't remember much, but I remember throwing up in the toilet and thinking I had died and gone to hell. It was intense for a few hours, but gone the next day. Thankfully, I thought no more of it for almost a decade.

In college, I had my first full blown panic attack. I remember trying to study for a final, and I kept feeling this cold wave creep up and go away, a wave of what I could only describe as the most intense, gripping, pure horror and dread. The next day almost immediately after the final, the "cold" came and stayed. I felt "out of it," for hours on hours, and was once again convinced I had "gone crazy." I was completely panicked, terrified and confused by what I was feeling, a deer in headlights. I was a psychology major, and I knew "panic attacks" could make your heart race, your palms sweat and a feeling of "impending doom" but this felt like SO MUCH MORE. It felt otherworldly, supernatural even. It felt like reality itself was about to collapse. I thought of the concept of "I" or "me" and the horror intensified. It was like those concepts were suddenly completely alien. I felt like I was on autopilot, watching myself go through the motions. I felt entirely disconnected from myself and from reality. It felt like what I imagine a painful psychosis felt like- these are what I have come to call depersonalization and derealization (DPDR). I remembered years ago when I had my head in the toilet and kept repeating "I've died and gone to hell."- it felt like that. Words really and truly cannot describe it to the intensity that I felt it, but if you've experienced it (which is why you are here), you know exactly what I'm talking about. Based on what I knew about panic attacks, they could only happen for minutes at a time. This didn't go away. It didn't ebb or flow, it was just a constant, sheer terror. I was beside myself. I rushed to get an appointment with a psychiatrist, and he said it was a panic attack, and that a bit of Xanax would make it go away. Desperate and none the wiser, I said sure, I'll try it. Xanax didn't help, it somehow just made me feel even more detached, but at least slightly sedated. Thankfully it was Spring Break, and I was heading home the next day. As I wasn't feeling any better, I got an emergency appointment with a psychiatrist. He also said it was panic attacks, and if the Xanax didn't do anything, let's try Klonopin. He assured me that "weird" feeling I was having was just part of the panic attack, and I had not gone insane. Thankfully, the Klonopin did help- not immediately, but over the next couple of days, I started feeling more "normal." Badly shaken, but getting better. I stayed on that low daily dose of klonopin for 5 years straight, uneventfully.

Fast forward to me in my mid 20's, living normally. I had a highly stressful job, and I think that constant level of stress was pushing my mind toward what was to come, but other than that, I was fine. I decided to take an edible with my boyfriend one night. I had dabbled with weed and other drugs in college and was fine (though always a bit wary), so I thought I would be okay. I was NOT. It all came rushing right back. "I'm just too high," I told myself, "it'll go away when I come down." That was not the case. It stayed with me for the better part of a year. I had good days and bad, but it was always there, always tormenting me. I had one therapist who didn't help much, she seemed to think it was all related to my stressful job, and if I got a new one it would go away. I did get a new, less stressful job, and it did not go away. I was slipping, struggling through moment to moment, crying every day from my terror, turning into a mere shell of my former self. I had pulled back from seeing family, going out, doing much at all. Feeling unable to cope and go on, I reached out to another therapist and began the real work.

Relief was not immediate. It took weeks or even months before the pieces really started to click in to place. Slowly, I started having "aha!" moments (many of which you'll read below) and little by little, I started to recover. During my year and some change of actively being in therapy, I also devoured every single article, YouTube video, DPDR blog (including this one), book, you name it that I could find about DPDR, as well as some about panic attacks and OCD. Reading that other people experienced the same weird, rare thing as me made me feel reassured. But eventually, I realized that obsessively reading about DPDR was kind of a crutch, and moved on to focusing on more productive things.

For me, DPDR is a symptom that is part of panic attacks, but it can also come and go as a lingering feeling on its own. It's generally associated with trauma, and for some time I fixated on trying to understand what the heck my trauma was, but I found that for me, that wasn't all that important. For me, recovery was about trying to make more "good" in my life, and focusing on that. Eventually, I moved past the intense personal hell that was my DPDR and got on with my life a changed (and I think better) person. Here are some of my important takeaway points and tips for you if you are suffering from DPDR, panic attacks, OCD, or any combination.

Key Takeaways:

  1. Therapy- I was incredibly fortunate to have found such a fantastic therapist that I clicked with, and who truly seemed to understand what was going on, even more than I did. She was able to somewhat talk me off the ledge in the beginning and reassure me that I was NOT crazy, I was NOT in danger of going insane (any more than the next person), and all of the hellish otherworldly things I was feeling all boiled down to JUST ANXIETY. She taught me that anxiety really is such a powerful beast that yes, this (along with some unhealthy thought habits) is what's causing my disturbing thoughts, feelings and sensations. Here are some of my most valuable sub-takeaways from therapy:
      1. DPDR is linked with the "obsession" factor of OCD, in my case. I had never before thought of myself as having OCD or being obsessive- it had genuinely never occurred to me. But she helped me examine my thought patterns and come to understand I have some extremely "sticky" thoughts- they play in my head over and over and over, almost always against my will. Looking at DPDR from an OCD point of view helped me employ some of the tactics for managing OCD- mainly learning how to let the thoughts come, acknowledge them, and let them go without needing to act on them. For me, "acting on them" was experiencing the subsequent terror that came along with the thoughts. Our brains are designed to put everything into language and chatter constantly, that's how we make sense of the world. Once you can see the thoughts as just a byproduct of your chattering, word-machine of a brain, it takes some of the power away from them.
      2. Life isn't supposed to be all sunshine and rainbows, sometimes its supposed to suck. It's literally part of the human condition to be miserable sometimes. You are miserable, and that's normal. Every single person on earth experiences their own personal hell, to some degree. Don't compare your hell to another person's hell that seems less severe- its ALL relative. You are experiencing this hyper intense breed of misery because you are an exceptionally intelligent and sensitive being. You are special.
      3. I AM NOT MY ANXIETY. IT is a part of me, a part of my brain, but that's not ME. I am observing my thoughts, therefore I am ME. This "observing self" is the real you, not your anxious thoughts. I also highly recommend The Power of Now by Eckhardt Tolle, which helps you get in touch with the "me"- a concept so eerie, disturbing and foreign in the throes of my DPDR. I can now think of my anxiety as this obnoxious little gremlin in my brain, where I can annoyedly say "oh f*ck, there's that little yapping troll again," roll my eyes and move on.
      4. This too shall pass. I came across this old adage time and time again, and had always convinced myself that no, it might not pass, I COULD be an exception who eventually l couldn't take it any more and committed suicide. Truth be told, this was my biggest fear. And you know what, it IS possible. It's not the most helpful to assure yourself "no, no, that's not possible," because you know what, it IS. It's also POSSIBLE that your DPDR doesn't go away- not likely at all, but possible. If it doesn't, that just means you have to find a way to build more life worth living around it. And... when you stop being so preoccupied with "will it ever go away?" IT DOES. My OCD also made me feel like I didn't have control, I was terrified I might throw myself in front of that Subway, or do any number of gruesome, horrific things. That's just the freaking OCD talking, and you will learn how to ignore it. Those gnawing, repetitive thoughts are at best, annoying and at worst, earth-shatteringly terrifying. This miserable thing you're dealing with, it WILL eventually fade and be very manageable- even if it doesn't seem like it. Sometimes, the best you can do is just survive. I remember even telling myself that at times. There were days where every minute, every hour felt excruciating. I thought "I don't know how much longer I can do this." All I could do was just hang on, wait it out… and it worked.
  2. DPDR and anxiety is kind of like grief. Draw a small circle on a piece of paper and fill it in. That black dot is the grief/anxiety. Right now, it might feel like all there is, all consuming. Now draw a few more concentric circles around the black dot. Those circles represent getting a job, a partner or friend, watching a movie you like, eating your favorite food, going for a scenic hike, cuddling a puppy, etc… you get the point. Now, there's more to your picture than just the dot of grief/anxiety. The point is that the bad thing doesn't ever go away- it's always there, and it'll always be in your past. You just start to feel better because it becomes a smaller and smaller part of your whole picture the more you continue to try to be happy. Trying to get out and do things you love might not feel great at first, because you're still grappling with the uncomfortable thoughts and sensations and still don't feel like your old self, not able to fully enjoy. But keep with it, that's all part of the healing process.
  3. Supplements, medication and physical health. Try to correct the chemical imbalance-If you have insurance and/or the means to see a medical professional, I highly recommend you do so. Every since my panic attack in college I had been on that low dose (daily) of Klonopin. Years later, my daily dose didn't help, so I wanted to seek an alternative. My therapist recommended a psychiatric nurse practitioner friend of hers (through Mensah Medical, if you're in the Midwest), who specialized in healing mental illness through supplementation as opposed to nasty drugs with crazy side effects. None of the drugs seemed to work, or had terrible side effects. My doctor also had experience weaning other people off Benzos- which is brutal by the way. After a battery of blood and urine tests, she explained that I am an undermethylator- which very basically means that my body doesn't process and metabolize things like it should, causing a variety of issues like obsessive thought patterns, high anxiety, high achievement drive, and a bunch of other stuff. Look it up. I truly believe this chemical predisposition is responsible for my severely anxious tendencies. I've been on a hefty supplement regime (zinc, vitamin C, n-acetyl-cystine, methyl b12, vitamin E, vitamin D, omega 3-s, GABA) for almost a year now, and around month 6 saw dramatic improvement. I HIGHLY recommend you research undermethylation, and consult a physician who will test to find out what's going on in you, and work with you on supplementation. It's NOT a fast fix, but I firmly believe the gradual correction of my body's imbalanced processes is a key player in my recovery.
  4. Acceptance and Leaning In. My therapist gave me a workbook on Acceptance and Commitment Therapy (or, ACT, a form of Cognitive Behavior Therapy), which basically just means you learn how to accept what you're feeling, and commit to changing your behavior. You're going to learn how to accept this thought/sensation of "I feel disconnected from my sense of self, everything feels unreal, feel like I'm on autopilot, watching myself, I feel scared" and learn how to not let it crush you, simply put. I highly recommend getting a book and/or reading about ACT online, and doing some practice exercises.
  5. Learning to "sit with" the uncomfortable thoughts and sensations. This concept seemed really foreign to me in the beginning. When you're terrified of something, you want to avoid it. The thing is, you really can't avoid what's plaguing you (like telling yourself not to think of a pink elephant), so you'd better learn to deal and to be able to experience it without attaching such negative emotions. I know it sounds far-fetched and like a bunch of hippie nonsense, but I promise that with practice, it's possible. It's all about training yourself to not be so affected by your thoughts. Let them come, experience them, let them go.
  6. Mindfulness and Meditation. Mindfulness basically just means being present in the moment. This is related to acceptance and "sitting with" your uncomfortable thoughts/sensations. I downloaded the Insight Timer app to my phone (for free) and started doing random guided meditations EVERY DAY. Multiple times a day. They walk you through different images, different parts of your body to focus on. It all helps you reconnect with your sense of "me," your sense of being in your body. There are even meditations for guiding you through a panic attack. I'll never forget the sense of achievement I felt when I was in the midst of an attack, I did the meditation and I got to fully experience (probably for the first time) feeling the panic wash over me, and then GO AWAY. In the past I would just pop a klonopin to take the trembling, unbearable edge off and wait for the feeling to dull a few hours, days or even weeks later. But this time, I FELT it release. I like to think of meditation as mental weightlifting. Your mind is a muscle you train. You can't get a 6-pack in a day, not even in a month. It takes TIME and DEDICATION to get anything worthwhile. And you know damn well your health and your life are worthwhile.
  7. Recovery is not linear. Just because you have a good day (or hour), followed by a panic attack or an intense DPDR spell does NOT mean you've failed and you're back to square one. It's all part of the process to have your ups and downs. Even now I still have my uncomfortable days. But what would previously have me housebound, completely withdrawn and able to do nothing but obsessively research DPDR online in hopes of finding some reassurance, I'm now able to push through and continue to go about my life. In time, the bad spells will become less frequent, AND you'll increase your tolerance for what you can endure to think/feel without being negatively impacted.
  8. You're "waking up," and it's infancy all over again. At age 27, I'm JUST NOW re-learning how to live after coming in to touch with some heavy, life changing shit. You're not just bopping around your life without a care in the world, blissfully unaware of the absurd, unknown nature of your existence and the universe. Not anymore. Welcome to club of Being Highly Aware of Real Heavy Sh*t. I used to (and still sometimes do) look at the blissfully unaware people like my sister, think how lucky they are, how they completely take for granted being comfortable in existing, they go about their day and never have to grapple with these profoundly disturbing existential questions. How nice and easy life would be to only be aware on that level. But guess what… there are a LOT of people in our club. The most intelligent philosophers, artists, writers and scientists of all time are also painfully aware, just like you. The nature of the "self" IS really really weird. And like you will, they found ways to make peace, even develop a sense of WONDER and AWE at what now terrifies you to your very core. It all just takes time and adjustment. You've added a level of richness and understanding to your life that some people could never experience, no matter how hard they try. I know it doesn't seem like it now, but in some ways, it's a gift.

You WILL get better. You WILL experience joy, peace, calm and the simple pleasure of being comfortable existing- all of which DPDR temporarily robs you of. You just have to accept that it is what it is right now, and you're going to have to work for your recovery.

I still suffer from uncomfortable, obsessive thoughts from time to time. I still feel that cold, eerie DPDR alternate reality creep up a little, every now and then. I still consider anxiety, OCD and DPDR mental issues I struggle with. But I also have a loving family, an amazing partner, a beautiful home, an adorable kitten, a well-paying job, hobbies I enjoy, and an excitement for what's to come in my future. Stick with it- you can do it. You're here because you want to recover. I hope you use my tools and find some of your own to reclaim your life.

xo,

Lolo
 

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Thank you for your beautiful story and the knowledge you have obtained! I can't believe nobody responded to you after 5 days. Did they not read it? Do they not believe it or are they so engulfed in their own suffering that they don't even want to believe cure is possible? Or living a nice life even with dpdr is possible? I was certainly that person for many years. They will learn and I hope take to heart your advice and experience.

I too am at the point of realizing that the "Self", the only real and true Self, is beyond the mind. Call it god, pure awareness, loving unlimited consciousness, or whatever you want but that is all that has ever and will ever exist. The mind/ego doesn't even exist yet it SEEMS to torment us with fear and anxiety and other negative emotions. It's ridiculous really.

Enjoy life and take care!
 
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