# My name is Ana & I've had a DPDR disorder for over 10 years



## ana (Aug 14, 2018)

Hey guys,

I'm writing this hoping that by the time I finish I will feel at least a tiny bit better, at least for today. Please excuse the mistakes - English isn't my native language, and I don't wanna let my OCD make me check it for mistakes over and over again. Also, please excuse the length of this post. It's been years and years and years since I talked about DPDR in detail with anyone. I've been feeling really down lately & I think I need to let it all out.

*HOW I GOT A DPDR DISORDER*

Basically, I've been suffering with DPDR for 10 years, 3 months and about 9 days. I was diagnosed with it a year after I started experiencing it, in May 2009. Ever since then I've been taking medication to reduce anxiety.

As I can see, my story and what triggered DPDR is quite similar to the stories of many other people. I've always been quite sensitive and emotional, very much into different forms of art, loved reading books and spending time on my own. During my final year at high school I've been under a lot of stress - had my heart broken a couple of times, been anxious about the upcoming exams and the need to choose which university to go to, partied quite a lot (been drinking alcohol of course and even tried drugs a few times).

It all happened at my best friend's birthday party. I remember that earlier that day my mom and I went to a shopping center where I think I picked a T-shirt as a present for my friend. The party itself I don't remember very well. We were at my friend's apartment - her, her older sister, me and a couple of guys I've never met before I think. I'm pretty sure one of those guys brought marijuana. I remember how we were sitting in the kitchen, at this big brown table. I tried marijuana before and it didn't have any effect whatsoever on me, so I thought why not try it again. I think it was after the second time I inhaled it that I started feeling really weird. I think I started feeling dizzy and the objects around me started to seem odd - I remember that the table suddenly started to look bigger than it was and I also got this feeling that it was 'farer' from me than in reality.

I went to the bathroom to calm myself down, but it only got worse there. The bathroom was quite spacious and I started literally walking in circles. I had a feeling that I'm going crazy. My heart was pounding. My friend and her sister came over to check on me. I remember how they laughed a little at me; it seemed to them that I was just having a funny 'trip', but I was so flippin' scared at the time. They put me to bed. The last thing I remember is falling asleep to my heart still pounding, trying to tell myself that everything will be okay when I will wake up.

When I woke up the next morning it was kind of 'okay'. My heart wasn't pounding anymore, I didn't feel so scared. But something was 'off' in the way I perceived reality and I couldn't quite put my finger on it. I just felt quite detached physically from what was going on around. Nonetheless, I kept living my life without saying anything to anyone. I remember how during my math final I wasn't really understanding what was going on, everything just felt cloudy. The same cloudiness followed me throughout the summer; I was really gutted that I couldn't fully enjoy my prom and the parties I went to - I desperately wanted to soak in everything that was going on around, but it just felt like there was a thin waterproof barrier between me and reality, a barrier that wouldn't let me grasp it no matter how hard I wanted to.

*HOW I TRIED TO CURE IT*

Then the new school year came. I got into a university. Somewhere around November (which is one of the darkest months in terms of weather where I am) I started feeling really depressed and desperate about this constant inability to fully grasp the reality. Around the same time I started feeling scared to be around myself on my own; I remember how I would spend many nights sleeping in the same bed with my mom, because I was so scared I could do something to myself.

I don't remember what exactly I told my mom, but in autumn 2008 she took me to a clinic to see a neurologist who prescribed be some very mild anti-anxiety pills (they are actually so mild, that they are advertised on TV these days and you can get them at any drugstore). Of course, they didn't have much effect on me.

By the time next spring came, my mom was was really concerned about me. I kept going to university and I tried to appear as bubbly as always when I was around my friends or when I would post something on the social media. But I'm pretty sure that right after university I would stop by the nearest supermarket to get a mini-cake, then come home and completely shut myself down. I would just sit there in the corner of the sofa and cry whenever someone would ask me something. I was terrified of the phone calls, so I switched to texting only and stopped picking up the phone (I used to spend hours talking to my friends on the phone as a teenager).

Eventually, my mom took me to this woman who claimed she was a 'witch' and could help anyone with anything. On our way there I conquered my fear and told my mom that it all started after I took marijuana. I remember, how we were sitting there in this woman's flat together with other 'patients', watching the 'Let's Get Married' TV-show (on the day of my father's birthday which turned out to be his last one and which I missed). We then went in. I don't remember what this woman was doing or saying, but I remember how I started crying.

Then I tried acupuncture and leech therapy. Although my mother isn't a religious person, she suggested I should pray. We even went to a church to take communion. It was an awful experience (horrible people, etc.) - I run out of the church even before it was officially over. We then went to see 'Up' which was, honestly, much more therapeutic. At the same time I tried to research my condition on the Internet. Back in 2009 I couldn't find much information in my native language or any people with the same condition, but little by little I started to realize I probably have a DPDR disorder.

In May 2009 I finally asked my mom to schedule me an appointment with a psychotherapist - not far from where we lived because already by that time I just couldn't force myself to go somewhere that required taking public transport, especially not on my own (I remember having crazy panic attacks on the metro and my mom trying to calm me down right there in the coach). I also just couldn't force myself to talk out loud about what I was feeling - it scared the crap out of me, I was scared that I was going insane. So I just wrote everything down on my computer, printed it and gave the papers to the psychotherapist. She turned out to be a really lovely woman. Already after the first meeting she suggested we should go to this big clinic and see a child psychiatrist (I was still under 18).

The psychiatrist confirmed that I have a DPDR (as well as a depression) and told me I'm not going insane, although this condition can indeed affect the quality of life. I came home feeling so energised and positive - I thought that now that I met a person who understands what I'm going through, I will probably soon be cured! I started taking medicine. The first combination of pills I took literally made me forget everything that was going on around me - looking back, I have no memory whatsoever of what I've been doing during those weeks. Then the psychiatrist prescribed me another medication - a really severe one. My mom and I went to Italy for a week, and I remember trying to take it as early as I could because it would legit just send me into this completely numb state for the next couple of hours.

I started feeling better, I guess. I was going to the psychotherapist regularly where we would talk through my feelings and try to reduce the anxiety levels. But the symptoms were very much still there. I couldn't go to university anymore. First, it was just too much of an effort for me - I was scared of encountering people and talking to them, scared of the public transport, etc. Second, I honestly didn't like it there. So I ended up leaving the university in November 2009. In December of the same year my father suddenly passed away, which, of course, affected me too. I stopped seeing the psychotherapist weekly, but kept taking medicine.

Throughout late 2009 and 2010 I shut myself down from friends. I stopped talking to them, I stopped meeting up with them. I was too afraid to talk to them about DPDR, and they just didn't understand what was going and why am I acting so weird. I ended up losing pretty much all of my friends - most of them were lost for good, with a couple of them I reconciled later. I wouldn't leave our flat for weeks, I wouldn't talk much to anyone. I also started gaining weight because I was trying to calm myself down with food all the time.

I think that it was in late 2010 that I started taking the medication I continue taking right now (in a much smaller doze - I started with 10 pills a day and now I'm taking only 3). I tried to get my life back together. Lost a significant amount of weight, started learning Italian, then enrolled into another university, went volunteering abroad, started learning Spanish. I slowly started rebuilding my life back again - although, I guess, it is better to say just 'building', because 2-3 years into DPDR I was a completely different person that I was once. I guess part of it could be just me growing up, but most of the changes were deffo caused by DPDR.

*HOW I'M FEELING THESE DAYS*

I'm still experiencing DPDR. Lately I've been feeling as if I'm constantly on this flippin' rollercoaster. One minute I feel almost normal (which I haven't felt in forever) - and literally 5 minutes later I feel like I'm going insane again.

Recently, I started trying to block the inappropriate anxious thoughts (when I come into the kitchen, see a knife and unconsciously start thinking about hurting myself - or when I'm standing next to an open window and almost casually think about what would happen if I would jump out of it) by telling myself that it is just my brain turning the flight-or-fight mode and directing it to itself because it is my thought pattern that causes the anxiety in the first place. I'm also trying to block those insane thoughts that I've had for almost 10 years now - the ones about the actual realness of the world, the realness of what's happening around, the realness of myself. It is difficult though, because my brain has been questioning all this for such a long time, it almost got used to it and refusing to let these thoughts occupy my mind almost feels like a betrayal in a way. I find it difficult to 'trust' the world and the people around.

It's still very difficult for me to hear my own voice (or the voice of other people) or look at myself in the mirror / look at my hands / at the surroundings / at my room / at the people around - and NOT feel distanced or detached, and really feel like «yeah, that's me!», «yeah, that's my room where I grew up!». You know when you type a word and suddenly for a second it doesn't seem familiar although you wrote it so many times before? It's a little bit similar.

I desperately want to feel like a whole with my own body, I want to FEEL the objects around me. But whenever I look at my hands, I just don't seem to fully realize that they belong to me. Whenever I touch a chair and feel the wood, I don't seem to be able to FULLY grasp this feeling. It feels like there's always this split second between me doing something and me recognising it. Or, better yet, it feels like the impulse just doesn't come through all the way leaving me disconnected. Everything does still feel like a game, and it doesn't help that I keep constantly (and pretty seriously) questioning the realness of it all - I guess it is the symptom of DPDR when you feel emotionless.

I'm still experiencing depression from time to time (especially recently when I started spending a lot of time at home & started obsessing with all these DPDR thoughts and how I feel again). My memory is much worse than it used to be, I forgot so many memories, it's difficult for me to focus. I feel very lethargic (although that may be partially caused by the neck problems and the iron-deficiency I was diagnosed with). I feel unmotivated to do many things - because «why bother, nothing matters, it's all just a game». I still very often say 'no' to friends and activities. I veeeery rarely talk on the phone, I avoid Skype or being filmed and rewatching the tape. I gained weight again, because it is very difficult for me to eat healthy and exercise.

*CHANCES OF A RECOVERY AFTER MOVING TO ANOTHER COUNTRY?*

In a two week's time I'm moving to another country to continue my education (as you can see, I still remained quite active in certain areas of my life). I will be quite busy there, studying and also freelancing (plenty of distraction). There are friends that I genuinely like there and a guy I enjoy spending time with (plenty of things that will hopefully trigger positive emotions).

I'm so scared though. The place where I'm moving always used to be my 'safe place' where my anxiety levels tend to go down (it is after trips there that I reduced the amount of pills I'm taking on a daily basis - I didn't even notice how I started to forget taking them while there). I really-really-really hope that some magical thing will happen and my DPDR will go away once I move there. I'm so tired of it, I just want to forget these feelings as if they were just from a stupid nightmare. But due to those staggering 10 years with DPDR I'm starting to believe that this is how I will live my life forever, and it just makes me wanna cry.

I feel like by covering up this condition and not telling people around me I'm living a double life, a life of a DPDRed person and a life of a cheerful person who doesn't even know this crap exists. Yet saying I have it is scary because 1) it feels like truly admitting it, and I've been unconsciously protecting myself all this time by distancing my persona from DPDR; 2) I'm scared of losing people I care about after they will find out that I'm not this cheerful person and that there are these insane things running through my head.

I just don't understand anymore how can I one day stop questioning the realness of life and feel like a whole with my body again. This stupid condition and these stupid thoughts became such a part of me, I don't understand anymore what it's like living without these thoughts. These days, the mere idea of just enjoying life and not constantly thinking about whether my hands belong to me or not feels like a life of denial (which is so depressing).

* * *

Here you go. Sadly, I don't really feel much better after I wrote this. I guess it is some encouragement that I'm looking for here, because I just really find it hard to believe that one day life will be normal again.

And also, have you heard of any people recovering simply by changing their surroundings and their lifestyle (aka by moving to another country / falling in love)?

Thank you.


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## ThoughtOnFire (Feb 10, 2015)

Hi Ana, welcome to the forum.

I read your story in full and as usual all people who aren't Native English Speakers and apologize prior to writing/speaking in English ALWAYS speak and write better than most Native Speakers







(Maybe that has something to do with learning how to be bi-lingual...the brain making new connections or whatever it is)

Well I'm saddened always to come here and see people new. But it's important to meet and relate with others who share similar life experiences, and in our case that's DP/DR. But you aren't new, you've had this a long time, 10 years! So I'm glad that you seem to have had a pretty solid support from mostly your mother and your doctors. Most important thing I can say is you aren't alone, even when you feel isolated and the only person "alive" going through these things. And it's also great that you've maintained in some areas of your life.

You are a survivor and I'm sure you'll find your way. I'm not cured myself, but I like to say as encouragement that there is a distinction between 'Recovering' from DPDR versus 'Conquering' DPDR. Recovering, would be, you know, you'd know. Conquering seems to be the path you're already on, keep doing what you can, live the best you can, enjoy the simple things, a coffee or tea in the morning, a nostalgic song or movie, whatever it is... dare to fall in love! That is conquering this disorder and that doesn't mean you won't recover either. In fact most recovery stories suggest this is the method to recover. (Though to be honest "just living" hasn't worked to recover for myself and others I talk too agree). My mom always says... "We all have our challenges David, whether it's mental illness, cancer, diabetes or whatever it is, we all have something." Asking a DP'd person to "just live normal" is like asking somebody to "just walk with broken legs"... but that's unfortunately our path. And to make it worse... it's virtually invisible, people don't see that your legs are broken and they wonder why you can't just walk normal. That's why it's so therapeutic to have a community of DPDR'd people to relate with.

Welcome


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## ricoco (Aug 15, 2018)

Hey Ana. I read your story in full. I just joined this forum recently as well, and I personally have been struggling with this for 6 years. Reading that there are other people who've gone for years with this feeling, while it makes me sad, it also gives me comfort. I thought I was one of the only people on this Earth battling with this for such a long time, but you've fought with this for even longer and I truly tip my hat off to you for enduring it for so long.

I don't know about moving to other countries, or falling in love, but from what I've researched the feeling of depersonalization seems to be a never ending cycle of pumping out adrenaline in your body, due to a so called "fight or flight" symptom. I don't know for certain this is the case, but it is a pretty strong hunch based on my own experiences. I plan on getting some bloodwork done to see if I have any hormone disbalances, or looking into some form of psychotherapy. There may be some things you are suppressing emotionally that you may not even be aware of. Basically, there may be a lot of things you are feeling but are not even aware of they're bothering you. I remember once, I opened up about a small topic I wasn't even sure was important, and I just started bawling my eyes out for whatever reason. I wasn't even aware I was that emotional about it. Maybe this dissociation occurs because we constantly have those things in the back of our minds but we're either too afraid to let them out or we don't even remember them, so we completely dissociate in order to protect ourselves. This may all be bs, but I think it matches up with what I felt at least. On a side note, while it wasn't the case for me, many other people got depersonalized because of pot. I wonder why pot is the trigger for all of this for so many people. But, I don't think that the pot caused it, I think it was always there and just waiting for something to trigger it.

On a side, side note, your name is Ana, which is a common female name in the Balkan region. You also said English wasn't your first language. I don't want to be intrusive, you don't have to tell me of course, but I was curious if you're from the Balkans. I would like to know if there are other people around the Balkan region (where I am from) who suffer from this, since really I didn't hear a lot of people speak about it over here. My best wishes for you, I hope we all get through this. Much love <3


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