You live your life feeling as though every waking moment is spent walking around in a bubble. You feel completely detached from everything and everyone around you. You hear your voice when you talk but struggle connect it as your own. You see your reflection in the mirror, it is familiar but it does not feel truly yours. Everything around you appears unreal and somewhat distorted. You feel a passenger to someone else’s life story, watching it play out through someone else’s eyes.
You experience beautiful and sacred moments but are robbed of the ability to truly and entirely enjoy them, as a part of you is nearly always distracted by the nagging voice of doubt asking you is this really happening? Is this all real?
You become aware of how difficult it is to hold a conversation with others. Your attention span is practically non-existent due to the existential thoughts continually buzzing around your mind… why do I feel like I’m not really here? Is any of this real? Why do I feel like I don’t really exist?
You are in a constant battle with your own mind to assure yourself that, yes, this is really you and your life. Even though everything you touch, hear, see and feel points to the absolute contrary. You just have to believe that this is your reality and this really and truly is your life. It is an unrelenting 24/7 battle of wills. Welcome to life with Depersonalisation/Derealisation Disorder (DPDR). The third most common psychological disorder - yet it is barely understood or supported.
I knew there was something wrong with my mental health many years ago. It is hard to truly quantify time when you live your life in a bubble but I would estimate that I started to feel “not right” around 10 years ago. I visited my GP and tried to explain my symptoms. “I feel as though I am not really here... I feel very detached, as if I am no longer living in reality to everything around me”.
I can clearly remember the look of scepticism he gave me. It was as if he had never heard anything like it before. I had hoped that he would rationalise my symptoms and his inability to do so cemented my rising fears – I was losing my mind. That was the only rational explanation.
I was referred for a CAT scan and everything came back “normal”. I was then referred for blood tests. They also came back as “normal”. My blood pressure and basic motor skills were assessed. Again, all “normal”. I asked what we could do next to determine the cause of my detachment. He told me in no uncertain terms “all avenues have been exhausted” and there was nothing else we could do. I just had to get on with it. As a last ditch attempt of trying to solve the mystery he tried to pin my symptoms onto depression. “Absolutely not”, I said. I am paraphrasing here, but am sure his response at this point was along the lines of, “You probably just need a good night’s sleep then….”
Faced with battling my invisible enemy alone was both daunting and intimidating.
I am proud to say that, given the circumstances, I have lived, what society would deem to be a “normal” life. Even though my illness has become increasingly debilitating of late, I work a demanding full-time job, have a good circle of friends and social life, stable and loving family and the best boyfriend, Liam, that one could hope for. I have been on holidays and had some wonderful life experiences. Even though my DPDR has remained a constant presence in my life all these years, I have expressed and felt a plethora of emotions; I have smiled, laughed, cried and truly loved.
I have also been proud to maintain my confident, positive and bubbly persona over all these years – even when I have felt a million miles away from being my extroverted self. Lately though, it is upsetting to admit this is changing and slowly being replaced by a withdrawn and anxious, empty shell of a person. My laughter feels hollow and my smile feels fake more often than not these days. It is an effort to source these emotions now at times.
The anxiety attacks have become more regular and even more intense. The worst part has been the suicidal thoughts and the awful feeling that I am a complete burden to everyone around me. The feeling that my loved ones would be so much better off without me has been unrelenting these past few months and have taken me to some very dark places.
I’m not sure exactly what has happened in the past year. My symptoms have suddenly – and rather cruelly – worsened quite drastically. I have recently been at the point where I have felt I am on the verge of losing the battle completely. The time spent “in my head” questioning my mere existence, than in the moment, regardless of where I am and who I am with, has increased to a nearly-uncontrollable level.
I was loathe to seek professional intervention. This was not only due to the total let down all those years ago. I was also ashamed with how others would view me. Somehow, I felt less of a person but knew I could not go on alone any longer. I was feeling desolate.
Firstly, I took the decision to let Liam in and explain what was happening with me. We only see each other at weekends due to our distance and I was aware that our time together was becoming progressively more strained and difficult due to my withdrawn behaviour. It took an enormous amount of courage to tell Liam but with hindsight my greatest regret is that I did not tell him sooner. His reaction was fantastic and he immediately urged me to seek professional help. He has been at my side, as an unwavering source of strength and comfort, ever since.
Mid-2014 was the start of the steady decline. By mid-August I was experiencing regular intense and devastating anxiety attacks. Looking back on those moments, I can remember feeling so out of control of my actions, I was hysterical and honestly thought I was going to die. I find it is the realisation of complete detachment, unreality and derealisation that is a massive trigger to my anxiety attacks. The “derealised” sensation is overwhelming.
One evening, out of sheer post-anxiety attack desperation, I took to the internet and searched “why do I feel like I’m not really here?”. After scrolling through a few nonsensical results, it lead me to the fantastic DPDR forum, dpselfhelp.com. As I sat reading the forums and explanations, it felt as though I had been struck by lightning. I nearly dropped my phone in shock. Suddenly, after all the years of uncertainty and doubt, it was a moment of such distinct clarity. The relentless questions were finally being answered.
I then searched DPDR and read as much as I could on the subject. The information at hand, even on the internet, was extremely potted and limited. Even so, I could not believe what I was seeing and struggled take the words in properly… my mind was buzzing. My symptoms have a name. It is a real thing…I’m not going mad.
I went to bed very late that night. Although it was hard to find many medic-based documents on the condition, just reading the stories of other sufferers provided so much comfort. Reading their own stories of frustration and isolation made me want to reach out to them and say I feel like that too! You are not alone! I knew in those moments, as well, that I was no longer alone. After all the years of feeling so very different to everyone around me here was a group of people fighting the same battle as I. suddenly I was a part of something and everything made sense.
I went to my GP armed to the teeth with information on DPDR. Even though my discovery had shone a positive light into my world, I was in a terrible place at this time. I had to complete a written assessment on how my symptoms were impacting on me and the result was “critical”. I told my GP in that meeting I was feeling suicidal and was seriously concerned I might do something stupid. I had to wait two long, desperate weeks for the initial assessment with the local mental health crisis team. I was offered anti-depressants but duly declined. I am not depressed!
The screening nurse informed me that due to DPDR being “so rare” I would be seeing their most senior psychiatrist. Again, I told the nurse I was frightened with where I was at mentally. I was told I would have to wait for an appointment. They would write to me.
It took four long, increasingly hysterical weeksbut finally, I was given an appointment with the psychiatrist. This was only due to my finally giving up on waiting for them to contact me. Instead I called them and begged to be seen urgently. By this point, even though I was just about still at work, I was finding it so hard to get through each day. I had to call on the support of those around me on a regular basis. Some close friends, family, colleagues, my beloved sister and of course Liam have been my dream team of support.
I was diagnosed by the senior psychiatrist as a “chronic” sufferer of DPDR. “Chronic” due to the fact I live in my bubble – or limboland as I to call it – 24/7 without a break. I think some people struggle to believe this could be true, as I am a functioning adult but trust me, it is. I felt a twinge of disappointment when I asked the psychiatrist if he was well versed in DPDR and he replied his experiences had been “very limited”. He felt the best plan of action was medication and for me to continue with the CBT I was paying for privately.
I was initially prescribed a daily dose of 25mg of Sertraline which was steadily increased to 150mg. It was a torrid few months. Initially the tablets made me feel nauseous, dizzy and even zombie-like. Sadly it has continued to deteriorate from there. I allowed myself to be dragged to some kind of mental hell in the sheer hope of the meds living up to their “wonder drug” billing. Sadly not.
My pre-med symptoms have exacerbated since taking this medication. I have had even more frequent break downs, ranging from a quick cry in the back office at work, right through to a total anxiety attack. Whereas it used to mainly be when I was at home by myself, it has become much more public affair, even when I am surrounded my some of my most dear loved ones.
I am sad to report the suicidal feelings have, at times, also intensified. I had a terrible break down at work last month. I sat sobbing in my car and all I could think of was driving away somewhere far and doing something stupid. In sheer desperation I called the psychiatrist for advice. His assistant informed me he was unavailable. I pleaded for him to “please call me back as quickly as possible. I am worried I am going to do something stupid”. I did not get a call back at all that afternoon. The psychiatrist did try to call me back once, the following day when I was fast asleep. I tried calling him 4 times in the space of 24 hours, only to be told each time he was unavailable. I was beyond desperate by this point. I had phoned in sick and spent the day feeling completely unattached from the world. I was so close to giving up. I felt history was brutally repeating itself from 10 years earlier. In my last try of calling him I resorted to making an “urgent” appointment to see him. It was organised for Monday 9th February – around 3 weeks after those desperate phone calls. I could hardly believe it. I was terrified I would not make it through the weekend, let alone the following three weeks. I did not get a call back that day, nor have I ever since.
So here I am, on the cusp of the next batch of treatment. I am trying my hardest to get through each day as best I can. The first thing I am aware of when I wake is my detachment and every night I lay in bed praying it will be gone the following morning. I know I need to accept and ignore it but it's too overwhelming to do that right now.
I am in touch with many other DPDR sufferers and am open to as much coping advice as possible. I have used the very limited available resources on DPDR to heed their advice too; I have cut both caffeine and alcohol from my diet. I try my hardest to sleep well each night and exercise to release good endorphins.
One of my key findings is the importance of keeping busy and distracted. As much as I would like to lock myself away from the world, I make sure I go to work every day (with the exception of that one unbearable day). I keep my social life as active as possible and surround myself with my loved ones doing the things I truly enjoy.
I have found a couple of brilliant personal therapies. Music and film have always been a huge passion of mine since I was a child and I utilise both to their fullest. I manage to get lost in both, plus they manage to evoke differing emotions in me and I cling to those with all of my might to remind me I can feel and I am here.
I have always loved to write since I was a child and started my blog as, not only a means of therapy, but also to reach as many others who are suffering with mental illness as possible. I also set up a twitter account. The number of people fellow DPDR sufferers who have contacted me over this relatively short period of time has been pretty substantial. I have also had many people suffering with other challenging mental illnesses contact me. I feel a natural affinity to everyone I speak with under these circumstances, regardless of condition. The label might be different but we are all fighting the same fight.
Their stories all share pretty much the same frustrating running themes as my own – not being taken seriously, misdiagnosis, months if not years of isolation, limited and unhelpful professional intervention, GPs refusing to refer to a mental health team, or waiting weeks upon weeks to be seen if they are lucky enough to be referred, medication not working, being fobbed off with anti-depressants, being wrongly diagnosed as being depressed… the list is endless and the longer it gets the more frustrating it makes me feel.
My “urgent” appointment with the psychiatrist is on Monday. It is finally here. I feel so much pressure to get everything said and sorted that I am taking my sister with me to ensure I am provided what I truly deserve. Liam has recently found a specialist DPDR clinic operating in London. Due to very limited funding, they are only open ONE DAY A WEEK. They can only see a maximum of THREE CLIENTS A DAY. This is the one and only specialist DPDR clinic operating in the UK. It would be laughable, if it wasn’t so upsetting. I will not be leaving his office until my referral to them is under way. Monday is a huge day and I feel nervous about it.
One clear and consistent message I am receiving loud and clear since becoming so active in this wonderful community is so many people are not getting the help they need. We are not listened to properly. Nor are we taken seriously. We are made to feel a nuisance, or even worse, a hypochondriac. This leaves many of us feeling weak, shameful and worthless. We feel a failure to those who love us. I feel many of us are one unreturned call or misdiagnosis away from doing the irreversible through sheer and absolute desperation.
I myself have stared suicide in the face a number of times in recent years and let me tell you now, I have never actually wanted to do that but when everything feels lost, I felt it was my only option. It has made me realise that suicide IS avoidable and the fact it is still happening on a regular basis downright intolerable.
Ten years ago I was scared and intimidated by all of this. Even though I am weakened and battered, I refuse to be beaten this time around. The treatment of such a vulnerable community actually makes my blood boil. The distinct lack of funding for mental health makes me feel so angry. I am unwavering in my determination to not only get DPDR out into the public consciousness. I also want to highlight the struggles someone with mental illness goes through just to have any kind of basic professional care – and I use that term in the loosest sense.
I will keep on writing my blog in the hope that someone out there who is struggling with their own battles can find comfort from reading about mine. We are not alone and we deserve to be heard. Something needs to change.
About Lauren: 34 year old female, based in the UK and battling a barely documented dissociative condition called Depersonalisation-derealisation Disorder. On a mission to increase awareness of the illness and reach out to support others who are locked in a battle of their own.
Follow Lauren on Twitter: @lblimboland
Lauren's Blog: lblimboland.wordpress.com
Additional information from the Mayo Clinic Website: "Depersonalization-derealization disorder occurs when you persistently or repeatedly have the feeling that you're observing yourself from outside your body or you have a sense that things around you aren't real, or both. Feelings of depersonalization and derealization can be very disturbing and may feel like you're living in a dream.
Many people have a passing experience of depersonalization or derealization at some point. But when these feelings keep occurring or never completely go away, it's considered depersonalization-derealization disorder. This disorder is more common in people who've had traumatic experiences."
For more information from the Mayo Clinic, click this Link.
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