by Carol Edwards
This story is part of our blog series called “Stories from the OCD Community.” Stories from the community are submitted and edited by Toni Palombi. If you are interested in sharing your story you can view submission details at www.iocdf.org/ocd-stories.
Several years ago, I was diagnosed with obsessive compulsive disorder (OCD), and later depersonalisation. My second diagnosis is a sensation that makes me feel my body is separate from my mind. Before diagnosis, I used to ruminate on doubts and what-ifs about losing my memory or getting early-onset dementia. What I hadn’t realised then is how OCD had latched on to my dissociated experience, the feeling that makes me feel disengaged with myself, others, and the environment. While this strange awareness is a symptom of anxiety, at the time, it reinforced my fear of acquiring dementia.
My doctor explained that stress and anxiety can bring on dissociated states, including forgetfulness. I experienced some stressors at the time of my diagnosis and had become forgetful and confused. By now, such distraction coupled with strange sensations where I felt as though my body was detached from my mind (depersonalisation) was making sense. Also, I realised that having the feeling that I was watching myself in a slow-motion movie (derealisation) was part of the symptoms associated with dissociation.
What did I do? First, let me explain how my imagined possibilities in OCD were focused on faulty reasoning linked to thought-action fusion (TAF). What happens with TAF is that a person thinks as though their obsessive-related fear will be more likely to occur because they had a thought about it, even though deep down they know the idea is irrational. Now add to the experience derealisation and depersonalisation, and you’ll see how TAF is very similar.
For example, my erroneous thinking before being diagnosed with depersonalisation was that the likelihood of developing early onset dementia (due to my forgetfulness and confusion) outweighed the higher possibility that I wouldn’t. This was especially during an intense episode where people and my surroundings seemed more distant and unreal than at other times. Even people I knew looked unfamiliar and their voices sounded unusual, and our conversations which seemed weirdly confusing was all very unsettling.
So even after my doctor gave me sound advice, I still questioned why I couldn’t remember specific things, like what I did the day before, or where I was last week. I started to think that my lack of recall meant my memory was failing, that I’d been wrongly diagnosed; so, I bought a book on dementia. I needed to know one way or the other.
My resolution after reading the book was coming to the conclusion that my dissociated states had become so overwhelming that I’d lost all reasoning to fear — a fear that dragged me into conflict. On the one hand, I believed these unusual sensations meant I was losing my memory, and on the other hand, I knew instinctively that my memory was intact, yet doubted it. OCD had been playing havoc with my mind for too long, intruding relentlessly with, “You need to do more research, buy another book.” I did: I bought books, I Googled information, I went back and forth to my doctor who continued to reassure me, yet all the time I was doing these behaviours, I was reinforcing my obsessional fear.
What did I do next? Doubts or no doubts, I reined myself in and told myself that I had a dissociative condition, with OCD. I took in what I read about dissociative states and learned that the sensations are a mental shift in one’s perception. At the time, my experience of the external world was that people and places seemed unreal, also myself. Nonetheless, I reminded myself that such differences in perception do not change your personality but are a symptom of stress or trauma. Also, given that OCD was involved, I could see how my obsession was exacerbating the problem.
What were my solutions? I visited with my doctor again who, at this point, recommended I do cognitive behavioural therapy (CBT) and exposure response prevention (ERP), and since I’d trained in CBT for OCD already, I made a strict decision to put this to use. This was agreed with my doctor, and from there, I used self-directed techniques that are very similar to when you challenge your fears in exposure response prevention for OCD. I integrated other ways to cope in triggering situations, too. These included gentle exercise to reduce stress, emotion management, and positive self-affirmations. Simultaneously, I faced my obsessional fear using the ERP method.
For instance, in graded steps, I met with one fear (exposure) at a time, while resisting doing my usual “safety” behaviours (response prevention). One of my panic situations was travelling by train — I had to commute at the time for work. My typical response before ERP was avoidance, so I chose to escape the railway rush hour because it intensified my dissociated states, and instead I shuffled work appointments to fit with bus travel.
However, with ERP, I learned to cope differently. What I would do is travel by train (exposure) and put into practice my emotion management techniques. When I experienced symptoms of derealisation, I would encourage myself to sit with it, to breathe easy, and to bring in mindfulness. I told myself everything was normal, I just wasn’t experiencing it, and to relax and let the sensation pass (self-affirmation). Mindfulness helped me tune in to all of my five senses and kept me safely in control instead of running away from the strange sensations where my mind and emotions felt separated from my body.
When using my five senses, I became more grounded. I especially found that strong mints (taste) helped with mindful distraction, also holding a fidget toy (touch), counting trees or clouds (sight), occasionally sniffing a handkerchief with a dab of lavender oil (smell) and listening (sound) to white noise on my mobile phone.
When OCD crept in, I would direct my attention on not only embracing the dissociated sensations but also managing the intrusive thoughts with a strategy I made up myself, called the three A’s. These are:
A: Acknowledge the intrusive thoughts and dissociated sensations.
A: Accept they are there.
A: Allow the thoughts to come and go without appraisal or giving into corresponding compulsions, and to lean into associated anxiety until it comes down naturally.
To summarize, mindfulness and positive affirmations helped me to embrace my thoughts and sensations and live more comfortably with these experiences. Since OCD exacerbated the symptoms of dissociation, practicing ERP helped reduce both sets of symptoms, and while I live better with dissociated states, OCD has lost its impact; subsequently, my symptoms are much reduced.
Carol Edwards is a former CBT therapist, specialising in OCD and related disorders. Presently, she writes about OCD and offers online mentoring with educational documents at www.yourocdstudycoach.com. She is also writing a book about “desire” amid aversion in religious, sexual, and harm obsessions.
Hi Carol, I loved reading your post! I’m currently going through a mini bout of DP from not tending well to my OCD (too little sleep, too little to eat.). It sounds like your self-treatment is inspired by Dr. Jeffrey Schwartz. His work has helped me get out of the endless fog DP and the anxiety of OCD. Your post gave me inspiration to get back on my OCD maintenance. I hope you’re doing well!
Hi David, first, I apologise for such a late response. I came to get the link for my blog and just saw your message. I did read Jeffrey Shwartz book a few years ago so it’s likely his work has had a big effect on my thinking. I’m so glad to know that my blog gave you inspiration to get back on your OCD maintenance. Since this blog, I hope you’re doing well. I’m doing okay, thank you. I’m keeping busy with my writing, which I love doing!
How did you overcome depersonalization
Wow, this is really close to what I’m experiencing. I’m really concerned about dementia but at time it seems like DR. The stress that it may be dementia can really get to me.
Hi Sean, as I just mentioned to David, who also left a reply, I’m sorry for the late reply. I understand how stress can make the problem worse. I find that rational statements can be helpful. I’ve become accustomed to dissociated states by telling myself, for example, ‘Derealisation it is a sensation and it will pass’. Same with memory. Rationally, I knew I couldn’t recall certain things due to stress, but emotionally, I feared it was memory loss. Strengthening the rational belief with CBT strategies helped me squeeze the irrational side of the problem. I hope things are better for you now.
I think I’m experiencing a similar thing but I’ve also been have chronic deja vu the happens up to five times a fay and I don’t know if this is normal. I told myself that I think it’s frontal lobe dementia and now I can’t keep my head out of google for answers.
Hi Jordan,
I just came along your post and hope you get to see this. I was like you and had these massive bursts of deja vus. It turned out to be epilepsy. Not like the one where you shake and use consciousness but focal seizures that cause these deja vus introducing almost a state of panic.
Carol,
Very good to read your story. With my, or anyone having OCD, it really beats on you. My mother has vascular dementia. I live with, and watch her, listen to her, etc, and the thoughts just creep into my mind. I am able to fight them off at times, while other times… not so much. My sister and I live with my mom and have to do a lot for her, so it really has stressed us to the max. We both have been through divorces, and my son is ADHD, and is another huge stressor for me. Needless to say, with all of that, and more going on, my already strained anxiety and panic has reached a peak again. I’m soon to be 42, and I know this isn’t something to worry about now. It’s so very hard lately though!
Hi, this is how i feel, but i get very confused about places that look the same, people and words looking and sounding the same, and often my brain would tell me to say the right words! Its very scary as sometimes i dont know were i am even in my own bedroom, did you struggle with words etc?
Hi Owen Swift, I can identify with places looking the same but at the same time unfamiliar. But the sensation is brief, so it passes quickly. I haven’t struggled with words except only that they look wrong, but not where it bothers me. Perhaps, in some situations, where the brain tells you to say the right words, it’s because there is a need for certainty or to FEEL that everything is okay. A therapist who specialises in OCD can help with this type of problem, if it becomes obsessive-compulsive.
I feel like i can loose my identity and suddeny take up identity of other person which i know is foolish i constantly remind myself my name i wanna live a like 21 year old girl like i was living earlier before my hocd and tocd started i started to question my own identity because of it a just mere thought came that i have become my bf being a man i started feeling more anxiety … i wanna be normal again plzz help me
Shreya—Thank you for sharing, and I’m sorry to hear about your struggles. Please contact us at info@iocdf.org so our resource specialist can help you get support.
I have been going through a very similar experience. I’ve been so paranoid about developing dementia that I’ll panic whenever I consciously remember anything in fear that I’ll forget it or distort the memory in some way. I’m afraid research had only fed my obsession and fear. The dissociation has also added to the stress but atleast I know that the forgetfulness is temporary and not dementia/permanent memory loss. It has still been very difficult to cope with and hopefully I can find the right help soon.
I have been suffering with d realization and depersonalization off and on for the last 30 years. I had it real bad for one year the depersonalization. Faces were almost unrecognizable on television including my family. Sad to say I went to psychiatrist 30 years ago and they didn’t know what it was. Thank God for Google because I was well for years and then I had a really stressful situation last year and I experienced you realization I would have never known what you call it and suffered again horribly bad had I not googled it. Now I knew it had a name and I was able to talk about it with the psychiatrist this time. It’s like the fog it comes in it goes but I have also learned techniques to help me that were mentioned earlier. I noticed that if I’m feeling scared if I get up and start doing things and get distracted that helps a lot as well. I also take a drug called valproic acid and it has really helped me with the d realization. It helped me 30 years ago and I stopped taking it and then when I got sick again this last year I got back on it and within about 2 months it went away. I do notice that stress triggers mine.the good thing is I was told that you can never lose your mind with this. It will never ever go that far. Hang in there and get help and make sure that you try to think as positive as you can. Negative thoughts make it worse. Find out all the coping skills
Hi Shreya I know this is very late but I experience very similar and wanted to reach out to see how you are
Hi shreya, I know this is late and you may not see this but this is very similar to what I go through and I wanted to see how you are now
I’m going through a whole year of I call it dreamy state or I don’t feel like I’m here sometimes it’s a little better and other times it’s a 100% I am confused sometimes when I’m driving cars all look at something for a second and go OI didn’t realize that was there. So quite naturally I think I have Dementia cause I am 69 my memories great my recall is great and I work part time but these other things that happen throughout the day just put me in a panic then I’m a losing it. I have had 6 months of cognitive Their appii put her on hold because now I’m talking to another psychologist on zoom you never know that I feel this way because I appear really with it but inside I’m so nervous.
Hello, idk if I’m commenting too late but I recently had covid-19 and I’m still having long covid symptoms. But I noticed I have the symptoms of dp and dr. I can tell I’m not forgetting things not too often at least(minor memory problems) but that’s also a long covid symptom. But despite that I still feel as if I’m developing dementia. For me, a 17 year old who was perfectly healthy just 3 months ago I’m terrified. The fact that my uncle had/died from dementia makes me more scared because it runs in the family. I just don’t know what to do and my mom doesn’t believe that I’m feeling disconnected with life.
I have to say I completely relate. I’m 42 know and going through some form of stress and anxiety that makes me feel like I’m running on empty and I constantly feel like I’m in early stages of dementia. I feel tired and confused and I get flustered easy. I feel extremely out of character and when I’m talking to people I know what im saying but it’s like there’s no clarity. I don’t know 🤷♂️. I’m getting a sleep apnea test next week and blood tests etc. it seems worse than just my normal ruminating ocd etc. I feel blank, exhausted and numb. Completely sucks. Anyways. When I was about 12 or 13. I remember the day I started to feel weird like it was yesterday. I swear I thought someone drugged me. It started while I was in the back of a friends car while driving to a skateboarding spot.. after that I felt like I was in a dream for months. I couldn’t concentrate or focus on anything but my dream state. I told my mom and aunt I didn’t feel right and they said stop complaining and being a worry wort. I swear till this day I really get angry knowing they blew me off because I needed support. Things weee different back then but still. I didn’t feel right and I was scared to death. I think if I would have started talking to a therapist back then I might have not been so ocd, depressed and maybe I would not have to be a struggling recovering addict. So , seriously.. if you are young and you don’t feel right then go to therapy. It might give you an understanding that I really think I needed at the time. I still love my family but I wish they would have helped me better back then.
I feel you, I feel like this OCD/depression/rumination and feeding into it or refusing to re-enforce takes up lots of energy and the stress is trauma/overload to where the DP/DP manifests to which then the OCD questions the Dp/DP. Which then asks you if you are going crazy which just depresses you and the loop manifests into psychosomatic symptoms from adrenaline. It used to give me so much shame and exhaust me showing up to work late, even waking up a few hours early because of wrestling avoidance OCD. If I were to say anything about it, they would have just say that they have OCD and they like to clean or something like that. I can’t refuse to get any exemptions because of it because it don’t matter or makes it worse and I am the driver behind the wheel, not OCD.. It used to take me hours of rituals to leave the house, so I have improved. But if something is important and there is a deadline, i will have a full schedule that day all of a sudden. I think the exhaustion we feel is general fatigue disorder. I forget things too, but that is before of an intrusive thought/worry that makes me start rearranging my life plans while mid-sentence in a conversation.
Hey Carol,
Thank you for writing this. I am unfortunately in a similar boat. (M21) and horribly afraid of dementia. I’ve had DPDR for about 2 years now after a bad drug experience, but lately my memory has been horrid. What scares me most is that I don’t feel the same symptoms of DPDR that I used to, so in my head I can’t blame the DPDR for the memory issues. I spend most of my free time researching dementia and young onset dementia because I fear that if I don’t figure this out soon, I will develop it and my life will be diminished to suffering. I definitely obsess over my memory. It’s something I always think about because my brain is constantly in a fog and it’s brought to my attention a lot. It also feels like my memory is worsening. I can’t remember what I did yesterday, last week, and I have no concept of time. My focus is reduced and I struggle despite not feeling very anxious. I freak out because I don’t know what my memory loss is like in comparison to others who struggle with DPDR/Brain Fog, so I assume the worst. I can’t tell if it’s OCD that is manifesting or worsening my symptoms, or if I should really be concerned. I also have ADHD.