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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.

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