The Cages In Our Minds: My Journey with OCD
We're going somewhere different this week. It has been a very long time since I wrote about this topic, and many of you many not know about this aspect of me. But then, that's why it's so important. I started this blog to shed light on the experiences that are less visible and less understood, and to give an honest account - however difficult - of living with brain quirks others may never see. And in that spirit, it's time we talked about this. Hold onto your hats, and let go of your assumptions.
In December 2013, I was diagnosed with Obsessive Compulsive Disorder. I remember that time so clearly, because it felt like it had appeared out of nowhere and my world unravelled overnight. Looking back, there had been signs before. The real trigger was months before, and I'd always had some warning signs. But I remember standing in my kitchen, tears streaming down my face, shaking, sobbing, crying down the phone to my mum because I'd spent more than two hours trying to make pasta and I just couldn't get past the gripping fear to put it in my mouth. She was frightened. I was frightened. I didn't know what was happening. I'd just finished my first term at university, and somehow in the middle I'd gone from being a confident cook, an enthralled foodie, to being unable to make simple meals because of the fear that took hold around preparing food. I spent the next five years in and out of therapy. Unable to reliably prepare food. Unable to eat with my hands. Unable to clean my house without descending into a swirling nightmare of compulsions and fears. Often unable to leave the house or be around people for any length of time without it taking hold. OCD stole years of my life, and they are years that I can never take back or forget. It started slowly. Being autistic I've always been disposed to repetitive behaviours, and much like the rest of the issues I experienced I simply learned to mask them to others and even myself. The early signs were subtle and could easily be dismissed as quirks. I was prone to picking at wounds and blemishes, often to the point of scarring. I had an extreme aversion to standing on cracks in the pavement and would be late to class trying to avoid the discomfort. I had a hidden obsession with symmetry when eating, feeling compelled to chew on both sides of my mouth equally for every meal. I also had an extreme phobia of vomiting, and even at a young age would become incredibly anxious and distressed if I felt ill. I would go to extreme lengths to avoid contact with other kids at school if they were ill, often making sure I was the last to take my seat in class so I could position myself away from them, and holding my breath for extended periods and turning away to breathe if I was seated near someone who had recently been ill. I would ask incredibly detailed questions about suspected exposures to illness and would fixate on the topic for days until the incubation period had passed. This was originally considered to simply be a phobia, but with hindsight, it showed a clear pattern of intrusive thoughts, obsessive cognition and compulsive behaviour.
The symptoms escalated hugely in the summer before my departure to university. I had an incident with a low-risk exposure to a serious illness, and inside my head, all hell broke loose. My brain blew the incident and the associated risk completely out of proportion, and almost overnight I developed an extreme and paranoid fear that I would sustain a needlestick injury and contract HIV. Despite numerous assurances from doctors, therapists and loved ones that I was not in danger, I could not shake the obsession. Looking back now, this was the first in a series of psychotic episodes that would span the next three years. Almost overnight I became a recluse. I would spend days on the sofa paralysed with fear, unable to move. In my unhinged state at that time, I was convinced that if I moved or went outside I would tread on or brush past a concealed needle and become infected with the virus. The fear was all-consuming and wreaked havoc on my body: I wouldn't sleep for days on end, I developed an eating disorder, and experienced skin conditions and gastrointestinal distress due to pure fear. I lost a huge amount of weight, dropping three dress sizes in a matter of weeks and plummeting to a skeletal 7 stone. I experienced psychotic symptoms, hallucinating needle-prick sensations all over my body, to the extent that I would tear off my clothes and check my skin for injuries.
I felt like my mind was unravelling, and I worked desperately to conceal the extent of the episode from my family. I hid the disordered eating by preparing food for myself, and spent most of my time in my room to avoid them seeing my compulsions. But there was no hiding the extreme weight loss and the fact that I was physically present but mentally absent. Often I was so caught up in the fear of my intrusive thoughts that I couldn't hold a conversation with my family when they were sitting right next to me, and they could tell something wasn't right. We went to see the doctor, who prescribed me antidepressants and therapy. I was refused therapy because I was about to leave for university, and told to get help once I arrived there. I hallucinated an allergic reaction to my medication, ending up in hospital. The doctor told me to discontinue my medication, and that was that. To this day, I don't think my family know the full extent of the psychological illness I was experiencing during those months. It wasn't until the episode near Christmas when I finally broke down and called my mum that they became aware of how serious things had become.
Over the course of my first term, the hand-washing started. I can't pinpoint the day, but I do remember the uneasy feeling I had from the anxiety that hadn't been there before. I'd feel dirty or contaminated by something I'd touched, and at first, I didn't think anything of it. I just washed my hands. But the feeling would creep back after only a few minutes. The discomfort and the urge to clean would build until I caved and then felt better, but only for a few moments before the cycle began again. My own belongings felt dirty to me. In my mind, everything I touched was contaminated with HIV, and every action carried a risk if I didn't handle it properly, didn't clean it properly, didn't do everything exactly right. In the panic-stricken blur of my thoughts, I felt an uncontrollable need to wash everything before I touched it, then wash myself. Once the item had been used, everything needed washing again. Each time my terrified brain would throw new suggestions at me; new ways to handle things without using my hands, new ways to clean to make it even more sanitary, new rituals and steps that would 'streamline' the process. I began spending the majority of my weekly budget on cleaning supplies or replacing things I'd thrown out in a panic because I couldn't face another round of cleaning and washing. My skin was raw and cracked from the constant cycle of washing with ever harsher soaps and at times even chemicals such as bleach. It was the culmination of this downward spiral that ultimately led to my breakdown on a phone call home, after spending two hours of compulsive cleaning and washing stopped me from making a simple bowl of pasta.
Opening up to my mum about my experiences was the first step in a long road to recovery. We agreed that I needed to make an urgent appointment with my doctor and tell them everything. I was incredibly lucky to be given an appointment with a very proactive and efficient GP who immediately diagnosed me with OCD, got me onto medication, gave me a therapy referral and contacted my university to get me some interim counselling. To this day, I am convinced that this quick action and the extra step of helping me get support from the university saved my life. I was in the grip of a second psychotic episode, and had even contemplated taking my own life to escape the constant sense of complete terror that was consuming every waking moment.
Sadly my first NHS therapist did a poor job, and I had to terminate our professional relationship when it became clear that he was more bothered about being liked by me than making me better. However, the counsellor I saw through the university did help me process the experiences that had triggered my OCD, which reduced the frequency and intensity of my psychotic symptoms significantly and enabled me to continue with my degree. I tried a number of different medications, joined waiting lists for therapy and tried to keep my head above water academically. At home, however, I was struggling to cope. Housework filled my head at every moment, and I would simultaneously be panicking about mess whilst being so overcome with fear - which in turn triggered my executive dysfunction - that I could barely do a thing about it. I can confidently say that without the support of my best friend and housemate I would have dropped out of university. Her endless patience, reassurance, and willingness to tell me to just go upstairs while she bleached the sink, emptied the bin or removed the offending item from the fridge kept me hovering above psychosis for much of my second year.
In my third year and beyond, I remained in this state of stasis for some time. I was no longer psychotic for the most part, but the neurosis continued until I finally received a referral to a good high-intensity therapist in 2016/7. This stint in therapy was the turning point in my recovery, and shifted me out of damage limitation and into remission. My therapist worked with me to combat my illness. He taught me theories and concepts and we worked together to apply them. He guided me first through CBT and then exposure therapy, adapting to my neurotype and focusing on building new models and habits rather than going over the old ground of my trauma. This, along with a doctor who finally heard my request to try an alternative antidepressant, finally enabled me to wrestle my OCD back under control. It wasn't gone - indeed, I don't think it ever fully will be - but finally I could control it rather than it controlling me.
In the three years since then, I've been in remission. By continuing to challenge myself with exposure techniques, I'm overcoming my OCD piece by piece. I'm still fighting it, make no mistake. I still struggle to eat with my hands. Public toilets still make me uncomfortable. I still have to use disposable gloves for cleaning every now and then. But for the most part, I go about my day without worry, without fear, and without really thinking at all about my compulsions. Had you told me six years ago that this level of recovery was possible, I wouldn't have been able to believe you. So many people suffering in silence with their OCD can't see a way out or forward, and I was no exception. The reason I'm sharing my experience, as raw and incredibly vulnerable as it feels, is because I never had an example to give me hope for recovery. I never saw people who had suffered like me who had made it. So I think it's important as someone who was once very, very ill with my OCD to break the silence, and to tell those who are still quietly suffering and thinking they've irreversibly lost all sense of reality that this is not the final destination. Right now, you may be struggling, you may be very sick and feel like reality is unravelling around you, but this is not a permanent change. There is help. There are medications which can help and therapy that can treat this. There are others who share your fears and your feelings, and you are not alone.
Over the coming weeks I will be making a post about OCD, what it looks like, and how to know if what you're experiencing may be due to this. Keep an eye out, feel free to ask questions, and more than anything don't ever think you're beyond help.
Solidarity and fortitude,