OCD and Me.

I've had Obsessive Compulsive Disorder for quite a long time. It started in childhood but I kept quiet. I was about 7 when it began and it started with the germs, poisons and the fear that my actions could be responsible for the death of my family members.

One day I was at my best friend's house and I dropped my hockey stick on the ground in their driveway. It landed in a little stain on the concrete which was probably oil from the cars. Most would just pick up their stick and that would be it, but not for me. I played hockey that day but my hands were contaminated after that point. I would hide and cry for hours before I had to go to hockey because I would have to touch my stick. I would play hockey with my hands in my sleeves. When my parents figured it out that I thought it was dirty, they cleaned it for me with a pine-o-clean wipe. But there was still a problem as I  thought that the chemicals in the disinfectant were poisonous and so the problem continued. I don't even remember how or when that stopped but it did I suppose. 

The fixation with poisons then continued. My dad had built me and and my sisters a sand pit in our backyard. He told me that the wood was treated with insecticides to stop the termites. The problem continued. I remember being scared to eat because I couldn't use my hands because I had touched that wood and there was now poison on my hands. In the end I remember my dad licking the wood to assuage my fears that I would be dead if I touched or consumed it. He was of course fine and I eventually accepted it, but I’d be responsible for my dads death. I prayed for hours each night for years - “I promise I’ll be good. Please don’t kill my family”. It was a lot of responsibility for a seven year old.

I became very preoccupied with being good, If I wasn't good god would kill everyone I knew. Every time the slightest thing went wrong I could convince myself in an instant that my family would be dead. It became the case if my thoughts weren’t good either.

But it didn't stop there. I couldn't swallow my spit because I was afraid poison had got in my mouth or I had breathed it in. I couldn't go outside in certain places without holding my breath for fear of breathing in poison from the plants. At school I was terrified kids would have allergic reactions if they came near me, I was a primary school aged child on alert in the playground, worrying that someone would need CPR and that I had to make sure the teachers would see and respond. I saw psychiatrists, my parents were worried about OCD but it looked like it calmed down a little bit but really I just internalised everything. My psychiatrist as a child told my parents I’d grow out of it. I can’t help but imagine what things would have been like with proper intervention.

As an 18 year old, I moved overseas by myself and my OCD sky rocketed. Every waking moment was filled with obsessions. I would be lucky to have 20 minutes cumulatively in a day when they weren't screaming in my head for a whole year. I still hadn't figured out that it was part of OCD at this stage because of the nature of the obsessions. Is saw OCD as something all about germs. I was having more panic attacks than one can count, but that worked in a funny way. I would keep incredibly busy and purposely do things that made me anxious, like flying and travelling alone. I would be so anxious about the situation I was in, I wasn't quite so focused on the obsessions. But even still, I look back on my photos from that year and could tell you exactly what my brain was saying at that point in time, it was graphic and terrifying. I couldn’t tell you about my travels though. I used general anxiety and panic as a tool to try and crowd out my obsessions.

Now I'm 28 and the OCD has been particularly strong since I was about 15. I expect the timing of this was related to my brain developing the capacity for more abstract thought as an adolescent. For years I’ve truly believed I was a monster, I still can’t quite believe that I’m not. No longer is my OCD centred around poison and germs (although I still hold my breath, I’m not able to touch certain things...it’s minor in the scheme of my obsessions) it is now around being worried about causing harm to myself and others in various ways. I think mostly it has to do with being bad and being a bad person. Being a bad person because of my thoughts, capacity and potential for purposeful or uncontrolled actions, or harm by omission. Finally seeking treatment at age 19 saw doctors assuming I was experiencing psychosis because I was in so deep. I kept things a secret from my parents, only finding something was wrong after being scheduled for the first time and not allowed out until I had a responsible adult adequately informed.

I end up believing I am truly the worst person in existence. I believed I deserved to be dead for the horrible intrusive thoughts and obsessions that I was having. This combined with my other mental health difficulties led to suicide attempts throughout my 20s. The more I reacted, the more I became distressed over what was happening in my head, the worse it got.

My OCD compulsions are a series of mental rituals and phrases and rules- on the outside no one would even know that I have OCD. I used this as justification that proved I was a monster, I didn't have OCD - I really was the most terrible person in the world. 

The thing is my OCD obsessions are the worst things I can imagine a person doing. They are so ego-dystonic ie. not in line with my beliefs and morals that they have had such an impact on my self worth and value as a human being. I hope that people who know me would say that I try to always be kind to everyone no matter who they are and would never want to even be mean, let alone commit an awful crime or do something bad. This is what gives them so much power over me. 

Later began the obsessive exercise and bad eating habits. I wreaked havoc on my body to try and quieten my mind. I lost my period for over a year, my heart became slow, I was dizzy and sick. I set all these rules for myself and was constantly thinking about food. I swapped one obsession with another (I know it's slightly different - I mean that it occupied so much brain space fixated on food I was focusing so much on the intrusive thoughts). When I started to eat again and do a healthy amount of exercise, another harmful tool of self punishment took its place.

I would hurt myself in a compulsive way, trying to prove to myself that I didn't like these thoughts, that if I hurt myself then I wasn't a monster. I needed to punish myself for thinking anything wrong, bad or evil. I thought I could train myself out of certain intrusive thoughts. This has done a traumatising amount of damage to my body and is something that I’m so scared people will see. I feel like it would traumatise people to see whats happened. But it has gone from something happening everyday to something which happens sporadically. It’s no longer so much of an issue but years of overwhelming distress led to me thinking self harm was the only thing I could think to do to help. I knew it wasn’t right or sensible but when you’re unwell, at a point it starts to seem logical.

Right now my OCD is not as bad as it has ever been but it's still quite a lot to deal with, there's now just other things going on as well. Some days my brain won't shut up but occasionally I can get a bit of quiet from them (I'm usually worrying about something else to be honest but thats a whole other story). It still has quite a hold on me but at least now I'm starting to get proper help. It's been a slow road and probably something that will never fully go away, but a bit less would be quite nice. I’ve had to make so many compromises and missed out on so many things because of mental illness. I’ve lost so many friends and missed out on so much, I feel so far behind my peers and ashamed of how much support I need at age of 28, like needing to live with my parents to stay safe and to be able to look after myself. In one way or another it dictates each thought and action of mine, the way I fixate on things and feel so much guilt. OCD is far more than a simple obsession and the compulsion.

OCD is more than just a collection of intrusive thoughts and compulsive behaviours. It is a condition that can profoundly alter the way individuals perceive themselves, others, and the world around them. It’s also accompanied by trichotillomania & dermotillomania for me (pulling out my hair and picking at large areas of my skin). While each person’s experience with OCD is unique, the disorder often shifts one's worldview in ways that can be both distressing and enlightening. OCD is feeling as if the world is a threatening dangerous place, it’s a need for perfectionism and control and a tendency for hyperawareness and overthinking. It also alters interpersonal relationships. It’s hard to make friends when you feel like you’re a danger to them.

My OCD has been accompanied by severe anxiety and depression over the years. I’ve been hopsitalised more times than I can count, cumulatively for years probably. Tried 35 medications, had around 230 ECT sessions, been in clinical trials and more. I’ve lost years of memories, throughout my 20s, from the times when I was ill, when I was receiving treatment, but also as a child and teenager. ECT causes both anterograde and retrograde amnesia. It seems to have had an effect on my cognition and concentration too.

One thing that has made a significant and life changing difference is having neurosurgery for my OCD. It’s called Deep Brain Stimulation. Deep Brain Stimulation (DBS) is a treatment for many things including Parkinson’s, OCD and neurological other disorders too. It involves inserting electrodes into a person’s brain under surgery and connecting these to a pacemaker device implanted near one’s collarbone which controls electrical impulses into the brain which can be adjusted according to ones needs. At first the adjustments were difficult, leading to agitation and brief hypomania but over time I don’t get these side effects. This isn’t a typical operation and isn’t even legal in parts of Australia as it counts as psychiatric neurosurgery. My doctors are in Melbourne. It can be done when every other option is completely exhausted and one’s OCD remains extremely severe. This has made more of a difference than anything else. It has helped my depression & OCD in a way I couldn’t even imagine a few years ago. Often it’s hard to remember this when there’s yet another hospitalisation to keep me safe, something that happens a couple of times a year at this point, but looking retrospectively and more objectively the change is quite dramatic.

My OCD is still considered severe and is distressing and limiting but now I’m functioning better than I have since high school. I still struggle to get very far in ERP therapy, I still struggle to talk about my obsessions, especially the one’s I find most horrifying. Although I ‘know’ it’s illogical it feels as if I say them aloud then they will happen and that they’re definitely true. Thinking about something seems almost as bad as doing it. (This is called thought-action fusion). I’ve tried doing this with psychologists and psychiatrists and even inpatient programs but my levels of distress get so dangerously high so easily that after years I’m still in the early stages. You may notice my vague description of my OCD these days through this article, I can’t write them. But the one’s from when I was little are a bit easier.

I’m finally doing a degree part time, something which is incredibly important to me. I’m studying Occupational Therapy. This is really meaningful to me as someone who is autistic and lives with severe mental illness. My lived experience actually offers me a unique insight and opportunity to understand and resonate the course content. I get what having a disability is truly like for me and how it is intertwined with so many areas of my life. I still find university quite difficult, sitting in a classroom often ends in panic. I get so overstimulated by the people and the noise and feeling trapped. Getting to university is extremely difficult too. Since developing epilepsy last year, I can no longer drive myself. I have to endure public transport as someone with autism. It’s really hard when something as important and meaningful to me as this - studying a degree in occupational therapy, is the most difficult thing I end up doing. Being so preoccupied by all of this has meant I don’t really have any close friends in my degree, something which is quite isolating as someone with already limited social opportunities.

Maybe one day I'll be able to comfortably write what I obsess about exactly rather that vaguely saying that I worry I am bad. I think that will be a step in exposure therapy, or to say them aloud to someone other than a psychologist, I'm just not quite there at the moment.

I ‘know’ that my thoughts aren't magical - thinking them cannot make anything bad happen and I'm not a monster. My brain just likes to work against me and not let things go. Saying my obsessions out loud won't make them happen and doesn't make them true, I'm in no way capable of that - often its downright impossible for the things I think about to happen. It still feels like I can though. I'm learning to live with them and not let them have so much power over me. 

If you're struggling with OCD, the International OCD Foundation is a great place to start for some information.