With OCD Awareness Week running from the 13th-19th October I wanted to share with you guys my own battle with the disorder and use this post to educate people on a condition that’s massively misunderstood and, in my opinion, not taken seriously enough.
I think I’m going to make this into a series of posts, starting with my story of living with the disorder, some thoughts on the term ‘OCD’, and maybe try to get a couple of people I know who also have it share their story, because the way it manifests itself is never the same between two people. So as a disclaimer, the experience you read about in this post will be completely different if you speak to someone else, they’ll have different thought patterns, behaviours, anxieties, and it’s not something that can be generalised.
If you’ve never heard Obsessive Compulsive Disorder (OCD) before, it’s a mental health condition that makes a person have obsessive, intrusive thoughts and fears, and compulsive behaviours. These thoughts are neutralised through repetitive behaviours or thoughts, which have a significant impact on the person’s day to day life. It should be noted as well that, although a “normal” person might also have these thoughts, the difference is that they can just ignore them, brush them off in passing. But someone with OCD can’t accept them as just thoughts, and they can spiral by attaching validity to them, thinking they will actually come true because they’ve thought them, thinking that our internal thoughts will manifest in the external world.
I could ramble on and on about what OCD is, but that’s not the purpose of this post. I’m here to talk about my story in the hopes that
a) It will help raise awareness of the disorder
b) It might make someone recognise abnormal thought patterns in themselves and seek help
c) Get people to stop uSING OCD AS AN ADJECTIVE …because that is the BIGGEST pet peeve I have.
At the age of 11 I was diagnosed with OCD as a byproduct of boderline depression, because I was being bullied at school. A bit much for an 11 year old to handle if I’m honest. As gross as it sounds I had started picking up bits of rubbish off the floor at school, and only at school, because if I didn’t I would be overcome with crippling anxiety that something awful would happen either to myself or my family. These thoughts would range from them getting seriously injured or dying, to just me upsetting them.
It would also take me stupid amounts of time to get from one room to the next in my house due to checking and ritualistic behaviours. Again, if I didn’t do these behaviours I thought terrible things would happen, and they would be entirely my fault. My Mum would get mad because I’d come home with my blazer pockets full of discarded sweet wrappers and papers, and I didn’t know why I was doing it, nor could I stop it.
It wasn’t until my neighbour, who was a nurse at the time, suggested that I see a doctor because it seemed characteristic of a disorder I had never even heard of before. So we booked an appointment with my GP, who referred me onto a psychologist, who, you guessed it, diagnosed me with OCD. Granted I don’t remember the whole session because it was 14 years ago now, but I remember being given a booklet about it and a self-help guide to read over until a space became available on for Cognitive Behavioural Therapy (CBT), which took almost nine months to get.
By the time I got to the top of the waiting list I thought I didn’t need it because I had moved schools and, although the compulsive behaviours and negative thoughts still existed, they were manageable and didn’t impact my day-to-day living as much as before.
Back at it again
So let’s fast forward to five years later, where it went from manageable to flaring up again due to GCSE stress. The rubbish picking never surfaced again, thank God, but the ritualistic behaviours did and they were starting to get worse than before. It started with little tapping behaviours, like having to touch objects a certain way a number of times (four lots of four) or with a certain hand (left, because I’m left handed) but then it had to be partnered with thinking positive thoughts and certain words.
Words were labelled as good or bad, not because they had positive or negative meanings, but because even the most abstract word could be associated somewhere down the line with something bad happening. I find it really difficult to explain this bit to people who haven’t gone through it themselves, because how could a word like “pop” or “tick” be seen as bad? I would have a set list of ‘good’ words to recite in my head whilst doing each behaviour, but if one ‘bad’ word came along I’d have to start the whole process again. It got to the point where it would take me at least a half hour to get from my bathroom to my bedroom, from the door to my bed, and settled. It’s exhausting.
An example of my most anxiety-provoking situation, as my future therapist would call it, was touching an object with my feet. So if I were walking across my room and touched, say, a bag on the floor with my feet, I would have to go and do all of these counting behaviours and think positive thoughts. If I thought one ‘bad’ word I would have to start again.
But why? Because touching something with your feet is related to kicking something, and kicking something means you intend to do harm or that you’re angry, and I didn’t want to hurt or upset someone in this way. I wasn’t a bad person, I don’t like upsetting people, and I thought I would do this to my family or people I care about.
That’s just an example of the sort of network of thoughts that I would spiral into, caused by behaviours that a “normal” person wouldn’t even think twice about. And it also got to the point where I couldn’t have other people touching my stuff with their feet either because that induced the same spiral of anxiety, and I would have to neutralise it with the compulsive behaviours.
Checking behaviours started to creep back in too, like checking the front-door handle 16 times (four lots of four) and keeping positive thoughts in mind, or checking and re-checking that the gas stove was off.
People with OCD tend to report that they blackout, where they try to remember something but start to doubt what they actually did or saw, or unknowingly create false memories. I felt this was the same for my checking behaviours, where I knew I had done them but couldn’t be sure if the gas was actually off, or if the door was actually locked, and I’ll go on later to say how I deal with this in the present day.
Even numbers have always been a bit of a bad habit for me, but it got to the point where friends would say things like “no because I’d have to give you two” and then laugh whenever I’d ask for one of their fries at lunch. I used to just brush it off and laugh along with them, but now that I look back it was kind of an asshole-move on their part. It goes hand-in-hand with people laughing when I say I have OCD, and them saying “what so do you clean a lot?” or “I’m so OCD too, my room has to always be tidy”. Again, don’t use it as an adjective or attribute your general cleanliness to a mental health condition. It invalidates the struggle of those who actually have to live with it.
I was in a relationship at the time and, despite there being many toxic aspects, one thing I could never fault him on was his understanding and support with all of this. He would wait patiently whilst I turned the light switches on and off, checked doors, or did my tapping rituals over and over again until they felt right. I didn’t need someone to tell me stop or that everything was fine, I just needed to work through it in my own head and not feel judged or watched.
Finally, I was put back on the CBT waiting list, and again it took nine months to finally see a psychologist. Now I don’t want to sit here and bitch about the NHS because I know it’s struggling and it’s disgusting how little funding mental health services receive (so I guess if anything I’m bitching about the government, sorry not sorry), but to this day my view is that CBT just wasn’t the right therapy for me. I already knew that my thoughts couldn’t cause harm and that these patterns and behaviours were irrational, even when I was in anxiety provoking situations I knew it, but I couldn’t stop doing them. I just think there were much better suited therapies on the NHS that could have been more effective in my situation.
After my first therapist left the clinic 10 or so sessions in, I waited a couple of months to be reassigned to another, and it took a further 8 months to finally identify a coping strategy and reach a stage where my condition could be managed. It ended up being a strategy where I would delay neutralising a thought with a behaviour for 10 seconds, walk away, count to 10, and then if I still felt the need to do it then go back and do it.
It sounds so easy when you write it down but when your heart is racing and you’re thinking of all the bad things that will happen that will be your fault, it’s exhausting and it’s one of the hardest things I’ve ever had to get myself to do, and I praise anyone who’s ever been through it too.
Where there’s one, there’s many
I finished CBT at the end of my first year of college, and although my intrusive thoughts and behaviours flared up from time to time, I could live with them and they didn’t interfere with my day-to-day living as much as before.
Cue my unwelcome roommate, Mr Snuffles. In the November of my third year of university I started to wake up in the middle of the night to rustling sounds. At first I just thought it was the bag in my bin settling or bits of slate falling down the roof. Ha, I wish.
One morning I woke up to a Mars Bar wrapper half-way across my bedroom floor, even though I know I had put it in the bin the day before. That’s when I realised I had an unwanted guest of the mouse-variety living rent-free in my room. Turns out its pals were also living elsewhere in the kitchen, who our cat Jinx (read: neighbours cat who always came to chill with us) so kindly caught for us.
Looking back, I realised that since I was little I always had the fear of going blind by touching something dirty and getting it in my eyes, but it had never manifested itself into my OCD and become a problem. Until the mice arrived, because mice carry diseases and are unclean, and that will cause an infection, which will cause me to go blind.
See? Thought spirals. They get you every time.
I started to wash my hands more and more every day and couldn’t even touch my floor without having to smother them with hand-sanitiser straight after. It got to the point where it was painful to run my hands under water and they would start to bleed, but I couldn’t just stop doing it. I would exfoliate my hands every few days to get the cracked skin off and run them under freezing cold water because it was so soothing, and then coat them in moisturiser to help with the dryness.
I started to do it outside the house too, where anything that could be seen as ‘dirty’ or carrying germs might get onto my hands, then I’d rub my eyes before washing my hands, then I’d go blind.
This went on for two months or so and my mental health was once again quickly deteriorating. When I came back to uni after Christmas they had all seemed to disappear and my cleaning behaviours died down a little, but now that I’ve had had a problem with contamination once it’s never truly gone away, and I still find myself excessively washing my hands if I touch something I even think could infect me.
During my gap year in Australia my OCD never really flared up that much, probably because I was living that stress-free beach-everyday life…
Throughout my Masters degree in -takes a breath- Neuroimaging for Clinical and Cognitive Neuroscience I was also working a part-time job at uni. The course I was on technical-heavy and known to be intense, so for the year I was in a constant state of stress and had next-to-no social life until halfway through semester 2.
You see where this is going, right?
It took a month or so but my ritualistic checking behaviours started to come back in full force. These were the same as before: checking doors, the oven, etc.
I managed these throughout the year because what more can you do, I was used to it.
At the moment I’ve found checking behaviours to be more prominent in my day-to-day life. I’m that fed up with it now that I go around and take pictures of everything just to reduce the time it takes for checks, and so if I start to doubt myself later that I did them I can just refer back to the photos and neutralise the anxiety. This is called avoidance. I take pictures of them so I can avoid dealing with the anxious state that checking puts me in.
I shouldn’t do it, the same with how I shouldn’t try to neutralise bad thoughts with behaviours and positive thoughts because I’m just feeding in to the disorder, but I do it anyway.
Probably because I’ve lived with this thing for 14 years, that’s over half my damn life.
Sometimes I imagine being able to not feeling anxious in anticipation of leaving the house, knowing I’ve got to do my checks, or not constantly living in fear of getting contaminated and going blind.
But then I think, who would I be today if I hadn’t have been through all of this? How much has living with OCD shaped me as a person?
It sparked my initial interest in studying Psychology, and whilst OCD isn’t my research interest, it was still the driving factor to my now-passion.
I’m much more empathic to people with mental health conditions, knowing that everyone is fighting a battle regardless of whether you can see it.
I’m conscious about the language I use. I don’t say “I’m depressed” I say “I feel low”. I don’t say “that gives me anxiety” (unless I’m actually talking about my OCD), I say “that makes me feel anxious”. And for God’s sake, I have the condition and I still don’t say “that’s so OCD” or “I’m a little OCD” because:
It’s not an adjective.
Mental health conditions are not an adjective.
I’ll go further into that in a future post, but it’s the main reason I never say ‘OCD’ the first time in a conversation, I’ll always say Obsessive Compulsive Disorder.
And finally, it’s made me the hella strong person that I am today. Because I’ve had some really low moments not only trying to fight a battle within my own head, but also trying to fight a battle trying to justify the condition against people who don’t take it seriously, laugh about it when you tell them you’ve got it, or (have I already mentioned?) use it and other mental health conditions as an adjective.
Okay aaand breathe.
If you’ve made it through this whole post then congrats! I really hope this has been helpful in any way to anyone reading it. I could write a whole thesis on my experience but had to really miss out some details for reading purposes.
Some people don’t like talking about their mental health condition, and that’s okay, but if you ask me anything about mine I will talk for England because I want people to understand what it’s like, and to break any misinformation associated with Obsessive Compulsive Disorder.
If you’ve learned anything from this post, or have found it interesting, please share it on Facebook, Instagram, Twitter etc.
And if you have any questions, leave a comment or drop me a message. I’ll either reply directly or do another post answering them.
Until next time,