If you ask people who have been diagnosed with OCD what the biggest misconception about their illness is, one thing comes up over and over.
We’ve all heard it: “I’m so OCD” people joke as they emerge from their wardrobe having spent a happy hour sorting it by season. They believe OCD refers to a quirk of character, a term for their perfectionism, even a synonym for high productivity. In reality OCD is very different and when the monster rears its ugly head compulsions made up of tiny and meaningless actions can consume hours. It’s far from efficient because, after all, tapping a desk or moving an object from side to side again and again in search of the ‘right’ feeling doesn’t cross things off your to-do list.
I think this video by The Mighty is perfect to show the difference between clinical OCD and perfectionism. The film shows two young women’s days side to side. If someone you know is a repeated offender of joking that they are ‘so OCD’ consider giving this a share and maybe they will learn something new.
I found out about ‘Living with Me and My OCD’ years ago. I was intrigued and excited to hear of a film exclusively about OCD and, even more excitingly, one that is directed and produced by someone who actually has the condition. I knew straight away after being in contact with Claire the producer that she would make sure that this film would give the best insight into OCD as possible. Recently the film came out and there was a screening event in Claire’s hometown of Sheffield. The film is now on OCD-UK’s youtube channel and has been praised by OCD Action.
The film includes interviews with people who suffer from OCD. It puts right the public perception that OCD is about ‘just being tidy’. It is shocking and eye opening in all the best ways, and truly shows the many forms this disorder can take. I’d really like to praise and thank all the contributors, as well as Claire of course, for being so honest in their accounts and allowing them to be shared. Some of the testimonies brought tears to my eyes because I could relate so strongly. If you have OCD this film will show you that you are not alone. If you don’t have OCD- this film will open your eyes and make you grateful you don’t. I seriously believe that this film is an epic step in the right direction for OCD Awareness and understanding.
New year is difficult. You feel the pressure and exhilaration of trying to make this ‘your year’. If you have OCD this can become a compulsion. All year long I promise myself that I would do better on a huge array of things. Some people call it determination, I wouldn’t say that. It is constant feelings of disappointment and perfectionism and it is intensified by the season.
For example last summer I received my AS level results. I opened the envelope and was relieved that I had done well in two exams but received a ‘U’ in my other subject’s main paper. A ‘U’ is actually worse than a fail, and as I had recieved pretty respectable grades in mock exams despite being poorly I had no idea how I’d managed to get such a low grade. Had I gone into an episode during the exam? Somebody would have definitely noticed. Anyway, I went home in tears and used a drawing pin to attach the piece of paper to the side of my wardrobe. The purpose of this was to ‘make me work harder’. I knew deep down that I had worked hard anyway and that the grade was unusual for me, but I accepted and internalised that it was because I was rubbish.
A week or so later my tutor ordered my exam back to see how I’d got it so terribly wrong. She opened the paper and found that three quarters of it were missing. The exam board had lost all but one of my questions before marking and I was given a U. It wasn’t my grade after all and so it got corrected, however the piece of paper is still nailed onto my wardrobe. I must be a glutton for self torture.
The same thing haunts me with coursework. It takes ages as I read it again and again irrationally fearing it contains a murder confession or expletives, I can never hand it in because there is always something in my mind that I need to add or do to make it ‘better’. I set a lot of resolutions this new year, most of which talked about improving on 2016. What I didn’t think about when writing them into the front of my journal was that last year wasn’t a bad year. I wasn’t locked in a ward and there was no major traumas. It was pretty alright by previous years’ standards. By desperately trying to improve too much, mostly on things I can’t change, I will likely send myself back into oblivion and that would not make 2017 good at all.
This is a rambly post because my head made the first post of the year into a big deal, when actually it shouldn’t be. What I’m trying to say is:
Just try not to have a worse year than the one before and do what you love. That’s enough.
Through scrubbing my skin my hands become infected.
I was scrubbing at my hands in case they were infected.
I’m too scared to eat in case it makes me ill.
Then not eating makes me ill too.
I use hand gel to kill bacteria.
The gel cracks my skin and it’s infection prone.
I know my night meds make me feel better.
Yet when I take them I panic in case they kill me.
When the thing you use to stop freaking out gives you cause to freak out more; where do you turn?
original image © UDC
And to think people think it is about being neat…
Please note: I am safe and okay. Just struggling a bit at the moment. I’m keen to keep the authenticity in this blog and after writing I decided to publish this in my ‘recovery notes’ area. Good news… crisis services (and services in general) are a lot better where I live now!
During my years fighting OCD there has been one thing that I have not been able to think about. Sickness. I am childishly and unnervingly afraid of vomit and all things surrounding it. My ears can pick up any potentially vomitty noise; day or night; and send me into a contamination fearing frenzy. I know that this fear is irrational but that doesn’t stop my day to day life revolving around avoiding being sick. At my worst I stopped walking on grass because OCD feverishly insisted that it would make me ill. This is completely untrue but I was ruled by the fear so didn’t want to take the chance. Thankfully I’ve improved since then, although I still have to have a carrier bag tucked at the corner of my mattress should the vomit demon jump on me in the night. I don’t eat certain foods and sometimes don’t eat at all. I am a walking food hygiene rating encyclopaedia and I never, ever, go on the rides at Alton Towers.
Germs are what my OCD is ‘into’ right now. It flocks around fleeting germ related thoughts like a group of teenage one direction fans would flock around Harry Styles’ dirty laundry. OCD needs a better hobby. I try to encourage OCD into moving on from germaphobia and generally loitering in my mind through exposures: pushing the boundaries little by little and surfing the wave of fear that follows. The idea behind this is that each time you do the same exposure your anxiety will fall faster, until eventually the exposure doesn’t bother you at all. For over a year there has been one challenge I have seen lurking in the shadows and waiting to pounce. Sickness. Being sick out of the blue. Vomit. The smell, the germs. Everything about it.
It happened last week and I dealt with it. I tried hard not to sob and reminded myself that there was air in my lungs and that I was definitely not going to die. That was the most important thing to remember no matter what OCD wanted me to think. I was assisted by the sleepover member of staff who kindly swapped my plastic bags over when needed and provided general moral support. But the most important thing is that OCD was wrong.
The timing of this impromptu exposure wasn’t brilliant- it had been a bad day and I had taken both my night medication and some extra lorazepam to calm me down. Therefore after the first sick session I was completely convinced that the additional medication would render me unable to wake up if I was sick again in the night. I was scared that I would choke as a result and die. That however was never going to happen, the thought would only inflict more panic and ‘Quelle Suprise’- I’m still alive and kicking today.
The beauty of OCD exposures is that they can spring out of nowhere and are the best exercises in optimistic thinking. No matter how dire the situation is, no matter how unfortunate the circumstances, it’s a huge air punch moment when you get to the other side. You now have evidence to show you that should the situation arise again, you can definitely make it through. Therefore the more awful the exposure circumstances the better. For example, I’m glad that a mysterious vomit bug hit me on the night that I happened to have taken extra medication. It doubled my terror at the time, but ultimately I now feel safer. I feel safe in taking my lorazepam if I need it because I periodically know that; should I be sick, I will be alright. By the same token if lorazepam is not involved when I inevitably vomit in the future I can say to myself: ‘Haha! I definitely know it will be alright and I don’t even have to worry about having taken extra sedatives this time! Hoorah!’.
It’s a win, win situation.
Take that OCD.
In French there is a saying: “le mieux est l’ennemi du bien”. Translation: The best is the enemy of the good. I can’t think of a phrase more truthful about mental health recovery.
The best is doing everything. In my head this is running around; getting top notch A Levels, spontaneously producing poetry and blog posts, finding somewhere great to live, learning more languages, pointing my finger at the government on Twitter and… Being healthy I guess. But if I’m honest my ideal doesn’t specifically contain being recovered. It’s just a fact that in order to achieve these things I would have to be. I haven’t achieved this basic requirement but I’m still going for it full throttle. Day in, day out I’m turning up to the tracks wearing pizza boxes on my feet and hoping to be Usaine Bolt. I’m tripping and falling and generally being stupid because, the truth is, recovery is a load of balls!
You have to, like everyone else, juggle like crazy to catch all the things life throws at you. You didn’t learn to juggle properly so, inevitably and without warning, you lose control. You drop everything and have to start again.
The bit I need to get my head around is that no one learns to juggle with eight balls. They start with one and work their way up, dropping odd ones on the way but eventually getting into the rythmn of life. Of course you can stop juggling and put them all down: but that is your decision. You’re being strategic and stopping for a break before everything crashes down. After you’ve rested, eaten a few cheesy snacks and gulped a cup of tea you can start juggling again. Crisis averted.
I apologise for the long analogy. But recovery is a load of balls and I have to learn to juggle one way or another. It’s just deciding what takes priority. By trying to get the best am I missing what would actually be really, really good for me?
Yesterday I had the joy of going to OCD-UK’s national conference. I found out about it completely by chance during OCD week last month. The conference was in my nearest city, York and I didn’t know what to expect. Maybe a lot of anxious-looking people talking about what makes them anxious. A bit like the poem ‘anxiety group‘ by Catalina Ferro. But It wasn’t like that at all. The people looked and acted normal and were, by all accounts, lovely. During my time at both my CAMHS units I was always the one who had OCD- or OCD had me. It was my primary diagnosis and the one that had dropped me into the white-walled rabbit warren. None of the other patients really understood my condition as nearly all of them were there for depression. It was lonely.
So for the first time I was surrounded by people just like me. As the fantastic Ashley Fulwood, CEO of OCD-UK, told me: “Today you are normal!”. The speakers were fantastic and I was particularly moved by Ian Pulestone-Davies’ honest and humorous account of being an OCD warrior and actor. Ian plays Owen from Coronation Street, so I made sure I got a picture! He was also pretty keen to help out with my various creative adventures so watch this space!
I attended the teen workshop where there were a small gathering of young sufferers and their parents. We mostly played ‘who has ever’ which could best be described as a drinking game involving swapping seats rather than slugging down ethanol. “Who has ever… Had a hand washing compulsion?”, “Who has ever been hospitalised?”: this simple exercise made me see I wasn’t alone. As a group we also also created these fab images of our ‘OCD bullies’. I paticularly liked the one that has been viciously scrunched up! The talks and workshops were all recovery based. At times I felt a little sad because I feel that my recovery from OCD is hindered a lot by EUPD. Where generally exposures are the way forward for OCD recovery, EUPD means that an exposure can quickly put me in a very dangerous place mentally. It’s why I’m currently not receiving any CBT or ERT from my community mental health team as they try to stabilise me. I wish that my conditions didn’t make a horrific montage of confusion in my head.
It was great to be around people who properly ‘get’ OCD. It was fantastic to air some of the pent-up frustration from every chat that someone says they are “so OCD” for checking their hair straighteners are turned off. Anxiety keeps us alive- it makes sure we check the straighteners so we don’t die in house fires. That’s what anxiety is supposed to do. OCD is when you have to do the same thing again and again to momentarily lift the all encompassing fear. Recovery is possible- but it’s hard. There is no cure. You just have to fight for your life. Days like today make me think I can do this. Watching Ashley lick his shoe made me desperate to get there. I’m determined.