A Letter of Hope to my fellow OCD sufferers: Living with Obsessive Compulsive Disorder (OCD)

“Oh, I am so OCD, everything has to be in it’s place!”
"I’m a little bit OCD”
”I’m very OCD - I like everything to be clean”
"Sometimes, I forget whether I have left the iron on at home. So OCD!”

These are common phrases that a lot of us have probably heard said before. You might have even been guilty of using one of the above phrases, it’s kind of become commonplace within society to say these things.

I’m incredibly open about my own mental health, and I think it’s so important to share vulnerable stories so that other people can see they are not alone. But there is one part of my mental health that I’m perhaps not so open about, and that is my OCD.

When I post about my mental health, at times I visualise my OCD as a locked chest inside my brain. A locked chest that I would prefer to stay locked, because if it opens, my vulnerability will spill out and I won’t be able to take it back and lock it away again. Frankly, the thought of it all makes me feel a bit sick.

As a society, we are getting so much better at talking about mental health. I feel like we are at the point now where if someone says they are depressed or anxious, most of us are able to empathise and accept it, and provide support. But there are a whole list of other mental health conditions, including OCD, that are met with some confusion or a lack of understanding at times.

When I tell people I have anxiety, I see the nod of understanding, almost like a nod of approval. But if I happen to mention my OCD, unless someone has experienced it first hand, often it is met with a look of confusion. I don’t compulsively wash my hands, I hate cleaning, things don’t have to line up neatly in my home. So how can I have OCD?

Whilst for many, OCD may rear its head by way of external compulsions (that can of course be associated with germs, cleanliness or checking that things are switched off), that is just the tip of the iceberg.

I feel like today is the day to unlock that chest, just a little bit, and share my story.

In my teens, I started to find my anxieties really amplifying in my brain. Whilst I had been prone to excessively worrying for quite some time, these thoughts became absolutely debilitating.

As human beings, our brains work in funny ways sometimes. You might be walking on a bridge, for example, and have a weird thought pop into your head like ‘imagine if you just jumped off’. You might be driving in your car and just have a random vision of your car veering off the road. For most, these are just fleeting thoughts that we don’t pay much attention to, they pass through your brain like little clouds because they are nothing to worry about.

As an OCD sufferer, I would take these thoughts at face value. ‘Why would I think about jumping off a bridge? Have I lost my mind? Am I suicidal? I am not normal. Why am I not normal? Do I actually want to jump off of a bridge? No. Of course not. But why would I have a thought like that then? Am I capable of doing something so drastic? I am an awful person’ or, ‘why would I have a vision of me veering off the road? Do I actually want to do that? Of course I don’t! Then why would that picture pop into my head? Am I capable of hurting someone else in my car? Should I be driving right now? What is wrong with me?’ And that just scratches the surface.

As soon as I fixated on one of these thoughts, it would consume my brain for hours on end. Hours and hours. I would feel completely paralysed by the million racing thoughts running through my mind. I couldn’t sleep. They kept me awake at night. If I switched on the TV to try and distract myself, the news would come on and something would trigger another obsession. I couldn’t escape myself.

I certainly couldn’t just stop fixating on my thoughts, because what sort of horrible human being would I be if I just let these distressing thoughts pass me by? I had to keep replaying them over and over and over and over and over and over again until something within me felt confident, or felt ‘right’. Then onto the next worry or obsession.

I started googling my thoughts, to try and seek some level of reassurance that I wasn’t completely losing my mind. That is when I started to find some information about OCD. I started to see this one term flooding online message boards: ‘Pure O’, sometimes known as Pure Obsessional OCD.

‘Pure O’ is a form of OCD characterised by intrusive, unwanted, and uncontrollable thoughts (obsessions). Those with Pure O may not engage in obvious behaviours related to their intrusive thoughts, such as counting, arranging, or hand-washing, they instead deal with hidden mental rituals.

Every uncomfortable or unwanted thought that filtered into my brain would undergo an intensive mental analysis and extensive review. I would then seek reassurance (another common symptom of Pure O) by dedicating hours to online research on anything that popped into my brain, or subtly seeking reassurance from those around me, or just avoiding situations that I knew would trigger me altogether. I was exhausted.

To those on the outside, it sounds completely illogical. Why spend so much time worrying? But it is completely all-consuming, and it feels out of your control. Most ironically, the thoughts that you obsess over are usually the things you fear the most. And the very fact that you spend time obsessing over them shows how much they go against your moral compass.

I trawled through online forums and essentially ‘self diagnosed’. As I learnt more about OCD, I learnt more about managing it, but I didn’t seek professional help. I really should’ve.

That meant that inevitably it crept back into my life again a couple of years ago after I moved to Australia. I remember my wonderful partner, Michael, coming home from work one evening and I was essentially sat in bed becoming more distressed by my thoughts by the second. ‘What’s wrong Abs?’ he asked. I couldn’t tell him. ‘He will think I am crazy, where would I even begin?’ I thought. So I didn’t begin. I didn’t say anything, except that I had anxiety.

But what I did do was go to see a doctor. The butterflies nearly burst out of my stomach as I sat in the waiting room, and the words that I had been holding in for so many years finally escaped me: ‘I am pretty sure that I have OCD… And it’s really really bad. I am not coping. At all. My thoughts are absolutely consuming me. I thought it had gone, but it’s not gone’. The doctor looked at me, and he smiled gently. ‘Wow Abbie, it sounds like you have been having a really awful time. Can you give me a moment? I have a great friend who is a psychiatrist and I think they will be able to help.’ after an in depth chat with the psychiatrist, the doctor handed me a prescription and the business card for a local therapist, ‘you are going to be OK’ he said, ‘I think this will really help you. Here is my number, call me at any time.’

I walked out, and though I was still exhausted by the thoughts that had been consuming me for what felt like every minute of every hour of every day of every week of the last couple of months, I felt a big weight lift off of my shoulders.

After a month or so of terrible medication side effects, a couple of therapy sessions and a great book recommended by my therapist (The Happiness Trap by Russ Harris), things felt a little less scary.

My OCD loves to rear its head when things feel particularly stressful or I go through life changes, and its voice crept back in to such a high volume, like a big blaring car radio in my mind, when I decided to try stop my medication a few months ago. But my journey means that now I know what it is. It is not me. I am not my OCD, and now I have the tools under my belt to manage the beast that it is. And I am ok.

And if you happen to be going through OCD, you too will be ok. I promise that you can live your life normally and manage this condition if you seek the help that you need and find what works for you.

Last week, I was drinking my morning coffee with Michael when I decided to open my OCD chest, and throw away the key. I talked him through the intricacies of OCD and exactly what I mean when I say ‘my OCD is bad at the moment’. The look of confusion drained from his face, which then lit up with a look of empathy and understanding. I felt a little bit free, knowing that I had spilled out those vulnerabilities to the person closest to me.

I know it’s scary, but opening that little chest in your brain up might be the best thing you ever do.