What It’s Really Like to Live With Obsessive Compulsive Disorder

Photograph by Clem Onojeghuo

We’ve all been there, washing our hands after touching a dirty object and joking to the person next to us: ‘Urgh, that OCD again’ *LOL*

And that’s where my rant begins. 

Dr. Google might lead you to believe that you suffer from every condition under the sun, and you may well have symptoms of many mental health illnesses. Though we all have bad days, worry and have obsessional tendencies, we don’t all have depression, anxiety or OCD. There’s a dramatic difference.

OCD is so much more than repeatedly washing your hands. Even in that case, it’s repeatedly washing your hands because you irrationally fear contamination and disease, not because you clearly have dirt on you. There are many facets to the disorder, and many types too (I don’t suffer from contamination OCD in the slightest, for example). It is, in fact, a disability. 

It’s a disorder that is beyond complex. I don’t fully understand it and I don’t think many mental health professionals claim to fully understand it either. This article won’t do it justice, nor will any article ever. I think you have to live and breathe it for that, and even then it’s a master of disguise. If I’m asked to describe my symptoms, I quite literally don’t know where to start. That in itself is a mental health challenge!

Simplistically, I see OCD as a anxiety disorder affecting my thoughts. I struggle to distinguish ‘me’ from my OCD thoughts (they can appear irrevocably true); I struggle to process and let them go, because they always have to be ‘actioned’ rather than naturally ignored; and, as a result, I do all I can to avoid them, which never ends well. I fear thoughts, because my thoughts are largely based on fear. I fear the fear. When you consider we can have between 50,000-70,000 thoughts a day, you can see how this might become a problem. The word ‘exponential’ comes to mind. 

My mind is almost permanently racing, just like when you have an episode of anxiety. The difference between OCD and Generalised Anxiety Disorder (GAD) is that OCD sufferers engage in maladaptive, compulsive and ritualistic behaviours in an attempt to reduce their anxiety. Basically, the ‘obsession’ causes stress whereas the ‘compulsion’ is the behaviour to reduce it. It sounds fairly smart, trying to invent self-care tools to decrease anxiety, but actually it’s a double-edged sword. The obsessional thought is an irrational bully at best, creating fears and scenarios which are exaggerated or an illusion to begin with, whereas the compulsive (and repetitive) behaviour to ‘neutralise’ the thought paradoxically just ends up creating more anxiety, making the whole thing worse! 

Another paradox for you: my obsessive thoughts want everything to make sense, be controlled, understood and certain, leading me to ruminate over the tiniest thought that pops in my mind (led by the compulsion to ‘complete the thought’ in order to reduce anxiety). This leads to more opportunity for obsessive thoughts and in turn, yes, MORE bloody anxiety. 

Make sense? Here’s a daily example: I repeat a word/phrase to myself, all day and everyday. The word sometimes changes when I feel it’s no longer ‘working’, but essentially my brain thinks that by repeating ‘be present’, for example, I am reducing the general anxiety that I’m feeling caused by my thoughts. The aim is to take my mind off my anxiety and focus on what’s happening, here and now, because that’s how I want to live. As you’d expect though, repeating ‘be present’ thousands of times a day makes you both less present and more anxious. 

It’s the same OCD which makes me have so many irrational and obsessive thoughts in the first place that then makes me repeat a phrase thousands of times to be ‘present’, just to counteract all the thoughts I didn’t need anyway! ‘Think this. No, be present. Think that. No, be present. But how about THIS.’ Argh! Think of it as a petulant three year old arguing back and forth.

Another simple one: I have an obsession that I might forget or that something that did just happen, actually didn’t. For example, when I turn something off, my mind questions whether I actually just turned it off. Another paradox: when I take the tablet I’m prescribed to help my OCD, I question whether I actually just took it. The irony. 

Often the anxiety is bad enough I’m compelled to count my pills to check the amount I’ve taken matches the amount of days I’ve had the prescription, verifying if I’ve missed a day. I’m then compelled to count a few more times, just to check I got the maths right. I then retrace my steps. Where did I take it? Do I remember feeling the tablet on my tongue? But hang on, what if that’s yesterday I remember and not today? I then really focus on what could’ve gone wrong. Did the tablet, which I do remember taking, fall out of an imaginary hole in my throat, for example? I’ve even rummaged around on the floor a few times before, just to check if it had fallen out of this imaginary hole. It gets worse. My compulsion to count means once I’ve done all of the above steps and thought ‘ok, I definitely took my tablet’, I’ll repeat the whole routine again. Then I really like multiples of 5 because that’s what feels right, so I should probably do it 5 times. If I do it a 6th time because I’m still feeling too anxious to cope, I had better go to 10. Just. To. Be. Really. REALLY. Sure.

Are you thinking what I’m thinking? Isn’t this borderline psychotic behaviour? The answer: no, and yes. The difference between OCD and psychosis is that OCD sufferers know that their obsessions/compulsions are illogical or irrational. They know that their routines won’t stop anything bad from happening. They know it’s interfering with their lives. They know it’s making them depressed. They know it’s not how they want to continue to live their lives. We just do it anyway. *rolls eyes*

There are times, however, when you do end up displaying psychotic/delusional behaviour. It all comes down to the level of insight you have: that’s whether you clearly believe your thoughts and behaviours are unreasonable or normal. If you had poor insight (by thinking your obsessive thoughts are normal), before you’d have been borderline psychotic. Now, you might just be diagnosed with OCD with absent insight/delusional beliefs. So they’re similar, but not quite the same. I’m not sure what called for the change, perhaps just a ‘rebrand’.

Your level of insight can of course change. For the majority of my adult life I was in denial I had anything wrong with me. I certainly didn’t have any insight and, as a result, I was much more delusional back then. Extreme stress (caused by unexpected life changes for example) or acute panic can lead to a ‘flare up’. Unfortunately 2016 proved to be an ‘extreme stress’ year for me and I became even more deluded. I’m fairly sure I was borderline psychotic then! Thankfully, moving forward to now, whilst the medication/therapy might not have reduced OCD symptoms or my racing mind significantly, it has allowed me to have greater insight, which means I’m less deluded. It just means I’m also more aware of the symptoms I’m insightful of. Yay! 

This insight means I know when my thoughts are irrational. I know there’s nothing to fear. I know what I’m doing is unproductive and has no purpose. But I still fear that by not following the compulsion, my anxiety is going to skyrocket and so I do it (creating more anxiety than otherwise). Brilliant. 

The aim of Cognitive Behavioural Therapy (CBT) in the case of OCD is to expose you to the perceived threat and reduce the anxiety associated with it. In this case, it might be to try (and you really have to try – it’s like the strongest urge you could ever imagine, like an addiction) not giving in to that initial anxiety. So not counting back to check if you took your tablet, because you just know you took it. At first you do feel anxious. You really want to carry out your routine (physical or mental) to reduce that anxiety. But you have to be so strong and stop yourself because you know it’s maladaptive and creates more anxiety than before. The trick is just to let the anxiety to follow the compulsion pass, which is much easier said than done, especially when you have brain chemistry and a decade of conditioning working against you. 

That’s why I found therapy so tough to begin with. I was so depressed that I had no interest or motivation in doing all of these experiments in my daily life, so I had to focus on the depression before I could even start on the OCD. Eventually the aim is to see that the whole process of reducing the anxiety creates more anxiety and that there is an alternative. A popular analogy is to visualise OCD as an annoying, but harmless, parrot pecking away at you inside. The more you disrespect OCD, the less power it has over you. Still, it’s all very much easier said than done and by no means am I preaching, because I still struggle with the symptoms I describe in this article, despite my continuing treatment.

Intrusive thoughts, a slightly taboo OCD symptom, are by far the most scarring. You can just be walking along on a nice summer’s day and then BOOM. What if I’m a paedophile? What if I’m a rapist? What if I raped someone when I was younger and forgot about it? If I keep banging my head against this wall hard enough, will it all just finally end? Jump in front of this train, I dare you! What would happen if I tried to kill myself right now? What if I slit my wrists and laid here watching myself die with nobody around and I regretted it instantly? What if I was calling out but nobody was there to help me? I could then spend the next 10+ minutes in a flurry of thoughts imagining details as tiny as would I call the ambulance first or my dad? What would I say? How would I feel? What if nobody got to me in time? What if I let everybody down? What if they thought I meant it? What would I write in my suicide note if I did mean it? 10+ minutes later I ‘enter’ the real world and just sit there in complete shock at what just went through my mind. Again, it’s all led by my compulsion to ‘complete the thought’ as opposed to just letting it go naturally. It’s hard to just carry on as normal after that! I’ve actually felt suicidal before, but that was related to depression. These OCD-related intrusive thoughts can appear wherever you are and however you feel. I don’t ask for them. I don’t mean them. They’re just my imagination. They’re fears, not reality. But they’re there, and hard to stop. It’s important to note that OCD sufferers are NOT any more likely to carry out these acts (despite the 10x increased suicide risk). In fact we’re so horrified by them we’d do anything to avoid them!

Alone, each symptom sound fairly manageable. Together, they’re a nightmare army. Continuous. Persistent. Exhausting. Infuriating. Paralysing. OCD causes a chronic and significant decrease in your quality of life. How can you ever feel truly happy with all of this going on? Each day is a battle, and OCD is forever a strong competitor.

Of course, all of this boils away in some evil melting pot to create implications: dealing with change or stress is clearly compounded (I don’t need more stimuli for thoughts to thrive off) and working on letting go is incredibly difficult when the compulsion is always to ‘complete’ (i.e. ruminate) your thoughts; feeling ‘present’ or involved in life at all is rare; physical symptoms such as panic attacks arise; I avoid certain activities, places and the world in general sometimes, again a compulsion caused by the irrational perception that they’ll cause anxiety (note that avoiding rational anxiety – being near a lion for example – is clearly still normal, even if you suffer from OCD); sometime I just dread waking up because then it begins all over again. Sleep brings me much needed peace; and I also have to entertain other illnesses linked to OCD (such as BDD, which I’ve written about before, and depression/severe depressive episodes). It affects the way you think, feel and behave (and man do I have some weird ass behaviours). 

So, do you still think you have OCD?

When I was diagnosed with OCD I received so much love, acceptance and support, which I’m forever grateful for. However, I do think OCD lacks far behind in public understanding compared to depression and anxiety, perhaps due to its complexity. Whilst I’m sure all comments made to me post-diagnosis came from a good place, not all of them were helpful:

Oh you’re just depressed. You’re just anxious. It’ll pass. We all have problems Jamie. Think how ‘x’ feels because of that really horrible thing that happened to them. Oh yeah I probably have that too. Oh is that it? I thought you were going to say you’re dying! It’ll be good for you. We all have these things, you just need to channel it. It’s all just mind games. You just need to learn how to trick your mind, that’s all. Don’t be silly, you don’t need therapy. MEDICATION!? No way, you’re not a head case. Oooooooh so that’s why you’re always late? And that’s why you spend so long in the bathroom(/panic room)? It all makes sense now!

A lesson to us all: some of us are silent sufferers. I might look fine. I might not be limping down the street in bandages, but you have no idea what goes on in someone else’s mind unless they tell you. And when they tell you, accept and honour it. If they feel something and it affects them in the way they tell you, then that’s valid and you can’t say otherwise. Educate yourself but don’t become their armchair therapist. Just love them for who they are and get them to seek the professional help they need.

Anything else is, quite frankly, patronising. Those comments largely just made me feel like something’s wrong with me, on top of there actually being something wrong with me. Like somehow I wasn’t handling this correctly. That I should feel blessed for such an honour to have OCD. The idea that I can just use this to my advantage at the click of my fingers when all I feel is paralysed and unable to move in either direction – on top of being depressed – making me feel like a complete failure. You make me feel like if I was stronger perhaps this wouldn’t affect me so much, but I know that’s not true. I don’t see how I could be any stronger right now. The real answer is you just don’t understand.

When you’re depressed, the world wants to help you get better. When you have OCD, you’re told to channel it. What does that even mean? You clearly don’t have OCD! I get it, it says obsessive in the title and being obsessed about things can sometimes lead to great success. Sporting legends, for example, are often obsessed with their sport. Having a rational obsession though is very different to suffering from OCD. Let me tell you, I am not ‘obsessed’ with checking my bag 10 times whilst running through a mental checklist to make sure I haven’t lost anything since the last time I checked it, just 10 minutes ago – paralysed by anxiety over the most irrational things. I can assure you I’m not practicing this many times a day because I want to be the best in the world at bag checking!

I do understand though. It’s relatively harmless. It’s just lack of education. But stigma is always a tough pill to swallow. We all just want to be understood, right? The thing is, I don’t think people realise how devastating OCD can be. So please please please, if you say how ‘OCD’ you are: mean it.

OCD at its worst is fearing the world, everything in it, yourself and every second of the day. OCD can be wanting to harm yourself because you simply can’t cope with the constant bullying from your own mind any longer. OCD is not a laughing matter.

Whether you suffer from OCD or not, I hope this has provided you with further insight into the condition. I truly believe awareness is the key to transforming mental health for the better – for you and for those around you. 

If you seriously think you have OCD (and bear in mind my symptoms are severe and so just because you might not associate with what I’ve written, it doesn’t mean you don’t have it) please don’t be afraid to seek help and treatment. It’s the best thing I ever did. Even the simplest case of OCD can have a huge impact on your life, so don’t suffer alone. You can speak to your GP or find out more about symptoms and treatment at: www.ocduk.org

Sufferers: I wish you a fearless future! x

Please note: I’m not a mental health professional and I’m very conscious how complex OCD can be. This article is simply an insight into my first-hand experience of suffering from the disorder. I’ve done my research and checked my facts, but if you feel something is misleading in my article then please don’t hesitate to comment and I’ll adjust where necessary.