Living in fear. You have no real life, no relationships. Moving from day to day gripped by anxiety, doubt, jealousy, panic… your stomach, hands, jaw, clenched from stress. You’re scared, depressed. You’re unsure of who you are anymore, you’re questioning everything. You’re a fraud; if people knew what was going on in your head they wouldn’t want to know you. You’re crazy, worthless, a failure. You are the bad person you fear you are. You’d be better off dead. This is what it can be like to live with OCD, and to varying degrees this has been the last eleven years of my life.
Here goes… without doubt the hardest page to write. Eleven years of things I’ve been to scared to talk to anyone about – other than my CBT therapist – due to how they might react or perceive me. I find it hard enough telling myself that I am not the awful person my mind convinces me that I am, without opening things up to everyone else. I’m terrified about this, about the #OCDwalk. But what am I trying to do here?… I want to make a difference to the lives of those suffering from OCD – that means setting an example – and that means in some way I’m going to have to change my own life. Besides, no one else’s opinion can possibly be worse than what I think about myself sometimes. I’ve had intrusive thoughts I’m still uncomfortable talking about openly, but I have included a page that lists the main themes people with OCD suffer from. By writing this I hope to be someone others feel they can relate to; who they could talk to if they wanted, who wouldn’t judge them, because honestly, that’s me. Believe me, I’ve experienced the worst I think OCD can throw at me – at times I still do. I get how terrifying it is; what it’s like to wonder if you’ll ever be able to have a ‘normal’ life. Unfortunately it took over 10 years and everything falling apart, for me to realise what I was dealing with – that I needed help.
The lowest low
December 2014 and on into 2015 was unquestionably the worst period of my life. I have never attempted suicide, but at that point in time I was so utterly petrified by the intrusive thoughts permanently inside my head – and what they might mean – that I wondered if I might be better off dead than continuing to live like this.
I’d been studying at University when the worst of it occurred. I’d experienced deeply unsettling thoughts before – I hadn’t known they were called ‘intrusive thoughts‘ at the time – but never to this degree. Fear and anxiety consumed me. I was so afraid. It was all I could think about and my thoughts spiralled out of control. A week later and I was having to end a relationship with someone who’d felt like the best thing to happen to me in a long time. Two weeks after that and I’d decided I was going to have to leave my studies – which meant having to leave my accommodation and housemates. I think I may have cried more during this period than in my entire life combined. It affected my appetite and I was afraid of sleeping incase the thoughts made their way into my dreams; which at times they would.
I went to the doctors and finally told them – without doing into any detail – that I was experiencing these horribly unsettling thoughts, and that I couldn’t cope anymore. They gave me the number of a helpline to call. I had been given numbers in the past when I had spoken to doctors about my hand washing compulsions and various worries. I had always been dubious of such services, believing that they weren’t the kind of help I needed, that I should be able to beat this by myself, or frankly that they wouldn’t work. I was wrong on all these accounts. Furthermore and crucially, I had always been to scared to talk to anyone else about my mental health – the subject matter was bad enough for me to deal with alone, I certainly didn’t want to start having conversations about it!
But honestly, I don’t think any doctor ever explained to me what these services were really about, or the additional support they could lead on to. This time I’d promised myself I was going to get help. There was no way I was going through the worst months of my life, having put others through some of that pain and then not do something about it. I phoned the helpline. It turned out that after registering I had to wait several weeks for someone to call me. In this time I moved back home. This also meant I would need to start again and re-register with an equivalent service through my local doctors; frustratingly this is just how it works.
Whilst I waited to hear back, my thoughts continued to get worse. Everything seemed to trigger them. I was gripped by fear and anxiety overwhelmed me. I didn’t know who I was anymore, or what to believe; I felt like I was loosing my true self to this nightmare. I started questioning everything… had I always been this awful person my mind was telling me I was? Crawling back through memories, overanalysing and re-interpreting past events; looking for examples that might confirm my biggest fears to me. Sometimes my mind seemed to be urging me to give in to the torturous thoughts. I was on a downward spiral of self-doubt. New intrusive thoughts began to arise. I began driving quite recklessly between home and university visits, almost not caring if I lived or died – of course I did care. I thought I was nothing… worthless… I didn’t know where I went from here, what to do with my life. I felt like a fraud… that if the people around me knew what was going on inside my head, they’d want nothing to do with me. I felt alone and started thinking I’d have to come to terms with spending the rest of my life that way. Not knowing or understanding what’s happening to you is utterly terrifying. I tried praying.
I started on anti-depressants – which having convinced myself I was an awful person I felt I didn’t even deserve. Luckily I had a couple of people looking out for me during this time, even if I felt I couldn’t talk to them. I could certainly see how someone suffering alone, may try taking their own life. The government needs to take mental health seriously; improving funding, waiting times, staff and advertising. When was the last time you saw an advert informing people of what signs to look out for from mental health, or where sufferers could go to find help?… I can’t remember ever having seen one. Sufferers cannot be left with negative and suicidal thoughts clouding the mind whilst they wait to receive treatment. It’s why we need a more open society where people are not fearful of talking about their thoughts, taboo subjects, mental health.
On the 19th February 2015, I got a life changing phone call from J, from the NHS 2Gether Let’s Talk service. J asked me questions about what I was experiencing. I was extremely nervous about what I would have to talk about and going into any detail. But I couldn’t waste this opportunity and so tried my best to answer and talk. J made it easier by being able to second guess the majority of my worries; she could ask me questions that only needed simple answers in order to build a picture. Through her experience she was able to reassure me. She helped me understand that I was not alone in this, that she had worked with and helped many others suffering from the same thoughts and mental health issues that I was experiencing – what I was experiencing was a diagnosable condition. I can remember being taken aback when she told me the thoughts – the intrusive thoughts – tormenting me were a part of OCD. I wanted to say, ‘no wait, you don’t understand…’. I mean, I’d been aware that I had a history of struggling with OCD – with compulsive hand washing – but that was something else, something different. I’d brought the OCD up to put it out there – to show that I’d struggled with other things mentally in the past. But I was wrong. It turns out I didn’t know the extent and truth behind Obsessive Compulsive Disorder.
I’d been aware that I’d been suffering from OCD for many years. At around age 15-16, I’d read an article in FHM magazine about sexually transmitted diseases and the fact that some of them – like the herpes virus – were incurable. Whilst this thought worried me, I moved on from it. I hadn’t realised it had also implanted a deep fear in me that would manifest itself several years later, aged 20. On a night out suddenly the memory came rushing back to me – what if the person I’d been in contact with had an incurable STD that could have transferred to me. I began to panic and due to lack of knowledge, rational thought went out the window. When I got home I stood at the kitchen sink and washed my hands over and over again until I felt I had reached a point I was somewhat content with. Everything I’d had on me, my clothes, phone, wallet and all its content I discarded.
But the thoughts and the fear didn’t go away; instead they continued on a downwards spiral of worry and doubt, of ‘what if’s?…’, of worst case scenarios. Over time I became afraid of my own body and of making my family ill. I became a hypochondriac, always looking out for signs of a potential illness. In the years that followed it was usual for me to spend up to 30mins washing my hands after each time I used the bathroom; a bath could take far longer. I’d want to cleanse my hands to make sure I wouldn’t transfer potential germs to other surfaces. In reality they were all hypothetical ‘what ifs…’ I was fearing… but I was to scared of the possible outcomes so as not to try preventing them. I had to stop using public toilets. Likewise I became increasingly aware of what other people using public toilets would go on to touch. I avoided handshakes with other guys, I would use my sleeve to open door handles, to press buttons. I would need to change my clothes or wash my hair if I sat in public seats. I didn’t like using public objects such as shopping trolleys or petrol pumps, I would wipe over surfaces before other people could get to them. At some point it stopped being about STD’s and instead a fear of diseases and germs in general; a fear of contracting something… and a fear that my lack of action could lead someone else, someone I cared about, to become ill.
Making excuses, telling white lies and hiding the truth becomes second nature in such a situation. You don’t want to seem crazy, nor do you want to talk about what’s really going on. Of course, after a while the ones closest to you start to notice the abnormal behaviours, the hand-soap going down, the avoidance of touching objects, of situations; the time you are spending in the bathroom. I got into big arguments and fights with my family. I later learnt this about the reason behind compulsive actions such as repeated hand washing…
“Someone without OCD finishes washing their hands when they can see their hands are clean. However, someone with an obsessive fear of contamination finishes not when they can see that their hands are clean, but only when they feel ‘comfortable’ or ‘just right’. This same principle can be equally applied to other compulsions.”
David Veale & Rob Wilson. Overcoming Obsessive Compulsive Disorder, p.18
Due to STD’s being the root cause behind my thoughts, I felt to uncomfortable talking about them with anyone. Furthermore I feared going to the doctors – the door handles, the touchscreen, sitting on the chairs, having the doctor examine me – And all that was without talking to them about something I didn’t want to, or really know how to. I did reach a stage where I was able to write some things down in a letter and present them to the doctor. In all honesty I can’t remember where it got me. I can remember being told that STD’s couldn’t be caught in ways I was fearing, being advised on cream for my hands and given printouts over the years with numbers on them for helplines to ring…
I can’t ever remember a doctor having a conversation with me about mental health, about intrusive thoughts, about OCD… connecting the dots. And thus things would continue much the same – me not wanting to talk to anybody about it, believing I was the only person experiencing thoughts like this, that I was in-part crazy – despite knowing why I was doing the things I was doing and thinking I had good reason to. I concluded that this was something I would just have to live and cope with on my own.
Over the years my OCD continued. At some stage my hand washing rituals got ‘better’… I would still wash them an unnecessary number of times throughout the day, but it took a far reduced number of washes before I felt comfortable with moving on. Living like this became my norm – still suffering from upsetting, disturbing thoughts that prevented me from living a ‘normal’ life; making me question and doubt myself. I suppose I settled into a life with OCD. This brought with it periods of depression, self-loathing, deep unhappiness, mood swings and fuelled my life battle with low self-esteem and confidence. Nine years later and the arguments with my family continued. My life was a mess, I hadn’t really achieved anything. Something needed to change.
Moving away to university helped somewhat. I’d spent the last ten years largely isolated, without friends. But being around other people helped to put some things into perspective – seeing how they just got on with things free from the worries that inflicted me. I began to loosen up somewhat. But then one day, coming to the end of my first term, my mind snapped. All of a sudden a thought flashed through my head that was to much for me. My world fell apart.
I needed help.
‘Yes but what if?…’
On April 8th 2015, I had my first meeting with J, to discuss my treatment plan. She would be my talking therapist for Phase 2 of Cognitive Behavioural Therapy (CBT). Phase 1 had been our initial phone call – an assessment for whether I qualified for the service. For Phase 2 I was going to receive six, one hour long sessions – after which I could move on to Stage 3 with a different therapist, if it was felt I needed it. This unnerved me as it would mean opening up to someone new all over again. Also six hours worth of therapy didn’t seem like it could be anything close to being enough! Of course between sessions I would be responsible for doing my own research and work… but was this really all the help available? What’s more… the concept behind CBT is exposure – prolonged exposure – to the situations and thoughts that create the anxiety and fear within you and then sit with these scary feeling.
My life with OCD up to this point had been about avoidance. Relentlessly washing my hands to prevent myself or others becoming ill. Avoiding situation, going out of my way to not use something that could cause myself or others danger. Leaving university. Changing the TV programme, radio station, webpage to avoiding news stories that would make me think I too was a terrible person. There were even words I had started going out of my way to avoid typing, due to thoughts they would conjure up – there have been whilst typing this – I’ve written them regardless. But it was time to face up to the mental illness that had – as it turned out – controlled my life for over a decade.
I threw myself into CBT. Perhaps I threw myself into it to hard; as reading about OCD, working on my OCD, writing about my OCD (I chose to document all my intrusive thoughts and how I was feelings about things in a diary) were largely all I spent my days doing. Learning about OCD was fascinating, but offered a scary insight into how the mind works. All this time you feel like you are in control of your life – but ultimately you are at the mercy of your brains neurology – thought processes, the ability or inability to process situations rationally and ultimately to function. An intrusive thought can last a split second and yet it has the ability to change your life forever. The mind can decide one day that it’s going to take something away from you and there’s nothing you can do about it.
Cognitive Behavioural Therapy and it’s practices opened my eyes – I couldn’t recommend it to anyone enough. Once Phase 2 was over it was decided I would continue with the treatment and I met my Phase 3 therapist, S, during my final session. I needn’t have been concerned about changing therapists. Do not underestimate being able to talk your worst fears over with experts who do not judge you, who can reassure you, who can provide you with research, other real world examples. There is a sense of relief to be had. I couldn’t believe I’d been doing this alone all these years, thinking it was something I just had to live with. Through the process of CBT I was also able to recognise other distressing thoughts I’d had throughout my life as being intrusive thoughts, perhaps starting as early as 15 or 16 years old.
More and more I began to learn why I might be someone who’s effected by intrusive thoughts – reasons such as my personality, my character traits; fundamentally who I am as a person, my morals, my environment. Despite what intrusive thoughts would have me believe, my life otherwise demonstrates me to be a kind, caring person. I have often gone out of my way to help others before myself. However, I am also a natural worrier, an over-thinker, a perfectionist and effected by jealousy… and this stems from being unable to sit with uncertainty. If I do not feel 100% certain – something near impossible to achieve – if there is a degree of doubt there, that doubt can continue to escalate. This is what sustains OCD. Significant life events will often effect how you develop as a person. Certainly my childhood was filled with events surrounded by uncertainty, questions, and doubt.
OCD feeds off of doubt. Throughout my therapy I would constantly ask ‘what if…’ questions and obsess over worst case scenarios. “Everything you’re telling me about myself makes sense, but ‘what if’ deep down I’ve always been this bad person I fear I am, and it’s only now presenting itself?”. “What if I’m the exception to all these other cases?”. Another example might be…”Yes but ‘what if’ I didn’t clean the door handle having taken the bins out and someone became ill… why wouldn’t I try and prevent that?”. An example like this reveals another character trait about myself and no doubt most people suffering from OCD; and that is an overdeveloped sense of responsibility. Again, for me this probably resulted from events in my life growing up.
Cognitive Behavioural Therapy has helped me dramatically with my ‘fear of contamination’ – the name given to my anxiety over disease and germs. It is now drastically reduced; and whilst I still experience intrusive thoughts surrounding it, they no longer rule my actions. I am aware that I do still wash my hands and worry about touching objects where other people wouldn’t necessarily, but it no longer prevents me living life.
I wish I could say the same for other categories of intrusive thoughts I experience… but the recovery is a long process. I am at a better stage in my life than I was a year ago.
Where I find myself today
Self-doubt has proved the hardest aspect of OCD for me to overcome; so far, unshakably so. Everything I’ve read, everything I’ve learnt, everything I’ve been told in therapy, it all makes sense to me – but being able to believe it is a very different story. In fact, I even find myself sat here doubting myself, and what I’m writing, right now. The thought that OCD might be an excuse terrifies me. Sadly the way in which the human mind works makes overcoming OCD an extremely difficult process. The mind is designed to be on high alert and look out for the things that produce anxiety in you. It’s fight or flight. You will also find that when you try not to think about something, it’s the very thing you think about – the pink elephant theory. Consequently intrusive thoughts are something I live with every single day. I’m not going to lie; it’s tiring, it’s frustrating, it’s upsetting, it’s a constant battle. But with time and practice, I hope I will be able to reach a stage where – like my fear of contamination – I do not place so much emphasis and worry upon them.
More than anything now I’d just like a shot at a happy life. The minutes, hours, brief periods of time where you do forget about your worries and slip back into your true self are such a stark contrast. Enjoying the company of those around me, or meeting a girl you really like in a bar and are unable to take your eyes off; these reminds you of the real you. But then I think to myself, ‘ok don’t let the OCD effect how I think about this situation / this person I’m with – don’t start thinking of the intrusive thoughts’… and it’s then that the intrusive thoughts begin to manifest themselves in the corners of your mind. I swear you can actually feel the additional weight and pressure of them at times. In trying to dismiss them, you think about them more and as you try not to let the thoughts get any worse, they invariably do. Once again you are on a downwards spiral and where only a seconds ago you were in a happy place, now thoughts you couldn’t want further from your mind are superimposing themselves over the positive ones, superimposing themselves over the person you wish they wouldn’t. Now when you look at them, those feelings are gone, replaced.
One of the lesson’s CBT has taught me is to remind myself that – thoughts are just that… thoughts. Everybody experiences intrusive thoughts – everybody. It’s how people with OCD wrongly interpret them that sets them apart. Just because you’ve had a thought it doesn’t mean it defines you. I know just as well as the next OCD sufferer that these things are easier said than done. If it was that easy to just let go of thoughts, doubts, excess responsibility, we wouldn’t be in this position.
But the alternative for OCD sufferers is to stop living life and that’s not an acceptable option. I don’t want my life to be consumed by fear, to live this way, for the years to tick by like this; and it’s not right that anyone else should have to.
This is what it’s like to live with OCD and this is why am I walking.
2 thoughts on “– My OCD Story”
Although I don’t live in the UK and can’t physically walk your journey with you, in a way I have. I’ve spent a decade living with the same types of OCD that you describe, and my thoughts, strength, and hope are with you on your trek and throughout your recovery. Thank you for sharing your story. Don’t give up. The day I realized I had started to gain the upper hand in my fight with OCD was one of the happiest days of my life. I believe that day will come for you, too.
All the best,
Hi OCD Walker.
I too experience the most terrifying intrusive thoughts. From time to time they’ve brought me very close to breaking point. I’m also very familiar with the sense of inner badness that goes along with this condition.
Thank you for sharing your story. I wish you every success in dealing with the challenges you describe.
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