Fear can hold you prisoner; hope can set you free. – Stephen King, The Shawshank Redemption.
Since being diagnosed with OCD, I have learned a lot about the condition. I have suffered from OCD my whole life, but I was only officially diagnosed nine years ago, aged 37.
I was pretty sure for a long time before that I was an OCD sufferer, but self stigma and shame had prevented me from seeking help. Even before knowing it was called OCD, I had known from a very young age (two years old) that I was somehow “different”. Damaged goods, impregnated with an evil that I had to keep secret. I had badness in me that was trying to leech out. If anyone found out, I would be locked up. My mother reinforced these cast iron beliefs almost every day, when she beat me and I bled or bruised. “That’s the badness coming out of you. When they find out, they’re going to lock you up in The Home”.
So it took 37 years for me to summon the courage to seek help. By then, it was simply a case of either die by suicide or risk being sectioned and locked up to protect the World from me. I had feigned an outwardly normal life until then. In many respects I was “normal” and successful. But the whole time, I carried this burden of latent evil around with me. I knew I was essentially a good person, but my mind told me I was capable of doing bad things and of not doing good things properly, which would result in evil, catastrophic consequences, which would be my fault.
I first began to suspect that my “differentness” was partially something called OCD in my mid teens, when I watched two documentaries about people with OCD, one about people living with it day to day, the other about inpatient treatment of severe, treatment resistant OCD. That was a frightening realisation. I was an undiscovered mental patient, like the mental patients on TV. Mental patients were dangerous and needed to be locked up. Everybody knew that. I needed to work harder on seeming normal, in case I was discovered and locked up too.
With the benefit of hindsight, I remember that the documentaries both concentrated on the compulsions of the sufferers they featured. I recognised similarities to my own compulsions. Up to that point, my primary compulsions were checking compulsions. I don’t recall much mention in the documentaries of the mechanisms of OCD or the intrusive thoughts which fuelled the OCD cycle. So for me at that time, OCD equated to Obsessively Checking things Disorder.
I didn’t realise then that the physical tics I had, the hair pulling, the skin picking, the ripping off of my fingernails and toenails, which had all happened throughout childhood, were also all indicative of OCD and the anxiety it created.
So I quietly knew for about 22 years that at least part of my “differentness” was OCD, yet didn’t seek help. Stupid, eh? So many wasted years. Utterly daft. Yet that whole time it seemed perfectly rational. The OCD parasite is cunning. It convinces its host that it is both friend and protector. That the host will be vulnerable, weaker without its presence. So it seemed logical to allow the OCD to remain in control of me. I needed it there to keep me safe, to keep others safe. I couldn’t live with myself if harm came to anyone if I abdicated my burden of responsibility. And so the OCD parasite continued to feed off my anxiety, propagating it with horrific mental images, fear, guilt and paranoia.
So eventually, in terminal desperation, I went to my family doctor aged 37 to get help for OCD. In order to realise that we need help and then to seek help, many OCD sufferers necessarily self diagnose. Some people go to their doctor knowing just that something is mentally wrong. Some have an inkling that it might be OCD. I was more organised and thorough. In my typical manner, to confirm my self diagnosis, I had looked up OCD on Wikipedia, as well as looking at the OCD-UK, OCD Action and IOCDF websites. My education had begun in earnest. I listed my “OCD things”, three printed pages of a bullet-point list and showed them to the doctor. He agreed with the self diagnosis. He put me onto medication to help control my anxiety.
Looking back at that list, there were also a few things like “straightening picture frames” that I now know are misconceptions about OCD. Crooked picture frames annoyed me; I never thought anyone would come to serious harm if I didn’t straighten the picture frames. But I can forgive myself now for the commonly held misconceptions. It was early in my education about OCD. That’s what many think OCD is – being mildly annoyed at crooked picture frames. So very far from the horrible truth.
Perhaps I should be more forgiving of other people’s misconceptions of OCD. They mostly only have media misrepresentations, online memes and jokes to go on. The fact that we OCD sufferers conceal our suffering so well has also helped to perpetuate misconceptions and misunderstanding of the actual condition. I have beaten myself up mentally for concealing my OCD and perpetuating the myths. I’m learning to cut myself and others some slack about that now. We were and are hostages to the parasite in our minds. You don’t shout for help when there’s a gun muzzle pressed to your forehead.
So I was diagnosed. What changed? Initially, not a lot. The huge burden of self responsibility lifted slightly from my shoulders. The medication reduced my anxiety slightly, but also made me gain weight and feel drowsy. I didn’t magically get well. I bounced along the bottom of the abyss for several more years.
But then I began to read more about OCD. I began to interact on an online OCD-UK forum. I read a lot about other people’s experiences of OCD. So much of it was like reading someone else’s description of me, but interestingly, a fair chunk of what I read surprised me. I have a bad habit of assuming that my experience of a thing is absolutely typical and indicative of that thing. I’m not good at golf. Therefore I don’t enjoy playing golf. How can anybody enjoy this stupid pastime that I loathe? Only an idiot could enjoy golf. You see? Just like that.
I had assumed that everybody’s OCD would be exactly like mine: Always present, at maximum volume, every waking second of every single day. Primarily focussed (in adulthood) on contamination, with consistent minor themes such as checking. I was wrong. I discovered that whilst there is a core mechanism to OCD, there can be big personal variations.
I discovered that some people’s OCD can be less severe. I envied them. I discovered that a few people’s OCD was more severe. I pitied their suffering. I learned that some people’s OCD could fluctuate in severity, depending on the time of day, week or year. This was a revelation!
I also started to learn about the different main themes of obsessional focus: contamination, checking, fear of harming others – accidentally or deliberately, fear of sexually harming others, sexual identity fears, magical thinking, fear of harm from others, religious obsessions, moral obsessions, relationship obsessions, rumination or hoarding. I recognised that I had experienced more of the themes than I had realised and was surprised that I hadn’t encountered others. Given that I was sexually abused for the first 11 years of my life, I’m still amazed that OCD has never latched onto suggesting the possibility of the phenomenon of abused becoming abuser. I simply know unequivocally that I would never repeat the actions of my mother on anyone and the OCD has never tried to suggest otherwise. A good example of the random, unpredictable nature of what OCD does or doesn’t torment its host with.
Sometimes, when I read or hear of someone else’s experiences of OCD, I consider myself lucky not to have experienced their variation of the torment. Oddly, several of those people have said the same thing in reverse when I have described some of my experiences. We are typically empathetic people. Other people’s suffering seems worse than our own. We are also stoical and determined. We quietly endure years of suffering alone – typically 12 years from onset to diagnosis. It’s hideous mental torture, yet we consider ourselves lucky in comparison when we hear of the horrors in other people’s minds. We are all victims of the same torturer – OCD, which uses the same torture techniques on us. It merely varies the subject matter of what it tortures us with.
It is good to have now heard and read the experiences of so many other OCD sufferers. It makes me realise that we have a common enemy, which behaves in consistent, predictable ways. That enemy is weak. We are strong. That is why it parasitises us, because it can feed off and drain our strength, but as soon as we learn to control the anxiety triggered by the intrusive thoughts it latches onto, we begin to deprive it of its source of nourishment.
The thing which had the biggest positive impact for me was attending an OCD sufferers’ support group. I had spent the years since formal diagnosis continuing to endure the OCD parasite, but in a medicated state. I had previously improved my knowledge of OCD, but I hadn’t done anything else, other than attend a one-to-one talking therapy course, which was only briefly beneficial. The support group increased my knowledge of OCD exponentially. It made me challenge my self stigma and see that my shame as a sufferer was unwarranted. It made me start to feel better about myself as a person.
The most practical things to come from starting to attend the support group were learning about the benefits of CBT (Cognitive Behavioural Therapy) in overcoming OCD and gathering the courage and motivation to ask my family doctor to refer me for CBT treatment.
Other OCD sufferers gave me support at one of the lowest ebbs of my life and indirectly helped to save me from death by suicide. OCD sufferers are more empathetic and supportive than the general population. It’s in our nature. It’s one reason why we fall prey to OCD. It makes us doubt the innate good in ourselves and feeds off the resultant anxiety. I have been very glad of the support of other sufferers and it is a privilege to return that support in kind.
Coming out as an OCD sufferer is difficult, frightening, daunting. It is a big thing to do. But it is liberating. For me it was like being reborn and learning to be a proper human being for the first time. I’m still learning: about OCD, about what “normal” is, about self care, about how to be free and untortured. But it’s good. It’s a new adventure. It’s good to feel the rain on my face.
If you believe that you might be suffering from OCD, these blog posts can help you to seek support and treatment:
You are not alone. You are not a freak. You are not a bad person. You can recover. You too can break free.