When I watch The Aviator, and see the misery even a rich OCD sufferer went through in the absence of a diagnosis, I wonder how all the others in my OCD family tree coped. Young men in infantry squares at Waterloo or the trenches of World War 1, on all sides. When they froze up in the throes of a trigger, were they shot for cowardice? Perhaps some of the women accused of being witches and drowned on “ducking stools” had OCD.
Then there’s all the people who were disappeared off to the local “idiot colony” because they were touched. Game over man. Game over.
It’s a brutal corrupt imperfect world run by lying jackasses for the benefit of a few at the expense of the rest. Yet occasionally good things can happen too – by accident or as the result of good intention, hard work and ingenuity. And all I know is I’d rather be someone with OCD in 2016 than in 1916.
And you just know there’s a big old “but” coming at the end of all this justification doncha! Well far be it from me to disappoint! …
… there’s still some ways to go with this thing and I sometimes wonder if the established dogma on OCD is missing a trick.
On my travels through books, online literature and forums(fora?) I often felt like they were begging the question. Building a whole folklore of what OCD is and how to cure it without really understanding the root of it, but instead having some trite catchall discussion-ending answer to pull out of the bag whenever the subject came up.
I found that certain assumptions were often made like:
- every brain is the same
- OCD is the same for everyone
- anyone can catch it at any time and it’s not genetic(they say this is up for debate but my experience is that the big players all rally behind the former belief)
- it is always 100% fixable with a bit of therapy and some pills
Well my experience of it disagrees with all of those things. Sure I’m just one guy, I’ve not carried out anything resembling emiprical testing to reach these conclusions, and this is based upon my own accrued experience and knowledge, and my visceral interpretation thereof. So I could be wrong. Always. Yet I am still me and I have a dog in this fight so I’m going to voice my opinion.
First off, my best guess is either that I was born with OCD or that it was caused by head trauma fairly early on in life. It’s definitely been there since I was 12 but I wonder if it was there anyway, lying dormant, just waiting for some fuel; and secondary school was like pouring kerosene over it.
A lifetime of comparing inputs and outputs between me and a lot of other people has thrown a lot of tins of paint over differences between how I process things and how they do. I knew early on something was very wrong. I remember walking on my own in fields, getting home from school in tears. No particular reason – just something was different about me in a way that was screwing everything up despite my best efforts. Taking me out of a game I badly needed to be in, making me fail and be ostracised. And I railed so hard against it all for so very long. I was determined not to be that guy. I didn’t feel like any of those things. Even at that age I knew that was not a good road to go down. I just wanted to be one of the guys, successful academically and in a career. I figured if I just applied enough effort and discipline it would all come together in the end.
There was something else going on that simply would not be petitioned. God knows I tried, beyond my age and means I think. And it was getting worse. Getting snagged on fears, difficult situations, and then trying to face that fear by rationalising it through, then taking it on again. And I was good at that too. I considered myself a very creative proactive positive person, constantly spinning lemonade out of lemons and making the best of a bad lot. I had high hopes I could get on top of this and make it in life.
But the strangest thing … even after I’d gone through that process, addressing the problem and moving on, it would all magically reset again remarkably quickly, like losing at Snakes n’ Ladders. I’d find myself pinned down under heavy fire again much too soon. All I could do was go back to the beginning and start building my house of cards again from scratch. But after you do it enough times, you already know what’s coming next. That’s when it starts to get really interesting. And by interesting I mean horrific.
25 to 30 years fighting, struggling, adamantly defying this thing that was dragging me down. Trying to find new imaginative ways of putting it down, coming at it another way, reining it in somehow. So many epic final struggles, so much hope poured out onto the ground. But by God it would not be put down. I always wound up exactly back at the start of the board. A very cruel situation for a kid to be in.
Just observing other people’s relatively relaxed modest inputs yielding much better outputs all around me made me realise that something was very wrong here.
All I could do was keep trying to move forward. It got very messy. Cracks started to appear.
I finally ended up in a GP’s office reeling off a very thorough list of my symptoms and asking for help. I was too green back then to realise that these jokers don’t know always what the Hell they’re doing when it comes to mental health and are on the payroll of pharmaceutical companies.
A couple of perfunctory questions later and I was given an instant diagnosis of clinical depression. Like a bad Santa handing out cheap inappropriate presents in the department store grotto. The poor kid thinks it’s really him! Then they’re left confused on the way home when they open up some crappy impossible puzzle they never asked for.
I was immediately put on anti-depressants that didn’t make a dent in this thing but of course had some strange and unpleasant side effects.
I kept going back and explaining that it wasn’t working and he’d just switch the pill or up the dosage. I eventually asked if I could see someone qualified in dealing with mental illness. I saw a psychologist and listed the same symptoms. Unbelievably he just backed up the GPs lazy diagnosis. The night-time pill safari cotinued.
Perhaps they’d not heard about Pure O OCD back then. Perhaps it wasn’t their fault. I don’t know. Whatever – I found my experience with them unhelpful, misleading and extremely frustrating. I finally realised this approach was not helping and I was worried the effect the pills were having so abandoned it, intent on redoubling my efforts and beating this thing with the power of my mind alone.
The illness got increasingly worse over the next decade or so, catalysed by some rather unfortunate work/life circumstances. But with OCD, there will always be something that comes along to fuel it regardless. Of that I’m sure. I just got fast-tracked is all.
And the rest is history.
I eventually lost everything and only then stumbled on a name for what I’d been experiencing all my life. A very weird revelation at 41 years old I can tell you. Half of you is thrilled, the other half feels like “yeah, so what, too little too late”. But you grab it with both hands anyway cos, yknow, you’re not dead yet!
I went through the therapy revolving doors, putting my life on hold to try and get better. I put a lot into that and I’m proud of the gains I made. But the way they sell it is duplicitous and unhelpful. It is not a cure. It’s just some party tricks to clear the cobwebs out of the cupboard is all. Meanwhile the spiders retreat to the darkest corners and patiently wait for the all clear.
And now here I am, fairly sure that I’ve got this thing for keeps. It’s just in me, always was, always will be. I’m grateful for the therapy and I do try to employ some of the tricks to mitigate the problem. Good days, bad days.
Like I say I’m grateful I’m saying this in 2016 and not 1916, but still, I cannot just sit back and nod along with ideas about my illness that I don’t agree with.
In particular, I think they’re missing a trick vis-a-vis the root causes.
Experience tells me that I have always had some kind of fundamental brain defect when it comes to short-term memory and that kind of built-in binary knowledge we have that a thing is true or false, on or off, done or not. It feels like my brain has a loose connection sometimes regarding those things. Like a speedometer with a loose wire – sometimes it’s working, but a lot of the time it’s not. Sometimes a good thump on the dashboard does the trick. Often not though. Sometimes I damage the car trying.
Back when it started, in those formative moments of doubt, the speedo wasn’t working. The required information wasn’t there when I needed it to be. And it was terrifying.
When the speedo isn’t working, I temporarily lose all certainty on things like:
- what that 3-digit number I literally just memorised is
- what the plan I literally just made for today is
- whether I just switched the oven off
- whether I just locked my car
- whether I just washed that plate
- whether I just washed the top half of my body
- whether I just mowed that area of grass
- whether work has finished and I’m on holiday or not
- whether I just thought something nice about my mum
- whether I just prayed to God
- what my sexual orientation is
- whether I really hate that vile woman at work
- whether I just did something wrong or whether that other guy did
Now some of that stuff you learn over time to just let go, or die trying anyway. You can usually though because it doesn’t really matter, life goes on, bigger fish to fry. Some of it however, you absolutely cannot let go. It’s too fundamental to who you are, what you stand for, what your basic intention in life is. To be left doubting those things throws you into a nasty old state of deep probing mental turmoil. Everything seems whacked out of kilter. You cannot just let it go and carry on.
So whether you damn well like it or not, you are forced to put whatever you were doing on hold and revisit it, and try to fill in the gaps of the missing certainty. And that can take a few attempts before the old speedo kicks in again and you nail it. You deal with it, wipe the slate clean, breathe a sigh fo relief and try to carry on with your day. Hopefully that’s the last of that weirdness and you can live a normal life now. But sadly it is not, it’s just getting warmed up.
It comes back again, as if you didn’t even have that internal dialogue re-establishing what was true and what was not. This is a very disturbing feeling. You wonder why it didn’t stick the first time, because you were so very thorough in your thought process and you applied so very much effort and intention. No i’s were left undotted, no t’s uncrossed. So why would it do that. It’s cruel. But it does do that, so you do the only thing you can do. You go back and repeat so you can shake that horrible feeling and carry on with your day.
This is where the trouble starts. Unbeknownst to you, you are now spiralling down a negative feedback loop helter-skelter at high-speed. Before you know it, the innocuous doubts above have, despite your best efforts, evolved through a series of thousands of iterations into things like:
- ha ha – you moron – you’ve forgotten the number and you’re going to keep forgetting it now and lose your job because even a child could remember that
- nope – you didn’t make a plan for your day and you haven’t got a plan for your day because you’re a loser, so why not just give up
- you definitely didn’t switch the oven off and unless you check it until you’re 100% sure then it means you secretly want your family to die in a house fire because you’re evil
- you definitely didn’t lock the car and it’s going to get stolen and it will be your fault in the eyes of the insurance company and in the state you’re in, you won’t even be able to replace it and you’ll lose your job and you’ll rot in the gutter
- you didn’t wash that plate and if you don’t wash it again thoroughly, someone’s going to use it and catch a disease and it will be your fault, and that’s what you secretly want anyway
- you didn’t wash the top half of your body and you’ll get a flesh-eating virus that will take you arms and legs off and leave you horribly disfigured and you deserve it anyway because you’re a disgusting tramp who doesn’t wash properly
- you didn’t mow that grass and if you don’t mow it thoroughly now, it means you don’t even think your family are worth it, which is true because you secretly hate them all and want them dead
- you’ll never feel like work has finished and you’ll never feel like you’re on holiday so your holiday is ruined now but that’s all you deserve because you’re an evil loser
- no you didn’t think something nice about your mum, you thought something sexually disgusting about your mum because you are an intrinsically evil person who gets off on that kind of thing – go on, stop putting so much effort into hiding it and just embrace who you really are!
- no you didn’t just pray to God, you prayed to Satan wishing bad things upon your family and thinking disgusting sexual things about Jesus and it will all come true now thanks to you – you’re going to burn in Hell forever now unless you fix this
- no you’re not into women really. That’s just a cover, you’re into men, and family members, and children(which means you’re the worst kind of evil there is), and animals, and dead people. That’s your thing. Go on – embrace it all and stop lying to yourself!
- no you say you hate that woman because in fact you really fancy her and love what she’s like and want sex with her. In fact you wish she was your girlfriend and you were married to her and had kids with her. That’s your secret dream. And what kind of a person does that even make you?
- no he definitely wasn’t in the wrong there, you were. He’s in the right and you’re a conniving shithead for trying to argue otherwise. You’ll lose anyway – I’ll make that happen. So just run away like the pathetic pussy you really are. In fact why don’t you just side with him against you and the people you love. Yknow because you’re shit and evil.
Taking a moment to quickly rationalise through the problem no longer seems to cut it somehow.
Now it really feels like who you are is at stake. Like you are in a knife fight with the Devil for your soul.
The doubts come on much more frequently and with much worse ferocity. It is not only the original things that trigger the doubts but a whole plethora of tangential associations that have sprung forth like apples from an apple seed. Some of the associations don’t even make sense, they seem unnecessary and ridiculous. But it doesn’t matter, you still have to neutralise them just as if they are the original thing. Words in songs or books, objects, actions, people who look like people, names, things that sound like things, things that sound like things that are related to the original thing by 2 vague associations.
You start to become paranoid that evil powers are conspiring against you, planting triggers throughout your days. Your sleep starts to become more and more affected and the chances are you will turn to some kind of vice as a crutch – just alcohol and smoking if you’re lucky. Physical symptoms start to complement your mental symptoms.
When it’s bad, which it often is now, you have to extricate yourself from whatever you’re doing ASAP and go and find somewhere private without any sensory interruptions or people watching. Because any interruption derails the process and you have to start again, and it gets harder and harder to neutralise the doubt then, and there’s a very real risk you are going to be saddled with it for hours. Not really an option if you’re at work or driving a car or in a social situation. You have to vocalise your mantras instead of thinking them but you try to do it under your breath because you know anyone listening will think you’re bonkers otherwise. Sometimes you have to do bodily gestures – head jolts, hand gestures, blinking, twitching, grunting – to reinforce the key points in the mantra that need hammering home. To make it stick. This is where Tourette’s overlaps heavily with OCD. At times in my life you would’ve guessed I had Tourette’s, not OCD based on my outward behaviour.
You are now a mental martial artist playing catchup with an arcane skill set that you don’t want to learn but nevertheless have to become expert at very quickly, just to survive, just to tread water, just to get average grades or hold on to your job by the skin of your teeth.
There’s now a whole menagerie of doubts and accompanying mantras to service. But you’ve overused the mantras and they have a habit of becoming more and more complex and tangential, so you have to evolve those constantly too, performing demonic topiary on the fly, so that they are still effective. Otherwise you can be stuck trying to hammer nails into stone with a sponge hammer for a long time and make yourself ill in no time.
Your life has atrophied to a frail husk of what it ought to be. All available real-estate is consumed piecemeal by the ravenous OCD black hole. You refuse whatever social activities you can get away with refusing. Time on your own becomes a reluctant commodity. Like methylated spirits for an alcoholic tramp. You absolutely need it so satiate your excruciating thirst but it’s a damaging and degrading experience nonetheless.
The rest needless to say aint pretty so I’ll leave it there.
All of that because of some kind of brain defect regarding short-term memory and binary knowledge. It feels so … solvable.
We live in a time when it’s cool to have a quirk or eccentricity. When I hear things like this actor or that sportsman has OCD, or OCD is the same for everyone, or OCD is easily curable, I die a little inside. It’s not their fault. They just don’t know what they’re talking about is all. They’ve had popular ideas repeatedly dangled in front of them and they’ve latched onto them …
Hmmm well I’m a determined person who likes everything just so. HEY! I’ve got OCD!
No my friend, you’re just a determined person who likes things just so I’m afraid. (and that’s a good thing)
I only wish I could let them live a day as me when this thing was at its height. I guarantee you they would not be walking around saying they had OCD like I do after that. And that is not me acting all precious about it. I’d happily switch this vile insidious life-ruining demonic shite off if such a switch was available. I’d happily let David Beckham have this instead of me if that’s what he really wanted. In a heartbeat. I’d happily never use the term OCD again as long as I lived and embrace sweet normality.
But I can’t do any of that. I’m saddled with it. So when people make spurious claims about the gigantic swirling black hole that’s dominated my life, I’m afraid I’m going to be compelled(no pun intended) to say something about it. Cos they’re not only wrong, but they’re ham-fistedly redefining something in the public arena that isn’t theirs to redefine. With one glib statement, they’re steamrolling over the work a lot of everyday little people have done to try and spread awareness about what OCD is and isn’t. It’s really not their fault, but still, they’re acting irresponsibly. Moreover, they’re muddying the playing field for anyone with severe OCD who has to engage with welfare services …
Ah yes that delightful quirk that’s curable with just 5 sessions of talking therapy and some pills? Well it doesn’t seem to have done David Beckham much harm does it! So what’s your excuse then? Hmmm?
And maybe there are different kinds of OCD, as yet to be distinguished and understood. Maybe some are more treatable than others, maybe there are different causes. Maybe there’s a kind you can “catch” and shrug off again, and a kind that’s in you from birth to death. All I know is the kind I’ve been suffering from all my life cannot be cast off like an old coat you don’t feel like wearing any more. It cannot be switched off with chemicals. It cannot be petitioned with a few well-chosen words. I’ve tried. Hard.
So instead of false dichotomies about therapy and pills, and imposters proliferating falsehoods, I’d like to see a wider discussion within the OCD community. About the possibility that this thing I have might have its roots in brain damage related to short-term memory and whatever it is in the brain that controls that binary knowledge I was talking about. About whether that damage might be mitigated somehow.
Because the times I tried to discuss that on OCD forums, I got closed down pretty damn quickly. There’s this tacit expectation in such places that you buy into their belief system and you’re going to read from their hymn sheet or else. And it’s unpleasant to be on the receiving end of but I kind of get why that is. Otherwise anything goes and you’d end up with some right old loons and snake oil salesmen touting apparent cures. I’ve seen it. So that’s probably not their fault either. But where else are people with OCD going to openly discuss what their disorder is and ways of dealing with it, if not on an OCD forum?
I just feel like we are missing a trick somewhere, like we’re playing around with cold cuts and no-one wants to talk about the meat and potatoes. But surely that’s the way forward?