Beyond the OCD Myth

There is a myth about OCD, and it is a harmful myth.  This myth forms a common public perception: cleanliness, organisation, order, symmetry, doing things in threes, having quirky rules about how you set out life.  Being the love-child of Monica in Friends and Sheldon in Big Bang Theory basically.  What about this is a myth?  And what is harmful about it?

Well, for a start if it really was all a highly sensitive concern about or distaste of germs, dirt and disorder, involved habitual, unnecessary hand-washing, then I, of anyone, should be a textbook example.  I have very good reason why such things should worry me.

Let me digress for a moment, with a short story about me.

Almost five years ago my life changed, to a certain degree, when I was admitted into London’s Royal Free Hospital with a mystery illness.  I had hepatitis, my spleen was distended, and I was – to paraphrase some of the best medical minds at one of the worlds’ top research hospitals – properly buggered.  To cut a very long story (which is still ongoing) short, I have a very rare autoimmune disease, which at first attacked my joints and liver, but given the opportunity would adopt a scorched earth policy throughout my entire body.  At this stage all I can say about my immune system is: ungrateful little bastard.

I was off work for the whole of 2012.  I take a pretty large amount of medication, most of which is, quite frankly, not very good for me.  I take two sets of medication that suppresses my immune system.  This comes with the obvious risk that I am highly susceptible to infection, and when infection occurs I cannot fight it.  As an extra exciting bonus, my liver is no longer very capable of dealing with infection when it does occur – so I’m left on a bit of a knife edge.  I have been readmitted to hospital a number of times since with infection problems.  My illness is still under investigation, as it is so complex, but what has been made clear to me is that it will not go away – and there are a number of ways in which it is likely to go south at any given moment.  Upon my most recent hospitalisation, this past summer, I enjoyed a bone marrow biopsy, and am currently under the care of three sets of consultants, two at the Royal Free, one at the Macmillan Cancer Centre, University College Hospital.

Now, I’ not looking for sympathy or awards for dealing with this (I will accept amazon vouchers – or just cold hard cash – if you really insist).  While I am pretty annoyed at some of the impact on my social life (no beer, for heaven sake!) I do deal with it pretty well.  It’s serious, but you’ve got to laugh, eh!  I tell this story though so that you know I have good rational cause to be fearful of germs.  The very serious consequences of infection are drummed into me, so I should take measures to avoid it which could very easily become excessive… and yet… I’m really not that bothered.  I don’t worry about it and have to admit sailing pretty close to the wind sometimes regarding precautionary measures.  I don’t wallow in filth or anything, I shower each day, my room is (relatively…mostly) tidy enough… but sometimes it’s a chaotic mess, and I spare it very little thought.  None of it really worries me at all.

So how can that be Baz?  You’ve got OCD man!  You’re supposed to be fussy about germs and cleanliness at the best of times…  Oh, yes, right – that’s the myth!  So where does this myth come from then?

Well, for some people OCD commonly can express as an irrational fear of infection, or an extreme discomfort about certain physical features of their environment.  This overwhelming upset is in response to an invasive, obsessive, thought, trapped in the sufferers mind.  The resultant washing or carrying out of specific behaviours to alleviate this fear or discomfort, and remove the obsessive thought, is a compulsive behavioural response.  Such responses become excessive, as they never can alleviate the fear or discomfort, and actually reinforce it (more about this another time), so have to be done more and more.  And to take washing as an example there is nothing ‘fussy’ about this behaviour.  There is a very real need, a seemingly irresistible urge.  Think of that word: compulsion.  You are compelled, you have to do it.  I recently met someone who prior to hospitalisation was trapped in her shower for 9 hours a day, and suffered a great deal of damage to her skin.  OCD victims becoming housebound prisoners, using bleach on their bodies… these really happen.

But my OCD involves nothing to do with germs, washing etc.  The illness expresses in many, many different forms – impossible to list here.   The invasive, intrusive thoughts can be anything, and the compulsive responses demanded as protective measures, can be anything – either external behaviours, or internal patterns of thought.

A number of things make the myth harmful.  If people believe only the myth, then they are misunderstanding and underestimating a serious mental illness that this year was added to the list of ten most debilitating illnesses by the World Health Organisation.  It is demeaning to, and dismissive of, the anguish and despair that those suffering the illness experience.  Would it be acceptable to be so dismissive and demeaning towards the symptoms of cancer?  No.  Given the seriousness of my physical health condition (while I’ve been flippant about it and am doing ok at the moment, the consultants make very clear how serious it is), I feel that I am qualified in making the comparison.  No matter how serious it is, I feel far more affected by my mental health situation.  If I could be free of one of the two, there’s no hesitation: I would get clear of OCD and take my chances with the physical disease.  Being dismissive about it makes sufferers ashamed and not seek help.  It also means that for all those suffering OCD which in no way resembles or has reference to cleanliness/washing etc., they either don’t know what is wrong with them, or people they turn to for help do not know what is wrong, and they suffer on without help.

Great, now we know what OCD isn’t, what it doesn’t involve.  So, if that is the OCD myth, what is the OCD fact?  What is it all about?  How does it work, and what makes is so bad? Even if I can’t list all the possible ways it expresses, I can at least tell you what has happened to me, right?  First hand insight?  Ah, yes… I’d rather worried it was going to have to come to that.  I guess I has better make a start on relating some of my experiences, next time.

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