Who tells you how you feel? You.

I don’t know where I’m going with this article as I start it, so hold on tight – it could end up anywhere.

It has been sometime since my last post, which means that the ongoing narrative about what OCD is, and the importance of it being understood (along with mental health issues as a whole) has somewhat drifted.  I feel that I should at least say something about where I have been the past four or five months, then work out where to pick up the thread.

I have been distracted from writing articles for this blog recently by taking a career-break from my job and working on a longer-form writing project (a novel, in fact.  Ooh – fancy!)  I have also been working very hard in therapy, making progress in my own personal mental health battle, and perhaps, ironically, that progress has taken some of the immediate urgency out of the blog writing – I don’t know.

During the last six weeks or so, there have been a number of things that have been gently prompting me with a reminder that I need to get a blog post done.  Among them: a grossly irresponsible documentary by BBC Panorama concerning hypothesised side-effects of SSRI medications (Selective Serotonin Reuptake Inhibitors – drugs used as part of the treatment for anxiety, depression, OCD, eating disorders and Body Dysmorphic Disorder); becoming riled and upset by a thoroughly ignorant arse berating me in the most twattish manner on social media, following my challenge of a ‘jokey’ OCD quiz on Facebook; someone else on twitter expressing their fear concerning her OCD diagnosis due to things that she had read in the media; and a post-it note attached to my laptop saying ‘Baz – You Need To Get A Blog Post Done!’

Where on earth do I start..?

Well, unfortunately, what has probably prompted me most is a motorway pile up of shitty experiences in the past month, which has seen a (temporary) halt in the writing of my novel, and a crash in both my mental and physical health.  Last month I commenced the long overdue process of trying to track down my estranged father, whom I had not seen since I was a teenager.  One of my first discoveries, four weeks ago, was that I had indeed waited too long: he died at the end of January this year, and neither I nor any of my siblings had been informed.

Understandably, this has been something of a shock; the waves of which are carrying a great many feelings stirred up from the deep and sending them crashing upon my waking shore.  These are feelings arising from complicated familial situations based in my childhood (mainly teenage) years that have had significant impact upon my emotional development, and are an integral part to one aspect of my work in therapy.  So it was of little surprise to my mental health key worker that OCD symptoms (some that I’d very much gotten past) reared up again.  These have subsequently interfered with the grieving process over my dad.  Luckily, to make it all easier, I was then admitted into London’s Royal Free Hospital for the fifth time since 2012 with an infection exacerbated by the serious autoimmune disease from which I suffer (and have referred to in an earlier article).  I’m home now, recovering.

I believe that there is a phrase for these kind of situations.  I can’t remember if it is ‘perfect storm’ or ‘taking the fucking piss.’  Either one shall do for now.

I considered making this blog post about those feelings stirred up in the wake of the news about my dad; about the unhappy situation when I was growing up and its relevance to some of my therapeutic work.  My hesitance around this is that the aim of the blog is to inform/educate about OCD and provide help for those experiencing or encountering it either personally or second hand, and I was unsure how helpful for others it would be.  I spoke to a good friend about this, just before I went into hospital a couple of weeks ago actually, as I was first sketching out this post, and she felt that it was perfectly valid to base the article on such a cathartic discharge – as it can still be helpful for people to see the importance of doing something with feelings that may be contributing to their mental health difficulties and, of course, helpful for me.

Ultimately, I have decided not to make a discussion of those particular feelings the central focus of this post (it may still come out in another post, or as part of a number of posts), but what my friend said has been influential on what I do want to say today.  Because she is right: what I am feeling and experiencing is what is relevant to my blog, not what I think I should have to be doing, saying or discussing.  And I realise that this ties up rather neatly to those earlier prompts to get a blog post done that I listed in the third main paragraph above.

Both the BBC Panorama show and the ignorant twat (who I don’t even know by the way) that berated me on social media are material enough for a blog post in themselves – one about the representation of mental health, and how important it is.  This is already a running theme throughout the articles in this blog however: I have discussed before the importance of responsible representation of mental health issues, and the harmful nature of misinformation, perpetuation of myths etc.  The Panorama programme was called – I shit you not – ‘Prescription For Murder’, and with a sensationalist disregard for facts and evidence, it presented the hypothesis that SSRI drugs may have such harmful effects upon a minority that take them, that perhaps even lead to killing, with a quality of analysis that would see me sacked from my job as a Research Analyst if I had handed it in to my boss.  The social media twat launched his attack on me after I challenged a Facebook quiz (entitled the ‘OCD Radar’) due to how harmful this misrepresentation of the illness can be.  But rather than thinking about how badly mental health issues were represented in each of these instances, I want to focus on the judgemental ownership of mental health issues that occurred in each case, and the prescriptive attitude towards the people actually experiencing mental illness.

In the Panorama case there was a great deal of irresponsibility in the implications made about how mental illness should or should not be treated.  Within the community of those affected by mental illness, the use of medication can be a touchy subject.  This is generally because (and am simplifying a bit here) on the whole, psychiatric practitioners tend to feel that what can make a greater long-term influence on recovery for anxiety, OCD, depression, are other therapies (e.g. appropriate talking therapies, CBT etc.) plus peer support, lifestyle and wellbeing choices, rather than just medication alone.  And, of course, there are side effects to the medications prescribed (SSRI’s or other types).  But before anyone panics, keep this in mind: there are side-effects to all medications.  The medications that I have to take for my physical illness have some genuinely horrible and rather serious side effects (in fact there are a couple of medications I have to take because of the side effects of others that I take!)  As a result (remember – I am simplifying) there is a phenomenon among those who suffer mental illness, sometimes known as pill-shaming, whereby using SSRIs, anti-depressants etc. is frowned upon and criticised.  So when that Panorama programme occurred, there was something of an outcry through social media among the large population for whom these medications make an essential positive difference (literally being life-saving in many cases).  Unfortunately, in turn, there was also something of a backlash against this, amongst those who have struggled with some of the side effects (not by massacring people, as Panorama carelessly implied) of SSRIs enough to not want them as part of their treatment.  They felt that the medication-defenders were criticising them.  The medication-defenders pointed out that they are often pill-shamed.  The makers of the Panorama show, not even interested in this side of the issue slunk off without a care.

The point is, whether you take medication or not is between you and your medical professional (be it GP, psychiatrist, therapist – whichever combination).  The most important person in recovering from mental illness is the person experiencing the mental illness.  You.  If a particular therapeutic combination is working for you (or indeed, if it really isn’t) then you are the person to know that, and should not be made to feel worried that you are in the wrong.  There is someone I know who during a medical where they work was told by the contracted doctor there that they it was wrong for them to have been taking anti-depressants for as long as they had!  Causing them distress and anxiety during the medical.  That particular doctor was being nothing short of unprofessional, and badly ill-informed, not being my friends own doctor or knowing their full case.

Take this parallel.  Think of how annoying it is if someone asks you who your favourite band is.  “Little Mix” you might say.  Or, “Slayer”, “Coldplay” – whoever – and their face twists in disgust or laughter.  They shake their heads.  “No,” they say, “that’s stupid, they’re childish/cheesy/crap!”  It could be your favourite film instead, or celebrity crush, I don’t know, anything.  Who are these people to tell you what your experience is!?  What you like or not?  That’s annoying right?  Now imagine someone telling you what your experience of mental illness is or should be, and what does or does not help you feel better!  That’s not annoying.  That’s insensitive, that’s distressing, that is dangerous.

Of course, there are parameters involved.  If you are being treated for anxiety by someone who tells you to sleep in a tree and eat nothing but Percy Pigs (they’re a British gelatine-based sweet for non UK readers – and you should try them), then actually, that probably isn’t going to help a great deal in the long term, even if you initially think it might.  You want informed approaches advised by qualified professionals.  But here’s a thing to consider.  There is not one approach, and there is varying evidence that qualified professionals can draw upon.  Mental illness is also a complex subject that these qualified professionals are still learning a lot about.  So within the parameters of legitimate help and treatment, there is variation, and there will be variation about what works or what combination works for one person to the next.  This is down to you, together with your doctor/psychiatrist/therapist to establish.  If CBT is working for you, and you don’t feel medication helps – great.  If CBT is not enough and there are other talking therapies that sort out the mess that feeds your anxiety/OCD/depression: good.  If you find that adding medication to the mix makes you better still, awesome.  There is no fixed rule.

So beyond the irresponsibility of the poor representation of certain issues, that Panorama show contributed to this dictating to and judgement of what people going through mental illness experience and how they can be helped – which frankly pissed me off.  The social media twat that berated me, well, yeah the argument was triggered by the poor representation of a mental health issue, and his views were most likely informed by other successive poor representations, but what really got me was the way the guy was telling me, someone that suffers OCD, what my attitude about it should be (that I should take it all a lot less seriously), and how that would help me be some kind of better person.

But the most important person that I want to reach out to in this post, is the person who posted on twitter, saying that she had been given a diagnosis of OCD, and that she was scared.  She had read about OCD online, she feared just how bad it could get, feared that she would never recover.  Oh I know that fear.  Each time there is an episode, the symptoms rear up again, that fear drives their resurgence.  This is it.  I’ve lost, I’ll never get better.

What I want to tell her, much that I am in a funk at the moment, is that it will get better.  I have seen in another (very good) blog post listing OCD myths that one of them is that sufferers can have good OCD days and bad OCD days.  Rather she says, it is always there but the key is learning to manage it.  That is her experience, and it is not wrong, and I am pleased that she has that management tool in her armoury – but from my own experience, I disagree.  It can, and does, go away.  Which one of us is right, which one is wrong?  Neither, both, whichever way you want to put it.  That’s not how it works.  Both of our experiences are real, and should be respected.  Just as there may be two people with the same physical illness, one may be treated in such a way that the condition can’t be gotten rid of but can be managed, whereas the other may recover completely.  For the twitter girl my advice is learn from the experiences of others, but remember that these are not fixed rules, so do not allow them to become fears or pressures.  Some people deal with recovery and management of OCD without feeling a pressure to get completely ‘better’, accepting that managing it well when it occurs is the aim.  Others, like me, are boosted in the fight by a therapist that insists full recovery is possible, and reading accounts that support that.  Remember, neither is right or wrong – there’s a lot of people in the world, with a lot of different experiences.

Yes OCD is scary and miserable, as I don’t need to tell her. But it is treatable, it is manageable, it does get better – whether that means being so well managed that you can carry on ok regardless, be it that it goes away for periods of time, even after it recurs, or be it that you can recover altogether.

And now this post has gotten very long, and I’m just going to stop.  It’s been more rambling than usual, but I hope that it is helpful in some way to someone out there, and yes – I hope that it is helpful to me.  I’m not feeling good right now, but I shall remember that this has been the case before, and strive for the recovery that is ever improving.

And I shall be back sooner, rather than later, as there is an important theme here which I want to pick up: Fixed Rules, and the part they play in our mental health.  I don’t just mean people diagnosed with OCD, anxiety, depression etc.  I mean in the mental health for all of us.  As I have said in the past, just as every person that has a body has physical health that can be anywhere on a good-bad spectrum at any given time, every person that has a mind has mental health, which moves and rests on an equivalent spectrum.  Understanding the part that Fixed Rules, and the other five Thought Distortions (which I shall introduce next time) is important to understanding, managing and dealing with that mental health – be you diagnosed with a mental illness or not.

Finally.  I wish I had seen my dad.


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.