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.


Team Baz – The mates in my corner

This past Saturday, 13th June 2017, I took part in an annual event run by the mental health charity CLASP, called Walking Out of Darkness.  This was a 10-mile walk (further than I thought, my legs would like to add) in London, along the Thames, starting and ending in Battersea Park.  This is the fourth year that CLASP (Counselling Life Advice Suicide Prevention) have run the event, and this time they also held one at the start of Mental Health Awareness week in Birmingham, before the London one closed the week, and have a third, summer event, in Weston Super-Mare on Saturday 24th June.

It was a great day all round, with a hugely supportive atmosphere, inspirational speakers and real belief in the CLASP slogan ‘you are not alone’ being true.  The importance of this motto for anyone experiencing mental illness or mental health difficulties cannot be understated.  One of the greatest facilitators of mental illness is the feeling of isolation, and the belief that you genuinely are and always shall be, alone.  I did not feel so on Saturday.  As well as about 800 others, who genuinely felt like the most positive community to be a member of in the world, 12 friends from work and beyond came on the walk with me.  Now, they all had their own motivations of course, but I felt their presence personally as being much welcomed friendship and support.

It is about the value of such support from friends that I want to talk today, and specifically with reference to the ‘In Your Corner’ campaign currently being run by Time to Change.  Time to Change are an organisation that focus on challenging mental health discrimination and stigma, jointly run by the charities Rethink Mental Illness and Mind.  The focus of the campaign is about the mates in your corner, the ones who prove the CLASP motto of you not being alone, the friends who are there for you, who help you survive, help you win, the fight against the isolating monster of mental illness.  I am lucky enough to have such mates in my corner.

There’s so many I could talk about.  Today I shall mention three of them.

When I first opened up about my – I don’t know, let’s call it ‘remission’, my collapse back into the worst sustained period of OCD I’ve had – a couple of years ago, it was at work.  I was in an appalling mess, and I’m still amazed that I was managing to get to work at all.  Or to get out of bed, to stay alive for that matter.  My project manager and line manager were amazing: I’m lucky to work somewhere that has a very understanding and supportive management, and in a team that are very much like a ‘work family’.  One of this family, Zoe, had picked up very fast, despite my efforts to appear otherwise, on the fact that I was certainly not myself.  Usually in these blogs I give people a comical change of name (I considered DJ Z-Box for Zoe), but I think today those that I mention deserve the credit of their names.  In a state whereby I was falling apart at any prodding at all, I opened up to Zoe completely.  And what a relief it felt after all these years of keeping such episodes, the nature of them, closely concealed from others.  It was, it is, almost impossible to explain what I was experiencing.  After all , how many chapters of this blog are we into?, and I still don’t think that I’ve succeeded in relating it.  But Zoe allowed me that ambiguity without any insistence to fully understand it, with no insistence that we had to sit down and sort this out there and then.  She did understand of course – she understood what this was doing to me and that it was real, and that is all she needed to understand.  She understood that it wasn’t something she could just give an answer to, or tell me not to worry about and it would be solved, she didn’t gloss over it.  But she did also make clear that I could, I would get better, with the right time and support, and that I was not alone, no matter how I felt.  She made it clear that I was still Baz, and she was still my friend.  Zoe talked to me about getting help, and within a day we’d found the private organisation which I am still attending for CBT and gotten my first appointment for the next day.

There are so many instances of essential moments that she was there for me, but the one that really stays with me occurred about four months later.  As I say, this has been the most severe episode of OCD that I have endured in my life, and after some initial progress, I took a big downward turn.  A particularly bleak weekend and calls to the Samaritans had led to medical intervention by the local psychiatric crisis team.  Monday came around and I was to go off to be assessed at the psychiatric hospital in Burnt Oak, Edgware.  I did actually go to work first thing, I just couldn’t bare being on my own, and despite being about to go and get further help, I was scared.  I was in as low and dark a place I ever have been, so it was difficult to find optimism, but also the very prospect of those bleak, grey, psychiatric hospital grounds and the difficult conversation I was about to have was scaring me.  This may come as a surprise to anyone who has known me a long time, as only my late mum was aware of this, but I spent a very brief visit to such a facility a few months after I graduated from university.  It was voluntary, they were there to help and it was a long way wide of the horrors depicted in One Flew Over the Cuckoo’s Nest, but it was a miserable stay which I never want to experience again.  In that instance I discharged myself very soon because I simply couldn’t deal with it, and fortunately as an out-patient was doing much better within a few months.  I did not know what was going to happen this time.  But as I was putting my coat on, Zoe came to my desk and simply suggested how about she come with me.  I’ve attended a lot of hospital visits in the past five years with my complex physical health, including for some quite worrying procedures, which I’ve managed fine by myself.  There was no hesitation in my tremulous, grateful nod to her offer on this occasion.

It was both a simple and powerful thing that she offered.  Just to be there.  To talk to me on the train about whatever she would normally talk to me about, even though I was not much capable of contributing; to wait during the assessment; to hug me after as I cried; to take me for a milkshake (my first ever milkshake – can you believe that!).  Powerful because she was showing me that I was not alone.  Simple, because what was she doing?  She was being my friend, as always.

And all of my friends have stayed this way, through all of this.  No impatience that I be better by now, no demands that I explain to them what exactly is going on.  They just stay my friends.  They are ready to spot when a reply of ‘ok’ to the routine enquiry of ‘morning, how are you?’ is delivered without conviction, and to offer their presence and kindness.  So reassured am I by their support, that I can now seek help when I need it.  I have sent messages to my friend Beth at weekends, evenings, days when we’ve not both been in the same office, because I know she wants me not to try going alone when I am struggling.   She has been on the phone so quickly after, or arranged lunch the next day so we can work through the struggle.  She takes me through what I have been doing and learning in therapy – I tell her all about it – and she helps me work through it again, refresh and reinforce it.  She doesn’t come in to try and fix the problem, she comes in to remind me of what I already know, to help me fix it myself, and realise how far that I have come.  Similarly my friend Melissa lets me explain to her the principles of what I do in therapy, and in so doing reinforce it for myself.  When I am getting in a mess, I know I can speak to her at any time, and she explains it back to me, clarifying it and making clear how much she cares about me and much better she can see that I am doing – that the bad period I am having is a temporary lapse.  Then, like Beth, like Zoe, she will take the piss out of me and draw the real Baz out.

I could go on with example after example, but here is the core of what Zoe, Beth, Melissa, every single one of my friends at work, those who came to Walking Out of Darkness, my mates who regularly go out for burger with me, my friends at the other end of the country who are always there to talk – team Baz, the mates in my corner – are doing for me.  They are treating me as me.    They are accepting the illness I have as an illness, and seeing the real me.  Keeping the real Baz alive.  Because when I am unwell, it feels like I am not: I’m not there and never will be again.  But they help me know that I – the real Baz – am still alive, still there, which means that this shit is not me, and that I shall win.  Therapy is only part of what is getting me better: the mates in my corner are swinging the fight my way.  Last Saturday, in that crowd, at Walking Out of Darkness, that’s what I could see all around me.  People who were not their illness, not their problems, and the friends who were helping  to keep them that way.  It’s something we can all do for each other, whatever the circumstances.  Turn to your friends if you are struggling.  Look out for your friends if you think they are struggling.

Cheers, and my heartfelt thanks to team Baz all over the UK!

If you would like to learn more about the work of CLASP please see www.claspcharity.com, @claspcharity on twitter, CLASP Counselling Life Advice Suicide Prevention community on Facebook.  For more about Time for Change, their In Your Corner campaign (#inyourcorner) and their other work please see www.time-to-change.org.uk , @TimetoChange on twitter, Time to Change on Facebook.