Twitter @AshleyFulwood ashley@ocduk.org

What’s in a name?

Two weeks ago I posted a tweet born out of frustration, it was posted shortly after another call from an OCD-UK service-user who had been offered/told they must have a course of EDMR to treat their OCD (in fact as I wrote this today I had yet another call saying the same thing).  EMDR is more commonly used to treat PTSD, although I am not sure if even that is based on evidence, but what I do know is right now there is very little supporting evidence to promote the use of EMDR to treat OCD, and the fact people keep calling to say it didn’t help them suggests the lack of evidence is for a reason.  So faced with the frustration of yet another desperate OCD sufferer having to in all likelihood waste their time and therapy energy on a pointless exercise I made the following frustrated tweet.

 

What started off as a topic about the inappropriate use of EMDR to treat OCD quickly deteriorated into a wider debate, in fact the tweet didn’t generate any long discussion about EDMR at all, so this blog is not actually about the use of EDMR.   In the end the tweet went totally off-topic, mainly about the use of diagnosing and ‘labels’ after one clinical psychologist made a series of (in my opinion) outrageous claims. For example, claims like the fact that most clinical psychologists don’t believe in the flawed diagnostic system or the medical word ‘treat’.  He then went on to say he doesn’t use the flawed diagnostic system, which when I pushed he seemed to suggest that he would not diagnose someone to be suffering with OCD, only ‘obsessions and compulsion problems’ and that that our difficulties aren’t ‘disorders’.   He also went on to people can be too rigid about ‘evidence’ referencing the EMDR/CBT point.   Well of course, you know me, I didn’t hold back in my forthright responses.

For the benefit of doubt, I believe the definition of the word ‘disorder’ is:

A disorder is a set of problems which result in causing difficulty, distress and suffering in a person’s daily life. Disorders are physical or mental conditions that disturb the regular or normal functions of everyday activities and day to day life.

Well OCD causes us difficulty, distress and suffering and disturbs our daily functioning, so I don’t know about you but that certainly sounds like OC ‘Disorder’ to me!

Now I could try and be professional and debunk all of those outrageous claims, but my views are fairly well known on those matters, and I debated it all out on Twitter anyway, but for those reading that with the same level of aghast at the good Dr’s claims, fret not, I don’t believe these to be widely held views by clinical psychologists.

Whilst I exchanged a few rebuttals back and forth with this psychologist it was clear it was in one ear and out the other, he preferring to simply suggest our opinions differ and I should accept that.  Naturally I completely accept that, I have no problem with the Dr having his own opinions and views, but here’s the real nub of this blog and the real eye-opener…. When his opinions and views impact on the needs of people with OCD then should he not be reviewing his own beliefs?

Now based off my personal Twitter ramblings I don’t expect any health professional to necessarily change their view, but what transpired during our little discussion was, completely unsolicited by myself, multiple people with lived experience of OCD all started sharing their experience that for them the ‘label’ of OCD was beneficial. Those who have OCD shared how for a variety of reasons they welcomed the diagnosis of having OCD.  Which of course backs up my own belief and the many years of anecdotal evidence I have from talking to people with OCD over the last 12+ years.

Ignoring my view is one thing, but for any health professional to seemingly flippantly dismiss multiple people with lived experience was a real eye-opener and rather discouraging and concerning if those views are indeed widely held, in fact my view that makes those health professionals person a NVG (not very good) therapist for dismissing those with lived experience so easily, a view that earned me a Twitter block from the good Dr.  In fact it is unforgivable that any health professional that is meant to help us puts their own therapeutic beliefs (in this case about diagnostic ‘labels’) above the needs of the people they’re meant to serve. If people with lived experience of OCD are all saying the same thing, that the diagnosis and ‘label’ of OCD was helpful and beneficial, then surely they should be offering that?

Thankfully through my job I work with some fantastic clinical psychologists, and one of the many reasons I consider them all to be VG (very good) therapists is they seem to listen to what people with lived experience need and want (in addition to helping them recover).

Just to add a little more ‘evidence’ to my theory about the helpfulness of ‘diagnosis’, a few days ago Prof Salkovskis tweeted an image from a conference about IAPT data which seemed to suggest in services where there was a diagnosis (problem descriptor) is identified, treatment outcomes are better.

But my point scoring aside there, don’t get me wrong a label is just a label, we still have to do the hard work and ‘treat’ the OCD and that’s the hard bit!  But at least if we know what we are dealing with we can research it, educate ourselves and work towards recovery through ‘treatment’.

Society double standards over Trump and disability mocking

Jimmy Kimmel mocks Trump and OCD

Since his inauguration there doesn’t seem to be a day that goes by where there isn’t a frenzied amount of activity on social media surrounding President Trump.

These days Trump frenzy rarely forces a raised eyebrow for me, however last week seeing ‘Trump and OCD’ in the same social media posts did cause me to pause and take notice, then get pretty pissed off.

In brief, some clever dick created a montage of Trump arranging items on his desk, and one US talk show host, Jimmy Kimmel (had never heard of him until last week) made a reference to the President being a little OCD, and in a clip on his show which you can watch here said he hoped the new healthcare plan covers OCD.

All very funny of course… unless you are one of us poor unfortunates that suffers with OCD, then it is less funny and more frustratingly diabolical claptrap for cheap laughs at our expense.

Now here’s the thing that struck me. During the presidential election, society widely criticised Trump for appearing to mock a physically disabled reporter.  As it goes Trump is just embarrassingly ‘dad’ lame at impressions, I actually don’t think he was mocking the disability.

But here’s the question… why did society and social media find it acceptable to mock Trump’s OCD, yet are all full of condemnation when they thought Trump was mocking the reporter’s physical disability? Double standards when it comes to Trump? Probably!  But sadly the answer is far more engrained in the publics wider perception of OCD.

Firstly, I don’t know if Trump suffers with OCD or not, but that montage clip does not offer evidence to suggest Trump was moving items because of OCD at all, I know that, most of you reading this will know that. We know that OCD is far more than a little bit of symmetry, I am not even sure Trump was doing that anyway.  If Kimmel and his scriptwriters knew it they ignored it anyway, which makes it even more despicable.

The reason that people think it is acceptable to mock and ridicule what they perceive to be OCD ritualistic behaviour is the unhelpful and wholly inaccurate media representations of OCD like the one Jimmy Kimmel and whatever his US TV show is called portrayed. He is not alone, every time a pointless celebrity like one of the Kardashian misuses the OCD term it adds fuel to the OCD misconception fire.

Because of these inaccuracies and strange looking behaviours society think it’s funny and acceptable to laugh, make jokes and have a cheap laugh at the expense of people with OCD, and the more they do that the more it creates stigma for those suffering with the disorder.

In general the stigma around mental health has moved on significantly in recent years, and to their credit even the royals are getting involved in raising awareness around the problems of mental health but for some reason OCD has been left behind and as mentioned before OCD remains the poor cousin of mental health.

So what needs to change?

I keep reading the name of the condition needs to be changed, well that’s not the answer. They mock what we call OCD now, renaming the condition will simply mean they mock the new name. No, it’s the perception of OCD that needs to change.

How? I don’t know. For starters, we need personalities like Jimmy Kimmel to engage brain before making jokes that mock a recognised disability and for perpetuating this misconception, we need TV, media and newspapers to take more responsibility when referring to OCD. Most importantly we need to find a way to reach out and tell the world that OCD is a serious condition, a disorder that impacts on every aspect of a person’s life when they’re suffering. We, (OCD-UK) and other charities have tried various awareness approaches with our limited meagre resources, but it’s simply not working on the scale we need it to. I know OCD-UK will keep trying and keep pushing for positive change to highlight the D (disorder) in OCD, but we need to think differently, we need to think bigger to change the perception of how people view OCD.

Only then will the cheap jokes stop… hopefully.

Time to ditch the term ‘Pure O’?

I was going to give this the title Controversial – Time to ditch the term ‘Pure O’ but actually it really should not be controversial. I know some of you reading this will suffer with ‘Pure O’, but before you dismiss my post, please take a moment to read it and try and understand where I am coming from, because if you do, you will see I am not being controversial at all, I am just trying to do what is right for everyone with OCD.

I first published this on the OCD-UK forums a couple of days ago.

A couple of weeks ago a subject about the methods of private therapists was being discussed, and somehow the topic moved on to a discussion about the term ‘Pure O’. Further to that discussion I am even more convinced of the belief that the term ‘Pure O’ needs to be resigned to the history books, and replaced with another term/phrase.   My reasons for this are not new, I have been harping on about it for some time now. But the primary three reasons are:

  • It’s technically inaccurate.
  • It’s not a medical term.
  • It confuses people into not recognising their own condition accurately.

Now don’t get me wrong, it may be helpful in helping people identify an aspect of OCD that they may not have been aware of  perhaps, but that’s not a good enough reason to continue with a factually inaccurate term, especially if a better and more appropriate phrase can be used instead.

The fact is, and this is backed up by lots of anecdotally evidence from people I speak to through the charity that they mistakenly think they only have purely obsessional thoughts, i.e. that it is Obsessive Disorder (OD) and not Obsessive COMPULSIVE Disorder (OCD). The problem here is if you are failing to recognise symptoms of your own condition, it’s going to make it incredibly more difficult to move forward, which is why I feel strongly about this.

Whilst it’s not a medical term, most OCD specialists will understand what you mean, but for people going to their GP or local therapists and talking about ‘Pure O’, it’s more likely to have therapists confused and scratching their heads, and I am not sure we can blame their lack of training in OCD for not recognising a non-medical term!!!

I know my suggestion that we ditch the term ‘Pure O’ will not be popular with a lot of people, and I suspect some commercial therapists here and in the US will not buy into this, because for some it allows themselves to create a market for themselves by claiming to be ‘Pure O ‘experts. In fact going off subject slightly, my advice to anyone seeking therapy is if you come across any therapist claiming that they’re a ‘Pure O’ specialist and don’t declare on their website or within the first sessions of treatment that it is just standard OCD then I would give careful consideration to ditching them because they’re educating you and arguably they’re not being honest with you. And dishonest therapists should be avoided at all costs, and sadly there are a few of those about, but I will revisit that subject another day.

But going back to ‘Pure O’ there are too many sufferers that read articles online that are led to falsely believe they don’t suffer with any compulsions at all. The fact is it is simply not true, ok so they may not be ‘washing their hands’ but they will engage in at least one, if not most of these:

  • Checking things on Google
  • Checking for reassurance from loved ones or friends
  • Checking own body for arousal or other sensations
  • Physical ‘avoidance’ of people, places or objects
  • Attempt to force and check for ‘feelings’

See the trend here, there’s a physical action taking place, that’s right, a compulsion and if someone, anyone, with any form of OCD wants to recover they have to be able to identify and recognise their illness.  I once said that most forms of OCD include ‘checking’ as a compulsion, and the aforementioned badly and inaccurately named ‘Pure O’ is no different in the fact there is always ‘checking’ taking place. In fact, I might even argue on another day that the average person with what they call ‘Pure O’ will engage in more compulsions than people with other aspects of OCD.

So, a more factually accurate term fore ‘Pure O’  might be Obsessive ‘with less obvious, but still there’ Compulsive Disorder. Now I grant you that’s not as catchy as ‘Pure O’, but it’s a lot more accurate.  I don’t have an answer for what it should be rephrased and renamed to, but maybe it shouldn’t be renamed at all and just ditched.  One of my forum moderators made a good suggestion on the previous discussion that should refer to all forms of the illness the same, i.e. ‘OCD with a theme of……’.  That’s actually not a bad way to bring more awareness and recognition to ‘all’ aspects of OCD when we talk about the subject in the media.

But the bottom line is this, if people are being led to the false misrepresentation that ‘Pure O’ differs from others aspects of OCD, and they are made to believe they don’t have any compulsions, then I am afraid they’re not being helped at all.  So maybe it’s time we drop the term ‘Pure O’.

Book Review: Pulling the Trigger – Unique and Innovative

It’s not very often that you come across a product that is unique and innovative and brings something new to the table.

Pulling the Trigger: OCD, Anxiety, Panic Attacks and Related Depression – The Definitive Survival and Recovery Approach is such a product, a book that stands out from the plethora of recent books about OCD because it combines a first-hand experience of life with OCD and the suffering that comes with it, alongside therapeutic explanations by the very therapist that helped that person recover.

Unlike previous books which use case studies fleetingly, by remaining with Adam’s story from beginning to end it offers context to how the OCD impacts on Adam and allows the reader to fully understand not just the OCD symptoms but how Adam was feeling.  With Lauren’s narration about each aspect of Adam’s journey it really gives that fantastic insight into what was going on and where Adam was going wrong (the mistakes we ALL make when trying to live with OCD).

Reading the book, at times it almost felt like I was sitting in and observing an actual therapy session between the authors, Adam Shaw and Dr Lauren Callaghan and that is precisely what makes this a unique and innovative addition to anybody’s bookshelf of OCD titles.

Read More

Be Inspired!

When Mo Farrah got knocked down in the Olympic 10,000m final all I could hear in my head was the lyrics from that great Chumbawamba song, Tubthumping ….

I get knocked down,
But I get up again
You are never gonna keep me down

As I sat there marvelling at the marvelousness of Mo Farrah crossing the finish line to win his third gold medal (he’s now got himself four) all I could think about was the analogies between athletics and tackling OCD….

This was reinforced a few days later with one of the most amazing pieces of sportsmanship I have ever witnessed occurred when two female athletes (New Zealand’s Nikki Hamblin and American Abbey D’Agostino) fell during their 5,000m semi-final run. (Now bear with me, I will get to the OCD stuff in a moment.)

The American was quickly up, but then stopped and helped Hamblin to her feet who was still strewn on the track. The two tried to continue running together but the American quickly realised she had in fact injured her own knee, and she collapsed back on to the track. This time the Kiwi was the one lifting D’Agostino back up. Realising her injury the American urged the Kiwi to run on alone. After painfully completing the final 4 laps of the track the American fell into the arms of the waiting Hamblin. It’s reported they kept encouraging each other not to give up and reach the finish line (you can watch it here).

Now this is where OCD comes in…

Read More