Twitter @AshleyFulwood ashley@ocduk.org

Sex, masturbation, semen and OCD

Well that title should catch people’s attention!!!

A couple of weeks ago I restarted therapy for a problem that I have frankly been too embarrassed to talk about at length and deal with. Whilst I have made fantastic steps forward with nearly all of my other OCD problems, this is the one problem preventing cross that finish line of OCD recovery.

But before I talk about this present problem, it may be helpful to look back on my life with OCD, just to give you a picture of the problems OCD created in my life at one time, all of which I have dealt with:

  • I could not use a toilet (even my own) without washing and showering myself for hours.
  • I couldn’t touch a toilet at all, I would use elbows and feet to open bathroom doors etc.
  • I avoided public toilets for anything but stand up urination for over a decade.
  • If I had to use a loo when out, my clothes were so contaminated in my mind I had to throw them away.
  • I had separate clothes, indoor and outdoor, and outdoor had to be kept in a box outside my room.
  • I could not wear clothes, I would have to sot naked on a towel in my bedroom.
  • I had to shower after going outside, even to local shop.
  • During the daytimes I would avoid eating so not have to use the loo when out.
  • I took pills to stop me needing the loo.
  • I would wrap my mobile up in cling film in those early days of mobiles.
  • I used to use several bottles of washing up liquid on my hands even at the kitchen sink.
  • I would stare at the water taps and gas knobs to ensure they were off (not long, but still 10 or 15 minutes at times).
  • I once had issues checking, and  once drove around and around for 50 miles to check a cone I had moved was in the right place.
  • I once drove back 40 minutes to check I had locked a door.

I am sure there’s plenty of other ‘mad’ behaviours I did because of OCD. As you can see above, although I mainly had contamination problems, it’s shifted to checking at times. That’s partly why I despise the acronyms, because OCD will shift and it’s not the theme or ‘flavour’ that is the problem, it’s the way we deal with the unwanted thoughts (obsession) that is the problem, i.e. OCD is the problem, not the letter some acronyms put before it.

As mentioned above, I have dealt with all of those OCD problems, for readers in a similar position it may be helpful if I also list some of my achievements over OCD:

  • I can use a public toilet.
  • I can use a toilet without washing my hands if needs must.
  • I can put my hand in toilet water (I have a pics of this).
  • Go out for a few hours without checking.
  • Go out deliberately leave the gas hob on.
  • I can lick sole of my shoe.
  • I can pick dog mess up with just a dog poop bag.
  • I can pick ship poo up in my hand (I have a pic of this).
  • I can run my hand over sole of my shoe.
  • I can drop my phone on floor of  a public toilet.
  • I can eat food I’ve dropped on the floor, even when out (within reason).
  • I can pee all down my leg… long story, accident when cycling, wind blow back!

So with all that progress I am perhaps 90% recovered, or to put it in sporting terms, I am at the last hurdle of a 100m hurdle race with the finish line the other side of this hurdle.  For a long time I have walked around this hurdle avoiding not just dealing with it,  even talking about it, well enough is enough, it’s time to talk!!!  Not just for me, but for others suffering in silence too.

So I finally restarted therapy (CBT), and whilst it’s early to decide if this therapist can help me or not, I am 100% certain that the CBT approach is my best chance of recovery.

I have debated if I should talk about this in public, and after asking a few questions about this issue on the OCD-UK forums last week, yesterday mid bike ride I decided I would talk more.. I then debated if I should post, but I know others are struggling with this, and if nobody else is going to talk about it then we need to start somewhere.. so here we go.

So on with the video… but first, let me just make this disclaimer…It’s embarrassing enough so please forgive the most unflattering video angle, and I didn’t bother shaving before heading out on the bike, by this point I had just climbed 800ft in 4 or 5 miles so I was not looking my best and it’s embarrassing enough so let’s all ignore my double chins.. ok! 😉

In the video I talked about when I am triggered I go through a ritual which takes two hours. It goes something like this:

  1. I can sleep after (in my mind the area is already dirty), but then when I wake I can’t touch anything or do anything until my rituals complete. If someone knocks at the door I have to ignore.
  2. Carefully tip toe to the bathroom, use the toilet and then bath (without touching shower curtain), then shower straight after the bath.
  3. Get out of the bathroom, open all the doors to the kitchen and washing machine door, set the cycle to run. Then strip the bed and carefully place bed cloths in without touching doors or walls and kick the door shut with my foot so the machine starts.
  4. Back into the bathroom, clean the toilet (in case anything on it from night before or before my bath), then shower myself clean.
  5. Spray with Dettol kitchen cleaner all the doors, walls and handles with I passed with the bed clothes, the outside of the washing machine, the edge of my bed and anything I may have touched i.e phone.
  6. Back into the bathroom and spray the bath, taps and anything else I may haver touched in the bathroom.
  7. Back into the shower to clean myself all over again.
  8. Keep running the washing machine until I see enough bubbles on the ‘dirty’ bed clothes to ‘feel’ they’re clean… although step 8 can be done as I get on with my day.

So at this point my ritual complete and wont bother me again for days or weeks until I next trigger myself.

So that’s where I am, that’s what I have problems with.  I don’t think it’s the semen itself that is the problem, I think it’s what that represents,  I get a surge in anxiety, but I can’t quite put my finger on what I am worried about, I think it’s something along the lines of disgust, shame etc perhaps mental contamination, I cant quite put my finger on it, and no amount of thinking when in that moment is leading to answers, which is why I have presented for more CBT.

That’s why I went back to see a therapist, in the hope she would ask me the right questions, to get me thinking in the right process and maybe, just maybe help me join the dots, even the missing dots. I truly believe if I can join the dots with what is keeping the anxiety and fear so high, I will be able to deal with and challenge and overcome by doing the appropriate behavioural exercises without showing or washing.

I don’t have any answers right now, but I think the first step is talking about it, and if this post helps one other person feel less alone, less isolated then my embarrassment is a small price to pay.

Ashley.

P.S. As you can see I am panting after just 3 or 4 miles in the video, so there is a real challenge to get myself fit to cycle 100 miles in just 7 or 8 hours thus summer, but that’s what I am working towards. If you think my story and the charity OCD-UK is worthy of a couple quid of your money then please do sponsor my cycling challenge for OCD-UK at: https://www.justgiving.com/fundraising/ocd100

 

Thankful for my tribe

Recovery from OCD is not easy, but with the right support recovery really is a possibility. But, reaching the point of recovery and living with OCD can be incredibly hard and at times it will take us to dark places, places that are full of despair and where recovery doesn’t just seem a long way off, but completely unlikely.

Which is why it’s so vitally important that we surround ourselves with our positive tribe, our cheerleading squad who will lift us when we’re down, people who will make us laugh, people who will listen to us without judgement and most importantly people who will reinforce the belief that recovery is possible at the very times when we’re struggling to have such belief.

I remain thankful for my tribe.

Charles Linden, The spin debunked.

Every now and again I am asked if I recommend ‘The Linden Method‘ for the treatment of OCD.  It may surprise some, but I rarely say no. Instead I simply suggest if the person wants to give it a go and it is not out of their budget then by all means try it, but I warn them not to be fooled by the ‘spin’ on the website. I do actually go on to say that there are better treatments and therapists out there that I would recommend.

So the other night I was talking about the Brexit referendum and the misleading campaigns for leave and it instantly made me think of Charles Linden/The Linden Method and the misleading ‘spin’ I keep being shown by different people, so I thought that it was about time I addressed some of those.

I’ve long been a critic of Charles Linden and his approach for dealing with feedback. I have observed from a distance the lengths he will go to silence or discredit critics.  I truly believe if The Linden Method is so good, it will stand up to critics and criticism. After all, he frequently critiques other therapies, so The Linden Method should not be above critique either.  Which is the purpose of this blog, to highlight and rebuttle some of the ‘spin’.

But before I address the spin, I actually do agree with him on one point.

Recovery means total freedom. Never compromise. Never wait. Never believe it isn’t possible. Never trust those who talk of coping or management.

The fact is, people can and do get better, people can recover from anxiety disorders like OCD. But, the method of how we get there is where we differ, and why I think some of Linden’s claims are misleading, so here are my top 5 (current) misleading Linden claims/spin.

 

Spin Debunk 1

The Linden Method is the world’s only accredited, dedicated anxiety disorder recovery therapy. No other process exists that is recovery focused and accredited to lead sufferers to full and lasting recovery.

Well where do we start? If you watch any of Charles video’s you will hear him waffle with a few words of relevance, but deliver very little of substance. I think this claim is pretty much of similar deliverance.I would challenge that The Linden Method is the only dedicated anxiety disorder recovery therapy, I think it’s fair to say that CBT (Cognitive Behavioural Therapy) is completely recovery focussed. The whole point of CBT is to help a patient deal with their problems here and now and to focus on helping them lead a full and lasting recovery.

But moving back to the first line, notice his use of the word accredited (and in the second line), this seems to be the crux of all that spin, he’s claiming his method is the only accredited anxiety therapy. So let’s look at the accreditation. He then goes on to claim “The Linden Method is powered by LAR ‘Linden Anxiety Recovery’ The only accredited, dedicated anxiety disorder recovery therapy”. So where does the accreditation come from?It simply means that the Linden Anxiety Recovery training (for their associates) was awarded NCFE accreditation. But NCFE is not a medical accreditation body. So the bottom line when you work through the spin is that yes there is accreditation, but actually doesn’t mean anything, it’s not medical accreditation which is what we should be looking for.

 

Spin Debunk 2

Independent University Led Trial Results. The most recent trial carried out at Copenhagen University saw incoming clients reduce their anxiety levels from an average of 18.24 (severe) to 2.84 (normal) by doing The Linden Method Program.

This one is really simple, Charles claims that the research at Copenhagen was independent, but it was anything but independent.  The trial was reported on Linden’s website to be led by Psychologist ‘Martin Jensen’ University of Copenhagen.   What Charles fails to mention on any of the pages where this ‘independent’ research is referenced, is the fact that the same Martin had been and seemingly still is part of the Linden Method.   According to another of Linden’s websites “Martin is our TLM Director in Denmark and is a qualified psychologist. Martin’s experience as a Linden Method Coach and also as an educator is only matched by his wonderful personality and mind.”

There was also issues with how the participants of this independent trials were selected as Professor Paul Salkovskis mentions in his blog here and here.

So, has the Linden Method been the subject of independently led university trials?   Not that we can see, no.

 

Spin Debunk 3

“The world’s most influential authority on anxiety” Hay House Publishing

On his website, the quote emanating to come from Hay House Publishing is that Charles Linden is the world’s most influential authority on anxiety.  So last year I emailed Hay House to ask why they made such a claim, this was their reply.. “I can confirm that Hay House didn’t make the statement that appears on the site you reference.”

So is Charles Linden an influential authority on anxiety?  Well to the person who wrote that quote, maybe! But it was seemingly not Hay House according to them.

 

Spin Debunk 4

Can talking therapies like CBT or counselling cure anxiety? NO. In fact, talking therapies will either a) prevent recovery or b) increase your anxiety.

So here is another great example of Charles being critical of other therapies (which is fine), so this is why he must be prepared to accept critiquing of his method and claims. Can CBT or counselling cure anxiety? No.  I agree in the respect that every person alive will have anxiety from time to time, so we’re not aiming to ‘cure’ anxiety or stop anxiety. Anxiety can be helpful in some rare situations.   But what CBT can do is help a person cure their anxiety ‘problem’.

As for the claim that talking therapies will prevent recovery or increase anxiety, well of course any therapy done badly could be problematic. But, certainly if CBT is done correctly then it can a) create recovery for the patient and b) help them lower their anxiety and remove the ‘problem’.

 

Spin Debunk 5

I am not a psychologist but I suffered for 27 years and have since helped well over 20 million people with my materials… 200,000 plus with the home learning program alone.

Where does he get these numbers from? I can’t claim that these figures are false, they may well be true, but again it’s all in the spin.

20 million? Even if that is simply a combination of figures from people watching his various videos, reading his websites or buying The Linden Method, there is a world of difference between buying/viewing the materials and those same materials actually helping people.  I viewed much of the materials and they didn’t help me at all.   Is there evidence that 200,000 were helped by the home learning programme, or is that simply a sales figure? It sounds impressive, but when you remove the spin it doesn’t mean much.

 

Summary 

So there you go, my attempt to debunk some of Charles Linden’s claims, I will let you make your own mind up.   But these are just some of the reasons why I and to my knowledge all the existing anxiety charities like OCD-UK, Anxiety UK or No Panic or other independent anxiety forums stop short of actually recommending The Linden Method. We can’t all be wrong, can we?

 

UPDATE: 7th Aug 2017

What is HIGHLY relevant is that they are preventing people’s freedom of choice.

The above quote came from a post made recently on Charles Linden’s website, and he is right, we must not prevent people’s freedom of choice. The post on Linden’s website starts by seeming to suggesting people who are critical of his the Linden Method are guilty of unprovoked and unwanted harassment and bullying. He goes on to suggest that unless those people sign an agreement, they will be sued with legal costs costing a minimum of £30K. I am not privy to everything that goes on with Linden, there may be issues of individuals overstepping the mark, but I fear he confuses challenging his claims and critiquing his claims/method with harassment. If Charles is free to critique talking therapists and makes outlandish claims about his Linden Method, then it should never be above fair constructive critiquing. Like Charles writes above, challenging critiquing allows people to make informed choices when deciding on their treatment, and gives people a freedom of choice.

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.

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’.