Where am I now?

Hi everyone,

Long time no hear I know. I’ve been meaning to update the blog for a long time but time has run away with me and I never quite knew where to start. However, it’s the end of OCD Awareness week today and I have a new laptop (woo hoo) so today seemed an apt today to let you all know what has been happening on this crazy journey we call life.

Logging back into the blog was quite a revelation, old blog posts reminding me of my suffering, comments from lovely readers and one lady who just posted very directly “are you happy?” See the short answer on my reply to her comment if you’re in a rush but for my longer musings make yourself comfortable.

Overall, what I think people really want to know is did I get better from OCD? In a nutshell the answer is yes. I had long and intensive months of Cognitive Behavioural Therapy (CBT) with Exposure Response Prevention (ERP). I had to record myself saying my worst fears aloud and listen to them on repeat until my anxiety died down, I had to write scripts featuring my worst case scenarios and I had to change a nappy with no one else in the room. I’ve tried homeopathic remedies (and vomited them straight back up again because my anxiety was too high to keep them down), I’ve taken mindfulness courses and sat in fear on meditation retreats. I’ve done yoga, tai chi, gardening and had shiatsu (if you tell me it’s relaxing I’ll probably try it).
Slowly but surely things began to change. These things are gradual and recovery certainly doesn’t announce itself with a showy, jazzy entrance but slowly the shell of me began to be filled in again. I laughed more freely, made eye contact with those I love, and saw friends again. My jaw didn’t hurt so much from gritting my teeth, I ate food and kept it down. Days came and went and I realised that I wasn’t just counting the hours for another long day to be over. Sometimes a new day didn’t seem so terrible to consider.

Months turned into years and suddenly I felt able to quit my job and go travelling. I travelled for a year in South East Asia doing things that once would have felt hard to consider. My days are no longer filled with endless seeking for answers and so paradoxically I notice my thoughts less. I tell people I have fewer intrusive thoughts whereas I suspect the reality is I have just as many but they do not hold the same significance for me anymore.

So am I happy? None of us are happy all the time. I have happy days and sad days, I have calm days and grumpy days. My life is full of the grey; no longer just the black and white and it turns out grey isn’t such a bleak colour after all. I still get intrusive thoughts (because we all do) but now I can observe them and sometimes even laugh at them. In Singapore, in a launderette, whilst I watched my clothes flying around and around a thought planted its roots in my mind. A visual image of me stripping in front of all the local people and being arrested by the strict Singaporean police for some kind of gross indecency. There was no wave of nausea, no fretting about what it meant just guffawing that my OCD had brought to the table such a bizarre offering. Our OCD is nothing if not creative.

I still do my exposures and I have accepted that recovery is not linear but it’s a voice that I no longer listen to quite so fervently.
It became a whisper when I began to roar.

OCD did not kill Jo Cox

For readers in other countries, you may not be aware that sadly, this week, one of our MP’s was killed as a result of being shot.

As often happens following these tragic events, there has been much speculation as to what happened and what drove one man to these actions. The reason I am writing this post is because much has been made in the media, of the fact, that the man who allegedly killed her also suffered from OCD.

This was one headline from our tabloid newspapers:

Man arrested after Jo Cox shooting is ‘obsessive compulsive who rubbed own skin with Brillo pads’ relative claims

It is a damaging headline. The link is immediate. He had a mental health condition; he must therefore have been a danger to the public and this is what drove him to murder a member of parliament.

OCD is a disorder, not a killer.
At its’ heart are intrusive thoughts that torture the sufferer inexplicably. There are often themes to the types of intrusive thoughts that occur and these vary wildly and uniquely from individual to individual. Themes can include topics such as contamination, sexually intrusive thoughts and yes even harm thoughts. But the emphasis has to be on the word intrusive. They are, what is otherwise known as, “ego dystonic”. Simply put, they are not congruent to the persons’ core values.

Why is this so important to emphasise? Because even if Jo Cox’s alleged killer did have OCD in the form of harm thoughts (and there is no evidence at this time to suggest that he did) this would absolutely not have led him to carry out such an act. In fact, quite the reverse. OCD sufferers, along with the agony of intrusive thoughts, will have compulsions they carry out to try and prevent the thoughts from occurring or becoming true. Anyone with OCD experiencing intrusive thoughts about killing someone are the least likely candidates to be researching murder methods and creating home-made ammunition.

Following Jo Cox’s awful murder, I have read articles and tweets that lament the fact that mental health provision in the UK is woefully inadequate. There is no doubt that mental health services are under-resourced (and some will be woefully inadequate) and this is definitely a discussion that needs to be had at a more suitable time; but to push this political agenda when discussing the murder of Jo Cox conflates that mental illness was to blame for her death.

Whilst much is made of his mental health problems, it draws attention away from other more pertinent discussions. It has been widely reported that this particular individual had contacts with far right, neo-nazi groups. It has also been mentioned that he was isolated and lonely. Of course, these are not the only factors and I am certainly not arguing that loneliness a murderer makes. But these are all relevant discussions to be had.
Prevent (who work to prevent terrorism) state in their policy guidance that “where there are feelings of isolation and loneliness, radicalisers can exploit this by providing a sense of purpose or feelings of belonging”.
Where are the discussions about marginalisation, social exclusion and that taboo topic, loneliness? Or maybe we need to be having an open discussion about politics, hate and fanaticism.

It is impossible to know what drives an individual to kill but let’s be clear; there are few mental health conditions that drive people to murder. The fact that this individual potentially had a diagnosis of OCD is about as relevant as a diagnosis of eczema.
OCD did not kill Jo Cox; an individual who is currently in police custody did.

What’s your gut telling you?

I have been struggling with some big life decisions in the last week or so which inevitably I have found very anxiety provoking. I am lucky to have lovely friends and family who wish to help but I have noticed a number of well intentioned cliches that get trotted out in these times and I also noticed how untrue they are when it comes to anxiety and OCD. Here are a few of the ones I’ve noticed. Can you add any more?

  1. What’s your gut telling you?  – Honestly. My gut is telling me that I want to throw up and that I can’t sit still. Why what’s your gut telling you? This one just baffles me. I get the sentiment behind it- that we should go with our instinct and not get confused by the myriad of thoughts that are telling us what we “should” do. When you suffer with anxiety however your gut is just a swirling mass of wriggly worms. If I lived by my gut I wouldn’t get very much done because all it tells me is “You’re doomed. The world is doomed. Now vomit”. The sensation is so strong that it overrides any sensical message that may be trying to get through.
  2. You’ll know when it’s right – Now this one is just SO untrue especially when it comes to OCD. You do know OCD is known as the doubting disease right? We never know when anything is right. That’s the whole problem. If I did I wouldn’t have spent the last 14 years obsessing about a vast array of worries including whether I could be a paeodphile. Nothing is “right” with OCD. This statement can also be especially untrue when it comes to relationships if Relationship OCD (ROCD) is present. I’ve heard so many people say to others when talking about their loved ones “I just knew” or “you just know” but in ROCD that just doesn’t happen. Sometimes even when it’s right, OCD will be telling you that it’s wrong. OCD likes to mess like that.
  3. Everything works out OK in the end –I’m not saying this is completely untrue, in fact I think when you have a sense of perspective it is possible to see that most things (unless it kills us) aren’t the end of the world. Rational human beings can see that if they make a wrong decision, life won’t end but for someone with anxiety it just doesn’t feel like that. Instead, it feels like life will be miserable forever, you’ll never be happy and you’ll spend the rest of your days in a permanent state of regret. Try making a decision when your brain is telling you that.
  4. Write a list of pros and cons – Again, so well intentioned but try reading a pros and cons list written by someone with anxiety. For every pro there will be a con because that’s kind of how our brains are wired. Every time your brain comes up with a nice positive, the sneaking voice of anxiety whispers a negative in your ear. I have never written a pros and cons list that has provided an illuminating answer (except that I’m a neurotic worrier that is paralysed with indecision – and I already knew that anyway!).

    I’d be interested if anyone has experienced any others. If you post in the comments box I’ll publish them.

Emily x

It’s a whiteknuckle ride

I came across an expression the other day which I absolutely loved. It was this: “white knuckling your way through an exposure” (found in this post by Angie)

It summed up something that I’d been thinking about in relation to exposures but I’d never heard mentioned in great detail. Having said that I think it could be the key to why a lot of treatment doesn’t work as adequately as it could.

So what is “whiteknuckling” your way through an exposure?

I became aware of it through a friend who is also undertaking ERP (Exposure Response Prevention) for her OCD. She was describing doing exposures but explaining that it all felt rather perfunctory. Whilst I heard her talk about the imagery scripting she was having to do it sounded as if she had very little anxiety from it. It was like she was doing it as a rather academic exercise but not really connecting with it. Once she described this I began to honestly reflect on some of my exposures and I remembered that I’d “whiteknuckled” my way through some of them too.

In my experience I didn’t always fully commit to the uncertainty and the exercise (sorry CBT therapist). In fairness to myself I did become aware of this but I never had a word to describe what I’d been doing.

Now I do. And it’s “whiteknuckling”. Whiteknuckling in my mind is doing your exposure but not really “being there” either. It’s doing an exposure but detaching yourself from what is going on. My friend spoke of not really believing it’s OCD so half heartedly doing the exercise fully expecting to have to “figure it all out” later. It’s gritting your teeth and kind of telling yourself that maybe you’ll believe that you’re contaminated/a paeodphile all the while telling yourself that you’ll keep checking later.

So now we’re aware that we all whiteknuckle our way through some of our exposures (we all do right?) what can we do to address this.

The first one is showing up wholeheartedly to whatever exposure it is. Really connect to whatever it is you’re doing; if it’s writing an imaginal script really embody the words that you’re writing. It’s no good writing it as if you were writing your times tables. You have to really step inside the script.
If you’re having to contaminate yourself with dirt then really smear it on and commit to the belief that you might be really truly dirty and so on.

Secondly, check your breathing. If you’re holding your breath then it might be a clue that you’re whiteknuckling through an exposure. When we hold our breath tightly then we’re often not really allowing ourselves to feel whatever sensations may arise (usually terrifying anxiety). I can remember having to look at pictures in magazines of children and kind of holding my breath and crossing my legs whilst I did it. I was doing my exposure right? Wrong, I was squinting at a picture but with one eye on the exposure whilst the other part of me looked in the other direction (metaphorically speaking).

Thirdly, be honest with your therapist if this is what you are doing. They may have some things they want to try to help you truly commit to the task at hand.

And remember it’s not about getting an exposure 100% right but it is about being honest with ourselves and getting down and dirty with exposure.

Any thoughts? Anyone else identify with whiteknuckling?

Emily x


Post Apocalypse

You know those films where disaster befalls the entirety of civilisation? Does anyone else find it vaguely baffling that whoever’s survived seems to dust themselves off and sets about rebuilding their new life with a zeal that is frankly irritating?
I’ve been mulling over a lot lately the fall out from OCD. I think there can be a tendency when someone is recovered or recovering from OCD/anxiety to just be so glad to see them well that any acknowledgement of the impact of illness is glossed over. That British fondness for “looking forward”,  moving “onwards and upwards” kicks in and no one really wants to talk about the uncomfortable truth that OCD has impacts on our lives that goes way beyond the immediate.

I have had OCD since I was a teenager. One of my intrusive thoughts since that time has centred on a close family member. That’s a long time to be excessively worrying about another person. Do I think that it’s impacted on my relationship with them? 100%. It’s probably the only thing in this crazy world that I can be sure of.

From the outside it may not appear like there is much of a problem with our relationship as we get on fine. Nor would this family member even know that the OCD has been the cause of us not being so close. However, over the years my compulsions have affected our relationship. I have found reasons not to spend much time with them. It has been extremely hard for me to be affectionate with this person and I tend to be more closed and guarded with them.

Although I am now doing well from an OCD point of view that relationship has suffered for such an extensive period of time that it is now difficult to change. It is only since I have become better that I can fully see the damage that OCD has wrought on my bond with this person and it is only now that I feel the grief. The grief for how different that relationship could have been and should be and without wanting to sound melodramatic I honestly feel that some days I mourn it.

The examples of ways in which OCD impacts on people’s lives are endless. The women who gave up having children, either as a result of having POCD or worrying that pregnancy may exacerbate a relapse. Or those who have ended wonderful relationships because they obsess that their partner isn’t the right one for them or worry that their OCD is too much for their partner to handle. People who have left beloved jobs because they can’t drive anymore or the student who can’t go to the university of their choice because OCD and anxiety followed them into their exams and affected their grades.

Recovery gets us to a wonderful place where we can see our compulsions for what they were but simultaneously it gifts us the painful awareness of realising just how much debris our OCD has left behind. For a lot of us there will have been effects that are irreversible now. Relationships that have been changed irreparably, friendships that are long lost, careers that may never be retrieved even if the person is able to work again.

Once CBT finishes people are keen to point out how happy you must be to feel better. And I am. Most of the time I am beyond excited and thrilled that I have managed to recover fairly successfully from my OCD. I am lucky and I know that I am, I have a good life but that doesn’t stop me struggling to process how it can have wrought such havoc.

I think sometimes maybe it’s necessary to pick through the debris, to sift through the broken pieces. Bounding away to a new life without a backwards glance is for superheros in Hollywood blockbusters. OCD isn’t just some inconvenient blip from which we just re-build our lives unscathed. There is often collateral damage and it has to be OK to acknowledge this.

So what’s the answer? I don’t really have one. I don’t think that CBT is designed to help people work through their feelings about OCD. It does a great job of getting people better but from my experience it ends at the point of improvement. There can be follow up if there is a relapse but otherwise you’re on your own to deal with the complicated emotions that arise as you try to process its’ impact. Psychotherapy is a possibility but in my experience it fed my OCD. Questions such as “why do you think you’ve had these thoughts about this person” and so on lead into compulsive soul searching that can be totally counter productive. I can’t talk to family about it (and many can’t) as that would involve having to explain my intrusive thoughts about this family member.

So what do I do? I have found mindfulness the most helpful technique to help me get through those moments of grief or where a pang of regret hits me. After all I can’t change any of it and wishing it to be different doesn’t make it so.

I would be fascinated to hear what other’s experience are of processing their experience once they are in recovery.

Wishing you all well
Emily x

#OCDproblems – Reclaiming the hashtag

At the end of last year (how odd it feels to say that!) I had an idea. As a twitter community we had done some awareness raising using the #thatsocd hashtag. It was a powerful way to describe our lived experiences with OCD. However, I had a nagging concern that perhaps it was only reaching those suffering with OCD and I wanted to find a way that allowed us to reach a wider audience so that we weren’t just preaching to the choir- as it were.

On Twitter there is another hashtag that looks like this : #OCDproblems.

People use it to tweet about their neurotic quirks and habits. You know how it goes:
“Hate it when the teacher doesn’t wipe the board properly. lol.#OCDproblems”

“Wish people wouldn’t wear odd socks 😉 #OCDproblems

It’s irritating and a misuse of the term. Suddenly I wondered what it would be like if we took over the hashtag. If we piggybacked on it then we would be reaching all the people who normally use it to describe their neuroticism. I wanted it to be a peaceful awareness raising exercise not a snarky ‘have a go’ session so I put out a tweet to see who would be up for it. The response was astounding. The wonderful Ellen White went straight to gathering support and we were on a mission! I had anticipated that we may tweet for half an hour, perhaps an hour if we found much to say. Two hours on we were still going strong. 

I wanted to do a video to collate all the tweets that were sent. The video is long. This is deliberate. There were hundreds of tweets that were sent and I wanted to reflect that. If I were a media studies student (and thank god I’m not, this was hard enough!) then it wouldn’t be winning any prizes. It is not short, sharp or succinct. But then neither is OCD. It often feels never-ending, monotonous and repetitious and although I’m hoping they’re not words you’ll use to describe the video I felt to cut it or make it into some snazzy video would be to do people’s experience of OCD a disservice.I am also mindful that the video moves along quite quickly and that may make it difficult to read all the tweets. This is for two reasons. On an entirely practical note the video was shaping up to be about 20 minutes if I slowed it down much more. On a more symbolic note I wanted it to represent the speed with which OCD can move. Often our intrusive thoughts can feel fast moving and slightly hard to grasp. Please do not worry if you don’t read each and every tweet, the aim is to get a flavour. I have tried to include everyone’s tweets but I collated them using technology so of course this is not always fail-safe. Apologies to anyone I may have missed.

So just a few things left to say. Firstly, I hope you enjoy the video and feel that you have gained something from it by the end. It is by no means a perfect video but I am proud of the end result.

Secondly, thank you to @secretillness who made a lovely snapshot video of the tweets. It can be seen here

Finally, I want to thank the wonderful twitter community who tweeted openly and bravely about their experiences with OCD and who made the video possible. Any errors in the video are mine alone.

Wishing you all the best for 2015 and I hope you all make steps on your road to recovery.

Emily x


Copyright: The video is my own work but please feel free to share in order to raise awareness. Please do however credit me where possible.
The music is courtesy of the Free Music Archive. Artist is Chris Zabriskie. Track is Prelude No 18.

OCD, Mindfulness and Me

When I say “mindfulness” people hear “meditation” and often they’ve zoned out already, imagining long haired hippies, free love and no alcohol. But mindfulness is for everyone and anyone (whether you’re of the long haired hippy variety or not).

Following a conversation with a lovely person on twitter (@RoseWiltshire who blogs here )  I decided to put together a FAQ to mindfulness.

I’ve heard of mindfulness but I don’t really know what it is? So what is mindfulness….In simple terms it’s about being present in the here and now. We live so much of our lives in the past or in the future without being aware we’re doing it. How many times a day do we replay conversations we’ve already had with people or plan the conversations we intend to have, thinking about the hilarious anecdote we’re going to tell or the sarcastic riposte to someone who’s been annoying us (or is that just me? ). Our minds are experts at jumping out of the present moment. What mindfulness aims to do is help us bring it back and cultivate more awareness of the patterns of our minds and an awareness of the present.

So can I just decide to be more mindful? Well deciding to be more mindful is a first step but unfortunately our brains are their own masters so it will continue to be unruly and follow it’s usual patterns unless we make a conscious effort. Just saying that we’re going to be more mindful isn’t usually enough. This is where meditation comes in. Mindfulness is often described as a practice. The more you do it, the easier it becomes to bring mindfulness to your every day and so sitting down and actually practicing mindfulness is quite necessary. “Boring” I hear you grumble and yes sometimes it is a little dull but it’s also one of the most illuminating exercises that you can do.

OK so I’d like to do some practice, do I just sit and say “ommmmmm” a lot? A frequent misconception about mindfulness is that it’s all about being zen, having no thoughts and chanting. Seriously, people at work who know I practice mindfulness are frequently asking me about whether I’m really chilled out (my usual response is baahahahhahah). So let’s just be clear, mindfulness is not about getting rid of thoughts or existing in a constant state of calm, it’s about bringing more awareness to what is actually going on for us. So that constant feeling of panic? Thoughts that nobody likes you? Great, notice it, observe it, be aware of it. That’s mindfulness.

Ermmm that actually sounds pretty painful, thanks anyway but I think I’ll give it a miss. Yep that was my first response. Who wants to sit and actually draw their attention to what’s going on in their inner world which is frequently difficult? Mindfulness is not about flooding yourself with difficult experience or about sitting and really dwelling. It’s about just observing some of what’s going on for you. The thinking is that we exist in a paradox. The more we push away difficult thoughts or feelings the more they plague us. Mindfulness suggests that actually if we turn towards these experiences (even slightly) then we become less trapped by them, we can get some distance from them and maybe just maybe they loosen their grip on us. Mindfulness practice helps us notice the thoughts or feelings but not necessarily get caught up in them. A thought is just a thought but so often it becomes a whole story. Mindfulness can help us recognise the thought before it becomes a story that’s dragged us down to the pits of despair.

So how has it helped you? I have OCD and generalised anxiety (if you’d like to read more about how they affect me click here and here or indeed any of my previous posts). They’re disorders which are pretty much all about hyper fondness/attachment to our thoughts. An OCD sufferer experiences intrusive thoughts – these are usually unpleasant, terrifying and impossible to turn off. Prior to doing mindfulness, I really thought every thought I had must be true, that it must say something dreadful about me. I did everything in my power to try and get rid of the thoughts. I tried thought suppression (turns out they bounce back louder and in technicolour), I tried avoidance of things that trigger the thoughts (turns out that just makes life pretty small). It wasn’t until I did mindfulness  (and intensive CBT too) that I could just see them for what they were – rather weird, creative neural impulses. Mindfulness doesn’t get rid of the thoughts- in fact just yesterday at a meditation workshop run by Buddhist monks I had numerous intrusive thoughts about punching all the Buddhist monks in the back of the head. Time was when I would have run out of the hall sweating and panicking about what it all meant but instead I just sat and watched the thoughts pass on by (and smiled a little at the incongruity of it all).

So what do you think the best way to get into mindfulness is? 

There are several ways you can get into mindfulness. There are lots of great books with excellent audio guided meditation which you can do at home. Of course that takes discipline and it’s easy to just not do it. One of the best things I did was an MBCT course. This stands for Mindfulness based Cognitive Therapy and is an 8 week course. There are also MBSR courses (mindfulness based stress reduction). Doing a course provides the framework to get you used to practice as you have daily homework to do. For those that are worried that it’s some kind of group therapy session and that you’ll have to share, it really isn’t. The focus is on mindfulness and your experience of it, not what’s brought you to the class or what you’re struggling with. If a group really isn’t for you then you can also find teachers who do one to one classes (see below for links). For those with OCD and Anxiety I would emphasise that I don’t think that an MBCT  course is an alternative to doing CBT and ERP but it’s an excellent add-on that helped consolidate everything I was learning in CBT.

So finally do you have any links to resources?

Yes, yes and yes!

If you would like to do an MBCT or MBSR course then you can find them online. You can find one in your local area by going to this website. There is usually a cost to them although some GP’s or Community Mental Health Teams do refer to mindfulness classes too. If you are going to do one privately (either in a group or one to one) then ensure that the teacher has a good grounding in mindfulness. If all they’ve done is read the book and done the 8 week course themselves then I’d steer clear. Be on the look out for teachers who have studied to teach through the Mindfulness centre at Oxford University, Bangor University or Exeter University. Don’t be afraid to chat to the teachers and ask questions as you’ll get a good feel if they’re the right people for you.

If you’d like to read some books on the topic then here are ones I’d recommend:

The Mindful Way Through Depression – I love this book. It’s so easy to read and to be honest I think it’s a good one for anybody, depression or not. It also comes with guided audio meditations.

Mindfulness workbook for OCD – A great book with practical tasks to use mindfulness in overcoming OCD

Finding Peace in a Frantic World – A book I’ve dipped in and out of and used some of the guided audios. It’s a very popular mindfulness book.

There are so many others. I’ve got some of Jon Kabat-Zinn’s guided audio meditations and he’s also written a number of books, he’s a big name in the mindfulness field. Click here to see a selection of these.

Phew so that’s probably enough info for now! If there’s anything I haven’t answered or you’d like to know more then feel free to post in the comments and I’ll try to answer 🙂

Emily x