I was recently interviewed for a BBC Horizon documentary on OCD and I was asked if I would get rid of my OCD if I could.  I think my answer surprised a few people..

Up until the age of 19 I was a very happy, easygoing, confident individual.  On reflection I was possibly a bit selfish and didn’t think about other people as much as I should have done.  This all changed suddenly towards the end of my first year at university.  I noticed that I became very concerned with making sure my lights were off in my bedroom and sometimes would make excuses from social activities so that I could go home and check they were off.

At the start of the summer holidays I returned home to spend time with my Mum.  She went on holiday for two weeks and I would normally have been fine staying in the house on my own and working part time.  However, by the time she returned from her holiday I was in the grips of OCD and a couple of days later my diagnosis was confirmed.

In the two weeks that my Mum was away I had become convinced that I was HIV positive.  I was showering for hours at a time, constantly washing my hands and arms, frequently changing my clothes throughout the day and was hardly eating.  What I did eat I couldn’t make or touch because I was afraid that I would contaminate it.  My ultimate fear was that I would infect and thus kill my friends and family.

With the support and encouragement of my friends and family I returned to university for my second year.  I was very lucky that I was diagnosed very quickly and was seen by my university’s counselling service.  My family also paid for me to receive private cognitive behavioural therapy but I found this very hard.  It wasn’t until I was referred for cognitive behavioural therapy with the NHS that I really started to make a breakthrough with my OCD.  I was initially apprehensive of group therapy but it is the best thing I have ever done!

Going into the group we all introduced ourselves and met our therapists.  We met weekly and challenged ourselves through Exposure Response Prevention (ERP).  With this kind of therapy you get out of it what you put in and I had to make sure I was doing the tasks and activities my therapists asked me to do.  It was hard, of course, but it was encouraging to see the progress of other individuals in the group which made me want to work even harder.  It’s nice to know that everyone else in the group also has the same worries and fears as you, although I had to be careful not to pick up other people’s anxieties.

After this first course of group therapy I was very well and my Mum commented on how blasé I could be about germs and contamination but it was not to be the end of my journey.  My OCD quickly manifested itself in checking routines and behaviours.  Once again I was referred for cognitive behavioural therapy and I had individual and group sessions.  There I made great progress and am very fortunate that in Leicester there is an OCD Follow Up Group.  Meeting every couple of months the group reminds individuals of the model of OCD and triggers and of ERP.  The therapists there can keep an eye on people and if anyone seemed that they were struggling they could be referred for further treatment.

Again I seemed to be doing very well.  By this point in my life I was working full time.  However, after I made a few mistakes at work, my OCD switched to being concerned with perfectionism, in every aspect of my life.  This was hugely debilitating, making even the shortest of tasks take hours, checking and re-checking, asking others how they would have done things and seeking reassurance.  I became very ill and had to take time off work.  It was at this point that my therapist suggested we consider Acceptance and Commitment Therapy (ACT) as my OCD had become all encompassing.

ACT uses the strategies of acceptance and mindfulness.  My first task was to read Russ Harris’ book ‘The Happiness Trap’.  As opposed to carrying out the tasks I was set with ERP to rid myself of anxiety I had to learn to accept the anxiety that I was feeling but still to live mindfully in the present, noticing and accepting my thoughts.  Through exercises, reading and re-reading Russ’ book and seeing my therapist weekly, I began to emerge from the dark cloud and found moments of joy in my day.  I was able to restart work and began to enjoy each new day.

It’s now three years since I was so ill that I couldn’t work.  I won’t pretend it’s been easy as there have been ups and downs and a relapse following a bereavement.  There have been times when I’ve been so anxious I’ve made myself physically sick and it seemed so hard to ‘accept’ my thoughts and feelings but I’ve got through it.  I have been on medication since my first diagnosis at the age of 19 but it is through cognitive behavioural therapy that I am where I am today.

I recognise that I am very fortunate to live in Leicester where the therapists and treatment are so good and that I can attend an ACT follow-up group every two months but the secret is to never become complacent.  Even though I am very well at the moment, I still choose to embrace my life the ACT way, living in the present and appreciating every moment that life has to offer.  The trick is to keep working at it.  I’m now aware of the way my mind works and can sense if a thought process is spiralling out of control and take appropriate action.  I still re-read Russ Harris’ book and do the exercises recommended.

I was recently interviewed for a BBC Horizon documentary on OCD and I was asked if I would get rid of my OCD if I could.  I think my answer surprised a few people in that I wouldn’t choose to get rid of my OCD.  It has shaped who I am today; my fear of accidental harm has made me more concerned about other people than I ever had been before and I have discovered empathy.  I now feel strong enough to embrace my OCD but also live the life that I want to lead; confidently and in the knowledge that I hold it within myself not to let OCD rule my life.

All the best,

Louise