Mutual support

This week, I'm talking to Alison Islin, an OCD sufferer who has operated a support group in North London for more than 20 years.

Please tell us a little about your own experience of OCD. How badly affected were you, and how are you now?

I've had OCD since I was seven. If I heard anything bad on the news, or if something bad happened, then I would deliberately do nothing nice for the rest of the day: I wouldn't put on make-up and I wouldn't watch any programmes or read any books that I found interesting. I would literally 'will' the day away and wrote off whole days in that way.

If I broke a glass or a plate, I had to drive out of my area and throw it into a street bin before midnight, so that it didn't interfere with the next day. If I broke something close to midnight, I might have to leave home as late as 11.45pm to do this.

I'm also a skin-picker and pull out my eye-brows, although I finally gave in to the torment this caused me by having them tattooed.

I used to rip pages out of books to stop me from repeatedly re-reading them - as many as twenty or more times - then buy another copy of any damaged books to get the missing pages back! 

I now lead a full life and have just celebrated my 30th wedding anniversary. My husband and I have two adult sons and two lovely Westie dogs. I'm involved with Barnet Voice for Mental Health (BVMH) - the Barnet service user group - on the acute wards, attend acute clinical governance meetings, and sit on committees, as well as interview panels for consultants, nursing staff, social workers etc. Recently I joined the Board of Trustees for MIND in Barnet. 

I have co-written a book about my life with OCD, called Get Out of My Head, for which Dr David Veale (co-author of Overcoming Obsessive Compulsive Disorder) wrote the foreward, and was interviewed about this on ITV's This Morning programme. 

Above all, my OCD is now manageable and in no way interferes with my everyday life. If I'm feeling stressed, then I do ritualise, but I know how to recognise what's happening and prevent the situation becoming a downward spiral.

What prompted you to set up this support group?

After I'd spent six weeks at The Priory Hospital, in North London, some 23 years ago, Dr Veale suggested I start a group there. It's now the longest running OCD support group in the UK. This, in turn, led me to work as a volunteer for BVMH and, 18 years later, I'm still there.

What benefit(s) do users derive from attending a support group?

The fundamental benefit to service users is that they get the support and empathy that is perhaps lacking from family, friends and colleagues. They sometimes arrive frightened and confused, but a positive transformation slowly takes place, which is a privilege to see. 

I do a lot of sign-posting and we talk about evidence-based treatments, such as medication, Cognitive Behaviour Therapy (CBT) and Exposure and Response Prevention (ERP). It's also an opportunity for members to consult a large variety of reference books and I aim to start a library service for the group soon. 

I give out BVMH information to members who live in the London Borough of Barnet, so that they can come to my generic support group, which meets weekly, and to the drop-in service, Space 2B, which runs twice a week.

Some people might be nervous of talking about their problems in front of strangers - what would you say to reassure them?

Image courtesy of Idea go/FreeDigitalPhotos.net

I have ground rules which I outline at the start of each session. I then go around the group inviting everyone to introduce themselves and, if they want to, to say a few words about why they are there. We then move on to regular members talking about how their past month has been. 

I always stress that there is absolutely no pressure to talk and that by listening and watching others interact, people can learn a lot, too. I invite new members to talk a couple of times and let them know that I will also check in with them at the end. This enables them to take ownership of the decision as to whether or not they talk.

In what way(s) do you think it helps you, as a facilitator, to have had OCD yourself?

It's invaluable for a facilitator of any support group to have lived experience, as this helps to develop much more empathy and understanding. This applies to all kinds of groups, eg for cancer, diabetes etc. When you have the experience of travelling a similar path, then your understanding is far more than just theoretical.

Equally, does this ever cause you any difficulties in this role?

No. I am there as a facilitator, full stop. There have to be boundaries and I make sure that the only time I 'share' is if it could be of benefit to the member who happens to be talking at the time. At no time would I ever off-load. 

What has been your most rewarding experience as a facilitator?

Having so many of the same faces attend for several years, disappear, and then come and go again. Watching people grow in their confidence and self-belief. Also sign-posting clients to OCD Action, The Maudsley Hospital etc, and seeing them heal once they receive the correct treatment.

What changes - positive or negative - have you seen with regard to awareness of OCD since you were first diagnosed? Likewise, with regard to medical treatment for the condition?

Having been present at OCD Action's very first conference, I've watched the professionalism within the charity grow and grow, and I take great pride from seeing the benefit this provides to others.

I have welcomed the addition of Mindfulness to CBT and also the advances in ERP therapy. 

Personally, I have benefited from medication that has all but lifted the depression element of my OCD, which is wonderful, and my quarterly sessions with Rob Willson, a clinical psychologist, have been inspirational too.

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Thank you to Alison for taking the time to share her experiences. Her book, which is co-authored with Judy Karbritz, of Poetry Press, is available from Judy at jmkarbritz@yahoo.com. 

Details of OCD support groups across the UK are available here.