Living with obsessive compulsive disorder (OCD) | Blog

Living with obsessive compulsive disorder (OCD)

Sheila Evenden has taken part in mental health research with CPFT, the University of Cambridge and the NIHR Clinical Research Network East of England, among other NHS and research partners.
In this blog, she recalls her path into research and how it has helped her live with obsessive compulsive disorder (OCD) and share her experiences.

Photo: Sheila (centre) with the OCD researchers at the University of Cambridge.

My name is Sheila Evenden and I am 66 years old. I have had OCD since early childhood, although in those days – the 1960s – it wasn’t as widely recognised as it is today, but I always felt different from other children. I was formally diagnosed with clinical depression and OCD in 1998 when I was 42.

Labelled as a ‘problem child’, the medical professionals I was taken to see absolutely terrified me – not helped by the fact that I witnessed my late father suffer what was called a nervous breakdown in 1964 when I was eight years old. He had ECT (electroconvulsive therapy) and made a full recovery – but I was always petrified that the same thing would happen to me.

Fast forward to when – having seen numerous professionals over the years and trying every therapy going, in 2010 I had my first consultation with Professor Naomi Fineberg and felt at ease with her immediately. For the first time in many years, I felt safe, and she understood the thoughts I had been tormented by, on a daily basis, for as long as I could remember.

I soon learned about her work in the field of research and became a willing participant in every study I could, which was an epiphany for me. I got to meet experts who were actually interested in me and how my illness affects me. Twelve years on, and I am still participating in studies and the benefits have been manifold as follows:

1. You get to see real experts in their field and have more time to spend with them than you would during a normal consultation.
2. The people you meet are genuinely interested in you and how your condition affects you as a person.
3. You are under no pressure or obligation to do or say anything you don’t feel comfortable with, and this does not have any impact on your own treatment regimen.
4. Finally, from my own perspective, being involved in research has given me a sense of purpose in life. I am contributing to society and the memories of my experiences with mental health services back in the past are now being used for the good of others.

• Watch this film to learn more about Sheila’s experience of taking part in a recent OCD study with CPFT and the University of Cambridge:
  
   
• To volunteer for mental health research at CPFT, please contact the Windsor Research Unit on 01223 219531 wru@cpft.nhs.uk
• If you would like to help shape research studies at CPFT with your lived experience, please contact our User and Carer Research and Development Manager Iliana Rokkou