What’s it like to have OCD?

Research with people who have obsessive-compulsive disorder (OCD) is often impersonal. Participants' thoughts, feelings and behaviours are reduced to ticked boxes on a questionnaire. There's a risk the real story of what it's like to have OCD doesn't get told. Helen Murphy and Ramesh Perera-Delcourt have taken a different approach. They interviewed 9 people (one woman) with OCD, face-to-face, for about an hour each, to hear how these people felt about their condition and about any treatment they'd received.

The researchers transcribed the interviews and highlighted key themes. Regarding the experience of OCD, the main themes were "wanting to be normal and fit in", "failing at life", and "loving and hating OCD."

Participants found comfort in meeting other OCD support-group members. They also spoke of caring too much about what other people are thinking of them. OCD can interfere with education, relationships and careers and frequently, participants compared their own stalled life trajectories against what they perceived as the societal norm. "I feel like I've got to make up for lost time in a way," one man said. There were in-depth descriptions of the painful situations created by OCD – one man who house-shared had to scrub the entire bathroom with powerful cleaning product for an hour every day before he could use it. But at the same time, there was a fear of losing the crutch that the condition provides. "I wish I could do that [stop checking], I wish I could stop," another man said, adding: "Well, not totally."

In relation to therapy, the main themes were "wanting therapy", "finding the roots", and "a better self". Participants spoke of the relief that came from having their problems recognised and listened to. The importance of rapport between participants and their therapists was mentioned repeatedly, consistent with what's known about the importance of the therapeutic relationship. Although aspects of CBT were found useful by many ("it helped me focus on what is important to me in life," said one), others commented on the lack of interest in the roots of the condition. "There's been a 'stuff the past' sort of thing but it's like cutting a plant above the soil – the roots are still there," said another participant. CBT helped participants with self-esteem issues. "… reanalysing things … has made me realise that I wasn't to blame for all kinds of things," one person said.

Murphy and Perera-Delcourt concluded that examining people's narratives can help to "understand the lived experience and lessen public and self stigma". Given the way their participants emphasised the value of rapport in therapy, the researchers questioned claims that computerised CBT is a valid substitute. They also highlighted the apparent importance to people with OCD of understanding its origins. "Developmental issues in the maintenance of the disorder have been generally neglected and our findings suggest that understanding and talking through the origins of OCD may lessen treatment resistance," they said.

Further reading

Murphy, H. and Perera-Delcourt, R. (2012). 'Learning to live with OCD is a little mantra I often repeat': Understanding the lived experience of obsessive-compulsive disorder (OCD) in the contemporary therapeutic context. Psychology and Psychotherapy: Theory, Research and Practice DOI: 10.1111/j.2044-8341.2012.02076.x