In 2018 I was very kindly allowed to advertise my doctorate research on this subreddit, which explored the impact of obsessive-compulsive disorder (OCD) on women’s lived experience of sex and sexuality. I wanted to share a summary (please see below) now that it’s complete and to say a big thank you to participants and also the moderators for allowing me to advertise my research.
Study Overview:
In this study I explored women’s lived experiences of sex and sexuality with obsessive-compulsive disorder (OCD), and how the impact of OCD on sexual identity and practices was managed, and also how seeking support was experienced.
Background to the study:
I could find virtually no research, and no research that captured women’s experiences in their own words, that explored experiences of sex and sexuality for women with obsessive-compulsive disorder (OCD). There was, however, a small number of (mostly statistical) studies that indicated women with OCD were likely to experience sexual problems. Without an evidence base around women’s experiences in this area to inform interventions, it was difficult to know how therapy could best help women with OCD.
Who took part?
One hundred and thirty-four women answered a series of questions online in their own words. One Skype interview was also undertaken. Overall, the study was predominantly completed by women living in the US in their mid-twenties, who identified as white, cis-gendered, middle class, able-bodied, and who were in a relationship and full-time employment. The majority of participants used a variety of labels to describe their sexualities, with less than half of participants identifying as heterosexual. The average age of OCD onset was 10. With regards to the use of medication, the majority of women taking part had used it to manage their OCD symptoms, and of those women, the majority reported finding it useful. However, of the women who took medication, a large number felt it had negatively impacted their interest in sex, ability to orgasm, and it had increased the time it took for them to orgasm.
How were the data analysed?
The findings were reported under four headings which captured the key elements of women’s experiences: “OCD as fake news” – difficulties distinguishing between an OCD intrusive sexual thought and a ‘real’ sexual thought; “OCD as sex killjoy” – avoiding sex to avoid intrusive thoughts; “What is normal sex?” – how society’s stereotypes of sex interact and exacerbate women’s experiences of OCD, sex and sexuality; and “To share or not to share?” – the dilemma of talking about OCD and sex/sexuality in therapy.
What did the study find?
Overall, it was common to feel a deep sense of shame around intrusive sexual thoughts and compulsions, which resulted in feelings of isolation due to avoiding sex and, in some cases, partner relationships. It was also common not to share OCD experiences with partners or therapists. Compulsions resulted in some women finding themselves in risky situations in the hope of proving that their OCD intrusive thoughts were wrong. At times sex was also engaged in for the sake of partners even when it was a distressing experience due to intrusive thoughts. Sex was also engaged in as a way to manage intrusive thoughts and to stop something ‘bad’ from happening. The lack of certainty around sexuality (sexual orientation) caused a great deal of distress. There was a strong need for acceptance from therapists, rather than judgement about sexuality and intrusive OCD thoughts, as a high level of negative self-judgment was already experienced.
What needs to happen in the future?
The study identified that therapists required further training around OCD and sex/sexuality to empower women with OCD to have enthusiastically consensual and pleasurable sex. One of the aims of publishing my research in an academic journal is to inform a better understanding of sex and sexuality for women with OCD among therapists. Also, more information is needed more widely in society to ensure that women do not feel they are the only one experiencing distress resulting from OCD related to sex and sexuality, hopefully cultivating a sense that you are not alone.
Thank You!
Lastly, I would like to thank anybody reading this who took part in my study, because without you this research would not have been possible. I also want to thank you for being extremely kind and generous by sharing so much with me and for trusting me with the intimate details of your OCD. I have felt very privileged to read your stories and comforted by the fact that we are not alone in our experiences.
You can read the full study here (https://uwe-repository.worktribe.com/output/1906784/one-dead-bedroom-exploring-the-impact-of-obsessive-compulsive-disorder-ocd-on-womens-lived-experience-of-sex-and-sexuality)