Many individuals with OCD suffer for years with significantly diminished quality of life before seeking treatment, if they seek help at all, likely due to a complex interplay of powerful factors influencing their decision to pursue support. To better understand these factors, it is crucial to engage people with OCD directly in comprehensive discussions about their experiences with help-seeking.
a person with an open laptop over their head, head on a desk, holding small help sign
Key Points
Rationale
OCD is a severe mental disorder that causes significant impairment, yet previous studies have found substantial delays between the onset of OCD and seeking treatment, ranging from an average of 3.28 years in Spain (Belloch et al., 2009) to 17 years in the US (Pinto et al., 2006).
While some research using short questionnaires has examined reasons for these delays, in-depth qualitative studies are lacking (Robinson et al., 2017).
Method
Sample
17 people with OCD participated – 11 women and 6 men aged 21-57. 15 were White British. Education levels varied from GCSEs to postgraduate degrees. 8 participants were working, 2 were students, and 7 were not working.
Age of OCD onset ranged from 7-48 years old. Delays in seeking treatment after OCD significantly interfered with life ranged from a few weeks to 20 years (mean 7 years).
Theme 1: Barriers to Treatment
Five main barriers to seeking help were identified:
1. Stigma
The study identifiedstigma as a major barrier to seeking help for OCD. Participants feared reactions from various sources, including family, friends, colleagues, employers, and healthcare providers.
Many went to great lengths to hide their OCD, with some keeping it secret from close family members and partners for years.
Reasons for not wanting to tell others included embarrassment, shame, and fear of having a mental health diagnosis on their medical record, which they worried could lead to discrimination.
Some participants also wanted to shield their families from the knowledge of their mental illness, while others reported that their families were reluctant to acknowledge the participant had a disorder, possibly due to feelings of failure or concern about the severity of the problem.
2. Internal/cognitive factors
The study identified several internal/cognitive factors that caused people to delay seeking help for OCD. These factors were related to people’s personal appraisals of their problem or their internal state. Six subthemes emerged:
These internal/cognitive factors highlight the complex thought processes and emotions that can hinder individuals with OCD from pursuing treatment, even when the disorder is causing substantial distress and impairment.
3. Lack of knowledge about OCD– not knowing what the problem was
A significant barrier to seeking help for OCD was a lack of knowledge or information about the condition, both among participants themselves and their families. This theme was divided into two subthemes:
4. Concerns about treatment and whether GPs would understand
Participants identified several barriers related to their GP or the anticipated treatment that delayed their help-seeking. These barriers were categorized into three subthemes:
5. Fear of being “criminalized”
For three participants, fear of criminalization was a significant barrier to seeking help for their OCD. These individuals experienced intrusive thoughts related to harming or sexually abusing children.
They feared that disclosing these thoughts to professionals would lead to severe consequences, such as being involuntarily committed to a psychiatric hospital, imprisoned, or having their children taken away from them.
One participant, whose intrusive thoughts involved sexually abusing children, was afraid that the authorities would mistakenly believe they were a pedophile.
The intense fear of being perceived as a “monster” and facing serious legal repercussions prevented these participants from revealing their symptoms to anyone, greatly delaying their help-seeking efforts.
Theme 2: Enabling Treatment
Five main themes were identified as enablers to seeking help:
1. Being supported or urged to seek treatment
Being supported or encouraged to seek treatment was a significant enabling factor for participants in this study.
This support came from various sources, including partners, family members, friends, and online OCD support communities.
‘I can remember writing on the forums on the websites, saying, you know, I’m going to the GPand … everyone thought, ‘Oh, well done’. You know. ‘You’ll be fine’. ‘Don’t be scared’. Andgetting loads of replies back.’
2. Crisis / crunch point
Eight participants said that it was reaching a crisis / crunch point that finally pushed themto seek treatment.
‘I got to another stage where, um, the head wasn’t coping again, and I was getting extremelydepressed. The only reason I went to the doctor in the first place was I left my [partner] a note… and I’d been drinking one night, and left [her/him] a note, ‘I want to die’. I couldn’t cope.And I thought I wanted to take an overdose. So my [partner] took me to see my doctor. Whichwas a good thing.’
3. Media / information
Six participants discovered they had OCD through various media sources, including television programs, newspaper articles, and leaflets, none of which were associated with the National Health Service.
Although these participants had not sought help for their OCD before learning about the condition through media, they all subsequently sought treatment, either quickly or after several years.
4. Confidence in GP / mental health professionals
Three participants expressed having confidence that their GP or mental health professionals would be able to help them with their OCD. This confidence served as an enabling factor in their decision to seek treatment.
One participant, who had delayed seeking help for over three years, intentionally selected a doctor who they remembered as being a good listener. This decision proved beneficial, as the doctor was knowledgeable about OCD and its treatments, and responded with kindness when the participant disclosed their condition.
Another participant’s confidence in mental health professionals stemmed from a family member’s positive experience with mental health treatment.
5. Driven to seek treatment because of the nature of the thoughts
Three participants with intrusive thoughts about harming children were driven to seek treatment due to their misinterpretation of these thoughts as indicating a real risk of harm.
Despite lengthy delays in two cases, they sought help to prevent the feared harm.
Strengths
Limitations
These limitations mean caution is warranted in generalizing the findings to all people with OCD. The sample may not represent the full diversity of people with OCD.
Clinical Implications
The formidable barriers identified help explain the long delays in seeking treatment for OCD.
These findings highlight the importance of increasing public awareness and understanding of OCD and its symptoms, as this knowledge gap can significantly hinder individuals and their families from recognizing the need for professional help.
The results underscore the importance of individuals having trust and confidence in their healthcare providers when seeking help for OCD.
A healthcare professional’s knowledge, empathy, and ability to create a safe environment can be crucial factors in facilitating successful help-seeking experiences.
References
Primary reference
Other references
Belloch, A., del Valle, G., Morillo, C., Carrió, C., & Cabedo, E. (2009). To seek advice or not to seek advice about the problem: The help-seeking dilemma for obsessive-compulsive disorder. Social Psychiatry and Psychiatric Epidemiology, 44(4), 257–264.
Pinto, A., Mancebo, M. C., Eisen, J. L., Pagano, M. E., & Rasmussen, S. A. (2006). The Brown Longitudinal Obsessive Compulsive Study: Clinical features and symptoms of the sample at intake. Journal of Clinical Psychiatry, 67(5), 703–711.
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Olivia Guy-Evans, MSc
BSc (Hons) Psychology, MSc Psychology of Education
Olivia Guy-Evans is a writer and associate editor for Simply Psychology. She has previously worked in healthcare and educational sectors.
Saul McLeod, PhD
BSc (Hons) Psychology, MRes, PhD, University of Manchester
Saul McLeod, PhD., is a qualified psychology teacher with over 18 years of experience in further and higher education. He has been published in peer-reviewed journals, including the Journal of Clinical Psychology.
