We talk about OCD all the time. How often have you heard someone say something like, “Oh, I'm a bit OCD about keeping things tidy”, or “That's just my OCD!”? And yet, despite OCD being such a familiar term, I think there's still a surprising lack of understanding about what the condition actually involves. In fact, there's good reason to believe that many people living with OCD don't even realise they have it.
How common is OCD?
OCD is estimated to affect around 1–2% of the population, with UK estimates commonly placing the figure at approximately 1.2%. That's already a considerable number of people. In the UK alone, that's hundreds of thousands of individuals. However, many people experience OCD for years before receiving an appropriate diagnosis or treatment. So why might this be?
We have a very narrow understanding of OCD
I think one of the biggest problems is that our popular understanding of OCD tends to be limited to a handful of recognisable behaviours. Most people are familiar with contamination OCD, particularly excessive handwashing or fears of germs. Others might associate OCD with repeatedly checking things, or with needing everything to be neat, symmetrical, or perfectly organised. And while these can certainly be features of OCD, they represent only a small part of what the condition can involve. OCD can also involve intrusive thoughts and fears relating to:
Relationships, including doubts about whether we really love our partner.
Past events, including fears that we've done something wrong or behaved immorally.
Causing harm to ourselves or other people.
Our sexuality, identity or morality.
Religious beliefs and fears of doing something sinful.
Our health or the possibility of developing a serious illness.
People sometimes refer to these presentations as relationship OCD, real event OCD or harm OCD, although these are descriptions of common themes rather than separate diagnoses. What's more, compulsions aren't always obvious behaviours. They might involve repeatedly reviewing memories, analysing feelings, mentally checking our intentions or trying to work out whether an intrusive thought means something important. Because these compulsions happen entirely within our minds, they can be almost invisible to other people.
And if someone's understanding of OCD is limited to handwashing and checking doors, they may never recognise their own experiences as OCD.
The problem with trivialising OCD
There's something rather contradictory about the way we talk about OCD. On the one hand, people use it casually in everyday conversation. On the other, many people living with the condition feel too embarrassed or ashamed to talk about their symptoms. OCD is sometimes portrayed as a quirky personality trait, perhaps associated with being particularly tidy, organised or perfectionistic. But there's an enormous difference between preferring things to be organised and feeling compelled to perform repetitive behaviours because of overwhelming anxiety, doubt or a perceived responsibility to prevent harm.
There's something particularly ironic about this. People who casually describe themselves as having OCD because they like things to be tidy or organised may not actually be experiencing OCD at all. Meanwhile, someone living with debilitating OCD might not even realise they have the condition. And while some people confidently announce their supposed OCD tendencies, others who genuinely struggle with OCD may go to extraordinary lengths to conceal their symptoms, particularly when their intrusive thoughts involve subjects they find shameful or frightening.
Of course, we can't know whether somebody has OCD simply from an offhand remark. But I do wonder whether this casual use of the term can be quite alienating for people who are genuinely struggling. Imagine spending hours tormented by intrusive thoughts about harming somebody you love, only to hear someone describe their preference for an organised desk as “being OCD”. Not only does this trivialise a potentially debilitating condition, but it reinforces a very narrow understanding of what OCD looks like. That misunderstanding might be one reason so many people fail to recognise their own symptoms.
Why might OCD go undiagnosed?
There are several possible reasons. People don't recognise their own symptoms. Someone experiencing relationship OCD might assume they're simply having relationship difficulties. Someone repeatedly analysing a past mistake might believe they're experiencing guilt or ordinary worry. Without understanding the role of intrusive thoughts and mental compulsions, they may never consider OCD as a possible explanation.
People feel ashamed of their thoughts.
Some OCD themes involve deeply distressing or taboo intrusive experiences. People may worry that disclosing these thoughts will lead others to judge them, misunderstand their intentions or view them as dangerous. As a result, they may conceal the very symptoms that would help a clinician recognise OCD.
OCD can be mistaken for other conditions.
There can be considerable overlap between OCD and other anxiety-related difficulties, particularly generalised anxiety disorder and health anxiety. Someone may initially present with excessive worry, anxiety or depression, without the underlying obsessive-compulsive processes being immediately apparent. Although GPs and other healthcare professionals play an important role in identifying OCD, recognising less familiar presentations can be challenging, particularly when someone isn't aware of their own compulsions or doesn't feel comfortable disclosing them. This is one reason why careful assessment and asking about both behavioural and mental compulsions is so important.
What about children and young people?
I think this is another particularly important consideration. Children don't necessarily have the language or understanding to describe what they're experiencing. A child might repeatedly ask their parents whether something bad is going to happen, insist that certain routines are followed or become extremely distressed when things don't feel right. Parents may understandably interpret these behaviours as ordinary anxiety, a need for reassurance or simply part of their child's personality. And because parents naturally want to help their children feel better, they may begin participating in compulsions without realising it. For example, they might repeatedly answer the same questions, help their child avoid certain situations or follow increasingly elaborate routines to prevent distress. This is sometimes called family accommodation. Although these responses are usually motivated by kindness and concern, they can inadvertently reinforce the OCD cycle. Recognising OCD earlier can help families understand what's happening and access appropriate support.
Why does early recognition matter?
Perhaps the most significant consequence of OCD going unrecognised is that people may spend years struggling without receiving effective treatment. OCD doesn't necessarily worsen in every person who goes untreated, but it can become increasingly established and have a substantial impact on someone's life. Compulsions and avoidance may begin to take up more time, while the situations someone feels able to manage gradually become more limited. The consequences can extend beyond the individual, affecting relationships, family life, education and employment. And all the while, effective treatments are available.
Cognitive behavioural therapy (CBT), particularly exposure and response prevention (ERP), can help people change the patterns that maintain OCD and regain control over their lives. But people need to recognise the problem, or have someone else recognise it, before they can access appropriate help.
So, is OCD underdiagnosed?
I think there's compelling evidence that OCD is frequently under-recognised and that many people experience substantial delays before receiving an appropriate diagnosis and treatment. It's also clear that our public understanding of OCD remains rather limited. Improving awareness means going beyond the familiar stereotypes of handwashing, checking and perfectionism. It means recognising the enormous variety of intrusive experiences and compulsions that OCD can involve, including those that are entirely invisible to other people. And it means helping individuals, families and healthcare professionals recognise OCD earlier. Because the sooner someone understands what they're experiencing, the sooner they can begin accessing the support and treatment that might make an enormous difference to their life.
Perhaps the greatest irony is that we're so comfortable talking about OCD when we mean something else, yet so often fail to recognise it when it's actually there.