Mental health Netdoctor & Patient Info

The form of OCD you probably haven’t heard of

For some people with obsessive compulsive disorder, the compulsions are hidden, and the main symptom is distressing intrusive thoughts.

Obsessive compulsive disorder (OCD) is a common condition, affecting 1-2% of the population, and yet it is widely misunderstood. Unhelpful stereotypes abound, not least the idea that it is always associated with hand-washing or excessive tidiness. If you have ever heard anyone describe themselves, colloquially, as “so OCD” (meaning orderly or meticulous) you will be aware how deep these misconceptions run.

In actuality, OCD can take many forms, with some sufferers displaying no outward signs of compulsion at all. For those whose OCD is primarily obsessional, the popular image of the disorder is particularly far off the mark.

Faye, 28, has dealt with OCD since childhood. She says people often don’t believe she has the condition because her compulsions are covert.

“Many people are under the impression that OCD is only about overt compulsions, and so when you say you have OCD, they look at you and say ‘what do you have to do?’,” she explains. “They think because they haven’t seen your symptoms, you are making it up.”

‘Pure O’ is a misleading term

Faye, like many others with OCD, suffers from what is sometimes termed ‘Pure O’. This term – which is not a medical diagnosis – is intended to describe a form of OCD that involves obsessional thoughts, without the associated compulsions. However, many experts have advocated for the expression to be scrapped, as it masks the true nature of the disorder.

Olivia Bamber, spokesperson for the charity OCD Action, points out that all OCD follows the same format – obsessions (which consist of recurrent, unwanted intrusive thoughts), and compulsions (repetitive behaviours performed in response to an obsession, with the aim of reducing distress).

“Although someone with harmful intrusive thoughts may appear very different to someone with contamination issues, in both cases the intrusive thought comes first and then the mental or physical ritual comes second,” she says. “For people with this form of OCD, the compulsion might involve repeating certain positive words or mantras, avoiding situations or seeking reassurance. So the compulsive aspect might not be as obvious, but it’s still there.”

The symptoms are highly distressing

In Faye’s case, her obsessional thoughts started as early as 7 or 8 years old.

“I remember that I was obsessed with the number 8 and even numbers and I felt really uncomfortable with odd numbers. I would always be counting everything, and if it wasn’t in multiples of 8 then I would be extremely uncomfortable,” she says. “I thought that if I didn’t do this, then something bad would happen to a family member or friend and it would be all my fault. I played out these scenarios repeatedly in my head.’

“As time went on, it got to be debilitating because I couldn’t do anything without worrying that my actions would cause harm to other people. Even though on one side of my brain I knew that it couldn’t happen, the other part of my brain told me it wasn’t worth the risk of not doing the mental rituals, in case something happened and it was my fault.”

In Faye’s case, the intrusive thoughts mostly revolved around the fear of getting ill, and passing that illness onto other people. Other sufferers may experience frightening impulses or inappropriate mental images. While the specifics vary, the common denominator is that the thoughts defy the person’s values and cause them significant distress.

“These might be fears of harming loved ones or acting sexually inappropriately, or they might be religious or blasphemous thoughts,” says Bamber. “But the thoughts are always repetitive, they’re always distressing, they’re always unwanted, and they’re always the opposite of what that person actually wants.”

It can be treated with medication and therapy

Despite suffering intensely throughout her teens and 20s, Faye didn’t seek real help until she was 26. As she explains:

“I didn’t seek a diagnosis for ages because I didn’t believe that a doctor could do anything for me. I guess I was also ashamed and a bit too proud to admit I needed help. However, at the end of 2015, I reached rock bottom and went to a doctor in Germany, where I was living.’

“He prescribed me two varieties of antidepressant (escitalopram and mirtazapine) and suggested I try therapy. My friend recommended that I try her therapist in London, so we set up a session over Skype, and I have been seeing her ever since. This is the best I have felt in my entire life!”

Like other forms of OCD, this variant can be treated by a mixture of medication and cognitive behavioural therapy (CBT). The CBT is designed to help sufferers unravel the cycle of obsessions and compulsions, while the medication helps lessen the associated anxiety.

How to seek help

If you’re suffering from intrusive thoughts, your first port of call should always be your GP, who will either perform an assessment or refer you to a mental health professional. OCD Action has created an information card which can be taken along to aid the conversation.

“It can be difficult to talk about your intrusive thoughts,” points out Bamber. “What we would always say is that, while you should be as honest as you can, the GP doesn’t need to know the ins and outs of your thoughts. What they need to know is the kind of impact it’s having.”

The charity also has a helpline you can call for further information or support. Over a third of the calls it receives relate to intrusive thoughts, demonstrating that this form of OCD is as common as any other.

Faye believes more people should be open about their OCD, as they have nothing to be ashamed of.

“To anyone suffering, know that you are not alone,” she says. “The UK is a really good place to be if you are suffering from any mental health issues, as there is a lot of support available. I still think that we have a long way to go, but things are definitely moving in the right direction.”

This article appears on Netdoctor

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