Have you ever had a thought that was hard to ignore? Perhaps one that tells you to eat an extra slice of pizza when you’re already full, or to tell your boss what you really thought about their comments at the morning meeting.

But what if these thoughts were much more distressing? Perhaps they are about losing your job or your home, becoming seriously unwell or accidently causing harm to someone you love. These thoughts could pop into your head several times a day — when you’re brushing your teeth, during a work meeting, while you’re on the school run. For many of the approximately 500,000 Australians with obsessive compulsive disorder (OCD), this is their reality.

While many people may think of OCD as simply a trait of being a “neat freak”, the illness is much more complex and, for many, a debilitating condition. And it’s more common than you might think.

According to OCD Bounce — an Australian research collective focused on obsessive compulsive and related disorders — in any given year, about one in every 50 Australians lives with OCD. Globally, it’s estimated that around three per cent of people will experience OCD at some point in their lives.

The disorder can cause people’s relationships to break down, their finances to suffer, prevent them from engaging in education or work and, in extreme instances, perhaps even stop them from leaving the house for weeks, months or even years.

Obsessions and compulsions
When you picture someone with OCD, you might think of a person who is excessive with handwashing or who keeps their wardrobe neatly colour-coordinated. But these stereotypes are far from the full picture of what OCD really is.

“You can think about OCD as having two main parts,” says Adrian Allen, a Sydney-based clinical psychologist and researcher, specialising in treating OCD. “There’s obsessions and there’s compulsions.”

The internal thoughts are the obsessions component. “[Obsessions] might be a thought or it could be an image that comes to mind. It could be an urge, and people misinterpret these thoughts or intrusive experiences as threatening in some way. It’s what then causes them to feel anxious and fixate on those ideas, which then prompts the need, or the compulsion, which is typically some kind of behavioural response or a mental ritual that people will use to try to reduce the anxiety about the obsession.”

The obsession is the “intrusive thought” or worry. The compulsion is the action or behaviour — whether a mental or physical ritual — that the person will do in response to the thought in order to neutralise it.

Research tells us that most people have had intrusive thoughts at some point. But for people with OCD, these thoughts consume them. They are the fuel that ignites the compulsions and keeps them stuck in a cycle that can be hard to break.

Melissa Mulcahy is a Perth-based clinical psychologist who primarily sees clients who experience OCD. She’s also a member of the International OCD Foundation (IOCDF). “Over time, what people find is they become more and more dependent on the compulsions to manage the distress,” says Mulcahy. “And because an anxious mind has an endless capacity to produce more questions and more doubts, it further fuels the cycle.”

Types of OCD
Several of the most common categories that symptoms fall into are:

• Contamination and health — obsessions about coming into contact with dirt, germs or foreign substances. This might result in the person washing excessively, cleaning their home for hours, or taking steps to avoid being exposed to germs. Perhaps not drinking from communal mugs in the work kitchen or taking a long journey home to avoid using public restrooms.
• Checking and doubting — doubting their own memories or capabilities and fearing that their “careless” actions could cause danger or catastrophe. For example, “If I didn’t turn the iron off properly, my house will burn down,” or “If I make a typo in this email, I’ll get fired.” This can spur the need to continuously check things, perhaps in a certain sequence or a certain number of times, until they feel “right”.
• Repetition — people may feel they need to repeat certain words or phrases, either aloud or in their head. They may feel the urge to repeat certain actions, such as walking through a door, turning off a light switch or opening and closing the fridge.
• Hoarding and collecting — some people with OCD may hold strong emotional attachments to their possessions and find it difficult to discard useless or worn-out items. It’s not just refusing to let go of a pair of jeans that no longer fit. OCD-related hoarding (classed as separate to “hoarding disorder”) is holding onto anything, from old magazines, junk mail or worn-out clothes and shoes, in response to an obsessive thought and anxiety.
• Ordering and symmetry — those who feel anxiety when things aren’t deemed to be balanced, organised or in alignment. They may feel the need to arrange tin cans so that their labels all face the same way or feel the urge to eat food off a plate in a specific order.
• Counting — the persistent urge to count actions, people or items. That might be counting the steps on a staircase or counting how many times they blink. Some numbers may be favoured or avoided. For example, a person may have an avoidance of odd numbers, as even numbers “feel right” or balanced to them.

The spectrum of OCD
Like other mental health disorders, OCD is not a one-size fits all. Everyone experiences it differently. For example, in 2005, The National Institute for Health and Clinical Excellence (NICE) published their guidelines for the treatment of OCD and BDD (body dysmorphic disorder). Within this, they published data on the various types of compulsions that people with OCD reported. Around only two per cent reported counting rituals as a compulsion, around six per cent reported ordering or symmetry rituals and almost 29 per cent reported checking rituals.

Where someone sits on the scale of severity will determine how the disorder impacts their life. Adrian Allen explains, “If I take the extreme example of those people that have a real preference for order and neatness, they might spend a lot of time folding clothes in a certain way and become very concerned if that [routine] is disturbed.

“If people have difficulty with the doubting and checking form of OCD, they might spend a lot of time making sure that they have got their wallet and phone on them. It could include very specific ways of checking; it might include a minimum number of checks in order to get out the door. Often what happens if something disrupts that process is they’ve then got to start from the beginning.”

Although people without the disorder may experience symptoms that appear similar to OCD, such as worrying about whether they locked the front door or double checking that they have their wallet, the difference is how much distress it brings, and how much it impacts their life. Allen explains, “If people say they’ve got a preference or need to be neat and tidy, but they don’t have to spend a lot of time doing it, and it doesn’t really cause significant anxiety, they might just do a quick check that they’ve got keys and phone on them. That’s not OCD, which is much more debilitating than that.”

For those with OCD — particularly on the more severe end — this sense of needing to alleviate the anxiety by doing things in a certain way can have a knock-on effect on many other elements of a person’s life, including relationships, finances, career and physical health.

“If they find it too time consuming to get out the door, sometimes people will just stop going out, so it does affect other areas of life,” says Allen, who explains that one example might be someone who develops intrusive thoughts about driving, becoming fearful they may cause an accident or hit a pedestrian. Their constant checking and compulsions to neutralise these thoughts could result in them giving up driving altogether.

“It affects how or where they can get to work. It affects where they can get to for their kids or their partner, it affects where they can go shopping, or what they can do in the case of an emergency. Often these things that most of us don’t even think twice about, become — in its worst case — inaccessible to people.”

Myths about OCD
OCD is a commonly misunderstood condition, and myths about it are rife. These myths often lead to the person feeling stigmatised and isolated. Some of the most common myths are:

• People with OCD are just uptight or neurotic.
• It’s enjoyable or advantageous to have — far from being a “superpower” or positive trait, the condition can be exhausting and debilitating.
• People with OCD wash their hands all the time — only around 26 per cent of people with OCD experience cleaning or washing rituals as a compulsion, according to NICE.
• Those with OCD are “crazy” — OCD is a mental health condition in the same way that an eating disorder or depression are. None of these conditions make the person “crazy”.
• It’s untreatable — treatments are available and around 70 per cent per cent of people benefit from first-line treatment.

Are you feeling “a bit OCD” today?
When asked what the stereotype is of someone with OCD, you might think of someone who isobsessively neat and organised. You might have even heard — or maybe even used — the phrase, “He’s a little OCD” in reference to someone who has alphabetised their bookshelves or who keeps their desk immaculately neat.

“Some people might, for example, think of the character of Monica Geller on Friends, who really likes things to be clean and organised and has a real sense of satisfaction when things are kind of ‘right’ in the environment,” says Mulcahy. “That really is very different to what we see in OCD, where it’s driven by these distress-provoking intrusive thoughts and sensations. And [that causes] the compulsions, the ways that somebody tries to eliminate or reduce that anxiety and distress, and there’s no sense of  pleasure, achievement or satisfaction associated with those compulsions.”

It might be tempting to refer to a Monica in your own life as being “very OCD”. However, if you want to be a better ally to people who really experience OCD, be more mindful of the language you use and avoid using the term “OCD” as an adjective or personality trait. For those living with the condition, using the term out of context can be ostracising, stigmatising and can trivialise the seriousness of their illness.

Mulcahy says, “In the same way that we know that it’s not helpful to be joking around about an eating disorder or making light of depression or of somebody’s experience of schizophrenia, I think we really need to have the same approach [about language] with OCD.”

Treatment options
One of the most common treatments for OCD is exposure and response prevention (ERP), which is a form of cognitive behavioural therapy (CBT). Selective serotonin reuptake inhibitors (SSRIs), a form of antidepressant that can help to alter the balance of brain chemicals, are also sometimes prescribed either as an alternative or alongside ERP.

If one or both are used, they must be administered by a trained professional, such as a psychologist or psychiatrist. According to the International OCD Foundation, around 70 per cent of people will benefit from either ERP or medication for their OCD.

Allen has worked closely with OCD patients on ERP. The treatment is designed to gradually expose the patient to their fears, while withholding from compulsions. Using the example of someone with intrusive thoughts around driving, Allen explains how ERP works. “We create what’s called an ‘exposure step
ladder,’” he says. “This is a list of situations going from the least up to the most anxiety-provoking.”

The person may have fears about knocking over a pedestrian with their car, resulting in “checking” rituals, perhaps driving past the same spot over and over, or checking the rear-view mirrors an excessive number of times to ensure they haven’t caused an accident.

“It might [start by] driving around the block, continuing to check the rear-view mirror and driving very slowly. Do that repeatedly until you get more comfortable and then gradually drop one of the checks,” says Allen. “Then start driving into situations where the anxiety goes up a little more and do that repeatedly to get more comfortable doing that and then you’ve built [the exposure] up.”

Comorbid disorders
Living with OCD doesn’t always mean just living with OCD. Often, it means juggling other conditions or disorders alongside it.

According to research published in the journal Comprehensive Psychiatry, 90 per cent of OCD patients also suffer from a comorbid disorder (or comorbidity), which is when one disorder occurs alongside another. For example, a person may experience OCD alongside generalised anxiety disorder or depression.

“Research tells us that having one mental illness leaves you vulnerable to developing another mental illness,” explains Carly Dober, a director of the Australian Association of Psychologists Incorporated and a clinical psychologist who works with many OCD clients.

“Many people who have OCD have a comorbid condition that adds another level of challenge or complexity to their treatment or recovery,” says Dober. “The most common disorders that someone with OCD might have are anxiety and depression, but others include neurodevelopmental conditions like ADHD, body dysmorphic disorder, autism, eating disorders and PTSD.”

According to Dober, things that put someone with OCD at a higher risk of comorbidity could be a stressful life event, physical abuse, trauma or having a genetic predisposition.

Anxiety vs OCD
Although OCD was once classed as an anxiety disorder, it’s now categorised under obsessive compulsive and related disorders, which also includes body dysmorphic disorder, compulsive hair pulling and skin picking disorder. However, generalised anxiety disorder (GAD) and OCD often occur alongside one another.

“OCD and anxiety are very separate mental health conditions with distinct symptoms. However, a person can have both OCD and anxiety at the same time,” explains Dober. “Stress and anxiety can also cause OCD symptoms to worsen significantly, so there is a high overlap.”

While those with GAD may engage in some “safety behaviours” — such as constantly seeking reassurance — it doesn’t have the element of intrusive thoughts or compulsions in the same way that OCD does.

In the two most recent national surveys on mental health and wellbeing, the first being in 2007 and the most recent in 2020–2022, there has been an increase in anxiety-related disorders and an increase of about one per cent for OCD specifically.

Allen says, “We don’t know exactly know why there is a very slight increase, but actually every one-point jump is a significant number of people in the population. It’d be hard to speculate [on the reason for the increase] but, in general, it can take a really long time for people who have OCD to actually get the diagnosis.”

Research echoes this. According to OCD Bounce, it can take an average of nine years for a correct OCD diagnosis and about four months to get any form of help.

First steps towards help
If you are concerned that you or someone close to you may be experiencing OCD, there are things you can do to explore this and seek help if needed.
Seek feedback — Ask a trusted person whether they have noticed unusual behaviours in you, they may have noticed something you haven’t. “Get some feedback from people around you, like friends, family members or your partner,” suggests Dober. “[Ask them], ‘Would you say, I’m an anxious person?’ ‘Have you noticed anything that strikes you as a bit different or a bit strange at times?’”
Do research — Seek out research from reputable sources to broaden your understanding of OCD and how to talk about it openly. Good starting points are the International OCD Foundation or OCD UK.
Speak to your GP — Tell them your concerns and ask them to refer you to a psychologist who is trained in treating OCD.
Always remember you’re not alone — OCD may feel lonely, but seeking help and support from others who have experienced it can help you recognise that there is nothing to be ashamed of.

Self-care for OCD
For those who have received a diagnosis, living with OCD can be tough, but there are ways to manage it. Alongside guidance and treatment from an OCD-trained psychologist, there are simple self-care and mindfulness techniques that people experiencing OCD can use to stay a little more grounded and to help prevent the mind wandering to distressing or unhelpful thoughts.

One technique that Mulcahy suggests is to focus on a simple, short task, such as brushing your teeth or washing the dishes. Focus with your full attention and mindfully come back to the task as soon as you notice your attention has wandered to something off-task. “With practice, people can learn to be more flexible with their attention, notice when they are caught up in ruminating on their OCD thoughts and bring their mind back to the present instead.

“Another mindfulness strategy involves learning to watch thoughts in a detached way without getting caught up in them. [For example] imagining sitting by the side of the road and watching our thoughts pass by as though they are cars travelling on a road, without jumping into the street to try to stop them or chasing after them,” says Mulcahy. “Learning to observe our thoughts in this way can help with learning how to accept obsessions and treat them as ‘just intrusive thoughts’, rather than giving them excessive attention and importance, [which] can help ease anxiety over time.”

With OCD being such a misunderstood and often stigmatised illness, finding a community can also help you feel seen, understood and less alone. “Joining an OCD support group, attending an OCD-specific therapy group or becoming involved with the OCD community can also help alleviate the sense of embarrassment, shame, self-stigma and anxiety that people living with OCD commonly experience,” says Mulcahy. “When people have the opportunity to meet others who may experience similar thoughts or difficulties, they often come to see themselves in a different light, which often improves their anxiety and OCD as a result.”

 

Organisations that can provide further help and support
Lifeline: 13 11 14
OCD Bounce: ocd.org.au
International OCD Foundation: iocdf.org
OCD UK: ocduk.org