When Dr Leigh Sheppard was three years old, her parents asked her to pick a balloon. Among the different colours, shapes and sizes, Sheppard could not decide. She believed that if she chose the wrong one, her brother would die.

Buying a balloon seems like a fun activity for a child, but for Sheppard’s family, this was not a good day. Her brother was hospitalised, getting open heart surgery, and the balloon was meant to be a get-well present.

As Sheppard took longer and longer to decide, her parents became exasperated, thinking this was her way to get attention. At the time, Sheppard could not put into words the overwhelming fear she was feeling and her unwanted thoughts about her brother’s death.

It took three decades and more unwanted thoughts to finally understand what was happening to her. The answer was a mental illness known as obsessive-compulsive disorder.

However, it wasn’t until a physical compulsion started disrupting her workday that she finally got a diagnosis of OCD.

“I was a GP registrar, and I had a patient waiting for me. I was washing my hands on a loop, and I couldn’t stop because it needed to feel right, but it didn’t. I was so angry with myself because I knew someone was waiting for me. How many times is it gonna be before it is enough? And I remember being very frustrated, and that is what it took to click for my psychologist that maybe it is not generalised anxiety disorder and it is OCD.”

“I am so OCD” or “I am a little bit OCD” are common phrases most people have heard or said at least once. These phrases are commonly used to describe behaviours associated with cleanliness and neatness. Liking things organised in a particular way, hating dust gathering on surfaces, or being a perfectionist are all quirky stereotypes people jokingly pair with OCD.

According to Healthdirect, OCD is a mental illness that affects 3 per cent of Australians. People with OCD have obsessions, compulsions, or both.

Obsessions usually manifest through thoughts or mental images that are unwanted and disturbing to the individual. They tend to be deeply rooted in fear and repetitive. These can include everything from forgetting valuable things to taboo topics involving control, sex, religion or harm. An example of this is Paedophilia OCD, where an individual suffers from unwanted thoughts of sexually harming a child. It is important to recognise that people living with this have no desire to act upon those thoughts, which is why they are unwanted and generate immense fear.

Compulsions are repetitive behaviours a person feels the urge to do, often in response to an obsession. This includes excessive hand washing, counting, repetitively checking things or praying. Compulsions are performed to relieve some of the anxiety brought on by obsessions and tend to be at the root of OCD stereotypes.

The problem with stereotypes is that they can prevent people from getting a diagnosis. According to research from psychologists at the University of New South Wales, it takes an average of nine years from first experiencing symptoms to get a diagnosis of OCD.

For Sheppard, this had a significant impact on her delayed diagnosis. Even now, after being diagnosed, these stereotypes continue to disrupt her life.

“I get a lot of ‘you must have a really clean house’ or’ come clean my house because you will enjoy it’. I have to remind people that if it feels good, it is not OCD. Those sorts of stereotypes invalidate the person’s experience and the distress that is associated with OCD, because it plays it down to you must enjoy what you are experiencing.”

She also says the stereotypes contribute to stigmatising other less-known forms of OCD.

“When I talk about some of the suicidal OCD themes that have come up for me, sometimes people look a bit mortified thinking that I want to actually harm myself. Even when I tell them that there is a difference between suicidal OCD and suicidal ideation, you still have a concern that they might send you to an emergency department because you need containment.”

Like Sheppard, many people with OCD first experience it during their childhood and adolescence.

Clinical psychologist and lecturer at Curtin University Dr Rebecca Anderson, created an online treatment program ‘OCD? Not me!’ for people aged 12–18.

“We developed that program because, at the time worldwide, there were no online treatments for young people with OCD. There is a peak during adolescence when OCD tends to onset, so why should they have to wait until they were adults to receive good care and services?”

Dr Anderson says people remote and rural areas suffer the most in terms of accessibility.

“There are fewer trained clinicians in rural and remote areas. Telehealth has obviously helped us overcome a lot of those sorts of barriers, but it is still challenging to find someone, and then to find someone who has the particular expertise to do the exposure and response prevention treatment, which is the first line of treatment.”

The exposure and response prevention treatment is a behavioural therapy in which patients are exposed to their fears and anxieties in a controlled and safe environment with a trained clinician. The objective of ERP is to develop a plan to confront the obsession and over time learn to not see it as a threat.

However, what happens when you first experience OCD symptoms as an adult?

Martin Ingle was 23 when his mind became overwhelmed with unwanted thoughts.

“It came completely out of the blue. Over the period of a couple of months, I witnessed my thoughts and my brain changing against my will, and the most important thing is that I had no idea it was OCD. It was a terrifying time.”

Ingle grew up with TV shows like Monk, which is about a private detective with OCD and multiple phobias.

“For that reason, when I first experienced OCD symptoms, I had no idea that this thing that I heard about was what I was experiencing because they seemed two totally different things. It never occurred to me that what was happening to me when my obsessional thoughts began was OCD because it looked like nothing I knew about OCD.”

It only took Ingle 10 months to receive a diagnosis. He says he has the internet to thank for that.

“I came across an article or two about pure OCD, and I realised that this was what I was going through, but I was still so scared of saying these thoughts out loud, even to a doctor.”

Pure OCD refers to people with OCD who only experience obsessions without any physical compulsions.

The article Ingle read was written for The Guardian by Rose Cartwright in 2013. Cartwright details her experience with pure OCD and doesn’t shy away from taboo and complicated topics.

She begins the article by saying: “On a spring night when I was 15 the mental image of a naked child entered my head and the corners of my world folded in.”

Cartwright later went on to write a book about her experience.

“If it wasn’t for advocates like her, talking about their experience or what it really was, then for me, it would have been a lot longer to get a diagnosis,” says Ingle.

Ingle does recognise as well that being a man with OCD comes with its own challenges. According to the National Library of Medicine, men are less likely to report mental health issues because of societal gender norms.

“As a man with OCD, there are unique struggles you go through because fewer men talk about it publicly. So, it is really hard to find someone to relate to. It is difficult for men to get help when there aren’t public images of what getting help looks like.”

Despite this, advocacy from people with OCD continues to generate changes.

“There’s been pushback against the misuse of the term “I’m so OCD” in media advertising, where consumer groups have actually contacted businesses and said this is an inappropriate use of this terminology. You wouldn’t say I’m so schizophrenic and think it was a funny thing to write, so you shouldn’t be saying that about OCD either,” says Dr Anderson.

For advocates like Ingle and Sheppard, sharing their experiences with others is part of the pushback to change people’s perception of OCD.

“There is so much stigma and lack of understanding that it would be really tempting to not let my colleagues know I have OCD, but I think for me, not sharing only made my health worse. I made an active choice to be open about my journey because there’s so much shame when we don’t share our experiences,” says Sheppard.

Sheppard also believes sharing and spreading awareness contributes to the general argument of treating mental illnesses with the same importance as physical illnesses.

“I feel like if someone had an accident and had an amputation, there wouldn’t be any shame associated with that, so why would I not share when there is so much opportunity to make an impact when I have a condition that shouldn’t feel shameful.”

In 2024 OCD Awareness Week ran between October 13 and 19. Sheppard was involved in organising many activities focused on advocacy through her NGO OCD WA. Sheppard created the support group because of the lack of resources and information available in Australia about OCD. When first diagnosed, Sheppard felt alone, and scared that her illness would disrupt her work, but with time she felt more hopeful.

“There’s a feeling of relief and comfort when you get to sit around a table and openly discuss anything and everything about OCD and know whatever you are saying is understood. There’s so much power in that. People with OCD are so resilient and so capable, and even though this disorder sucks, it doesn’t need to dictate or limit what you do.”

If you or someone you know are experiencing a mental health crisis, you can call Lifeline at 13 11 14.