Open the door. Close it. Open it again. Repeat until it feels right. Wash your hands. Wash again. One more time, until you feel clean. Put your socks on. Take them off. Put them on. Repeat until it feels perfect.

For Josh Di Nucci, these are some of the rituals that can consume his day when his obsessive-compulsive disorder (OCD) is at its worst.

“Anything I do, whether that’s getting changed, opening a door or opening the fridge, I have these ideas of wanting to do it again until I’m clean or I’ve done it perfectly,” he says.

Josh was 11 years old when he knew something was wrong, but it wasn’t until he was 17 that he was diagnosed with OCD. In the years in between, he struggled to understand his thoughts and behaviours and was too embarrassed to tell his family.

“But I thought, just do it. It makes me feel better at the end of the day,” he says.

An Australian study published in 2023 found people seeking help for OCD waited an average of almost nine years from the onset of symptoms to diagnosis.

Dr Leigh Sheppard, founder and chair of OCD WA, believes misconceptions and stigma are among the reasons people delay seeking help.

OCD involves obsessions – unwanted, recurring thoughts, images or urges that cause distress – and compulsions, which are repetitive behaviours or mental rituals performed in an attempt to relieve that distress.

“The thoughts often target what a person values most, such as their loved ones, faith, morals or sense of self,” Dr Sheppard says.

“Many people don’t know that what they’re living with has a name, let alone that it’s treatable. When someone hears an accurate description of OCD, especially the hidden compulsions or the taboo thoughts, it can be the moment everything clicks.”

When everyday life becomes a ritual

OCD consists of many different subtypes. For Josh, the overarching subtype is perfection, but the main issues he struggles with are contamination and harm.

For Josh, one of the biggest challenges is using the toilet. Afterwards, he feels compelled to shower, sometimes going to great lengths to avoid using the bathroom, including restricting how much he eats.

“For me the toilet is just the most unclean place I could think of,” he says.

Even showering involves a series of rituals.

“Washing is the compulsion, and I wash while counting, so I do a different number of steps,” he says.

“I wash different body parts a certain number of ways in order to feel clean.”

Josh also considers much of his family home contaminated. His bedroom and one spot at the kitchen table are among the few places where he feels comfortable.

“I can’t sit on the lounge chair, I can’t touch where my mum’s touched,” he says.

Since his diagnosis 11 years ago, Josh has tried different treatment methods, including medication, psychological therapy and exposure and response prevention (ERP) therapy.

Searching for better treatments

Associate Professor Rebecca Anderson, who coordinates the Curtin Psychology Clinic, says ERP is one of the most effective treatments for OCD, helping roughly 70 per cent of patients.

But her research focuses on those who don’t respond to the treatment.

“Seeing 70 odd per cent of people get better with ERP is really effective, but they’re not the ones that I focus on as a researcher,” she says.

“What about those others? What about those ones who aren’t getting better, how do we improve treatment outcomes for them?”

Researchers at the Curtin Psychology Clinic are investigating whether brain stimulation could improve treatment outcomes for people with OCD who haven’t responded adequately to existing therapies.

Clinical psychology registrar and PhD candidate Christel Botha is conducting the trial under the supervision of Associate Professor Anderson and a neuroscientist.

This study combines ERP therapy with transcranial direct current stimulation (tDCS), a non-invasive technique that uses a weak electrical current to stimulate targeted areas of the brain.

Researchers hope to determine whether the stimulation can improve ERP effectiveness and help patients maintain longer-lasting results.

“The reason for this trial is because people often aren’t responding to ERP in the way that we would hope so relapse can be an issue and sometimes even the improvements through ERP aren’t exactly what we would hope for,” Botha says.

All participants in the trial receive ERP; however, only half receive active brain stimulation. The others think they’re receiving the procedure, but the machine isn’t actually switched on, allowing researchers to compare outcomes and determine whether the stimulation provides additional benefits beyond ERP alone.

“Pretty much everyone that has participated has improved, so that’s big,” Botha says.

However, because all participants receive ERP, improvements alone cannot establish whether the brain stimulation is effective.

Botha says the findings will help researchers determine whether the technique warrants further investigation.

A last resort

After years of trying different treatments, Josh started researching other options for managing his OCD.

“I had gone and looked into other therapies, and that’s why I went ahead with the deep brain stimulation process,” he says.

In 2024, Josh travelled to Melbourne for deep brain stimulation (DBS), a surgical procedure in which electrodes are implanted in the brain and a device is placed in the chest to deliver electrical impulses.

Unlike the non-invasive brain stimulation being trialled at Curtin, DBS requires surgery.

Josh describes it as a last resort. While the treatment has reduced the intensity of his obsessive thoughts, he says it hasn’t cured his OCD.

According to the Australian Bureau of Statistics, approximately half a million Australians experienced OCD over a 12-month period.

But accessing specialist treatment can be difficult, particularly for those unable to afford private care.

The struggle to access care

Dr Anderson says there are gaps in OCD services because of how the mental health system is designed.

She says people seeking support will often visit their GP for a mental health treatment plan before seeing a private psychologist.

Although the Curtin Psychology Clinic offers low-cost services, Dr Anderson says it often has a long waitlist.

“It’s challenging, there’s few places for people to go,” she says.

Dr Sheppard says OCD WA is working to improve access by bringing specialist clinician training to Perth.

“There’s still a long way to go, but WA is becoming a place where lived experience, clinicians and researchers work together,” she says.

Josh hopes treatment will become more accessible for people living with OCD in WA.

“I’d love to not have to travel to Melbourne every time I want to do a program,” he says.

“I’d love it to be easily accessible for me in WA, I’d love it to be cost-effective, I’d love there not to be a huge waitlist.”

What stigma keeps hidden

But beyond treatment, Josh says misconceptions about OCD continue to hurt, particularly when people use the term casually.

“They don’t know the pain that it causes me or the hours I’ve spent standing in the shower or the amount of money I’ve spent on soap that literally gets washed down the drain or the energy I’ve had to put in when all I want to do is sleep, and I’m stuck doing rituals,” he says.

“The stigma silenced me. The misconceptions silenced me. It made me feel embarrassed to share my experiences.”

Dr Anderson says greater awareness can help people recognise their symptoms and seek support sooner.

“There’s always someone who’s experiencing [OCD] for the first time, who’s having that sort of first experience of distress at their own internal world,” she says.

Key findings from the 2007 National Survey of Mental Health and Wellbeing show that Australians with OCD experienced an average of just over six days out of role each month, when they were unable to carry out their usual activities at home or work.

“Day to day, OCD can take hours out of your life and affect work, study, relationships and parenting,” Dr Sheppard says.

Despite the challenges, Dr Sheppard is hopeful about the future of OCD research and services.

“I want anyone with OCD in Australia to be able to recognise it early, get an accurate diagnosis and access effective treatment without long waits, high costs or having to travel for it,” she says.

Josh, too, hopes that speaking openly about his experience will help others feel less alone.

“I’d love people to know that they’re not crazy and that there are other people out there who do have these thoughts and behaviours,” he says.

“I’d love them to feel safe enough to share.”

For Josh, recovery remains a work in progress.

“For me, recovery is about management. I see myself living alongside OCD for the rest of my life, but I always have that small bit of hope,” he says.

“What happens if I could live a life OCD free?”