It took Penny 23 years to get an OCD diagnosis — a challenge also facing many others

Penny Moodie is a mother of two from Melbourne, and for more than two decades she felt she couldn’t trust herself.

“I couldn’t make sense of anything that was going through my head, and I felt like I never had any peace. I felt like a bad person, and I didn’t like myself,” she said.

It wasn’t until recently that Penny could make sense of her thoughts, when she was diagnosed with Obsessive Compulsive Disorder (OCD).

“It took me a long time to start talking about what was going on in my head, because it can be really difficult to talk about some of these topics that come up with OCD … because they can be so taboo.”

It’s estimated more than half a million Australians experience OCD each year, yet it often takes over a decade to receive a diagnosis.

This is because the complex disorder is sometimes misunderstood by healthcare professionals and broader society.

Not always about cleanliness

OCD can take many forms.

It can involve things such as obsessions about causing or failing to prevent harm; contamination, which leads to washing and cleaning rituals; repugnant obsessions related to sex, violence and religion; or a need for symmetry and hoarding.

When clinically diagnosing OCD, psychologists look at how debilitating the disorder is on someone’s daily functioning.

White woman with long blonde hair and blue eyes smiles at camera, with a garden in the background
Psychologist Andrea Wallace’s PhD thesis was on shame in OCD(Supplied)

Clinical psychologist Dr Andrea Wallace said OCD can impact someone for an hour or two per day, or up to 14 hours in more severe cases.

She described the disorder in two parts: the obsessions, followed by the compulsions.

“The obsessions are unwanted, intrusive thoughts which are distressing and unrelenting,” she said.

“The compulsions are repetitive or ritualistic behaviours and are performed in response to the obsessions… to alleviate the stress and prevent a dreaded outcome.”

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Penny’s OCD started when she was seven. She worried her parents would be killed in a car crash unless she repeated certain words over and over, and touched wood in her bedroom.

When she grew a little older, Penny feared she had AIDS and it would spread to anyone she loved. When she entered high school she worried she was pregnant, even though she had never had sex.

Penny’s OCD is known as Pure-O and is a type of OCD which is predominantly unrecognisable. That is because most of Penny’s compulsions are played out mentally in the form of rumination, seeking reassurance and researching.

Thousands of Australians impacted

Dr Wallace said almost everyone has unwanted and intrusive thoughts sometimes. The difference with OCD is how someone responds to those thoughts.

On a bad day for Penny, her OCD would impact most of her day and sometimes even her sleep.

“I couldn’t function. I remember taking a year off university in my second year because I couldn’t hold all these OCD thoughts and study at the same time… it was exhausting,” she said.

More than 770,000 Australians are estimated to experience OCD during their lifetime, according to the Department of Health. The disorder can have a significant impact on their relationships with family, partners and friends.

Moreover, the World Health Organisation has classified OCD as one of the top 10 most disabling diseases for loss of income and quality of life.

Getting a diagnosis

David Cooper, a psychologist and researcher at the University of New South Wales, said an OCD diagnosis could take over a decade to receive.

Dr Cooper helped create the OCD Clinician Network, which aims to help Australians living with OCD find the right treatment.

Smiling white woman with long dark hair, wearing an orange t-shirt and a stethoscope around her neck
Lena Rennick’s OCD diagnosis took over 10 years to receive(Supplied)

Twenty-nine-year-old Melburnian Lena Rennick is training to be a GP. She started experiencing OCD symptoms when she was a teenager.

Like Penny, Lena’s OCD mainly resides entirely within the mind.

“If you were to watch me for a day, you wouldn’t pick up on any compulsions. Perhaps if I was having a really bad day, you might see I was distracted by something or having difficulty maintaining focus. But my compulsions themselves aren’t visible,” she said.

Lena’s OCD presents itself through themes of suicide, sexuality and being “bad”, including the fear of being a bad doctor.

“When I was a teenager and started having sexual experiences, that’s when the sexual intrusive thoughts started,” she said.

In her early twenties, Lena’s thoughts evolved into plans of how and when she would die.

“I thought, ‘Once I get into medical school, once I am on track to be a doctor, then I will be happy and the thoughts will go away,'” she said.

“But once I was in medical school and I was as happy as I could possibly be with all things in my life, I was still having suicidal thoughts.”

Not long into her medical degree, she reached out to a GP. Eight months later, following expressions of acute suicidal ideation, the GP referred her to a psychiatrist and Lena started medication for anxiety.

In 2018, four years after initially reaching out to her GP, Lena was diagnosed with OCD.

Soon after, she was admitted into a psychiatric ICU after nearly taking her own life.

Misunderstood by sufferers and experts

Lena’s diagnosis took over 10 years to receive because she didn’t understand what she had experienced, and nor did some of the experts helping her.

Like many people with OCD, Lena was so ashamed of her thoughts that she struggled to disclose them, and they remained a secret for a long time.

“When I first started the OCD inpatient program, the therapists told me to stop doing my compulsions.

“But I didn’t know what my compulsions were because they weren’t physical, and no one else was experiencing what was going on in my mind, so I didn’t get much therapy out of the program other than the psychoeducation.

“I also don’t feel like I had that much more of an enlightening experience at medical school learning about OCD … the different types.

“I never thought it could manifest with suicidal thoughts or sexual intrusive thoughts.”

David Cooper said not only was OCD misunderstood by broader society, but also by some healthcare professionals.

White man in a blue jumper with short dark hair smiles in front of a wall of shrubs
Psychologist David Cooper is a researcher at the University of New South Wales(Supplied)

“OCD is so diverse, and [some professionals] don’t realise how it can present itself,” he said.

“OCD used to be categorised as an anxiety disorder… but the treatment is so much more specialised than that.”

When Penny first started to see a psychologist in her late teens, she was labelled as having anxiety, and treated as such.

“I was put on medication, which helped a lot, but it only helped to a certain point,” she said.

“After a while, I stopped seeing psychologists because I felt like talking about the things that were going on in my head weren’t actually helping because… I felt like I needed to perform a compulsion.”

David Cooper said only about half of the people living with OCD have used a mental health service.

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David Cooper said the right treatment with the right expert can work for most people, but more can be done to prevent misdiagnosis and lengthy delays in treatment.

“Misdiagnosis can often be because people are feeling shame about the symptoms … and it is going to be really hard for them to open up to a GP in a quick consultation,” he said.

“When you do get treatment … if it doesn’t work, it’s not your fault. It’s actually an issue with the treatment because we are trying to do this one-size-fits-all approach.”

A white man and woman with dark hair sit smiling on a beach, holding a young child
Penny Moodie says living with her OCD is now manageable(Supplied)

A message of hope

For Penny, living with OCD has been a long journey.

“It’s taken a lot of work to get to the point that I’m currently at, which is not that OCD has gone — because I think it ebbs and flows — but I am at a point where generally day to day I can manage it pretty well,” she said.

Lena encouraged anyone struggling with their thoughts to remind themselves to open up to others.

“I’m pretty content just coexisting with the thoughts in my head. I’m really functional in my personal life and work life … as awful as it has been in the past, I’m okay with it now.

“There are still days where I struggle, but I know those periods will pass.

“I think it’s just changed my life talking about it and letting people in, letting go of the shame.”

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