It is estimated 100,000 people in New Zealand, or 2% of the country’s population, live with (OCD), a condition characterised by repetitive intrusive thoughts and compulsive behaviours. Treatment is complex and can be expensive, meaning people become more unwell if they cannot afford it. Vera Alves spoke to three Kiwis about their life with OCD.
From the day Catherine Lees walked into her GP’s office and explained how she was feeling to the day she got an official diagnosis of Obsessive Compulsive Disorder, 17 years went by. The daily struggle with a disorder that attacked her brain often made her feel like she was losing her mind.
Over nearly two decades, Lees saw many therapists in New Zealand but they never strayed far from the initial diagnosis of anxiety. She knew something was missing. Her intrusive thoughts would flare up around big events in her life, like starting NCEA Level 1 and experiencing love for the first time.
“For nearly two decades, I struggled with intrusive thoughts and compulsions, feeling isolated and convinced I was losing my mind. A prevalent theme during those years was my Confession OCD. I felt an intense urge to share my shameful, embarrassing thoughts with my mum. You know how sometimes you have weird, unusual thoughts, and your brain can usually just brush them away? Well, in my brain, those thoughts got stuck. I couldn’t let them go, and they would terrify me, making me feel like a bad person for even having them,” she explained.
“My OCD latched onto the idea that sharing my thoughts would relieve me, creating a sense of urgency and shame if I didn’t tell mum about every troubling thought. It felt like those thoughts would cling to me otherwise. Some lingered for days, while others haunted me for weeks, leaving me feeling helpless and disconnected from the world, as if I were trapped in a bad dream,” Lees added.
In the end, after years of research and speaking openly about her symptoms, a friend with OCD recognised some of what Lees was opening up about and suggested she talk to a therapist at The Centre for Anxiety and OCD in California, US.
Her first Zoom appointment with her therapist in California was two years ago.
“Two sessions in, she said ‘you 100% have OCD’,” Lees recalls.
The relief she felt that day will be hard to beat. “Finally! I know what I’ve got, I can work on it now,” she remembers thinking.
Lees was 15 when she first saw her GP because of her intrusive thoughts.
“I’m 34 now and I only got properly diagnosed two years ago. It’s s*** because it wasn’t even in my own country. It sucks.”
Lees feels let down by the New Zealand mental health system and says, overall, there is not a solid understanding of OCD among the medical community.
OCD diagnosis and treatment ‘a lottery system’ in New Zealand
Lees is not the only one who has struggled to get diagnosed with OCD in New Zealand.
It is estimated 100,000 people in the country, or 2% of the population, live with the disorder.
About 5000 adults have used secondary health services (anyone beyond their GP) for the treatment of OCD, and research released last week into these 5000 people revealed marked disparities in access to health services for individuals experiencing OCD across the country.
The findings from the study suggest certain demographic groups, including Māori, Asian or Pasifika, migrants and older adults, face substantial barriers to accessing specialist treatment. Additionally, the study revealed people living in the South Island and urban areas were more likely to receive treatment than their counterparts in other regions.
“There seems to be a lottery in how readily someone experiencing OCD can access diagnosis and specialist treatment” said Marion Maw, an advocate for OCD and founder of Fixate, a community group for individuals living with OCD and their families.
The study also found that people with OCD who have accessed secondary health services often contend with additional mental health challenges, such as anxiety, depression and substance use. They were less likely to be employed or belong to higher income brackets, suggesting the psychological and socioeconomic costs of severe OCD are considerable.
While the study could only look at data from individuals who sought secondary health professionals for OCD in the public sector, its authors concluded it is likely only a minority of people who experience OCD can access OCD-specific psychological treatment.
This could in part be because New Zealand is not adequately resourced to deal with OCD.
Dr Hiran Thabrew, child psychiatrist, paediatrician and senior lecturer at the University of Auckland, who co-authored the research, says this is “due to chronic underfunding of public mental health services, limited education of primary and specialist professionals about OCD and insufficient numbers of psychologists and psychiatrists to provide evidence-based treatment”.
“People with OCD are most likely to be seen by primary health organisations. The health improvement practitioners [HIPs] and counsellors who work there are unlikely to have had specific training in OCD,” he told the Herald.
“It’s hard to get into specialist mental health services and as this study shows, the majority of those who do have secondary or comorbid issues associated with risk. Also, the geographical variation in OCD diagnosis reflects geographical inequities of mental health service availability around the motu,” he added.
Treatment for OCD includes specialised forms of Cognitive Behavioural Therapy (CBT), delivered by psychologists, and medication delivered by psychiatrists, Thabrew said.
“Both of these workforces are undersupplied and stretched to capacity. Unlike other countries, there are no outpatient or residential units that specialise in OCD.”
According to Dr Paul Skirrow, clinical psychologist and senior lecturer at the University of Otago, New Zealand does not follow the international guidelines for OCD treatment, which recommend that people with “mild” OCD should be offered up to 10 sessions of psychological therapy with ERP (Exposure and Response Prevention) in the first instance and people with more severe OCD should be offered more- including more intensive and sustained ERP therapy and SSRI (selective serotonin reuptake inhibitor) medications.
Skirrow says New Zealand is “absolutely not well-resourced to support people with OCD”. He says the ethnic and regional inequities found in the research are “enormous” and current conditions in New Zealand with a lack of specialised treatment in the public sector “automatically favours more affluent families” who can afford private therapy.
“Similarly, private services are typically not well-placed to work with people from ethnic, cultural and religious minorities. There is lots of data to suggest that Māori, for instance, are underrepresented in the psychology workforce.”
‘I hit rock bottom’: Mum with OCD thought she would hurt her daughter
Laura Butler, from Hastings, was diagnosed with Generalised Anxiety Disorder (GAD) when she was 12 but it wasn’t until the birth of her daughter, nearly five years ago, that she got her official diagnosis of OCD.
The 35-year-old works fulltime as a teacher and says she is currently in a good place with her management of OCD but it hasn’t always been that way.
Suffering from postpartum anxiety following the birth of her child, her midwife referred her to maternal mental health services.
Butler’s predominant form of OCD is a type known as “harm OCD”. People with harm OCD worry that they will harm themselves or others, either by accident or by acting on an involuntary impulse or urge.
In her case, her harm OCD made her constantly fear she would harm her own child. As a solo mum, OCD made her believe her daughter was not safe with her.
“After the second Covid lockdown, I hit rock bottom. My daughter had to go live with my mum,” she recalls. “I’m in a good place now but I look back and think ‘wow, that was bad’.”
Like Lees, Butler is open and candid about her OCD.
“I want people to know that OCD is not just being super organised or needing to wash our hands a lot. OCD for me is being so scared I am going to murder my daughter that I can’t be in the same room as her.”
Finding the right medication helped but it was a journey as Butler says a lot of the medication made her very fatigued and needing to sleep.
“When you’re a solo mum, you can’t sleep 16 hours a day.”
Therapy can be expensive - too expensive for a solo mum on a teacher’s salary.
“I’ve had a mix of public and private treatment. At the peak, I was spending $400 to $500 a week in treatments. As a solo mum that’s hard to find, so you just let yourself get more unwell,” she said.
“Now, because I’ve been so unwell in the past, I get seen with more urgency. There’s a sense of having to get so unwell to qualify for public treatment.”
“We have a lot of very well-meaning psychologists but many of them do not know much about OCD and are just reading from a textbook.
“Over the years I became very good at masking and at avoiding triggers. You can’t do that when you have a child so I’ve had to find good coping mechanisms.”
‘I’m doing compulsions constantly’
Madeleine Fleckney, from Rolleston, was diagnosed with OCD 10 years ago when she was a teenager.
“It was quite a sudden onset of symptoms,” she recalled. The symptoms were “quite severe” and her mum, who worked as a nurse practitioner, picked up on them and took Fleckney to the GP. She’s been in treatment ever since and, over the years, says she’s had “pretty much every treatment available in New Zealand”.
At 21, she had a son and suffered from postpartum anxiety, which exacerbated her OCD.
“My OCD was at its most extreme. I was admitted to the mothers and babies mental health unit in Christchurch, at Hillmorton Hospital. Before my son turned 1, we had stayed there twice.”
Fleckney is an early childhood education (ECE) teacher but OCD forced her to leave her job.
“My predominant OCD fear is dying or the fear of something happening to my family. I have to have my son with me at all times,” she explains.
“I had to leave my job 11 months ago because of it. I’m a solo parent and this is the first time since I was 16 years old that I haven’t been in paid employment. I need to work on getting better.”
Fleckney says her OCD is a constant presence in her life.
“I’m doing compulsions constantly, I have intrusive thoughts every two to five minutes. My compulsions involve tapping and repeating things. If I pick a glass from the table, I have this intense feeling of dread. I have to pick it up and put it back down over and over again until that feeling has subsided.”
The young mum sees a psychologist every week and is about to start OCD group therapy.
‘You’re not a monster’: What OCD sufferers want others to know
While in popular culture OCD is mostly portrayed as fastidious handwashing or extreme cleanliness, the disorder comprises a wide spectrum of symptoms which can range from the more well-known fear of contamination, to doubt/checking, arranging/ordering things, all the way to intense emotions and feelings of guilt and shame over disturbing intrusive thoughts. These more disturbing thoughts can relate to extremely taboo topics, including violent obsessions.
Because OCD is egodystonic, it tends to focus on intrusive thoughts that are extremely distressing and that go against that person’s values.
One of the many issues that comes with OCD is the shame and stigma attached to it. For many, taking the first step to talk to a GP about their intrusive thoughts is a big first hurdle to overcome.
“It is one of the most powerful doubt-inducing disorders and also feeds off the fear of uncertainty within one’s self,” Lees said.
“One of the most frustrating responses I receive when I share my OCD struggle is, ‘OMG, I have OCD too; I love cleaning!’ Such remarks trivialise a serious condition,” she continued.
“OCD is not a quirky personality trait, it’s a debilitating disorder that many face daily. I wouldn’t wish it upon my worst enemy.
“The first appointment is scary. You feel like a monster or like they’ll chuck you in a loony bin. I was lucky to have a GP that was understanding of that,” she added.
“If someone goes to a doctor and the doctor doesn’t know anything about it, it can go down a wrong path and create trauma for them.
“I feel so many people out there have these weird intrusive thoughts who are struggling thinking they are monsters and no wonder we have a high suicide rate.
“I’ll just say this bluntly and frankly, if you’ve got this in New Zealand, you have to take the bull by the horns and steer your own way, because we probably have another five years until we are going to see therapists that actually specialise in OCD treatment for all types of themes, and not just cleaning and checking.”
Despite the complexity of the disorder, Lees wants others who suffer from it to know it doesn’t have to limit their life. She’s got a degree, travelled the world and worked on superyachts, all while managing the disorder.
“I want others to know they are not alone in facing distressing thoughts. With the right help, you can still achieve your goals in life. If you’re reading this and feeling lost or on the brink of despair, please remember that you are not alone.”
Experts say Government must do more to help OCD sufferers
Dr Skirrow told the Herald that “successive governments have consistently failed to meet the needs of what has been described as the ‘missing middle’ in mental health care”.
“The focus of specialist mental health services has tended to be on people with high acuity (highly unwell, highly suicidal or violent - sometimes described as having ‘severe’ mental health issues). More recently, there has been a focus on primary mental health care, with short-term (one to six sessions) generic counselling and educational interventions (typically aimed at people described as having ‘mild’ mental health issues). However, there are thousands of people who have more chronic conditions like OCD (often described as having ‘moderate’ mental health issues) that could be helped by having access to evidence-based psychological therapies.”
Skirrow says the Government should develop “an evidence-based psychological therapies service, similar to that available in the UK’s NHS” or adopt Australia’s model of “offering up to 10 funded sessions with a psychologist every year to people diagnosed with a mental health condition”.
“There is really strong evidence that these kinds of treatments actually save money in the economy, in terms of reducing disability, unemployment, work absenteeism, improving productivity and the physical health of people with mental health issues,” he said.
If you or anyone you know struggles with OCD, visit the Fixate website on https://www.ocd.org.nz/ for information on treatment and diagnosis of OCD in New Zealand.