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Image: Tina Tiller/supplied
Image: Tina Tiller/supplied

SocietyMay 2, 2022

OCD advocates want better support for a misunderstood disorder

Image: Tina Tiller/supplied
Image: Tina Tiller/supplied

People living with OCD say the government needs to do more to provide the specialist psychological help that can benefit the lives of many affected by the disorder. Shannon Harrison reports.

Josie* was at a loss as to exactly why her seven-year-old son Luke would scream for hours on end. Luke had no explanation for it either.

Josie didn’t think Luke was intentionally badly behaved. She suspected something was wrong and he could be helped, but “what”, “when” and “how” were questions she could not answer herself.

“People just thought he was being naughty and not listening, when actually it [screaming] was a compulsion that he had to do. It was so distressing.”

She persisted and jumped through hoops to get support through the public health system.

Eventually she got answers from a clinical psychologist. It was obsessive compulsive disorder (OCD) robbing her son of a peaceful childhood.

Josie is one of the many who have signed a petition calling for easier and more widespread access to specific wellbeing schemes for OCD support.

The petition, already at 1,000 signatures and growing, calls for an increase in specialist training in OCD treatment at all levels of mental health care. It is intended to be presented to parliament in the near future.

Over 50,000 New Zealanders and their families struggle with OCD, but due to the often internalised and varied nature of the disorder, it remains largely unseen.

Fixate, an Aotearoa-based online support group, encourages open dialogue and facilitates advocacy for people living with OCD, their family members and parents. The shared experiences of group members trying to access suitable treatment in the public mental health system prompted the creation of the petition.

Marion Maw, one of the group members who shared her experience, says early recognition and appropriate therapy are integral to managing OCD, but the current system is not fit to perform this role.

“You know how the Covid vaccination campaigns needed different approaches for different communities? Well, the solutions being provided for mild to moderate mental distress are like that. They don’t meet the needs of the OCD community.”

Rear view of woman looking out to city through window
For sufferers, OCD can be isolating – an effect that was magnified during the pandemic (Photo: Getty Images)

Maw says OCD is a complex condition, and standardised cookie-cutter treatments and therapies are not always effective in managing the disorder.

Exposure and response prevention therapy (ERP) is the gold standard for effectively treating individuals with OCD, she says.

A typical ERP session, guided by a trained mental health provider, involves a person “exposing” themselves to the situation (or trigger) that brings about the unwanted intrusive thoughts. The person is prompted to sit with the anxiety and not engage with the thoughts by way of safety behaviours (compulsions).

These safety behaviours vary greatly and can be internal (thought auditing to ensure the person has not done anything “wrong”, repeating mantras mentally, counting), external (excessive hand washing, tapping, sniffing oneself, body checking, and performing tasks in a stringent fashion every time or multiple times), or a combination of these. This list is in no way exhaustive.

It’s thought that exposure to anxiety over time, and the subsequent resistance of compulsions, allows people to alter their uncertainty and discomfort around unwanted thoughts or obsessions. A person’s level of anxiety is believed to decrease, and sometimes become nil, after extended exposure to the situations.

ERP can be practised by a person outside of controlled therapy environments once they have learnt the tools to do so. This therapy often works in tandem with SSRI medication to reduce the frequency and intensity of anxiety brought on by unwanted intrusive thoughts.

“ERP isn’t some new trendy treatment. Internationally it is well-established as best practice treatment with a strong evidence base,” says Maw. But sufferers are often stuck in a “revolving door of ineffectual health care”.

While ERP has a high success rate, the scarcity of clinical psychologists and other mental health providers trained in the therapy means not all of those who seek treatment are able to engage in it.

Additionally, the well-documented national shortage of psychologists has meant access to any treatment, let alone specialised therapies, is “a genuine lottery”, according to Maw.

These issues are further exacerbated for Māori who face significant barriers to healthcare at all levels.

The pathways to ERP and general psychological treatment are not linear and can depend on how an initial consultation with a primary care physician plays out.

Getty Images

Kane*, from Hawke’s Bay, struggled to have his condition recognised as OCD when he first raised concerns with his GP, and says he ended up having to teach the doctor about it. This left him feeling apprehensive about his chance of receiving appropriate treatment like ERP, or any treatment at all.

The lack of knowledge around the disorder and subsequent lack of specialised services can leave people believing there’s no other option; that life will always be like this.

“When there is a limited understanding of the disorder then the referral isn’t going to be worded in a way that will actually get the help that’s needed,” says Kane.

GPs are gatekeepers to further care, and if they are not familiar with the best route of treatment, then people end up slipping through the cracks, he adds.

“It took around half a year for me to access help and would have taken much longer if I had not gone down the private route… It could have been a lot less stressful if the GP had known more about the disorder rather than just its stereotypes.”

Josie and Luke are no strangers to the pitfalls of the system, primarily the Child Adolescent Mental Health Services (CAMHS).

An initial paediatrician prompted Josie to not “sugarcoat anything” when Te Haika (the crisis team) called. She was encouraged to detail her son’s worst days to bolster their chances of receiving therapy.

They are some of the “lucky ones” who managed to access effective treatment, she says.

In the midst of the 2020 national lockdown they were paired with a psychologist experienced in ERP and who had previously worked with children.

“It is important to note the difference ERP has made not just for our son, but for the family,” says Josie. “Had this gone untreated, the effect on family relations would have been devastating.”

Josie says the therapy was initially difficult due to the age of her son. “Children don’t understand the concepts – intrusive thoughts are hard to define when you don’t know what a thought is.”

Luke, now eight, did know he was feeling better than before he started therapy.

“I always wanted to say goodbye, and if I didn’t I’d be screaming and crying,” he says. “My nose started to bleed, I got a headache, I lost my voice and I was coughing a lot.

“I had to do stuff a certain way and if I didn’t I’d get really frustrated and mad. When I went to therapy, a few weeks later, I felt better…and it’s really rare that I do it [compulsions] now.

Josie knew the support provided by CAMHS would not be long term.

“When we finished the sessions I kind of knew that we’d be coming back, it didn’t quite feel resolved.

“If you need to come back again, within three months, you don’t need another referral, but if it’s longer than three months you need to go through your GP again and go to the back of the queue and be triaged.”

Maw hopes the petition can reach an audience beyond the direct OCD community. “I want it to raise other people’s awareness that our needs exist.”

The petition can be signed at actionstation.org.nz

*Some names have been changed to respect the privacy of those who have contributed and their families.

Where to find help

Need to talk? Free call or text 1737 any time for support from a trained counsellor.

Anxiety New Zealand – 0800 269 4389 (0800 ANXIETY)

OCD NZ – resources and help for those affected by OCD

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Illustration: Aimee Cairns
Illustration: Aimee Cairns

The Sunday EssayMay 1, 2022

The Sunday Essay: Wuthering

Illustration: Aimee Cairns
Illustration: Aimee Cairns

Claire Mabey looks back on her lonely love affair with the wiley, windy moors immortalised by Emily and Kate.

The Sunday Essay is made possible thanks to the support of Creative New Zealand

Original illustrations by Aimee Cairns.

There was a time when I wrote bad poetry. Truly offensively bad: “Moss fuses to my bones / Yorkshire mud marries my skin”.

I was 26 and I wrote such things during the first months of living in Hebden Bridge, a small West Yorkshire town about three hours’ tramp across the moors from Haworth where the Brontë Parsonage sits darkly among trees and gnarly, cracked gravestones. Just up the hill from Hebden is the medieval village of Heptonstall where Sylvia Plath is buried. I think Sylvia Plath hated it. She wrote a desperately bleak poem called ‘November Graveyard’ about the place, which I read in the depths of despair and cried and wished for Mt Maunganui, where I’m from.

In time, a man also drove me mad in Hebden Bridge. But for a while I was crazy in love with the place. I became a committed fell runner and took to the Pennine Way every day for hours at a time. I foraged blackberries. I wandered beside drystone walls and discovered ruins among copses. I was immersed in a cottage-core fantasy that flew me, mind and body, from any existence I’d known prior. I drank flat, bitter beer at places called the Stubbing Wharf, and the Fox & Goose and the Shoulder of Mutton Inn and the Blue Pig. The sky buzzed dense with stars on my night rambles. It was a gentle solitary existence. Like something from one of my childhood storybooks that embedded in me a profoundly English imagination.

Then I met an Australian man. We were both at the pub watching rugby. Australia versus Ireland and Ireland only bloody won. I was ecstatic about it in the way that you only get when caught away from home, the only Kiwi in the village, and the patriotism amplifies tenfold. We fought, we drank, we ended up back on his house boat. It was all very Antipodeans Go Mad In Brontë Country until it turned a bit Heathcliff 4 Cathy. The Australian turned out to be one of those boy-men with subtly broken parts. He illuminated a discord inside myself. My imagination was part-English and my heart felt part-Yorkshire, but I was not either of those things. At times my accent rendered me unintelligible. “What’s Dunna?” The door person at the famous Hebden Trades Club couldn’t get to grips with my squashed vowels for a good while. “Fud? What’s Fud?” And I attracted friends who had wounds they thought I could heal – as though my foreignness was medicinal. One of them insisted I was an angel and had arrived to help launch her music career. I was an editor at the time, of books.

By the time the Australian arrived I had been the only person I really knew in Hebden Bridge for too long. I had wandered, enraptured, far on the bridleways and footpaths and had made closer ties with the mud, stone and grasses than I had with any person. That shockingly familiar Aussie accent, that particular sun-strong skin, suddenly and brutally prodded at my suppressed reserve of loneliness. And I moved away with that Australian man-child up the line to the harsher, brickier City of Leeds. I left a passionate relationship with land for a human entanglement that ultimately equated to a negative. I think of that fleeting thing as dark matter: inexplicably swallowing the potential trajectory of time that could have been.

My friends named the whole thing The Heathcliff Affair. Though the Australian wasn’t a foundling or violent or particularly terrible. Just the ordinary kind of wrong person, wrong time, wrong place.

I left Leeds, thin and wretched, after just a few months. I remember the way London sprang up around me like a pop-up book as I took the fast train to my refuge of New Zealand friends who lived together in a surprisingly vast house on Mysore Road in Clapham. I shared a room and a bed with one of my oldest girlfriends and slowly repaired myself.

We danced a lot at Mysore Road. We were a typical Kiwi flat, always going to gigs, festivals and never tiring of the wealth of things to do in London. “What old, partially broken, shit should we go see this weekend?”. The antidote of the ease of close friends and my departure from, what was in hindsight, a strangely isolated lifestyle for someone so young, began to soothe the confusion in my mind.

The Mighty Boosh was often playing on the large TV screen in our lounge. We had all developed a crush on Noel Fielding. One hungover Sunday afternoon YouTube suggested that we watch Noel Fielding perform Kate Bush’s ‘Wuthering Heights’ for Let’s Dance for Comic Relief.

Noel nails it. He takes on the classic red-dress Kate which was the video produced for the American release of the song. He is lush and intense, leaping with shapely calf muscles and seducing the camera with kohled eyes. We clicked to the original Kate Bush video as soon as it was over and proceeded to learn the choreography from the lit witch of pop music herself. The song was a spell: Kate Bush’s whimsical strut and creep in the dim-dark stoked the embers of my love affair with the wiley, windy moors.

By New Year’s Eve I felt almost whole again. We took drugs and went to a pub in Shoreditch. We requested ‘Wuthering Heights’ no less than eight times in a row before we got kicked out. We danced home and played it on repeat in the lounge. We particularly relished the move that imitates a ghostly Cathy pushing open Heathcliff’s window. That bit at least didn’t require us to flick our legs above knee height. I woke up on the couch on the first of January with an aching jaw, my muscles sobbing like I’d run 20 marathons, and a thirst that could never be sated. I had a mad craving for Yorkshire. I wanted to go back and run on the endless footpaths and bridleways. I wanted to wander down to the pub and pat the regulars’ lovely old dogs. I wanted to give myself a second chance, to not get distracted this time, to let myself be alone with that place and not get lonely. I realised, at last, that the kind of grief I had suffered didn’t have much to do with the Australian manchild at all but was deeply connected to my break up with Yorkshire, with my failure to keep a grip on it, and on myself.

Kate Bush’s ‘Wuthering Heights’ helped me re-formulate the physics of my choices. The hours spent immersed in her witchy dance of hopeless desire rewrote my heartbreak and gave me back my connection to the place I had known, in my bones, was vital to me.

In Kate Bush’s hands the fruity melodrama of Emily Brontë’s gothic love-horror between man, woman, and Nature is offered up like a love potion. She makes Cathy a ghost to wannabe. The supernatural brilliance of her voice lends a sexiness to the intensity of the longing which in the novel is creepy and frightening. Kate Bush conjured the song on March 5, 1977 in just a few hours when she was 18 years old. My birthday is March 9 and I would like to do a study on which star signs would most commonly rate the song in their top 10 lists – I bet Pisceans would be right up there.

When it was released in 1978 it rose to the top of the UK charts and made Kate Bush the first woman in the UK to have a number one hit that was written entirely by her own hand. In New Zealand, ‘Wuthering Heights’ spent five weeks at number one and got to platinum status.

That happy statistic is a testament to Kate Bush’s ability to write a banger. But I think there’s something more to it. We are not often characterised as a country of passionate people, but even a brief listen in on almost any aspect of any of our lives – RNZ’s Country Life, a rugby game, Courtenay Place on Saturday night, an online arts forum – will exude a swirling noise of strong feelings. Like the English we can suffer awkward manners that can stifle our true feelings (speaking only for patriarchally oppressed Pākehā here) but, like our appreciation for Bush’s brilliant song, we recognise and are drawn to things that share our sense of bold enthusiasm; our willingness to venture wholeheartedly into the unpredictable forces of both the human and the non-human varieties.

Exhausted and on the comedown, I had a moment of clarity that morning on January 1 in Clapham. My demands on Hebden Bridge to reciprocate my fevered obsession with it was always going to break my heart. Sylvia knew it, Emily knew it, Kate wove it through my body. I moved to the centuries-old village built and built again on land I knew nothing of, and I wanted to believe that it was because the place had called me to her: that the land itself was claiming a kindred spirit. I wanted to think it was as though I’d been discovered by a long lost relative and I didn’t ever want to be let go.

But I was. My decision to leave Hebden Bridge to go to Leeds with the Australian was met with zero resistance. Yorkshire did not miss me. Hebden did not rise up and prevent the train from leaving the station with its favourite flame-haired captive.

Our relationship with place is so strange. It is perhaps the most meaningful relationship of many of our lives. Place defines what we think, how we behave, what languages we speak and how we relate to other places and the people who live there. But the land itself, the soil, the grasses, the trees, the topography all have complex natures of their own. I wanted to feel that the restless Yorkshire greengreybrown wanted me with it so badly that I wouldn’t have a choice but decide that that’s where I was going to have to stay forever. I wanted the moors to possess me and shape me into one of its enigmatic creatures.

Many readings of Emily Brontë’s Wuthering Heights make much of the quality of the landscape: that Heathcliff’s troubling character is mirrored in the unsettling “wuthering” of the moors. My overwhelming memory of reading that novel is that I recognised something wholly natural in all of the unnaturalness: being drawn in by the energy of the unpredictable, falling in love with the ineffable and the strangely familiar. We are made of the environment much more than it is made of us: even as we burn, poison and destroy it nature can re-wild itself the moment we disappear. It can’t be true in reverse: Human nature cannot sustain itself without the ground beneath and the sky above. We rely on it for our vitality in all senses of the word.

It’s how I feel about where I live now. Wuthering Wellington. A madness does sometimes emerge, pushed out of me by the wind that smacks at our house and lifts my son’s hair about his head like a dandelion. He is well riled by it: “Stop blowing me, Tāwhirimatea!” he roars.

I don’t think Wellington is my place. It feels wrong to admit it: I have lived here for many years now and I am thankful often. But restlessness is my persistent ghost. Only circumstance and lifestyle (I’m getting older, I have a child, I have money worries) keep me grounded.

But I am charmed by the fact that Wellington doesn’t particularly seem to want me either. We are shook, we are pushed, the sea trashes and sucks. I revere the enormous capacity of its moods. I think the South Coast could give the West Yorkshire moors a run for its money any day.

Emily Brontë instilled in me a compelling model for romanticising problematic, yet thrilling, relationships between people and place. But when the human kind of passion interrupted my early courting of the land of Hebden Bridge, it destroyed the far more important work of understanding my relationship with where I was and from where I’d come from. I haunted myself with regret for months before realising that I was only human.

But Kate Bush made me see that all the wuthering was perfectly natural. And it’s best just to put on a red dress and let your weird obsessions drive you to dance.

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