Obsessive compulsive disorder (OCD) is a widely misunderstood condition. It is treatable, but it can take years and thousands of dollars to access the right help in New Zealand. CECILE MEIER reports.
It all started with a thought. What if she killed her husband? Most of us have disturbing ideas – while holding a knife or walking past a cliff – and are able to dismiss them and move on. But that thought took Yvonne Tse down a spiral of obsession and crippling anxiety. The Auckland consultant stopped sleeping. She stopped using knives.
Her OCD made her so afraid she might harm someone that she stopped going to work. She locked herself inside her flat, suffocating in the cruel prison her fears had built. Within six weeks, her OCD had convinced her that she was a dangerous murderer, a psychopath, a sex offender. She wanted to die.
“I thought I was losing my mind. I always knew that I never wanted to act on any of my thoughts, but I was genuinely convinced I was dangerous, and it was better for society if I didn’t exist.”
People joke that they are “a bit OCD” because they like things to be tidy. We see it like a quirk about washing hands, flicking switches and counting. But for many who live with OCD, the compulsions are invisible and crippling. They are taboo thoughts looping in their heads. Endless what-ifs, mental checks, going over past events and seeking reassurance.
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GPs and even mental health professionals often fail to spot this form of OCD, known as “Pure O”. It can take years to get a diagnosis, and it is “virtually impossible” to access effective treatment for all forms of OCD through the public system due to a shortage of psychologists, NZ College of Clinical Psychologists executive advisor Dr Paul Skirrow says. Even those who can pay about $200 a week to go private struggle to find someone, with many psychologists closing their waiting lists to new clients, he says.
One or two people in 100 develop OCD, according to the Ministry of Health. It can affect anyone and usually starts in childhood. The exact cause of OCD is unknown.
OCD ‘a shape-shifting monster’
Yvonne Tse loves her husband very much. The thought that she could kill him popped into her head in August last year, as she was thinking of starting a family with him. Him dying was her biggest fear.
“OCD is a shape-shifting monster. It preys on whatever you fear the most,” she says.
It was a stressful time, during Auckland’s second lockdown, with work tensions and unwell family members adding to Tse’s anxiety. The more she tried to get rid of the thought, the more it came, with other repugnant thoughts piling up on top of it.
She rang her GP four times over several weeks. She was prescribed anti-depressants and sleeping pills, which was not ideal as she felt suicidal, she says. She was told to book a private appointment with a psychiatrist at a cost of $500. There was a six-week wait.
Her thoughts became more and more oppressive and Tse shut herself in her flat, unable to sleep, work and talk to loved ones. She was referred to Auckland’s mental health crisis team. A psychiatrist gave her “a bunch of meds” and said she had anxiety characterised with obsessive thoughts.
The crisis team called her every day, but she was getting sicker and sicker. On the brink of suicide, she was sent to a respite clinic for a week. That’s where she finally got the right diagnosis. She was not going crazy; she had obsessive compulsive disorder.
“I work with prisoners and criminals,” the psychiatrist at the respite clinic told Tse. “You are not that. The thoughts are completely out of line with the values you hold as a person.” The psychiatrist promised her it was treatable.
Getting a diagnosis for “Pure O” is challenging, partly because people who live with OCD often have other mental health conditions, such as anxiety or depression, and partly because they are ashamed of their thoughts, Wellington clinical psychologist Ben Sedley says. Some might even worry that seeking help could land them in jail, or lead to their children being taken away.
“My OCD fixates on some of the most taboo topics known to man. I genuinely thought that I was going to get locked up for the rest of my life,” Tse says.
A social worker or health professional with no understanding of OCD might put someone disclosing distressing thoughts through stringent risk assessments, but there is no risk, Sedley says.
In his experience, people who live with OCD tend to be well-intentioned and conscientious people who are tortured by their worst fears. They constantly think of trying to protect others from harm.
There are no recorded cases of a person with OCD carrying out their obsession, research published in 2009 found. “The person is no more likely to act on their intrusions than a person with height phobia is to jump off a tall building. The obsession represents a type of fear … that the patient wishes to avert at all costs,” an article published in Advances in Psychiatric Treatment said.
Sedley, who co-authored Stuff that’s Loud: A Teen’s Guide to Unspiralling when OCD Gets Noisy, defines OCD as having a distressing and unwanted thought, feeling or image, and feeling compelled to do something to take away that feeling. The compulsion might be cleaning hands, ordering things, avoiding playgrounds, praying too hard, going over in your mind all the evidence that you are not a bad person, or saying things in your mind over and over again. It is not always apparent.
If their OCD plants a seed in someone’s head that they might be a paedophile, they might avoid children, or stop driving past schools, Sedley said.
“They constantly check their physiological reactions when they see a child on TV, they go through past events in their lives. It’s really distressing. It’s mortifyingly embarrassing. They know they would never harm a child, but they keep thinking: ‘What if I do? What if I did it in the past and don’t remember it?”
OCD is a loop in which anyone can get caught, he says. You don’t need to be traumatised to get OCD. There may be a small genetic link, but it’s not because you have someone in your family who lives with OCD that you will get it, he says.
Opening up her worst nightmares
The good news is that there is an “incredibly effective” treatment, called Exposure and Response Prevention therapy (ERP). The bad news is, it is “bloody hard to access” in this country, even for those who can afford to go private, Sedley says.
ERP, a form of cognitive behavioural therapy, involves exposing patients to their fear or obsession, and helping them chose not to do the compulsion. Instead, patients wait for the anxiety to decline as they get used to handling the fear. If someone is scared of germs, they might gradually make contact with dirty things. If someone is scared of being a murderer, they expose themselves to the scary scenarios via scripts with their therapist and at home.
“Instead of trying to get rid of the thought, let’s have it. If you watch a scary film 50 times, sometimes it is still scary, but you are realising that your brain can handle and manage it,” Sedley says.
Research shows ERP is effective for OCD, with a success rate of about 70 per cent. Sedley has helped countless people get back to living a normal life with it. More traditional forms of talk therapy are not helpful for people who live with OCD, and can even make it worse, he says.
When Tse opens up about her worst nightmares in the therapist’s office, or on her couch for her “homework”, her chest tightens, her stomach clenches and her throat closes.
“I almost hold my breath out of fear. It is fear that consumes me first, then comes the panic straight after. A bad day is me crying on the couch and trying to get through it. A good day I can get up and cook dinner afterwards and not worry.”
After several months of weekly sessions, she is able to handle her OCD and live a normal life.
But it took her months, thousands of dollars and a bit of luck to find a psychologist with experience in ERP. She wishes she had not had to want to die to find out about “Pure O” and ERP. She wishes GPs knew more about OCD, and that people would stop joking about it.
“It’s debilitating and not something to be joked about at all. It is not a joke. It is not.”
She knows she is lucky to have the money to pay for therapy and worries about those who don’t have the same financial privilege. This is one of the reasons she chose to talk openly about her OCD.
“If you recover loudly, people need not suffer silently,” she says.
Effective treatment out of reach
Jennifer Eve has not been so lucky. The Christchurch primary school teacher was diagnosed with contamination OCD six years ago after a suicide attempt at age 18, but was told she was not severe enough to qualify for specialist mental health services. She can’t afford to go private.
Contamination is the better-known form of OCD. People who live with it have an overwhelming feeling of distress when they come into contact with substances, objects, people or animals viewed as contaminants.
At first glance, Eve is a happy, articulate and energetic young woman. She laughs as she lists the many visible compulsions her OCD dictates, repeating frequently that she knows they don’t make any sense.
If she doesn’t wash her hands and clean surfaces three times in a row, she has a panic attack. She is the only one in her flat who can wash the dishes, with a four-brush system. If someone else does it, she washes the dishes again. She has three mugs that no-one else can ever touch, otherwise she will not be able to use them again.
She has two showers a day, using the same products in the same order. If she skips a step, she panics and has to start over again. She counts words in conversations, which need to end in multiples of eight. At the end of each work day, she spends an hour deep-cleaning the classroom. She will skip her beloved nephew’s third birthday party because it will be at a trampoline park, which means germs and feet out of shoes, and she knows she won’t cope.
Eve doesn’t complain much about the compulsions, even though they are clearly time-consuming, tiring and limiting. But she loses her happy composure when she describes the distressing thoughts that come with the compulsions. Tears fill her eyes. She struggles to find the right words.
Her OCD tells her on a loop that if she doesn’t complete her cleaning routines, she or someone she loves will get hurt, get cancer, or die in horrible circumstances. Every day, she tries to shut down OCD thoughts telling her to harm herself as a punishment for failing to complete tasks. She never acts on those thoughts.
“I absolutely don’t want to die. Suicide is not an option for me, but it’s like a voice in your head that doesn’t stop, really. It’s exhausting.”
Eve’s flatmates, friends, family and colleagues all know about her OCD. But she keeps the terrifying thoughts to herself.
After her diagnosis, Eve was prescribed medication and referred to brief intervention counselling. The primary care intervention gives people in mild to moderate mental health distress access to six free sessions with a counsellor. Just as she was starting to make a connection with the counsellor, the sessions ended. After that, Eve went five years without accessing therapy, thinking she could manage.
But at the end of last year, the intrusive thoughts intensified, and she became unwell. She was referred again for the six free counselling sessions, made a bit of progress, and it was over again.
She can’t afford to continue the sessions privately on a teacher’s wage. Medication helps, but her OCD is still debilitating.
Her job (teaching 5-year-olds is a lot, germ-wise), and her flatmates (who are not the tidiest people) are an exposure therapy of sorts. She has learned to let go of things she can’t control, which has been helpful, she says. But she needs to understand why she has disturbing thoughts, what they mean and how to combat them effectively. And she can’t do it alone, or within six counselling sessions.
Despite the challenges, Eve remains positive. She has found support through a Facebook group for Kiwis living with OCD called Fixate. And just knowing effective treatment exists gives her hope, even if she can’t afford it for now.
A Ministry of Health spokesman says people with severe OCD do get referred for treatment by people trained in ERP, usually psychologists. It may also be provided by “other mental health professionals”, he says.
People with mild to moderate OCD can access immediate support in primary care at no cost, he says.
NZ College of Clinical Psychologists’ Paul Skirrow and OCD advocate Marion Maw beg to differ.
Because people living with OCD are not likely to harm themselves or others, they are usually unable to access specialist care, Skirrow says. Only the most severe cases get referrals, and even then they have to wait months to be seen.
Counsellors and the Government’s new 30-minute GP-based wellbeing service are unlikely to provide adequate treatment to people with complex mental health conditions such as OCD, he says.
Maw says people who live with OCD are commonly told they are not “severe enough” to get a specialist appointment, despite their real distress.
“My impression is that if you are managing to keep working or studying then that’s regarded as evidence that you’re ‘high-functioning’.”
The Government has dedicated funding to increase the number of psychologists getting trained, but it is going to take years to trickle down and is still far from enough, Skirrow says.
The Government has increased the number of funded psychology internships each year from 12 to 20, a ministry spokesman says. Professional psychology training takes at least six years.
Sophie* was so afraid she would accidentally smother her first baby that she stopped breastfeeding her after six days. The Bay of Plenty finance professional was so scared she might somehow accidentally sexually abuse her that she avoided nappy changes and bathing her at all costs. Intrusive thoughts waxed and waned for several months, but she was still able to cope, she says.
“When there was no other option and I had to change a nappy, I felt fear flowing through my body. I did it and locked myself in the bathroom afterwards to have a panic attack.”
Perinatal OCD affects about 1 per cent of women in pregnancy and 3 per cent of women postnatally, studies suggest. New parents with pre-existing OCD may find that their symptoms intensify, or start experiencing OCD for the first time after having a child. Compulsions range from staying up all night to check a baby is still breathing to excessive cleaning, to trying to shut down unwanted thoughts of harming their child.
With her second child, Sophie was able to keep her OCD at bay and about two years without much anxiety flew by. But when her children were 2 and 4, she went through a stressful patch and one repugnant thought unravelled it all.
“I was walking through my garage and thought – what if I abuse my kids? From there it snowballed into: What if that time they went to the neighbours’ house, they were abused? What if the babysitter harmed them, what if, what if, what if?”
The next day, Sophie was sitting on her bathroom floor, rocking and begging her husband not to go to work. She stopped eating and sleeping and lost 6kg in a fortnight.
Her compulsions included constant mental checks, praying, counting in her head and avoiding sharp objects and news stories.
“You read a story about a mum murdering her children, and then you just flip because how do you know you are not going to be that mum?
“You get stuck in this loop of trying to prove to yourself that you are not the thought that you are having. Everything seems like a warning sign, your body is in fight or flight constantly.”
Before going to her GP, Sophie rehearsed what she would say with her husband. How would she say she was afraid of harming her children without saying it? They were terrified the children could be taken away.
“I can only imagine how people who are already stigmatised as a minority would never seek help. If I am white, middle class and can afford therapy and I struggled, what hope can others afford?”
The GP told her it was generalised anxiety disorder and gave her a pamphlet about mindfulness. She went back three times but “they didn’t get it”, she said.
Eventually, she self-diagnosed with ‘doctor Google’.
“When OCD came up, I was like: ‘What? But I am not pedantically tidy’. I went back to my GP, and she said: ‘No you don’t have OCD because you don’t flick light switches.”
The GP gave her anti-depressants and told her there would be a three-month wait to see a specialist, before reminding her about mindfulness.
“I went private because I knew that if I didn’t get help within a matter of days, I wasn’t sure I would see through to the end of the week.”
That was four years ago. She had therapy twice a week at first, at a cost of about $200 a session.
Reading through the scripts detailing her most excruciating fears made her vomit and shake.
“I couldn’t have done it without someone helping me through it.”
After six months, she was able to function again. She then sought more specialised treatment in the United States via Skype and had weekly sessions for a year, at $450 a pop.
Within a year, she was living a normal life again.
“All we hear is talk, talk, talk about mental health. But if we don’t have enough psychologists in New Zealand, why are we not using experts from around the world?
Even if the mental health system is overloaded, simply knowing that you have OCD can be enormously helpful, Maw says. She would like to see more basic training for frontline health workers, midwives and school counsellors around OCD so they are able to recognise the possibility, so it can be further investigated.
*Not her real name.
More info on OCD:
Where to get help:
1737, Need to talk? Free call or text 1737 any time for support from a trained counsellor
Lifeline – 0800 543 354 or (09) 5222 999 within Auckland
Samaritans – 0800 726 666
Suicide Crisis Helpline – 0508 828 865 (0508 TAUTOKO)
What’s Up – 0800 942 8787 (for 5–18 year olds). Phone counselling is available Monday to Friday, midday–11pm and weekends, 3pm–11pm. Online chat is available 7pm–10pm daily.
Kidsline – 0800 54 37 54 (0800 kidsline) for young people up to 18 years of age. Open 24/7.
thelowdown.co.nz – or email firstname.lastname@example.org or free text 5626
Anxiety New Zealand – 0800 ANXIETY (0800 269 4389)
Rural Support Trust – 0800 787 254 (0800 RURAL HELP)
Supporting Families in Mental Illness – 0800 732 825