OCD is the butt of a lot of jokes, but the reality of the condition can be far more distressing than people realise. Here four women tell their stories of obsessive compulsive disorder.
Warning: This story contains discussions of suicidal thoughts.
Depicted in popular culture as the disorder of cleanliness, obsessive-compulsive disorder (OCD) has a real branding issue – and it contributes to misunderstanding of a quite common experience of mental distress. Jokes about cleaning and tidying, germs and strange repetitive habits dominate conversations about OCD., but the reality of living with it is very different.
Recent studies suggest around 87,000 New Zealanders live with OCD, but only a minority of these people are accessing peer or clinical support for it. In some cases diagnoses are made early, but others spend years of their life trying to find the reason for their persistent mental distress or trying to access effective treatment.
Everyone has intrusive thoughts. The small, unwanted ideas that pop into your head without warning. For most people these thoughts are easily forgotten, but for a person with OCD, the thoughts get stuck. Fears of failure, sickness, injury and many other negative ideas become impossible to ignore without the right tools, but accessing those tools requires specific therapies that are hard to access in New Zealand.
Here, four women – two mothers of children with OCD and two who have the condition themselves – explain what it has meant for their life.
Anna and Sarah*
Anna’s daughter, Sarah, was nine years old when she started showing symptoms of OCD. Living in a rural Southland community, Anna’s family had already been through the mental health services once when their middle child developed an anxiety disorder, then Sarah began to confide her fears about attending school.
“She started to say things to me like ‘I feel like something bad is going to happen, Mum,’ and ‘I don’t trust the adults at school’,” says Anna.
It wasn’t until Sarah stopped eating and was losing weight that the family managed to get an appointment with a social worker. That appointment led to an assessment with a child psychiatrist where she was given diagnoses of separation anxiety, social anxiety and OCD traits.
From that point, Anna and her husband James struggled to get Sarah to go to school. The family was assigned a resource teacher for learning and behaviour who tried to help the family get Sarah back to school, but Anna felt there was a more important goal.
“Ours was to figure out what was happening and get treatment. I got to the point where there were only a couple of weeks of school and I said, ‘Darling, if you’re not up to it, don’t go.'”
Now in year seven, Sarah’s particular form of OCD manifests in obsessive thoughts about contamination, which leads to compulsive hand washing and being fearful of passing germs on to others. She has ponies that she loves taking care of but Anna says it’s difficult for her to do so when a compulsion takes hold.
“She would come home from school and curl in a ball and not be able to ride or touch her ponies because she feared that she would contaminate them because she was contaminated from her day at school.”
The pandemic would seem to be a particularly challenging time for a child living with contamination OCD, and Anna says in many ways that was true, but the last year hasn’t been consistently hard. Sarah found living and learning from home during lockdown far easier than from school.
But when school went back she found her intrusive thoughts and compulsions were still less acute. There were fewer triggering situations as social distancing was mandated, hand sanitiser was abundant and bathrooms were designated by classroom to ensure only a small number of students were using each facility.
For Sarah’s family, the toll of OCD has been palpable. Anna and her husband have considered moving closer to wider family in Christchurch for support but are wary of making Sarah feel guilty about the shift.
“My child is intelligent enough to know the reasons why we would do that, and I think she would beat herself up about that. It would be a setback in itself,” says Anna.
Anna thinks there needs to be more emphasis on family wellbeing in situations like hers. “Anything a child is going through is affecting how the family functions and the stress levels in the family… Towards the end of last year I needed help.
“There’s a massive and exhausting load when caring for a child with an often unseen and misunderstood illness. There is little time to take care of oneself and the emotional toll is huge.”
Jenna wasn’t diagnosed with OCD until she was 31 years old. As a child, she began performing compulsions and complex rituals because they gave her a sense of control and safety, but it wasn’t until she was 16 and began to self harm that she was first referred to a mental health service; she was 20 when she was first diagnosed with a mental health condition.
“I started seeing counsellors and psychologists and the stuff that they would do with me was standard talk and CBT therapy, and it seemed to help a little bit but not for long, and that happened over and over again. I got to the point where I was feeling beyond help.”
Mental health professionals had initially identified Jenna’s depression, but therapy didn’t bring improvement. In her mid-20s she was also diagnosed with general anxiety disorder. Despite doing all the things she was advised to do, nothing got better.
During that decade of trying different treatments for depression and anxiety disorders, she cycled through around 10 different mental health professionals and suicide crisis services. Then, just two years ago, Jenna was finally given the answer she had been looking for. A dangerous combination of depression and OCD was what she’d been dealing with, unknowingly, for all that time.
OCD often manifests itself in different ways over time. Jenna has sometimes been fearful that her husband might have cheated on her, despite no evidence to suggest this is true; other times she has been petrified by intrusive thoughts that she’ll hurt herself. She has hoarding tendencies – she has trouble letting go of objects she’s worried she might need – and issues with potential contamination remain a challenge.
Coupled with suicidal thoughts brought on by her depression, Jenna’s self-harm OCD was particularly hard to fight through.
“I got so desperate that I thought I would give it another shot because I was terrified that the next time I became suicidal would be the last time. My psychiatrist gave me the name of a psychologist to see and I went in and this private psychologist finally recognised OCD. Within a few months of appropriate therapy, my life began to change.”
Jenna recalls the phone call where she finally was able to tell her mother about her condition. The immediate reaction? “But you’re a really messy person!”
OCD can be confusing for those who only know about it through on-screen depictions involving hand-washing and checking doors are locked and lights are off. While this is the reality for some, it’s not the story for all people living with OCD.
“Harm OCD for me was mostly around the fear that I was going to kill myself or self harm,” says Jenna. “I started hiding things around the house that were sharp, I started being over vigilant and getting my husband involved in compulsions by asking him to watch out for me.”
Jenna is thankful she has now found a diagnosis, and with it, the right treatment. Until that happened she was convinced there was nothing that could help her. It turns out she and the professionals around her had been looking in the wrong places.
Now Jenna is at a stage where she can mostly self-manage her compulsions. She still sees her psychologist and is on medication but says things have become a lot easier with regular therapy. Luckily for her, she can afford the appointments she needs to stay on track, but says a lot of people aren’t as fortunate. Jenna believes there needs to be better support in place before mental distress gets to crisis level.
At around 11 years old, anxiety was already getting in the way of Laura living her life. Symptoms of OCD and other mental illness had begun to manifest and by the time she was 13, she had attempted suicide. Throughout the rest of high school, Laura had regular encounters with mental health services, and for the next 15 years her mental health problems were treated as generalised anxiety and depression.
Following the birth of her daughter in late 2019, Laura felt something shift. She started sensing herself going downhill again.
“When I had my daughter, right from the day she was born I really struggled with what would be termed perinatal harm OCD. I had concerns that I was going to harm her and was constantly checking that I hadn’t.”
During the worst of it, the fear got so bad that Laura placed her child in her mother’s care for a couple of weeks, only visiting when she felt up to it. There were days she feared it would be unsafe to be in the same house as her baby daughter.
“The main way it manifested, and this sounds horrible, but I was doubtful [worried] that I had stabbed her and didn’t remember doing it. I would go in when she was asleep and undress her and look for stab wounds that weren’t there. I’d do it and be relieved that they weren’t there but then 20 minutes later think ‘well, maybe I’ve done it in the last 20 minutes and forgotten about it’ and so I’d go back and check.”
Laura says she’s lucky that a psychologist told her soon after giving birth that perinatal OCD was not uncommon. Otherwise she doubts she would have told anyone how she was feeling.
“I can sit here and say that it’s ridiculous, but when you’re in the moment you wouldn’t speak about it because you would assume that someone would misinterpret and come and take your baby away from you.”
Alongside perinatal harm OCD, Laura also deals with contamination OCD. She says Covid-19 has helped make some of her compulsions seem less out of place as the collective mindset has moved towards social distancing and hand washing, but overall it hasn’t been an easy thing to navigate.
“I finished my masters at the end of last year but I didn’t go down to my graduation ceremony because I was so afraid that I was going to be patient zero in some sort of super spreader event. From that perspective Covid has been difficult, because it’s given my OCD another thing to cling on to.”
She hasn’t dealt a lot with people misunderstanding her OCD, but says that’s mostly because it’s not something many people know about. And when people do, it’s sometimes hard to deal with the constant feeling that they’re treating her with kid gloves.
“My mum, in an effort to support me, won’t challenge me on things. She doesn’t want to upset me or make me feel guilty but then you end up feeling guilty that people are tiptoeing around you.”
Laura wants people to know that with OCD, as with any form of mental distress, kindness and patience goes a long way.
“Assuming that people are doing their best and having a bit of compassion for people always helps. I think the more we talk about it, the more people will understand how harmful it can be to flippantly say ‘I have OCD,’ because they cleaned their desk.”
Marie and Connor*
Marie clearly remembers realising her son needed help. Living away from home in his third year of university, Connor had suddenly become reclusive; his flatmates were increasingly worried. Then she got a phone call.
“It was about halfway through the year when he called us sounding really confused and not functioning and he hadn’t slept in a week.”
Marie dropped everything to go to her son, and accompany him to an emergency psychiatric service at the nearest hospital. Within two hours, the specialists were confident that Connor had OCD. Marie says they were lucky to get a diagnosis so fast.
“We were a bit gobsmacked because our knowledge of OCD meant we thought that was obsessive thoughts about contamination or repetitive behaviours or checking behaviours. [The psychiatrist] explained a little bit about OCD and that they’re intrusive thoughts which get stuck. Those disturbing thoughts can be any kind of nature and the compulsions might not be physical.”
For Connor, the compulsions were mental, not physical. He worried that he was doing things wrong, worried about breaking rules or disappointing others or that he would do something wrong in the future.
Marie quit her job to look after Connor and he dropped out of university. Soon he was referred to a crisis resolution centre and from there to a mental health service where he had psychiatric care and psychological treatment.
It was only when Connor went on to Exposure Response Prevention (ERP) therapy with a private clinician experienced in OCD that real progress was made. Developing ways of coping with his intrusive thoughts was absolutely key for him, but it’s something he’s going to have to keep working at.
“There is a path forward and it is something that he will possibly have to live with, but you can develop tools and strategies to use when it raises its head.”
One important way of helping Connor deal with his intrusive thoughts is to not feed into them. Marie says the whole family has to be cautious about giving him reassurance when he is asking for it, knowing that these questions are driven by OCD.
“He might ruminate a lot about something he thinks he might do. The reassurance seeking is huge so he might ask, ‘Are you sure I didn’t do that? Do you think I might do that?’ and we learnt that giving that reassurance is just feeding the OCD. It’s feeding the cycle.”
Marie has since become an advocate for OCD awareness. She developed and helps run the ocd.org.nz website and is an admin for a Facebook group for New Zealanders and families living with OCD. She’s come across many misconceptions about the effects of OCD, which are often far more serious than the stereotypes that abound.
“People don’t really have an understanding of what it is, that it can be a debilitating condition that can impact people’s lives. [People with OCD] can be so ashamed of their thoughts and their compulsions that they hide them and think they are the only ones with this, so it can go undiagnosed for many years.”
For the 1% of people living with OCD, flippant comments about the condition can be hurtful, she says.
“People sometimes say things like, ‘I’m a bit OCD today, I put all my shoes in the right order and cleaned my room’, but if you’ve got OCD the thoughts take up hours and cause compulsive actions. People trivialise it as being quirky or funny or some kind of odd behaviour but they don’t understand the daily struggle that some people live with.”
After the six month hiatus with targeted therapy, Connor returned to full time study and now works part time to support himself. He has moved out of home and reclaimed his life.
Marie is hopeful that by advocating for OCD awareness and telling their stories, more attention can be given to early diagnosis, ensuring the right treatment is provided and that access to that treatment is made available for everyone.
*Names have been changed to protect privacy
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)
Lifeline – 0800 543 354 (0800 LIFELINE) or free text 4357 (HELP)
Youthline – 0800 376 633, free text 234, email firstname.lastname@example.org or online chat
Samaritans – 0800 726 666
Shine (domestic violence) – 0508 744 633
Women’s Refuge – 0800 733 843 (0800 REFUGE)
OCD NZ – resources and help for those affected by OCD
Subscribe to The Bulletin to get all the day’s key news stories in five minutes – delivered every weekday at 7.30am.