I recently received a lovely email from Mary* in relation to an article published in this series. Mary congratulated me on encouraging open and positive discussion about mental health in the workplace, but she queried whether the author of a recent article knows what it’s really like to experience the mental distress of Obsessive Compulsive Disorder (OCD). The article “Why it’s time to stop dealing with mental illness and start building mental strength” (issue 940, June 2020) referred to tennis player Rafael Nadal’s “…almost OCD approach to maintaining order in his environment prior to and during his match” as a technique to boost performance.
Mary pointed out that referring to OCD lightly can downplay the mental distress that underlies compulsive behaviours and can discourage people from being open about it. She mentioned hearing people talk about “needing to be OCD” with washing their hands due to the spread of Covid-19. This sort of remark can thoughtlessly perpetuate a stereotype that dilutes the seriousness of OCD.
Mary’s email got me thinking. How many times have I inadvertently used the term “OCD” without thinking about the distress that OCD causes? What do I really know about OCD?
In this article, four fabulous members of Fixate, a Facebook-based group for New Zealanders with OCD and their supporters, share some of their experiences to help us try to understand OCD better.
These stories challenged and reshaped my knowledge of OCD. It’s a misunderstood condition and it’s certainly not just about compulsive cleanliness and hand-washing. Flippant use of the term “OCD” can dilute its seriousness and create barriers to openness, treatment, and recovery.
I’m very grateful to Geoff, Jane, Anna, and Mary for having the courage to share their stories, and a big thank you to Mary for co-ordinating all of them. Kia kaha arohanui.
*Names have been changed to respect the privacy of these individuals and their families.
OCD bombarded my mind with unwanted thoughts
OCD is made up of two parts, obsessions and compulsions. The way I think of obsessions is that they are a broken warning alarm in the brain that won’t turn off. The obsessions warn you about something and the more you fight them, the louder that they continue to warn you. The compulsions are the short-term fixes you do to try to stop the warnings but you never really fix them.
OCD has spent years warning me that I could purposely harm my wife, my children or myself. It has done this by bombarding me with intrusive images and thoughts that would fill the worst horror stories ever written. Believe me when I say that doing any of this is not only against all of my values but also not something I have any desire to do!
I now understand that everyone has random disturbing thoughts that come into our minds without invitation. These are called intrusive thoughts. For most people they are usually quickly forgotten (think of them as junk mail). In OCD, an intrusive thought gets stuck in your mind, and you begin to obsess over whether it could be true and that you might do something that goes against your core beliefs. Feelings of anxiety, fear and disgust mean that you are compelled to take action, in the hope of gaining relief. But this is a major mistake because it actually reinforces the obsession, and you get drawn further in.
One of the hardest parts about OCD is the feeling of shame associated with it. OCD thrives on shame! It tends to pick subjects that matter the most to people. Common themes include contamination, harm, sexuality, relationships, morality and religion.
For a decade I lived in fear, not knowing why I was having these intrusive thoughts. When it started to get really bad, at the time of the birth of our first child, I sought help. Despite seeing various health professionals, it took another five years and a Netflix documentary for me to stumble on a clear explanation of what was going on.
The great news is that it is possible to recover. It effectively means reprogramming the brain, which takes time and commitment. The first step is to expose yourself to feared thoughts or situations to bring down the associated anxiety. For me this means writing scripts about thoughts of harm and reading them over and over again until the level of fear is reduced to boredom. The second part is to teach the brain not to engage when intrusive thoughts pop up, whether by arguing, debating or ruminating. A psychologist put it to me that OCD is like a criminal lawyer that constantly tries to discredit the witness, the answer is to not take the bait, instead plead the 5th and not respond. Little by little the brain is reprogrammed to not give out these false warnings, this involves accepting the thoughts but giving them no energy.
All of this has taken time, effort, and commitment but day by day I am recovering from OCD. I have had to learn and accept that OCD is part of my DNA and will continue to arise throughout my life. This acceptance is what gives me the ability to sit above the storm when it does arise.
I needed constant reassurance that our baby was okay
My first experience with OCD was when I was pregnant. Looking back, I probably had signs of it growing up but nowhere as full on as it was during pregnancy and after.
During the pregnancy we didn’t really know what was happening. It started when I was following the guidance in pamphlets given out to new parents which specify what foods you can and can’t eat. Slowly that list extended to add more foods that I couldn’t eat and certain ways that items needed to be cleaned before they could be used.
At my peak I would eat only one meal a day because it took 3-4 hours to prepare something to eat. I couldn’t eat away from home for fear of contamination. I don’t know how I thought this was normal, but it all happened so gradually that I just assumed it was. Finally, one night at about 11pm I ran out of the house anxious about food that I had eaten and experienced my first panic attack.
My partner and my midwife knew I needed help. I was referred and quickly seen by maternal mental health services. By this time, I was eating limited amounts of food and they were worried about the baby not getting enough nutrients.
When I first started treatment it was very hard to accept the help. I did exposure therapy and mindfulness techniques, agreed to medication and saw a dietician. It was very tough to accept medication and to eat more because it involved a mental battle that went against all my urges – the fear that the baby would die if I did these things was always on my mind.
OCD is something that is in your head and it is very sticky. It is the most time-consuming thing I have ever experienced. My fears about food and germs are less now than they were before. I still have my triggers and times when OCD starts to rear its head again, but over all I have come a long way.
Recovery from OCD required that I accept uncertainty
Most students are comfortable in their decisions regarding morals and ethics. When doing assignments, they reference sources because it is required. They do not triple-check their browser history to ensure they have listed every single website and blog post. They do not feel guilty if they jay-walk across a quiet intersection.
Studying for NCEA and university papers was completely different for me. My intrusive thoughts were spinning the narrative that I had to be morally perfect. The rules and regulations, whether unequivocally stated in course outlines or mentioned in a few imprecise sentences tacked onto the end of an assignment, routinely led me into a spiral of querying, doubt and fear.
For me, the exclusion of written material from the exam room did not apply solely to notes. I would make sure that none of my clothes had brand names on them. I would also isolate myself as much as possible before a test, so I wouldn’t hear anything at all about it from an earlier test stream.
Even at the time, I knew how ridiculous these behaviours were. But when I was caught up in hours of ruminating and months of tears and despair, it was too difficult to pull away. The intrusive thoughts in my head were telling me that if I relaxed for just a moment, I would be doomed to an existence as a liar and a cheat.
Exposure Response Prevention therapy and medication has reduced the frequency and intensity of my obsessions and compulsions. I have learned to accept that uncertainty is a part of life and that uncomfortable emotions can be tolerated. The tension and physical unease that accompany obsessions and triggering situations still bother me on occasion. But I am so thankful for the progress that I have made.
Despite the unique challenges that my OCD presents, I have continued to study full-time at university. I have energy to put into a part-time job and living in a flat.
Mary*, Anna’s mother
We can and must do better to support families
We don’t know why one person experiences OCD when another does not. As a family you become entangled in a son or daughter’s mental distress and compulsive behaviours, scrambling to find information and a way forward.
By the time of diagnosis, our teenager’s everyday life and ability to pursue her educational goals were severely disrupted. We decided to seek a private therapist with expertise in treatment of OCD. We were fortunate to be able to afford this option; weekly appointments for about four months came to several thousand dollars.
Our daughter is now flying solo, equipped with an understanding of OCD and how to manage it, and an acceptance that this is something that will be a part of her life. As a parent, I am proud of her courage and resilience.
I was surprised to learn that OCD often first develops when someone is quite young – a child or adolescent. Moreover, it is also more comment than I thought – about 1% of people live with OCD.
The mental distress and the loss of enjoyment of individual and family life that we experienced were largely unnecessary. OCD is a form of mental health impairment. It need not be a disability. As a country, I believe New Zealand can and must do better, including ensuring that our frontline health professionals can recognise OCD in whatever form it takes, and that more clinical psychologists are trained in OCD treatment.
It would help if everyone had an understanding that OCD is a form of mental distress. It is time people stopped joking about “being OCD” and started supporting the many individuals and families who experience this condition.