Kia ora, whānau, Zach here!
With both Suicide Prevention Day and Mental Health Awareness Week taking place this month, September is a time to be particularly mindful of the importance of good mental health – and of seeking support when things aren’t so good.
I reckon that it’s also a great opportunity to learn more about the wide variety of mental health struggles out there, which is what I’d like to talk about today. In particular, I’d like to discuss a woefully misunderstood condition which is both dear to my heart, and also something I deeply despise. I’m talking about OCD.
If you’re going to take away anything from this blog, let it be this: please don’t use the term ‘OCD’ in jest. That is, if you don’t have OCD, don’t describe yourself as being ‘so OCD’, having ‘OCD tendencies’, or otherwise misappropriate the term. I think I have good reason to request this; read on, and I will explain why in detail.
Obsessive compulsive disorder is a condition I’ve had the misfortune of living with since I was about six years old – young enough, at least, that I struggle to pinpoint the onset of my symptoms. Despite its profoundly damaging impact on my life, I did not know that I had OCD until age 18; and I did not seek help for it until age 21.
So why such a delay in diagnosis and support? The simple answer is that I was terribly misinformed on what OCD actually was. Because the world around me was, and remains, also terribly misinformed.
Think about it: what do you associate with OCD? Chances are that the images which flash into your mind include hand-washing and germophobia; cleanliness; perfectionism; and frustration when things are out of place. Describing oneself as ‘so OCD’, having ‘OCD tendencies’, or blaming ‘my OCD’ for wanting things to be neat and tidy, or having completionist desires is commonplace in the cultural lexicon.
All of the above can indeed be aspects of OCD. But they are only fragments of the full picture.
My roughly eight-year-old self thought the prospect of OCD was hilarious. I imagined a deeply neurotic and distressed individual, insisting that everything remain in order lest they snap. Part of me was rather keen to meet someone with OCD to experience the spectacle for myself. Little did I know that the acute mental distress I’d been subjected to, and the strange, lengthy rituals I had felt compelled to repeat for at least two years at this point was, in fact, OCD; karma was working overtime.
The problem with understanding OCD is that it can take multitudinous forms. The basis of the disorder is: experiencing repeated thoughts which cause distress (obsessions), and feeling compelled to engage in repetitive rituals (mental or physical compulsions) until the distress is alleviated. Since the human brain is so very complicated, this can take all sorts of odd forms – compulsions can be frankly ridiculous, and what they’re trying to prevent can be just as absurd. The factors which group all types of OCD together is the aforementioned obsessive-compulsive cycle, and the fact that, regardless of how absurd it may seem, it is always debilitating and distressing – hideous beyond words.
I don’t love the above definition, however. Accurate as it is, I find it to be abstract and hard to understand if you haven’t experienced it. So here are some clarifications that I’ve found more helpful:
- OCD is an intolerance of uncertainty. Nothing in life is guaranteed, and if there’s even a tiny chance that something bad will happen, it’s possible to develop an obsessive-compulsive behaviour towards it.
- Here are a few examples from my own experience: there is a chance that I, or someone I love, will die at any moment; to protect against this, I must avoid thinking certain ‘dangerous’ thoughts. Similarly, given that results take such a long time to show up, there is little certainty over whether I’m exercising ‘enough’ or eating in a sufficiently healthy manner – thus, my diet must be strictly regimented, and my exercise routine extensive; at the same time, I must seek reassurance from those around me that I am doing ‘enough’ to stay fit. I cannot be certain that I put my phone and keys in my bag before I left the house, so I need to check repeatedly that they’re there.
- OCD often occurs in people who have a heightened sense of responsibility; they feel that it is their duty to prevent harm.
- People with OCD often experience repeated, distressing thoughts (which also may be outright disturbing or otherwise in opposition to their moral code), which they feel unable to control. Indeed, another risk-factor for OCD is a tendency to overestimate the importance of thoughts – e.g., believing that thinking about something means it’s going to happen, or that thoughts must always reflect your values.
- People with OCD are also very prone to ruminative thinking: spending an excessive amount of time digging into a certain thought or action. For example, because a chunk of my OCD behaviours are related to death, I will regularly spend a long time speculating about how and when I’ll die, all of the painful ways in which it might happen, what will come after, what it might be like to be dead, what it’ll be like when my loved-ones die, and so on. This speculation is driven not by curiosity, but immense anxiety and fear.
- People with OCD engage in rigid, repetitive rituals. These can be physical (checking repeatedly, handwashing, doing something a certain way until it feels ‘right’, having strict rules for a process to which they must adhere), or mental (repeating words or phrases, replaying past conversations or actions to ensure that no harm was caused, counting, monitoring oneself closely for physical or mental reactions to a distressing stimulus). These rituals can take a long time, potentially eating into other areas of life. Because these rituals are in place to prevent something bad from happening, a person with untreated OCD will feel as if they have no control over the performance of these rituals – even if they’re interfering with other parts of their life, or they find them otherwise distressing.
- Perhaps most importantly, OCD is ego-dystonic: the way it causes people to act is at odds with the way they want to act. It’s possible for a person to be organised, tidy, neat, and a perfectionist, without them having OCD. What marks OCD apart is the distress incurred by the unpleasant thoughts which create a need to engage in rituals; potentially these rituals themselves; and the inability to stop the OCD behaviour, even if the person wants to.
What’s surprising about OCD is that, despite the distress it causes, someone with OCD may be completely unaware of its negative impact on their life. I realised that I had OCD after reading about others’ experiences online; this was then verified for me when I reached out for support after I started having horrendous intrusive thoughts which would take up hours of my day. Once this latter issue was solved, however, I disengaged with professional support and felt content in my position. I described my OCD as ‘mild’, and even ‘positive’; I liked that it made me organised and disciplined. It meant that I exercised a lot, ate very healthily, got excellent grades, and stuck to a productive routine.
It wasn’t until I started seeing a therapist late last year that my perception changed. Over time, she helped me to understand that my OCD was far from mild – it had seized full control of my life. I had multiple untreated injuries and was perpetually exhausted from the exercise; my sugar and cholesterol levels were too low, and I was struggling with low energy availability (a condition resulting from exercising excessively without eating enough to replenish bodily needs, which can lead to severe health issues if not combatted); I sunk endless hours into my studies, unable to stop checking and rewriting assignments; I was neglecting interpersonal relationships; and I was engaging in many, many behaviours and rituals which I didn’t even recognise as being problematic or related to OCD.
There were multiple reasons why I was unaware of how damaging my OCD was for so long. The first is that it’s an incredibly sneaky disorder. What it wants most is to have full control over every moment of your life – and it will achieve this by any means possible. As a child, I felt that I couldn’t share any of the obsessive thoughts which drove me to engage in the compulsions I had at the time, because OCD had me convinced that telling others would make these thoughts more likely to come true. When I started having extremely disturbing obsessive thoughts at age 19, OCD tried to convince me that I couldn’t share them, because people would assume that these thoughts reflected my values and be disgusted by me. When those thoughts were treated, OCD convinced me that my condition was mild and easily self-managed. Even now I’m working on wresting back control, it fights back at every stage, constantly trying to convince me that I’m headed for my doom.
The second is that there is not only a poor understanding of OCD amongst the public – there is also poor understanding in the surface-level medical world. By ‘surface-level’, I mean that, while there are professionals with an excellent, in-depth understanding of OCD, medical definitions and descriptions tend to be simplistic and surface-level. I read through symptom list after symptom list on webpage after webpage; none acknowledged the ways in which my OCD manifested – at least, not in a way I could understand. The average symptom list mentions the obsession and compulsion cycle I described above, and mentions symptoms such as excessive concern with hygiene, disturbing taboo thoughts, and needing things to be arranged in a certain way – none of which was a major problem for me at the time. Sure, I’d had such behaviours in the past, but now my experience was benign.
Since I didn’t see myself in the descriptions of OCD, I figured I was doing rather well. It was only when my therapist showed me a more holistic way of identifying OCD behaviours (i.e., ‘am I doing this because I want to, or because I’m trying to alleviate anxiety/distress?’, and ‘how would I feel if I couldn’t do this?’), that I began to be able to recognise the many ways in which my mental illness controlled me. There are still times when I’ll suddenly realise that a behaviour of mine – past or present – can, or probably can be attributed to OCD.
The third and final reason is that my most conspicuous compulsions are not just socially acceptable, but admirable. A person who is observed washing their hands repeatedly, for example, causes concern amongst others: this is clearly damaging behaviour. But exercising excessively, eating a very restrictive diet, and getting fantastic grades (or otherwise being overly perfectionist when completing work) are highly-praised behaviours. I have never come across a medical problem to which exercise and/or a healthy diet weren’t suggested as an important solution (seriously: even a webpage I read about concussions suggested exercise as a way to increase balance and thus avoid concussive injuries in future). Moreover, I received an endless flux of compliments: on my body, my dedication, my ability to lift immensely heavy weights, my healthy diet, my academic ability. These not only reinforced my conviction in the idea that I was engaging in highly positive behaviours, they also made me wonder: ‘what would people think of me if I were to stop? How would I shrink in their esteem?’
This final reason is part of a wider conversation on the problematic way in which we perceive health, fitness, and weight-loss, but I digress.
When I think back to my experiences as a child: so often feeling overwhelmingly scared and alone, put through compulsion after torturous compulsion, I often get angry. I wish there had been a better understanding of OCD. I wish someone had noticed, and I could have received help at an early stage, before this mental disorder took over my life and I forgot how to live without it. I wish someone had told me what OCD actually involved, and even asked whether I had experienced any such symptoms. I wish that someone corrected me when I misused the term.
That said, there is no blame to place for how things turned out. No one could have been expected to guess at what I was experiencing, because I was excellent at hiding it. I am, in a way, lucky to be receiving treatment now, while I’m still young.
The past cannot be changed, but the future can. Mental health has penetrated the realm of social acceptability and understanding, and it’s about time that problems other than anxiety and depression were discussed (although those, too, deserve their place). I write this piece not to lecture anyone, but in the hope that it may spread a bit of understanding on what OCD’s really like.
And so, I return to my initial request: please don’t use the term ‘OCD’ in jest. There are plenty of alternatives, depending on the context: perfectionist, completionist, organised, neat, having aesthetic preferences.
I ask this, because inappropriate use of the term:
- makes light of something which ruins lives and causes extreme distress
- makes it harder for people with OCD to talk about their experiences (how do you make it clear that you’re talking about actual OCD? Are people going to take you seriously, or think you’re making a joke?)
- contributes to a general misunderstanding of what OCD is, which can, in turn, hinder people from recognising actual OCD. It’s disturbingly common for people with OCD to go years, or even decades without seeking help.
- is actually inaccurate! Many people who have OCD are also disorganised, messy, and couldn’t care less about things looking aesthetically pleasing. Conversely, many people who do have these traits don’t have OCD.
If you’re willing to make this change (assuming you used OCD like this in the first place), thank you.
I also ask that you consider calling others out on their usage of the term – making sure (if you don’t know) that they don’t actually have OCD first and were genuinely referring to their condition!