- OCD is not just about symmetry and tidiness.
- We don't "all do that a bit sometimes," and it's not "just a phase."
- OCD requires clinical treatment, not reassurance or collaboration.
- Visibility does not equal severity.
One of the things I'm most regularly asked about OCD (obsessive-compulsive disorder) is how old I was when I first developed it. The truth is, I'm not sure. Obsessions and compulsions plague my earliest memories, to the extent that for the longest time, I thought everyone thought like this. It's perhaps surprising, then, that I didn't receive a diagnosis until I was 16.
The thing is, growing up with OCD can often be lonely and frightening, but it's all the more difficult when the adults around you don't know how best to support you. In this spirit, here are four things I wish the grown-ups in my life knew about OCD when I was a child:
1. OCD is not just about symmetry and tidiness
OCD is a complex mental illness that is often misunderstood—in part because of the multitude of ways it can present. When someone has OCD, they experience obsessions (unwanted, intrusive and often distressing thoughts, images or urges), followed by the feeling that they need to perform a compulsion (an action, either physical or mental, that "neutralises" that obsession). Stereotypes around the disorder have meant that both the public and clinicians often misunderstand that obsessions and compulsions can centre around almost anything, rather than exclusively being about contamination and order. As a child, I would have distressing intrusive thoughts (obsessions), such as that I wanted a family member to die, and perform mental compulsions, such as repeating a special phrase to stop that from happening. But no adults I tried to confide in recognised this as OCD.
2. We don't "all do that a bit sometimes" and it's "not just a phase"
When I did try to talk to adults about my intrusive thoughts and worries, I was often told that "everyone gets those thoughts sometimes." In a sense, this is true—most people tend to acknowledge having bizarre thoughts or images enter their minds from time to time, such as "What if I pushed that person on the train tracks?" or "What if I start swearing in church and I can't control it?" The difference is that not everyone becomes completely obsessed with those thoughts. Most people recognise the thoughts as random and ego-dystonic (not representing their values and beliefs), and simply dismiss them. For the person with OCD, however, these thoughts can become an all-consuming and severe mental illness.
This difference is key and is why it's not appropriate to dismiss children's intrusive thoughts as something that 'everyone experiences' that don't require further discussion or support. Despite this, parents and caregivers will put down their children's behaviours to it "just being a phase." In general, OCD tends not to go away on its own and can often worsen and persist into adulthood without treatment. Early intervention can be key to making sure compulsive behaviours don't become entrenched. The most effective treatment for OCD is Cognitive Behavioural Therapy (CBT), specifically Exposure Response Prevention (ERP).
3. OCD requires clinical treatment, not reassurance or collaboration
When your child is worried about something, it can be very painful to watch. Many parents will therefore instinctively and repeatedly reassure their children that whatever they are worrying about is not going to happen, and will sometimes take on the role of doing compulsions for the child (for instance, "I will be the one who checks ten times there is nothing bad under the bed so that you don't have to").
But performing my compulsions for me is not as helpful as you think. The problem is that, while compulsions (whether performed by us or our caregivers) and reassurance do provide an amount of immediate relief, they perpetuate a toxic cycle of feeling we always need to respond to anxiety, keeping us stuck in a constant state of fear. The key to working with OCD is starting to challenge the obsessional content. So, while it generally arises from a place of love, colluding with a young person's OCD can create an unhelpful cycle.
4. Visibility does not equal severity
Shortly after receiving my diagnosis, a teacher I trusted tried to reassure me that I would definitely be okay because they knew a student at their previous school who had OCD that was "so much worse than yours—and she was able to get better!" She preceded to describe a student with obsessions centred on contamination who would place newspaper down on her seats to avoid direct contact, and wore latex gloves at all times. I know my teacher meant to be comforting, but her comment felt so invalidating. Here I was, struggling with a mental illness that was so painful I no longer wanted to exist but according to her, someone else had it worse!
It's important to remember that the severity of someone's mental illness cannot and should not be measured based purely on how they visibly present to you. Many of us are fighting battles in our heads that you couldn't begin to imagine. What we need is compassion and the willingness to listen to and learn about our experiences.