In this episode:
Venessa: OCD often starts early in life, but it doesn't always look the same as you grow up. Jay, can you take us back to your childhood? What were the earliest signs of OCD?
Jay: Probably when I was around nine years old. I had quite a... doing a lot of different compulsions. I had one especially, where I used to have to put my arms around my back like that, and it was like a just-feel-right kind of OCD. And I couldn't really explain why I did that, but it's just something I had to do.
And then as I got a little bit older, I had a lot of checking compulsions, like checking my curtains, the windows, doing it six or seven times to make sure no one was going to get harmed, to keep my family safe. So, in my head, if I did those things, it meant no one was going to break into my house and kill my family. So I'd say those ones were quite prominent as a child.
Venessa: So, you gave an example of one as you got older, but how did your symptoms change as you got older?
Jay: They got more extreme. Year seven of high school, that's when they did get more extreme with the harm OCDs. I might think, "My step-dad's going to kill me in my sleep, so I've got to get out of my bed and check my windows," or do whatever compulsion it was.
And magical thinking, where I'd think, if I don't do something, a plane's going to come out of the sky and crash into my house and kill my family. If I'd seen something on the news or on TV, it would trigger me, and then I'd obsess over that.
Venessa: So, Peter, what are some of the early warning signs of OCD in children that teachers or parents might miss?
Peter: Yeah, there's lots of things that people can often struggle with, a little bit like what Jay was saying. Sometimes the need to repeat things over and over again, or when they're looking for lots of reassurance about something.
So, they might ask if something is okay, if something is right, is this the proper way to do things? Is this the correct way that things should be organised?
And doing things multiple times and needing that kind of reassurance. One of the things that often gets missed is that not only will young people, children, start doing things in a very particular way, needing to do things in a particularly organised way, so they might need to get dressed in a certain order, put on certain items of clothing first before others, walk a certain way, touch things in a certain order, or eat foods in a certain pattern.
But they'll often do these in a very repeated fashion and do them in a very particular way over many days.
And so, one of the things that often gets missed is that people can often notice that young people are doing things repeatedly, or notice that they're asking for reassurance, or notice that they always do things a certain way, and not see that it's being done, just as Jay says, because they're thinking to themselves, "If I do these things, then that's the right way to do it, and if I do it the right way, then that stops bad things from happening."
Venessa: Yeah. Jay, can you connect with any of that?
Jay: Yeah, definitely. With the ones that I had, with the checking, with the taps, with the light switches. My mum always used to say to me, "Jamie, why are you doing that with the tap? Why do you keep turning it on and off?" And she'd question it, but she didn't understand why I was doing those things. It's only as I got older where she understood.
I used to do a lot of masking, to be honest. So, how I was at home when I was doing all my compulsions, the physical ones, like the checking, the touching things, at school, I wouldn't do any of them. So, I'd hide them all.
So, they'd be more mental rituals, where I'd be counting and going over conversations, words in my head, counting how many people are on my team at football, at dinner, and who's on my team, and going through the list of names.
My friends wouldn't have known that I had OCD, because obviously I didn't want them to know what I was going through. So, I think when I got home, obviously, that's where I probably let it all out. Especially before going to bed, that was probably my most anxious time.
So yeah, I think I still do it today, but obviously looking back, I did that a lot. And because people didn't know what OCD was, you're scared of people saying nasty things to you, aren't you, so...
Peter: I think that's a really important point that Jay was making, that a lot of compulsive behaviour goes on inside the person's head. It's not the physical stuff on the outside.
People typically think of compulsive behaviour as being washing, checking, avoiding things. But a lot of it goes on with people counting things, seeing things, repeating phrases in their head, reassuring themselves, remembering things from the past, imagining things in the correct way in the future, in a way that someone could be doing at any moment and you wouldn't know that they were doing it.
And as Jay was saying, there's a lot of trying not to be seen doing this kind of behaviour because people will ask questions about, "Well, why do you keep doing that? Why do you keep repeating this? Why does this keep happening?"
So, people will often act differently in different times and spaces and places.
Venessa: So, looking back, were there things you didn't recognise as OCD at the time?
Jay: Yeah, all of those things, to be honest, because I didn't know what OCD was. Like 20-odd years ago, there wasn't the education that there is, or the accessibility to go online and research and find out what it is that's going on.
It was only until I actually came across something myself, learning, doing my GCSEs, that I saw something on a message board, and that's the only realisation that I had that, oh yeah, that's something I relate to.
Venessa: Could you tell us a bit more about that?
Jay: Yeah. So I was revising for sports studies, and I just went on the Bite Size Revision message board, and I saw something about checking and compulsions about someone cleaning their teeth a certain way.
And I was like, "Wow, that's what I do."
So I started to read it, and yeah, from there, I learned a lot more about it, and I ended up going to the doctor and telling him what I was going through.
Venessa: Yeah. So that's quite a journey from childhood to adolescence at high school and now as an adult. So how has your understanding of OCD changed as an adult?
Jay: It's changed a lot because I've learned so much about OCD, about the different themes, about what I do think about, like that the intrusive thought is just an intrusive thought. The only thing is I attach a meaning to that intrusive thought.
The more I've learned about OCD, it's given me more confidence to know what things I actually am going through and to know that I'm not a bad person.
I've done this through joining a support group in Liverpool about eight years ago. I used to go there once a month on a Wednesday, and that was the first time I was in a room where there were other people with OCD.
And just sat there listening to their stories and what they're going through really opened my eyes and helped me to understand that other people are going through the same as you. Maybe some things are different from what you're going through, but they're all relatable.
And speaking out in front of those people, having the confidence to speak about my OCD, helped a lot. Going on the OCD UK website, OCD Action, they helped me a lot, and just following people on social media, accounts and people that talk about different OCD themes, that's helped me to broaden my knowledge.
And I feel like speaking about it and educating people. I feel like if I just teach one person what OCD is, and they pass that knowledge on to someone else, we can have an effect where we're reaching more people over time.
So it's definitely helped me.
Peter: And I think that's, in some ways, one of the most common things that I hear, is people saying the sort of isolation, the feeling like you're different from everybody else, the feeling like nobody else understands it, nobody else is going through this, it's just me, or the only other people who think like this are mad, bad, or dangerous people, can be hugely scary.
I think it's one of the parts that causes the most pain and suffering with OCD, is the idea of being alone and the isolation.
And so experiences like this amongst people who've had the same kinds of problems is really about helping people to realise that they're not alone.
Venessa: Thank you. So Peter, how is OCD usually described, and what do doctors look for? And also, why can OCD change presentation over time?
Peter: OCD is a problem that has two main parts to it, and they are the obsessive part and the compulsive part.
Obsessions we would refer to as recurrent, intrusive thoughts that the person finds distressing.
The compulsive part is the behaviours that people engage in to try to cancel, stop, or counteract the thoughts and doubts that they've had.
And so an example might be someone who has an intrusive thought or doubt of, "What if I didn't lock the front door?" Or, "What if I left the oven on?" Or, "What if I didn't put the handbrake on in my car?"
And then the compulsive behaviour might be to go back and check it. It might be to remind yourself and think very hard about that you did it and to try to remember it really strongly.
And that's a pretty common experience. Lots of people have this. It happens regularly, and people all around the world will have lots of these types of thoughts.
In the person with OCD, you will see them not trust themselves that they have checked it, and not trust themselves that it's actually okay, not trust themselves that their compulsive behaviour is done correctly, and they will often do it in a very repeated fashion or do it in a very particular way.
And people then get stuck in this cycle of obsessions and compulsions going round and round, and there can be lots of different types of these.
So, the different types of obsessions can have different themes to them that we refer to. You can have ones that are related to harming yourself or other people. People can have intrusive thoughts about contamination, being contaminated yourself, or you contaminating other people.
People can have obsessions and compulsions around symmetry and organisation and patterns.
And people can also have ones around sexual thoughts and intrusive doubts and worries about being sexually harmful, about their sexual orientation, anything to do with their understanding of themselves.
And so people often have both of these things, most commonly have both of these things. And just as Jay was describing, people will experience a doubt, a thought, a worry, which we would call the intrusive thought.
It becomes an obsession when the person worries about it and thinks about it and goes, "Why do I have that? Where did that thought come from? Why did I have that thought? Is that a normal thought? Does it say something about me that I had that thought?"
And then it's typically very quickly followed by the compulsive behaviour. The person says, "If I do these things, then I'll make that thing not true. If I do these things, I'll make sure that thing is okay."
The part about it changing over time is because OCD is typified by people, as Jay was mentioning, understanding and relating to the thoughts that they have in a very particular way.
The theme can change over time, the content can change over time, because it's about the way the person relates to the thought, not necessarily the specific kind of thoughts. And it might change around, but it's all about how you relate to those individual thoughts.
Venessa: Thank you. So Jay, if you could go back and speak to your younger self, what would you want him to understand about OCD?
Jay: That you're not a bad person. The things that you're thinking are because you've got a mental health disorder, and it doesn't define who you are, and things will, as you get older, get better.
And yeah, you'll understand yourself more. I'm still learning to this day, but I feel like the more knowledge I have, the better you understand.
