OCD: When compulsions take over everyday life

In this episode:

• Venessa, hosting the conversation

• Diedre

• Simon Holliday

Venessa: OCD isn't just about thoughts or rituals. It can start to take over every part of your life, from education to relationships. Dierdre, can you take us back to when OCD started for you, and when it started to seriously impact your life?

Dierdre: My earliest memory of having compulsions and obsessive thinking was when I was about five years old. And I remember every time I pet our dog, I would have to wash my hands, but to the point where they became raw, chapped, they were bleeding.

And it wasn't a germs thing for me. It just felt like I had to. It was instinctual, and it was a need, and just something I had to listen to. And even though I didn't even really think much of it, it didn't make any sense.

And then slowly from there, it just started adding on. So I would do a few things before bed to make sure that my parents came home alive from dinner. And then those few things turned into 30 minutes, and then an hour, and then two hours. So I had a two-hour ritual by the time I was probably 13 before going to bed.

And then when it started getting to the point where it started affecting my personality, my mood, how I presented myself to people, it was around puberty. It was around 12 or 13. And that was when almost every aspect of my life started just completely being overtaken by OCD, which I had no idea at the time that's what it was.

And it was less of a, "Oh, you should do this. Just do it to be safe," and it was more of you have to. It felt like my actions almost weren't my own. They were being more led by self-protection and preservation of other people then.

Venessa: So Dierdre, when you dropped out of college, how did that feel at the time?

Dierdre: I felt very hopeless, and to be 100% honest, I just didn't want to be alive anymore. It was the darkest time in my entire life.

I had struggled with suicidal ideation all growing up, and this is where it just came to a head, and I was like, "I can't do this anymore." When I dropped out, I just thought that my life was over. I was 19, and I was like, "My future's done."

I wasn't diagnosed yet, but I just knew that I was too far gone, and I was like, "There's no amount of therapy, there's no amount of anything that can save me at this point."

And my mum, because I was in no place to help myself, she just did hours and hours and days of research, and she found this hospital that I could go into, and I did outpatient for a month, and then in-patient for a month.

And that's where I learned and was diagnosed with OCD, and that's where I started learning about exposure therapy and all of these things. And it just became clear that the thoughts that I was thinking, I wasn't alone in them.

Venessa: Thank you for sharing that, Dierdre. So Simon, at what point does OCD become severe enough to significantly impair someone's daily function?

Simon: When we think about OCD, we think about the time it takes and then the severity of the symptoms. So we would define OCD as the obsessions and compulsions taking up at least an hour of your time.

And it can affect all aspects of life, really. So, it can affect your relationships with other people. It can affect your school or your career. It can affect your physical health as well.

So how OCD works is it's the same for everybody. We all get random thoughts, about three a second if we could pay attention to them, and then most of them are just rubbish. Maybe it helps with creativity, maybe it helps with humour. But for most people, they just have those thoughts and ignore them.

OCD comes after the random thought, and it sort of comes in a bit like a friend because all it's trying to do, actually, is make sense of the anxiety that people have, sort of being very sensitive to that anxiety.

So the brain's there to try and make sense of it, and OCD comes along and goes, "Look, this makes sense." So it's like a friend when it starts, but unfortunately, there's so many thoughts it can pick on, so many more rules it can make up, that over time, most people with OCD will experience more and more rules they have to do, more and more things they have to do.

And it's a bit like having a bully then. And if you've got a bully, and you always do what a bully wants, then the bully gets stronger, doesn't it? It's that effect on life and physical health.

Venessa: Thank you. Back with you, Dierdre. So, how did OCD affect your ability to form or maintain friendships?

Dierdre: It started impacting it when I was about 12 or 13, when my OCD started becoming super involved in every aspect, and I said this before, but basically how I presented myself.

When I moved to a new place, I felt really good because I didn't have negative connotations to it yet. So with OCD, sometimes you experience emotional contamination, and with emotional contamination, it's like germs, but they're emotional.

So it's like if you feel something is bad. So for me, school was always tainted, and it felt like I was walking in and I was dirty even though I hadn't touched anything. And if I left school and I didn't shower or do a compulsion to cancel out those germs, then whatever I touched, it would be infected by that tainted area.

So when I first went into a new school, and I moved schools quite a bit, I felt like I could be a bit more myself, and then as the days went on, I started getting triggered more, and I started realising that things were unsafe in my brain, and people were unsafe, and I couldn't look people in the eye, and I wouldn't really speak much.

And so in my head, I didn't really understand why people didn't want to be my friend. Looking back I can see why somebody would think that I was a bit standoffish.

And with OCD as well, I truly believed that I was just a terrible human being, so it really affected my confidence. So when I would talk to people, I would try to seek reassurance, which is a huge OCD thing, where if somebody did approach me and try to be kind to me, I would almost shut them down first.

Because in my head, I'm like, "You are obviously talking to me out of pity, because why would you ever want to speak to me? I'll let you off, and then if you keep talking, then of course, I'm in. I can be myself," kind of thing. Obviously, that never happened.

So I always just assumed that reinforced my belief that nobody wanted to be around me.

And then with that, if I did ever end up making connections, if I went to a new place or a new school or a new college and I would start making friends, and then they would say things that would trigger me, or they would say just certain words.

I stopped being friends with somebody who sent me an emoji that I didn't like because it caused my body to have such a visceral reaction that I was like, "That person must be evil, and I don't know, so I can't speak to them anymore." And we had been hanging out probably every day, and probably one of the first friends I'd made in a minute.

Venessa: Dierdre, you were talking about places being contaminated. The new school felt great to begin with, then it was just not. So what's an example of some of the things you'd need to do throughout the day?

Dierdre: I would constantly be adding new compulsions or things that I could and couldn't do.

So for example, this was probably another reason why I didn't have many friends, but I couldn't go into a certain hallway, but in that hallway was where my locker was senior year.

And so I decided to carry every single one of my textbooks in my backpack, which was very heavy, okay? And then I also had a gym bag with all of my stuff because I had to keep a certain amount of things in my gym bag.

And then I also had a lunchbox, and I also had to wear flip-flops all year round. I would walk with a limp throughout school, and I got asked weekly if I had sprained my ankle or if I had hurt myself and all of these things.

They're like, "Oh my God, wait, are you okay?" I'm like, "Yeah, I'm good." And I would just keep on walking because there was no way I was going to get rid of my backpack and my shoes and my bags and all of these things because I felt like I had to have them, and if I didn't, that something terrible was going to happen and they were almost keeping me safe.

Venessa: Thank you. So Simon, what are the signs that someone should seek professional help?

Simon: Anybody who has obsessions or compulsions. Obsessions are the repeated, unwanted, pervasive thoughts, images, or urges that are resisted and cause anxiety and lead to the compulsions, which are the irresistible things we do to try and stop that anxiety.

So anybody who has that should seek help. One percent of people have full-on OCD, and if you think about your school or your local community, 1% of people have got OCD. That means most schools have got somebody who's needing help.

Venessa: Thank you. So Dierdre, looking back, what helped you begin to take your life back from OCD, even in small ways?

Dierdre: There were two main things, and the first one is something, well, both of them I still do to this day.

But the first one was when I got diagnosed. First thing I did was dive into the research of what it was. And so I would look into it and I understood why my brain was working the way it was working, what the disorder actually is versus the stereotype, like what it is, what it isn't, and just educating myself on what I needed to do to make it better.

And then the second thing that saved my life, and I always say this, was exposure therapy. Exposure therapy did not give me my life back, it just gave me a life, period.

I truly can't remember a time before 19 where I was fully present. I am fully able to be present now. Even just right now, I don't have a second voice going on in my head at the moment because I've been doing eight years of exposure therapy and pushing myself and doing things that I never thought I was ever capable of doing and proving to myself that over and over and over again that I can do hard things and I can face them, and that anxiety is a feeling, it's not a warning.

And also just starting to open up about it and talk about it with people because there are more people in this world with OCD than you think, and it's coming out more and more with the stereotype being a bit less because people are talking about it more, that people have the same thoughts that you do.

And if you feel like you've got pushback on that, try talking to a therapist or somebody who actually understands OCD or looking into OCD or joining support groups. There's so much out there for us now, and there wasn't when I first started.

And now I feel like I'm part of a community where I felt so alone before. And that, I think, is one of the most beautiful things about learning about OCD first and foremost, and then actively doing the exposures, knowing that you're not alone and knowing that people do get better.