Vancouver, British Columbia, Canada → Writer, Director & Art Therapy Student → OCD → CBT, Mindfulness Meditation.
R: Hi Luke, tell us a little bit about yourself
L: I’m a storyteller. I’ve worked in different forms – film, fiction, theatre, but it’s always been with the same aim. To tell a good story. I’m from a small village in Lancashire called Astley, but I currently live in Vancouver, British Columbia where I am studying for a Graduate Diploma at the Vancouver Art Therapy Institute.
R: You wrote in your article on Fusion.net that “at 24 you were diagnosed with it.” When did your OCD actually begin?
L: My first experience with OCD symptoms was a early as 3-years-old. It’s an anxiety disorder and I was a very anxious child, so much so that I would often give myself tummy ache from worrying so much. My first intrusive thoughts were about contamination, in particular where I slept and which bath tub I used. Sleeping away somewhere foreign, like a hotel or a friend’s house was almost impossible for me without getting upset. I would often get brought home in the dead of night to my parents by a neighbour or a school friend’s Dad, crying because I was so worked up about where I had to sleep.
It is NOT about how you arrange your spices in the kitchen, or whether you like your TV channel set to an even number, or whether you only like red M&Ms.
R: When did you figure out other people didn’t have OCD?
L: I worked out that I was the only one, or one of very few feeling this way, pretty early on. I’m a highly sensitive person (HSP), which means my senses can be overwhelmed more easily. I take on board and process more details – too much you could say – and this was very obvious when I saw that my friends weren’t bothered in the slightest by certain things that would make me very upset. I felt different and almost like I was broken for a very long time, most of my childhood.
R: In your own words, how would you describe OCD?
L: Obsessive Compulsive Disorder (OCD) is a debilitating anxiety disorder where a person experiences intrusive thoughts beyond their control, triggering anxiety and safety behaviours to help temporarily relieve said anxiety. It is NOT about how you arrange your spices in the kitchen, or whether you like your TV channel set to an even number, or whether you only like red M&Ms.
R: How has your experience with OCD evolved? Is it the same as when you were a child up until now?
L: When I was around 15-years-old, my OCD changed dramatically. Primarily Obsessional OCD is different to most other cases of OCD. I have no outward compulsions or safety behaviours – everything happens inside my mind, which makes it harder for most people to recognise than anything is wrong. Primarily Obsessional OCD also typically comes with more severe intrusive thoughts – my own being violent and sexual. It can be one or the other or a mixture of both. I did not experience this type of OCD as a child because I wasn’t exposed to what sex and violence was until I attended high school.
R: You also wrote: “For me, everything is silent and internalized. I end up trapped in a cycle of persistent and often debilitating intrusive thoughts that can torment me for days at a time.” What made you speak openly and publicly about your OCD?
L: I didn’t seek help for what I was going through for a long time because I thought there was something seriously wrong with me. Who has sexual/violent thoughts on a regular basis? They never involved me, and it was always adults or people I knew, but it was still alarming to think about. It was only when I couldn’t cope anymore that I sought help and discovered my symptoms were quite common. This made me realise that I’m not the only one and that somebody else out there might be thinking they were the only one as well. I spoke out because I wouldn’t want anybody to go through what I went through.
R: You said “ Living with OCD in the digital age is especially tough” and “I have deleted Facebook, Twitter and Instagram from my phone and iPad more times than I can remember. “ Now you’re back online. Will it last this time?
L: I’m not sure if I will stay online, to be honest. Facebook is quite easy for me now and living in Vancouver away from family and friends back home in the UK, it has become more useful to me personally. Since last night, I have deleted Twitter and Instagram yet again because I still can’t gel with the idea of posting photos about my life. Deep down, I don’t really want the world to see me through that lens. As for Twitter, my first thought is never the best and Twitter has a way of immortalising them across time. I have grown so much this year and there are many things I like to leave in the past.
R: How does OCD affect your normal day?
L: Somedays I wake and I will have intrusive thoughts straight away. Sometimes I don’t even get to sleep because my head is spinning. Sometimes I get to sleep, but it’s a fight. Do you know those merry-go-rounds in a child’s playground? Where you get on and somebody spins you? That’s how it feels. Like I am stuck in the middle of one while my thoughts spin me and spin me and spin me and it’s too fast to get out of it.
I have symptoms of OCD, yes, but OCD is not me.
R: If you had the option to lose your OCD, would you?
L: Losing my OCD? Well, this could be quite a controversial question. The thing is, I don’t associate myself with OCD in terms of it being part of my identity. When I went into recovery in July after seven months of Cognitive Behavioural Therapy (CBT), the first thing I knew I wouldn’t do is show up in Canada and introduce myself as Luke who has OCD. I have symptoms of OCD, yes, but OCD is not me. The difference between me and the guy next door is simply the type of thoughts we have and the way we have them. If I changed that, I fear I may change something bigger and better about myself that developed as a result. Whether we like it or not, we are all made of both light and dark. We all face demons and we will all have a mental health problem at some point, even if it’s just at the hands of time and grief. I’ve chosen to live the life I have been given because it is worth living.
R: Do friends or colleagues notice your tendencies?
L: My close friends notice sometimes, but because my compulsions are internal it can be quite difficult to notice. I usually become slower and more restrained. I’m quieter and more inside myself than usual. That’s when they will enquire and I will talk to them. It doesn’t affect our relationship because it isn’t about them and I make sure they know that. I’m very, very lucky that I have friends who will sit and listen to me. I don’t need somebody to say something in response, sometimes I just need somebody to listen and they do that. You don’t need a special skill set, you just need to be kind with your time.
R: Do you think your life would be different without OCD?
L: I think life would be very different without OCD, but I am sure the challenges I would face as a result would be the same, just with a different face in a different place. I don’t really believe the grass is always greener, because it often isn’t. I don’t think too much about what I can’t change.
R: “OCD isn’t all bad for me. Professionally, I certainly haven’t suffered from the attention to detail, or the desire to stay well-organized.” I also think is one of the positive aspects of OCD. but I haven’t found many others. Have you?
L: I think one of the beautiful things that comes out of being open and honest about your own struggles is that it has the power to unite you with people you may never have met otherwise. We are a prime example of this. You read my article for Fusion and go in touch with me. Had I not spoken out, that never would have happened. It certainly gives me a unique perspective when I am working, but I guess that’s also like saying your hairdressing skills really contributes to your work as a hairdresser, but does it help anywhere else? It doesn’t have to be completely positive – what’s important is that some of it is and we should cherish that.
one of the beautiful things that comes out of being open and honest about your own struggles is that it has the power to unite you with people you may never have met otherwise
R: You’re a writer – How does OCD affect your writing?
L: I write because of how I think, so I would say my writing is a direct product of it. It’s my form of art therapy. Sometimes things happen in my life and I can’t make sense of them emotionally. Intellectually I understand it, but my feelings are confused and struggle to comprehend what has happened so I write it down – whether it be in the form of a letter, essay, novel, short story, screenplay… when I see it as a story, something is released from me as a result and I gain closure. It’s incredibly powerful.
R: I guess it gives great material for writing about?
L: Sometimes it gives me material, yes, but it’s hard to really pinpoint where “creativity” comes from. It’s the question I am asked the most when I explain what I’m working on. I am usually asked, “where did you get that idea from?” How do you answer that? I have no idea. It just fell into my head, but obsessive thinking can help put two and two together until you have fleshed out every bit of detail possible. It helps reach new depths in the story.
R: I also have OCD and it often causes procrastination, hesitation and doubt. Do you also experience this with your writing?
L: Oh my goodness, every day! I am constantly doubting myself, tearing page up, deciding I’m not going to write about it, deciding I will write about, telling somebody I will write about it, deciding I won’t write about it because I told somebody I will and it doesn’t sound right now and it’s too much pressure. You name it. My new project is something I abandoned at least six times.
R: Were you officially been diagnosed by a health professional with POCD?
L: I was diagnosed by the NHS in England with entrenched POCD. I started Step 3 Cognitive Behavioural Therapy (CBT) in January 2015 and completed my treatment in July when I was officially in recovery. It was probably one of the hardest things I have ever had to do. You essentially retrain your brain to think differently, and while it has really helped and worked for me, it doesn’t help and work for everyone and every condition. It was a very deep and personal journey where I experienced quite a few personal losses in the process. It changed my life.
Mindfulness meditation is extremely helpful.
R: You wrote that you are “getting better today, thanks to the steps I have taken to organize my mind and calm my fears.” Can you elaborate on the steps you have taken?
L: I no longer take medication. I was on an medication for anxiety during the time I was going for CBT, but this was to mainly bring me to a state of calmness where I could focus on being present in therapy. Mindfulness meditation is extremely helpful. It centres you and keeps you focused on what is rational and important.
R: Do you feel like you’re in control?
L: I do feel like I am in control now, yes. I will have days where I don’t feel like that, but they are one or two and not that common anymore. I listen to my body. If I am tired, I get an early night. I am not in the mood, I keep things simple. I don’t force things on to myself and if I don’t want to do something, I say no. You can say no to people and sometimes you have to.
R: Did any health professionals explain where your OCD originated?
L: No health professionals explained where it came from, but they are not mind readers either. This is the thing, no one person is going to give you all the answers, so don’t expect them to. Nobody in my immediate family has had mental health problems before me. I did suffer a lot during my school years at the hands of bullies and I imagine there is a lot to be said about the trauma I endured during that time, but there will never be one concrete place where it originated from because it isn’t the manifestation of one thing itself. It’s constantly moving and changing and will for the rest of my life.
R: Do you tell friends, family and colleagues that you have OCD?
L: My family and friends know I have a form of OCD. Whether they know what that means or entails is something else. If they don’t ask then I don’t tell. There is something uncomfortable for me in unravelling how my brain works for no reason. As for my colleagues, I tell who needs to know and that is becoming fewer by the day now. If they googled me, I’m sure they would find articles like this, but that is up to them. My biggest concern and anxiety is always the idea of entering into a committed a relationship and having to tell someone. That can be hard and still is.
There are many, many articles out there and the more people speak up, the better information you will receive. There is nothing better than hearing somebody else’s story.
R: Do you know other people with OCD?
L: I don’t know anybody else personally who has OCD. I am aware of a journalist called Rosie Bretecher, who has the same type of OCD that I was diagnosed with. She has recently written a book called PURE.
R: How do you stay educated and up to date on OCD? Do you read specific blogs, magazines or news articles?
L: Admittedly, I don’t stay that much up to date with what is going on with OCD. Part of my recovery was not letting it define me and as a result, took a step back and focused more on my creative projects than the mental health world. It was important for me at that time to do that. Many can get too sucked in and use their condition as a crutch. There are many, many articles out there and the more people speak up, the better information you will receive. There is nothing better than hearing somebody else’s story.
R: Have you read any great books about OCD?
L: I read a book recently called The Man Who Couldn’t Stop by David Adam. It was very emotional to read and highly recommend it to anyone wanting to know more about OCD through a personal case.
L: Thank you, that’s very kind of you to say. 27, Memory Lane, my first feature film, was particularly hard. I was doing more jobs that anyone person should be doing on a film set, and I did it to save money to pay the performers and crew as much as I could. This mixed with the fact I was unwell during the period of filming meant that I received quite a lot of criticism from some of the performers that really left me feeling like I didn’t want to make another film again. They questioned my authority, my creative choices and belittled me to other crew members. It was an intense experience and I had no agent or producer to defend or look out for me. I had to get on with it, and I did. I haven’t made another film since then. I feel like enough time has passed that I am certainly open to doing so, but when and where that will be I am not sure. The film was received very well and aired on a small cable TV channel in the US for the first time last month.
R: “27, Memory Lane,” which I wrote, produced and directed with a budget of £15,000 that I raised through crowdfunding. You HAVE achieved a great feat, despite your affliction. Was it hard?
L: During the production of 27, Memory Lane, feeling unwell caused me to be much more reserved and introverted than I usually was. This didn’t go down very well with those who needed a lot of constant validation. There many people working on the project who were happy if I was happy and we would move on smoothly to the next scene, but it was very clear that some had the distinct impression of what a director should be and I wasn’t it. That, in many ways, exasperated my condition. It made me feel like shit. It’s not a nice thing for anybody to go through, even those who aren’t suffering from a mental health condition.
R: And you have also written a book. Tell us a little about that?
L: My first novel, Little Push, is a far cry from 27, Memory Lane. It’s set 222 years from now in post-apocalyptic China and tells the story of the final waitress of a fast food restaurant where terminally ill people go to commit suicide… Yes, I know it sounds so cheerful, but I assure you there is more to it than that. It’s the first in a trilogy and I wrote that when I was accepted on to the Curtis Brown Creative Six Month Novel Writing Course in London. I had a lot of mixed reactions when it was finished, but mainly it has been very positive. I know it’s a strange story and I don’t know where it came from, I just knew that I had to tell it.
R: Where is the book available to buy, and movie available to watch?
L: You can purchase Little Push from Amazon and other participating retailers online and you can watch 27, Memory Lane over on my Vimeo Channel: www.vimeo.com/lukehupton. My website also has all of the links: www.lukehuptonstories.com
R: What are your plans for the future?
L: I am currently here in Canada, studying Art Therapy so I can help people tell their own story and find their own way through. I’m also working on my second novel, which takes place outside of the world of Little Push. It’s a standalone book set in Victorian London about a half-elven princess who performs a miracle on a sick street artist on Christmas Eve in 1889.
R: What are your plans for the future for your OCD?
L: As I already mentioned to you briefly before this interview, I have been considering setting up some kind of resource for people with OCD, but am not sure yet how I want to go about that. Often, online forums because places for those who really need somebody to talk to and it can be over run with desperate confessionals from people who are in pain and really need help. I am not a doctor or a nurse, but I believe I can offer something to those who are living with condition and would benefit from being a part of a network where stories can be shared and events can be held. That’s something I am very interested in doing.
R: Thanks for exposing Primarily Obsessive OCD Luke, I really appreciate it. People need to know that great things can still be achieved with the right treatment and care.
L: Thank you for having me, Rodger. You’re doing wonderful things with this website and I’m truly humbled to be included.
Rodger Hoefel in conversation with Luke Hupton
Cover Photo & other images supplied by Luke Hupton