‘Turn that light on and off 50 times so no one in your family dies.’ I’d freak out. I was fighting an internal battle every day.’: Mental health advocate details life with OCD, says ‘be kind to yourself’

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“I thought it was normal to fear for my family’s lives whenever they left the house. Nobody speaks to young children about what is ‘normal’ or not in regards to their brains and thoughts. Every time my mother would leave the car to go drop my brother off at his classroom, I would freak out, thinking she would go in the classroom and never come out, I would be abandoned, and would have to start my life as an orphan. A little melodramatic, don’t you think? Of course, my parents never gave me any indicators any of this would happen. My brain just saw every possible threat there could be due to my OCD.

OCD is an anxiety disorder manifesting through intrusive thoughts and compulsions to make the anxiety that arises from these thoughts go away. There are many different forms of it. I have general OCD. The symptoms started when I was young with a compulsion of having to touch things with both hands to be ‘balanced’ otherwise something bad would happen. I went to bed anxious pretty much every night and developed a ritual of praying every night for everyone in my life to ‘wake up happy and healthy tomorrow’ because I convinced myself if I didn’t, someone I loved wouldn’t wake up, and it would be my fault. While religion is important for many people, this was spurred on by my fear someone would die was an obsessive thought. Praying was the compulsion I could find solace in as then it ‘wouldn’t be my fault.’

Courtesy of Olivia Surguy

My therapist described my OCD once to me as an ‘over-responsibility voice’ and I think this is exactly right. My OCD tells me I am responsible for everyone around me. This manifests in obsessive thoughts such as ‘turn that light on and off 50 times so no one in your family dies.’ While I was able to recognize those thoughts as inaccurate, it does not make them any less scary. The feelings of guilt and anxiety a sufferer feels when they are having a hard day, in my opinion, equate to the fight or flight response. Of course, a sufferer will get many intrusive thoughts each day. Having these surges of guilt and anxiety so frequently is very difficult to manage. This is partially why it annoys me so much when people describe themselves as ‘so OCD’ and use the disorder as an adjective. It is not an adjective, it is a debilitating mental health disorder the World Health Organization ranked in the top ten debilitating disorders with regards to the sufferer’s quality of life. It is time, as a society, we put the use of OCD as an adjective to bed.

I first realized I had OCD at the age of 14. I was having an extremely tough time at school. I heard about other people calling me names and other nasty things. I developed agoraphobia, a fear of being trapped, as a consequence of this. I could not go into assembly in the mornings at school, as it was in a room with about 200 people and teachers sitting by the walls. I felt watched and trapped in this space. I felt anxious even leaving my house at some point. This was inextricably linked to my OCD, as it was a fear of not being able to cope, as well as not being able to escape. Why would I need to escape if I could cope? My OCD then reared its head and I started developing intrusive thoughts about not being able to cope. I got probably around 70 thoughts a day, telling me I couldn’t cope. My anxiety was telling me I couldn’t handle being trapped in a room and my OCD was telling me I couldn’t live with the feeling of anxiety. From there, my mind latched onto a story of ‘I can’t cope if someone dies and it is my fault.’

Courtesy of Olivia Surguy

I began to perform very long compulsions or ‘rituals,’ the first being washing my hands for an hour when I got back from school. I would have to wash my hands at least six times all the way through without getting negative thoughts, or I started believing my thoughts somebody was going to die. I would then flick a light switch on and off 50 times to, again, make sure nobody died. It sounds ridiculous to explain, but when you get an intrusive thought and it is paired with strong emotions, the thoughts become justified in the brain. ‘Well, this story must be true because I am feeling anxious,’ your body tells you. OCD made me feel like I was fighting a battle internally every day. I felt so bad after doing my behaviors, I would sit in my room and cry for hours. Around this time, lots of my friends at school also had anxiety disorders and they started getting help for them. I had shunned the idea of getting help before as I was too anxious to tell my parents for fear of them being disappointed in me, again thanks to OCD.

I built up the courage to tell my parents about my internal battle and of course, they were incredibly supportive. I started having therapy with the idea of ‘getting rid’ of my OCD and anxiety and wanting to function without it. This was misguided, though, and my therapist told me so. I was diagnosed and referred to my therapist who I still see to this day. I was very lucky in finding the right one the first time! My therapist helped me manage my anxiety and OCD. I had Cognitive Behavioral Therapy (CBT) and Acceptance and Commitment Therapy (ACT). I got better and was able to do things I was terrified of doing before, like going to the gym alone and taking a walk by myself. As I learned to ‘defuse’ from my intrusive thoughts about having panic attacks if I went somewhere, I was able to use this same method for my other intrusive thoughts. I got much better and thought it was all behind me.

Courtesy of Olivia Surguy

However, my OCD resurfaced a few years later. My therapist always says, ‘OCD is like a virus and comes out when you are stressed or tired, just like glandular fever.’ I had a relapse and my OCD became so bad this time that I didn’t eat anything for a whole week. My OCD had convinced me if I did, someone was going to die. I think this breakdown had to do with the added pressures on me. It was around my 18th birthday and it felt as though I was expected to have my whole life together. I didn’t know what I wanted to study at university or if I was going to get the grades to go to my first choice, and I didn’t know what I wanted to do with my life in the long run.

As I read this now, it is almost comical. As an 18 year old, I was so worried about the rest of my life, but I think kids are expected to know what they want to do even 10 years down the road, which is utterly ridiculous. This relapse was triggered in particular by my driving test. I think as life was moving so quickly and although I could drive, my OCD kept telling me I was a danger to myself if I drove without someone else in the car. My OCD was again working as an overprotective voice of myself and everyone around me. My life was moving too fast and my anxiety was through the roof. My brain wanted me to stay at home where it was safe. Something clicked for me, though, when my therapist said, ‘Your brain is trying to sabotage your future by making you think constantly about being safe. Yes, don’t go walking around a dodgy area in the middle of the night by yourself, but you can manage eating something without someone dying!’

Courtesy of Olivia Surguy

My therapist rang me up and got me to eat while I was on the phone with him. I felt as though I could endure the anxiety as I was safe while we spoke. Of course, I wasn’t able to eat straight away, it took a lot of building up. I would force myself to sit with the anxiety and intrusive thoughts for half a meal, then push it up the next day, and the day after that. As I was not getting enough calories and losing loads of weight, someone suggested smoothies to me. I would recommend that to anyone else experiencing something similar. As I was building up the courage to eat and drink again, I incorporated protein smoothies into my diet as a way of making sure I was getting calories, even if I was only able to eat half meals.

When I became unable to eat due to my anxiety, I went on medication. My therapist recommended it. He said, ‘Because your emotional responses were so high, you’re unable to act rationally and defuse from the intrusive thoughts.’ The medication brought down my emotional response so I could practice my defusion techniques once again. I was in a state of terror pretty much every time I had an intrusive thought until I took this medication, which helped me believe I could cope with the emotions. I have had ups and downs ever since this breakdown, but during the next year, I traveled the world for five months with my friends. I did a skydive and bungee jump halfway across the world! I am currently in my second year at university and absolutely loving it. Your OCD will not ruin your life as much as it feels like it will sometimes!

Courtesy of Olivia Surguy
Courtesy of Olivia Surguy

One of the main turning points in my journey was changing my attitude toward my OCD. My therapist asked me to think of good things my OCD had brought me as a way to start this transition. The main one is perspective. I tend not to worry about the everyday things some people get worked up about because my brain is always worried about death, which gives me a calmer perspective on everyday problems. A deadline is just a deadline and an essay is just an essay, they are not life or death, and I am able to put these into perspective because of my OCD. Things I have experienced are also been incredibly fulfilling, as I never thought I would be able to do some of the things I have. There was a point when I thought I wouldn’t be able to make it downstairs, let alone to Australia and New Zealand! Because of my anxiety disorder, I know how to manage stress better than people without one. For example, when COVID-19 first impacted our lives, I was really stressed but not beyond reason. I was able to calm down about it much quicker than some of my acquaintances who haven’t had to manage an anxiety disorder. This is probably because I have been dealing with the feeling of anxiety for so long.

Courtesy of Olivia Surguy

This concept of positivity is something I strive to portray on my Instagram account. I started it with the idea of making a little community of OCD sufferers so we didn’t feel as alone in our struggles and I now have over 2000 followers. It’s amazing to me and I have just started a podcast, ‘Don’t Bottle that Sh*t,’ and I talk to guests about mental health! If you’re struggling with OCD, definitely seek help as it is honestly life-changing. Talk to your friends and family! They will understand more than you may think. You will get better and you will be able to manage it!

I share more tips on my Instagram page, but my main advice is to be kind to yourself. Don’t beat yourself up for doing your behaviors, you have an anxiety disorder, which is not your fault. If you are so stressed that you do your behaviors for a couple of days, that does not make you a bad person; it makes you someone who has an anxiety disorder. You will get through this, you have every time before.”

Courtesy of Olivia Surguy

This story was submitted to Love What Matters by Olivia Surguy. You can follow her journey on Instagram and her podcast, ‘Don’t Bottle that Sh*t.’ Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

Read more stories about mental health here:

‘It’s like a virus,’ the counselor says. ‘It wants to keep living inside you.’ Nobody should have to experience it.’: Young woman details severe depression, ‘Show yourself some compassion’

‘My anxiety and depression can make me a sh*tty friend, but I’m not sorry.’: Woman thankful for friends who stick around despite mental health struggles

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