To mark OCD Awareness Week, which takes place from 12 to 18 October, Emily Katy – bestselling author of Girl Unmasked – shares her experiences of living with the chronic and serious mental health condition
What do you wish people understood about OCD?
I wish people understood that living with OCD is like being tortured by your own mind. OCD bombards you with constant, distressing intrusive thoughts, images or impulses known as ‘obsessions’, and convinces you that you have to complete certain compulsions to alleviate the anxiety caused by those obsessions. Often the intrusive thoughts are completely at odds with the individual’s morals or values.
I wish people understood that OCD is all-consuming. It feels like being trapped in a mental hell from which there is no escape. It’s a constant cycle of fear, doubt, compulsions, anxiety and exhaustion.
Mostly, I wish people understood that OCD isn’t a personality trait or an adjective to describe being tidy or clean. It’s a serious mental illness that takes away freedom, quality of life, ability to work, and the ability to trust your own mind. But with the right treatment and support, recovery is possible – it’s important to remember that too.
You’ve spoken openly about experiencing both OCD and psychosis. How did those experiences interact with one another?
My OCD became so severe that my obsessions evolved into delusions – fixed, false beliefs that felt completely real – and I began experiencing auditory hallucinations. Delusions and hallucinations are both symptoms of psychosis, a mental health condition where you lose touch with reality. It was the most frightening experience of my life.
I believed I’d committed a crime and the police were coming to arrest me, so I would dress in ‘disguise’ (with a raincoat fully zipped up, sunglasses and a hat), because I thought I was being followed. At night, I heard burglars trying to get into my house. I believed people wanted to harm me and my family because of what I thought I had done.
Trying to distinguish between what was real and what wasn’t was impossible because, to me, those experiences were reality. As I began to recover, it became a daily battle trying to separate what was false from what was real. At the same time, I was trying to process the trauma my brain had put me through. It’s the most terrified I’ve ever felt – completely losing control over your own brain and losing trust in your own experiences.
What have been the biggest challenges in your journey to recovery, and what’s helped you keep moving forward?
The biggest challenges were when I was so deep in psychosis that no one could convince me that my thoughts weren’t true or the voices I was hearing weren’t real. When I started to come out of psychosis, my OCD was so strong that I still felt terrified of my own brain.
Some incredible mental health professionals helped me keep moving forward by never giving up on me and by helping me to see there was hope. My family was a constant source of support and the reason why I fought to get better.
You were recently sectioned under the Mental Health Act. Tell us more about how LEGO has played a role in your recovery.
LEGO became a lifeline for me when I was in hospital. My autistic ability to fixate on things meant I could fixate my thoughts onto LEGO. It gave me a distraction from the terrifying intrusive thoughts I was experiencing and voices I was hearing. Each brick I put together gave me a small sense of satisfaction. It gave me a reason to get out of bed in the morning.
What made you decide to tell your story publicly, and what kind of response have you received?
Mental illness takes people’s lives daily. I never want anyone to feel alone with their struggles, and I want people to see that there is hope of things getting better.
I receive messages all the time telling me I’ve had an impact on someone’s life, helped them to see hope, or that my book has changed their life. That never fails to amaze me.
If someone reading this article recognises some of your experiences in themselves but is afraid to ask for help, what would you say to them?
To anyone who is struggling, please reach out for help. You are never alone battling your own brain, even when it feels like you are. There are people who will understand and there are people who can help you. You are not a lost cause, and you deserve to get better and get back to living a full life filled with joy and goodness.
As we mark OCD Awareness Week, what change would you most like to see to make life better for people living with OCD?
I’d like to see the public have a better understanding of intrusive thoughts and for the world to understand that having ‘bad’ thoughts doesn’t make you a bad person.
And finally – what are some of the most helpful things friends, family members or carers have done to support you?
Having people believe in me and believe that I could get better, even when I didn’t believe that myself, gave me the smallest bit of hope, and I clung to that every day in order to fight to get better.