Rebekah Cheung shares her experiences of OCD — and some of the stigma and misunderstanding she’s faced since her diagnosis.
TRIGGER WARNING: This blog post contains details of sexual assault and some stark examples of experiencing OCD. For sources of support, head to the See Me website.
Obsessive Compulsive Disorder (OCD) is a neurological disorder, and is widely misunderstood as a mental illness that is defined by cleanliness and order.
In reality, OCD is one of the most debilitating conditions to live with (as stated by The WHO) and is characterised by repeated stress-inducing thoughts and compulsions. Although it is not a condition that can be eliminated completely, it is a mental health condition that has one of the most accessible treatment plans; a combination of SSRIs and Cognitive Behavioural Therapy. So why did it take me until I was 25 before I was given the diagnosis of “textbook” OCD?
Our vast misunderstanding of OCD means that those with the condition suffer in silence if their obsessions and compulsions don’t suit that of sanitation and routine.
Even though I’ve shown signs of OCD since a very young age, I thought the obsessions and compulsions signalled that I was a bad person, not that they were a sign of an illness. We all have impulsive thoughts. Having them is part of being a human, and it’s the reason why OCD can only ever be manageable and not curable, as they are inevitable. What makes a person with experience of OCD different from the “normal” person, is that their brain can convince them that the thought is fact.
Imagine you have an intrusive thought of you leaving your hair straighteners on, even though you know that you didn’t even use them that morning. Someone who is neurotypical will be happy with the fact that they know they didn’t used them, and can go about their day without a panic. For those with OCD, the thought of not turning off the straighteners means they start to think of all the bad things that can happen as a result. This could be the damage of property, or even the loss of life. A person with OCD will then rack their memory for signs that they didn’t use the straighteners, but ironically, the panic is made worse when there’s no evidence that proves you’ve caused some sort of danger.
A few years ago, this would have been called “Pure-O”, a form of OCD that merely focuses on the obsessive thoughts, but not the compulsions. The reality is that there are compulsions when it comes to “Pure-O”, they just weren’t the typical compulsions that were recognised within the OCD community, like frequent washing of hands or repeated door rituals.
After a sexual assault, my OCD resulted in a fearful obsession with sexually transmitted diseases, especially surrounding HIV and AIDs. Although I didn’t realise at the time, my compulsions included repeatedly checking web pages for the possible symptoms of such diseases and seeking if I exhibited any of them.
I have the vivid memory of Christmas 2016 — we had just moved into our new flat and I spent the whole day searching webpages on HIV, so convinced that I had it myself, so sick that I couldn’t eat any Christmas dinner. Then as a soon as the doctors’ surgery opened after the holidays, I went for three separate tests, each coming back negative for HIV, but I was convinced that they were wrong despite the clear evidence. At no point during those months did I know that I was suffering from OCD, and I was well aware of what the condition was, but I couldn’t align it to my experience whatsoever. The labelling and separation of “Pure-O” instead of recognising it as standard OCD, creates that idea of “them” and “us”, with one group getting the help they need because their symptoms were widely recognised and discussed. .
My obsession with HIV was a clear demonstration of how clever the condition is — it evolves with you as you learn more, you develop a moral compass and you attach yourself to people you love and respect.
I’ve had OCD thoughts since I can remember.
Every night, my parents indulged in my compulsion to check through the different things that I had done that day that could possibly lead to me dying during my sleep. Although quite distressing, I considered it as just a part of my life, and there was no shame in that.
But as I grew to understand what shame was, my intrusive thoughts turned to having sex with old men. I didn’t tell anyone about these thoughts because I thought I was a dirty person. I was seven years old.
If I hadn’t felt so ashamed about these thoughts, I would have been diagnosed with OCD when I was a child, meaning I wouldn’t have carried that shame with me for over 20 years. I frequently discuss this idea with my support network, but there’s a such as thing as an OCD hangover. After riling myself into a panic about a certain obsession, the day after I sit and have a cathartic cry, because it’s not right that my head convinces me that I’m a morally repugnant person just because of my thoughts.
There is no shame in your thoughts, because they are simply that — thoughts. We need the representation of the ugly side of mental illnesses, not just with OCD, so that those suffering have an experience that they align with and can reach out for help.
