Keeping your house pristine and loving colour-coordinated stationary does not mean you have OCD. OCD stands for obsessive compulsive disorder; it is not an adjective for "tidy" or "perfectionist". The misunderstanding surrounding the condition is so rife that people often don't realise they have it. They may live for years without seeking help, unsure why their life has been taken over by a scary and unnameable beast.
Having OCD means you have obsessions, followed by compulsions, and that they cause you significant distress. Obsessions are distressing and recurring thoughts and images. You don’t want to have them, but you can’t stop them coming. Compulsions are the things you repeatedly do in response to the obsession to make it "go away".
OCD is a devious and sneaky creature, frequently manipulating people to get its own way. My childhood and teenage years were awash with its deception.
1. "I want that person to die."
This thought struck me aged 12. My mother's best friend, who I cared about deeply, had just been diagnosed with cancer. A random thought popped into my head: I want her to die. This thought was so abhorrent to me that I lay on the floor rocking back and forth, desperately trying to make it go away. But it's like saying "don't think of pink elephants" – the more you try not to think of them, the more you will.
At the time, I had no idea what OCD really was. I didn't know that for many, those obsessions take the form of intrusive thoughts. An intrusive thought is one of those weird, uncomfortable thoughts that most people in the population have and just dismiss as "a bit odd". Someone with OCD reacts differently. The thought is so "dangerous and wrong" that it becomes an obsession.
It should be mentioned that people with OCD never want to think these things, and are never dangerous. In fact the problem is the opposite – they care too much, which is why they can’t simply dismiss these thoughts like someone else would.
2. "I’m going to hell."
I went to a very posh and religious prep school (playing Jesus in the Easter play and getting crucified on stage guaranteed you lasting social status), so naturally religion was important to me, and my OCD pounced. Whenever we went to church with school, swear words would pop into my head (obsession) and I’d have to physically clamp by mouth shut (compulsion), for fear they would burst out. I was terrified of walking up to a stained-glass picture of the disciples and shouting, "Your tunics look shit!" It sounds ridiculous even to me now, but back then I felt like Jesus was about to return for a second coming that solely involved escorting me to the fiery pits of hell.
3. "My sister will die in her sleep."
OCD has a nasty tendency to focus its energy on the people and things you care about most. When my little sister was born, I wanted to be the best big sister I could. I became obsessed with the thought that she would stop breathing in her sleep, and it would be my fault for not checking on her enough.
When everyone else in my house was asleep, 8-year-old Lily felt she had an important job to do. I would creep into my sister's room in the early hours of the morning and perform my compulsions at her bedside. I would check her pulse and count her breaths. It never occurred to me that she might be able to get through the night without me.
4. "I stink, and everyone can smell it apart from me."
As an 11-year-old girl who had witnessed one of the more "developed" girls in her class be taken to the side by a teacher and told gently by a teenager about the benefits of deodorant, the idea that I might unknowingly smell was positively apocalyptic. My obsession with smelling bad spiralled from there, and I could spend stupid amounts of time smelling all my clothes trying to detect "smelly traces", and washing myself repeatedly just in case.
5. "I can spread fatal diseases to other people."
Like most parents, my mum and dad told me about the importance of being clean and washing your hands so you don’t get ill. Unlike most children, I listened attentively. In fact not only did I listen – I took their comments to the extreme. I came to believe that if I didn’t keep my hands clean enough, I and (more importantly) other people would get contaminated and ill as a result. I started to wash my hands compulsively, to the extent that by the time I was a teenager, they were nearly always red, bleeding, and sore.
6. "I’m going to upload naked picture of myself online by accident."
I was about 13 when camera phones took off. Having a Motorola flippy affair made you cool, and if it had a camera you were basically made. I’d heard whispers among the older girls in my school of rebellious bad girls who sent "naughty pictures" to boys. I became gripped by the fear that I might take a naked picture of myself without remembering doing it, send it to someone, or worse, upload it to the internet.
I lived in terror of splashing my double As all across Bebo for the world to see. I’d go through my pictures over and over to check I hadn’t got any of my own "naughty pics", and always be sure to put my phone in a drawer at night so that sleeping Lily couldn’t go on an unconscious spree of social destruction.
7. "I’m going to get convicted of being a paedophile and sent to jail."
This is a messy and overwhelming part of my OCD that was devastating to live with but surprisingly common among people with the disorder. We live in a world where people are increasingly aware of paedophiles and the harm they do. OCD can often be triggered by culture, and for me the result of society’s increased vigilance was that I began to worry I might be mistakenly accused.
Whenever I walked down the street, I’d be thinking: Did I glance at that child? Was it picked up by CCTV? Am I going to be taken to court and accused of crimes I haven’t committed?
8. "I’ve hurt a child, and I don't remember doing it."
Another terrifying thing OCD can do is make you think you've done something bad that you actually haven't. Have you ever had a weird thought like What if I ran over someone when driving but I don't remember doing it? If you're like most people, you probably just dismissed the thought and moved on with your life, because you knew that you hadn't. This form of OCD is basically that thought on acid.
After school I worked as a teaching assistant in a nursery, and one of the boys in my class started exhibiting behaviours indicative of possible abuse at home. The thought that popped into my head was Maybe it was me who was abusing him and I just don't remember doing it. I came to believe this thought so strongly that it ultimately caused me to leave my job in childcare.
9. "You’ll never get better."
These are just nine examples of a great many obsessions and subsequent compulsions that ruled most of my life. When I did get a diagnosis and receive help, my OCD would taunt me and say things like "It's useless – you don't actually have OCD. You're just a bad person and you'll never get better." I didn't realise at the time that this too was just another obsession.
Over time and with professional and family support, I have however been able to get my illness under control and live a fulfilling life. I am not totally better, but I am on my way. And this really is the main message I want to share: OCD is frightening, but it is not a death sentence. Recovery is possible. Should you feel that you're in the clutches of the disorder yourself, speak up and act.
I don't have to live my life believing these lies any more – and neither do you.
Lily Bailey is the author of a memoir about her life with OCD: Because We Are Bad: OCD and a Girl Lost in Thought (Canbury Press, £14.99 hardback, £7.99 ebook)