Lily Bailey has been modeling for three years and has appeared in campaigns for clothing brands and national magazines. She is the author of the book Because We Are Bad: OCD And A Girl Lost In Thought.
“You have OCD,” the doctor said. I sat opposite her, tugging my raggy school uniform sleeves down over my thumbs, like I always did when I got nervy.
I absolutely do not, I was thinking. My room’s a tip, and I’m the most disorganized person I know. I was also thinking, What on earth have I just done? Have I ruined my life? Having lived with strange and distressing thoughts for as much of my 16 years as I could remember, I'd finally cracked and told someone what was going on.
It’s not unusual for someone with OCD (or obsessive compulsive disorder) to wait a very long time before seeking help or getting a diagnosis. There are two main reasons for this. First, many people don’t know they have OCD. The misconceptions that surround the disorder are so entrenched that most people think OCD describes someone with a vague, cutesy preference for symmetry and order.
In fact, to have OCD, all that is required is that you experience obsessions, which are unwanted thoughts that cause you significant distress, and compulsions, which are the actions you then take (whether physical or mental) to neutralize that thought or worry.
Seen in this light, you begin to understand that OCD is a disorder that can literally be about anything. The woman who obsessively fears she might have run over a child and performs the compulsion of driving around the block to check she hasn’t has OCD just as much as the man who obsessively worries that he hasn’t locked his door and compulsively goes back to check it.
The second reason why OCD often goes unnoticed for so long is that it is often an incredibly secretive disorder that is shrouded in shame. Though they might not realize their disorder has a name, people with OCD often feel that their behavior is unusual or weird, and they can go to extensive lengths to hide it. For example, intrusive thoughts are a common part of OCD, but almost everyone has them. Ever thought, Hey, it would be very easy to push the person in front of me onto the railway track? That’s an intrusive thought. When most people have that thought, they are able to brush it off as a strange thought that doesn’t represent them. But, when a person with OCD has a thought like that, it can feel like an earthquake is happening inside them.
The reason the thought becomes a problem for them is that people with OCD tend to be highly anxious, compassionate, and caring people. When we have intrusive thoughts, they cause us so much stress and concern that we just can’t let them go.
Both of these factors got in the way of me getting help sooner. In the first instance, I had a completely inaccurate understanding of what OCD was. (As a teenager, I’m sure I used the term inaccurately.) This is precisely why it is so important to educate and encourage people not to misuse the phrase — because every time we perpetuate the myth that OCD is about liking your socks to be color-coded, someone like me spends longer in the dark about what they are actually living with.
The second reason I didn't tell anyone was that I was deeply fearful about what would happen to me if I did. My OCD has always centred around a distinct obsession that I was a bad person. I would compulsively make lists of things I thought I had done wrong in my head, and the lists could have hundreds of things on them by the end of the day. For instance, if a child walked by me in the street, I would worry that I had accidentally looked at their butt, and that it would be caught on a surveillance camera, and I would be arrested for committing a sex offense. I had terrible intrusive thoughts that I wanted certain people to die, and that I could kill someone with a thought. Why would I want to tell anyone about these thoughts? I genuinely believed that if I did, I would go to prison.
We need to end the misconceptions; we need to end the shame. People are literally losing years of their lives to this thing. I recently wrote a book about my experience with OCD. People ask me why I wrote it — it's a good question. Why would I want to tell the world my most sordid thoughts: that sometimes I obsess over everything from shitting myself to poisoning toddlers?
Because I want people to understand what it really means to have OCD, and to be able to get help sooner. After I told my school doctor, I was referred for psychiatric help and received CBT (cognitive behavioral therapy, which is a type of talking therapy). CBT for OCD involves doing a thing called "exposure therapy." You take the obsessive thoughts that cause you distress, and rather than responding to them like you normally would (by doing a compulsion), you sit with them. My exposures tended to involve feeling an obsessive thought come in, and tolerating the anxiety that thought caused me, rather than putting it on a list in my head.
It’s been a long process, and I still have bad days. But, that was eight years ago, and today I am relieved to say that I no longer spend my days crippled by fear. I work as a writer and model. Modeling may seem like a strange line of work for someone who has obsessively feared being judged, but getting better from OCD involves continuously challenging myself. I used to be unable to look in mirrors, because I worried someone might say I was vain, and I hated people coming near me. In a way, modeling has been some of the biggest "exposure therapy" I've ever done.
OCD affects 1-2% of the population, and has been ranked by the World Health Organization as in the top 10 most disabling illness of any kind in terms of diminished quality of life and loss of income. No, it is not "adorable"; no, it is not "quirky." It’s high time we reclaim the term, once and for all.
Because We Are Bad: OCD And A Girl Lost In Thought by Lily Bailey is on sale in bookstores and online now
If you are struggling with obsessive compulsive disorder and are in need of information and support, please call the National Alliance on Mental Illness at 1-800-950-6264. For a 24-hour crisis line, text “NAMI” to 741741.