For one, the signs of OCD aren't always obvious. Lily Bailey is proof of that.
For as long as she can remember, Lily Bailey has suffered from severe obsessive compulsive disorder (OCD). She kept her illness private, until the widespread misunderstanding of the disorder moved her to write her first book—a memoir called Because We Are Bad ($27, amazon.com), which is out in the U.S. this week. Here, Bailey highlights seven persistent myths about OCD that need to go away.
Loving things neat and tidy makes you OCD
If you're saying "I'm so OCD" with more enthusiasm than a One Direction fan on Twitter, you probably don’t have it. The person who cleans their house because having a tidy home brings them joy does not have OCD. It’s only OCD if it causes you distress. If someone spends hours cleaning their house every day because they fear something terrible will happen if they don’t, then that would be OCD.
All people with OCD are excellent cleaners
Actually, someone with OCD might make a useless cleaner. My desk, for instance, is a haven for dirty mugs. OCD is often portrayed as a disorder of cleanliness, when in fact a fear of contamination is just one of many forms the illness takes. While some sufferers may obsessively clean their house, many will have very different symptoms.
It's really obvious when someone has OCD, because she's always avoiding pavement cracks and checking to make sure the stove is off
Although some types of OCD are easily visible because of physical symptoms, many are not. OCD tends to be a very secretive disorder. The average sufferer takes 12 years to seek help, with friends and family often admitting they had no idea.
By way of example, lots of people with OCD have purely mental compulsions that are impossible to see as an outsider. I am one of them. From a young age, weird and uncomfortable obsessions that I had done something bad flooded my brain, and I would perform mental compulsions of taking the first letter of the word that described what I had done, and putting it on a list in my head. I would then repetitively analyze the list, to try and figure out whether what I did actually was bad.
To give you a sense of how that might work: Say I'm with a friend walking down the road. I suddenly worry that I haven't walked in a straight line and it looked weird, so then I take the letter "W" for "walk" and put it on the list. Then my friend says something that I think is supposed to be funny, so I smile ("S") but then I wonder whether that was the right reaction. Then she comes too close to me and I worry I smell ("S"). Then we pass a child and I worry that it might have looked like I looked at the child's bum ("B") and that it got caught on CCTV and I'm going to get arrested. So then I'm chanting "WSSB, WSSB, WSSB" in my head and trying to analyze those letters.
That's my list in the space of about a minute, so you can see how it would be easy to end up with lists from the day that were hundreds of letters long.
RELATED: 10 Signs You May Have OCD
OCD isn't particularly serious
When I was first diagnosed, I told a close friend. "I'm sorry to hear that,” she said, “but I'm just so glad it's nothing really bad." It wasn't meant to hurt me. She was expressing relief because she thought OCD was "much better than muscular dystrophy."
Her relief was misguided. It's not particularly constructive to start comparing how "bad" one illness is relative to another, but it’s important to remember that the World Health Organization ranked OCD as among the top ten most disabling illnesses, in terms of diminished quality of life and loss of earnings. Sufferers often become housebound, and cease to be able to live anything resembling a normal life. At my worst, I spent every waking moment embroiled in mental routines. I tried to take my life, and ended up as an inpatient in various psychiatric facilities.
We can joke about OCD
OCD often bears the brunt of jokes (a la Khloe Kardashian’s online quiz "How Khlo-C-D are you?"); and is even used to market offensive products, such as The OCD Hand Sanitizer. (Instructions for use: “Open cap. Sanitize. Close cap. Open cap. Sanitize. Close cap. Make sure the cap is firmly closed. Recheck Cap. Are you sure it’s closed?”)
When sufferers complain, they are accused of having a sense of humor failure. I have been dubbed "the most humourless lump of socialist turd on the whole of Twitter."
Before joining in with the hilarity, consider the harm these jokes and products cause. I did not get a diagnosis until I was 16, and this was largely because all I understood about OCD was that it pertained to being a vague perfectionist. Every time we perpetuate this myth, it stops people like me from knowing what we have, and being able to seek help.
I do not suggest that we never laugh at our struggles—being able to find humor in the darkest of places can be a guiding light. It’s the inaccurate jokes that get in the way of people having any real understanding of this disorder that I take issue with.
There’s no way to get better from OCD
Many people labor under the misconception that OCD is a personality trait and that if you have it, there’s nothing to be done. There is treatment for OCD, however: Cognitive behavioral therapy (CBT) is the first-line recommended treatment. CBT is a therapy where you consider how thinking in other ways, and responding to obsessional thoughts differently, can positively change the way you behave. It has been clinically shown to be effective.
OCD can be useful
Sufferers themselves often maintain that there is logic and use to their rituals. They will tell you they will never be burgled, because their front-door is definitely 110% locked.
In fact, OCD is never useful. Personal hygiene? Great. Checking the door once? By all means. But when the checks go from healthy to destructive, that's when there's a problem. It's better to get burgled once than jeopardize your life with chronic OCD. Or put it this way: One could spend their whole life trying to avoid getting sick by adhering to strict de-contamination rituals, without acknowledging the uncomfortable truth that they've been ill all along.
Lily Bailey is the author of Because We Are Bad: OCD and a Girl Lost in Thought, published by Harper. She is a model and writer based in London.