INTO THE LIGHT
Where the Mentally Ill Share Their Secret Hopes and Fears
A new online arts project gives an inside look at the obsessive-compulsive mind.
“I feel like I can’t trust my own brain.”
“I’m going to kill someone just by thinking it.”
“What if I touch someone inappropriately even by accident? I can’t be trusted.”
These are a few of the irrational thoughts that can plague people with obsessive-compulsive disorder (OCD). Now, an online arts project called The Secret Illness is providing a platform for sufferers to anonymously share those thoughts in order to help others understand that OCD is more than just a character quirk or a punchline. In essence, it’s PostSecret for OCD—but also much more.
The centerpiece of The Secret Illness is The Wall, a collection of mosaic-blurred portraits of people with OCD, each with their own intrusive thoughts and repetitive behaviors emblazoned in text across their faces.
“If I didn’t touch a random object a number of times my worst nightmare would come true (generally one of my loved ones would die),” one portrait reads. “How could I risk that?”
Written out for public viewing, the beliefs expressed on The Wall are clearly false, but inside the mind of someone with OCD, they can be forceful, persistent, and—given that 15 percent of sufferers have attempted suicide—potentially life-threatening.
Clicking on any of the portraits on The Wall reveals the personal narrative of someone with OCD. Most stories are submitted anonymously or with just a first name, location, and age. All add more depth to a mental illness that is too often reduced in popular media to a single symptom like ritualistic behavior or obsessive hand-washing—think Jack Nicholson’s character, Melvin Udall, in As Good as it Gets.
“This is about putting the record straight and making more people aware of what OCD really is,” said Liz Smith, a British filmmaker and the co-creator of The Secret Illness. “When people make jokes about ‘being a bit OCD,’ they only do that out of ignorance and it's amazing that so few people—including myself two years ago—know nothing about it!”
As the National Institute of Mental Health (NIMH) notes, OCD is a mental disorder characterized by unwanted, uncontrollable thoughts (obsessions) and repetitive behaviors (compulsions). Because the obsessions induce anxiety and the compulsions briefly and partially alleviate anxiety, OCD was once classified as an anxiety disorder but it was recently separated into its own diagnostic category in the DSM-V.
In the United States, OCD has a lifetime prevalence of 1.6 percent of adults—more common than many might realize. And despite television depictions of the disorder, OCD goes beyond simple germaphobia, although fear of contamination is one common obsession.
Smith hopes that The Secret Illness can help the 98 percent of people who will never experience OCD to understand the full range of its largely invisible symptoms.
“My hope is that together we can take some of the ‘secret’ out of OCD, that more people can be diagnosed early and get the treatment they need,” she wrote in her inaugural blog post last fall. “I hope it will open our minds and make it more acceptable to talk about OCD and intrusive thoughts more openly.”
The average age of diagnosis for OCD is 19, but the symptoms often begin much earlier.
In her post on The Wall, Jaslyn, 17, recalls believing as early as age 10 that she had to touch wood 1,000 times before she fell asleep “or else [her] mum would die.” She dealt with these compulsions throughout adolescence, successfully managing them for two years. But then, in her senior year, she unexpectedly developed an irrational fear of anaphylaxis.
“This was totally uncalled for, considering I don’t even have any allergies… ” she wrote. “But before I knew it, I couldn’t eat because I was too scared. My first thought in the morning was ‘Am I going to go into anaphylaxis today?’ and I just didn’t want to get up and face the world. Once again, my grades started dropping and I lost a lot of motivation.”
Other posts on The Secret Illness explore all of the most common obsessions and compulsions outlined by the NIMH from fixations on social taboos to aggressive thoughts to the repeated checking of household items such as door locks and stovetops.
Charlotte, 26, worries, “If I hold a knife, I fear that I will stab someone I love.”
Kyle, 25, started to fear that he was a “danger to children” when an unwanted pedophilic thought entered his mind, even though the thought “repulsed” him and he actively advocated against child abuse.
Amy, 25, has to be “the last person to go to the toilet before leaving the house.” Before she walks out the door, she will pee four times, wiping 10 times each of those four times, counting them out loud. If she loses count, she has to go once again.
“Sometimes I can be stuck in the bathroom for over half an hour,” she wrote. “If I’m not left enough time to carry out these compulsions, I get very irritable.”
OCD is a chronic illness, as evidenced by the many Secret Illness submissions from people who have suffered from the disorder for decades.
Jennifer, now 35, started pulling her hair out when she was 5 years old and continued to do so through childhood because it “gave [her] a sense of control and comfort.” She took medication and developed strategies to occupy her hands but the compulsion remains.
In fact, OCD can persist for so long that it becomes difficult for sufferers to differentiate themselves from their symptoms. But as Shane, 45, wrote in a note of encouragement, “This is not me, this is my OCD.”
As the NIMH notes, the symptoms of OCD are treatable with medication that regulate serotonin levels and psychotherapy, particularly cognitive behavioral therapy (CBT). And while The Secret Illness offers the public a much-needed window into the mind of people with OCD, it also sends messages of hope to the sufferers themselves.
"[The Secret Illness] is also about giving people who are struggling with OCD a platform through which they can express themselves and explore OCD in a very positive way through creativity, and to stop feeling fearful or ashamed about talking about it," Smith told The Daily Beast.
“Getting diagnosed five years ago was hard, but I wouldn’t exchange the life I have now for anything,” wrote Stephanie, 27, from Australia. “I find beauty in the little things, the days I only check [that] the door is locked once…and the days I keep a smile on my face all day.”
“I understand that OCD is part of who I am and it will never fully go away,” said A, 28, from Canada. “But I am not my OCD.”