Inside the Complex Realities of OCD
Health

Inside the Complex Realities of OCD

Understanding one of our most common—and least understood—mental health experiences.
August 15, 2018, 1:10am

This series was made with help from Like Minds Like Mine and the Mental Health Foundation.

Years ago, a younger, pyjama-clad Thomas would pace in and out of his bedroom door.

For three to four hours a night he would walk that track; a dedicated, solitary soldier on the march. Back and forth, through the archway over and over, threading the doorway until his thoughts began to abate.

If a bad thought came—or even the hint of one, the feeling of a thought bubbling toward the surface—he would know it wasn’t safe to sleep. So he would keep walking.

Today, Thomas, 38, thickly bearded, sits in a white-painted Lambton Quay cafe. Outside, Wellington’s drizzle is alternating its gradient. Thomas has stopped by on his way to work. He’s a video editor and writer, and will dedicate the next hour to trying to describe the life-changing doggedness of obsessive-compulsive disorder: the intrusive thoughts, the inescapable rituals, the life-absorbing constancy of the compulsions.

He looks down at the flat white on the table. “Say you wanted another coffee. Say I said to you, ‘If you think of a pink elephant at any point while you’re ordering that coffee, it’ll have a turd in it’. Then you’d have to keep on walking to and from the counter over and over again until you were sure that you didn’t think of a pink elephant. Maybe you’d know it was irrational, you know know there’s no way a turd would end up in your coffee. But somehow you feel like you have to do it anyway.”

Later, when the coffee cups sit empty, he sighs. “Even in this conversation, I guess I’ve struggled to articulate just how insistent, how unavoidable…” he pauses in frustration.

“I can’t put into words how impossible those thoughts are to ignore. That annoys me and feels like a personal failing of mine. But I have never heard anyone else articulate just how unavoidable or unsilenceable those compulsions are either.”

Maybe this is the reason Obsessive Compulsive Disorder is so poorly understood by the general public, he speculates.

“It seems like that is the hard problem of OCD. Yes it’s an irrational compulsion, but it’s so strong that it becomes its own reason. It becomes its own rationality.”

How to describe the strength of a compulsion? Maybe it’s like being starved, so hungry you can barely think—but rather than food, only closing the door one more time will satisfy the need. But then, ‘one more time’ rarely does it, Thomas ventures—“it's more like ‘an unspecified number of times between one and several thousand, but definitely not six’”.

Maybe like receiving a ransom note, and reading that the only way to keep your family safe from harm is to follow a precise sequence of steps—but the ransom-holder is your own mind, not some exterior villain.

Or, more simply, like an itch you can never scratch. Imagine you're given a task and told you have to restart it every time you scratch your nose, and every second that passes your nose becomes twice as itchy. Until you can't think of anything but how itchy your nose is. You scratch it. You restart the task.

***

Accounts of obsessive-compulsive disorder and its symptoms go back as far as the 17th century.

Priests and religious writers wrote about the condition as a spiritual affliction, which they described as “religious melancholy”. Parishioners might be wracked by obsessive doubts, or compulsive behaviours.

In 1660, a Bishop in Ireland referred to obsessional doubting as "scruples", where a person could not be left alone by their doubts. He called it “trouble where the trouble is over, a doubt when doubts are resolved."

Today, OCD as a diagnosis is characterised by intrusive, unwanted thoughts and irresistible actions. Lifetime prevalence of the condition sits at around 2.3 percent—or one in about 40 people. Around 50 percent of those cases are considered “serious”—where they become severely disabling and dramatically affect people’s ability to function, work and live. The number of people who experience OCD isn’t quite as high as more common psychiatric diagnoses like depression and anxiety, but it’s still a substantial portion of the population.

Despite that, those with the condition say it’s rarely understood. In popular culture, it’s become synonymous with tidiness, or a preference for order. On Instagram and Tumblr, you’ll see the images with a pencil out of line, a misplaced tile, or a poorly aligned manhole cover: “to mess with your OCD,” the captions say.

“That sentiment of, ‘I’m a little OCD, I like my desk to be tidy’? Go f**k yourself.” Thomas says.

“If it’s not severely debilitating to your life and sense of self, it’s not OCD.”

As a child, Thomas’ first compulsions were to do with cleanliness: one hand to open doors, another for eating. Brought up in a churchgoing household, and attending a Catholic school, some of his compulsions merged with the teaching he encountered there. One day, a boy remarked that sitting with crossed legs was gay. Thomas didn’t know what gay was—but he knew it was bad. He became obsessed with keeping his legs straight.

As he grew older, the compulsions grew worse. He trailed off reading for pleasure, because he'd get stuck turning one page of a book over and over again. So too would he be robbed of other things he enjoyed: listening to music, watching films. “They just devolved into pressing play-stop-repeat-play-stop-repeat over and over again,” he says.

The commandment, “thou shalt not be a false witness” particularly worried him. Stumbling over a word, telling an accidental lie, making an error in your speech—all of them could place his soul at risk.

“I got to take that very seriously,” he says. “ I would phrase everything in terms of, ‘I think—but I’m not sure, that’s my opinion, that’s not fact.’ Being really obsessive about being clear with people, that I wasn’t telling a lie.”

I ask if there are hints of that old habit still, now, in his speech. Thomas speaks carefully, each word deliberate, in precise, fully constructed sentences, never meandering or fudging.

But he says there’s another reason that's at the forefront of his mind.

“I don't want to come off as ‘rambling’ or ‘crazy’," he says. “People without a diagnosed mental illness have the luxury of speaking from their stream of consciousness. Whereas I've always felt the onus on me to speak, and demonstrate that my thinking isn't hopelessly disordered.”

***

Thomas has tried to trace back his symptoms, and find their origin point. He’s had them for as long as he can consciously remember—back to when he was a four or five-year-old. Around that same time, his parents separated for the first time. When they split for good, a few years later, he developed Benign Focal Epilepsy—a kind of epileptic seizure that occurs largely at night, which children tend to grow out of by their teenage years. It’s not necessarily dangerous, but that didn’t make it less terrifying, Thomas says. He wonders, looking back, if the experience fundamentally shook his sense of being safe and functional in the world. He shuts his eyes to remember.

“I guess I felt like I had this insight that not everybody had. That, one of those base presets—you’re a person, you live in a body, and it serves you, had been proven to be false,” he says. “Then when I grew older, that extended to my mind.”

Other people might have certain assumptions about their mind or body being under their control. “But that wasn’t my experience at all. I knew that you couldn’t just trust your mind to be your obedient servant. Actually, your mind is a thing that could seek out the [strongest] aversions in your psychological makeup and exploit them—to what end, I didn’t know.”

So where does OCD come from? It’s not yet clear, despite breathless headlines last year claiming scientists had traced the cause to a single protein. [They’d in fact found that shutting down a certain protein led to OCD-like behaviour in mice]. Research indicates OCD has a high level of overlap with experience of trauma. Researchers had also noted that some of the same treatments are at times effective at treating both OCD and PTSD.

There’s no definitive answer as to how or why a person develops OCD, says clinical psychologist Colette Woolcock. It could be a neurological issue, or a chemical imbalance in the brain. There is some research that says if you have close relative with OCD, you may be more at risk—but that’s not conclusive. There could be a trauma; there could be a trigger event—“It’s really unusual for it to be one thing, it’s more likely for it to be a bunch of things,” she says. “The planets sort of need to all come into alignment for that person to develop OCD.”

For many clients, she says, the issue of control plays in.

OCD steps in to give you a sense of perceived control. “It says, hey look, here’s the goalpost, kick the ball over here and you’ll feel better, and then kick the ball over there. And then it moves them. And so that’s how the OCD gets bigger and bigger and worse and worse and spreads out. Because that person’s intending to get that false control, that perceived sense of control. “

Thomas has wondered whether things like his parent’s separation, his childhood epilepsy, the family’s moving cities could have contributed. “I think that feeling of being out of control, of being uprooted from all of my friends, groups and social circles was a big part of the development of the OCD,” he says.

“Everyone that I’ve spoken to—and this makes a lot of sense to me—has said that Obsessive Compulsions develop when you feel that you don’t have control in your everyday life, you develop an area of life that you can and have to have control over.”

For Kade and Jeremy, the pathway forward has been taking their OCD into one of the most public spheres possible: the realm of stand-up and performance.

The pair, who flat together, finish each other’s sentences, and also perform comedy together, both have the hand-washing rituals that are commonly associated with OCD.

“I’d do eight squirts of soap on each hand,” Jeremy says, sitting in a Wellington cafe with a ginger beer. “I used so much soap.”

“He’d go through liquid soap so fast, it was annoying,” Kade chips in.

“And then, it wasn’t really about washing my hands, more like the amount of soap that I used—it had to be eight [squirts] on each hand, and I would use eight paper towels as well. And after that, I’d wash my hands again with four on each hand.

If he got interrupted, he’d have to start again, as would Kade.

“There’s annoying stuff, just say you completed your routine and you go turn the tap off and then you bump the sink? That’s dirty as,” Kade says, “so I have to start all over again now, because that part of my hand is dirty. And if I grab my phone and touch it with that part of my hand, my phone’s dirty, and then if I put my phone in my pocket, my pocket’s dirty. So it’s like this.”

“It goes and goes,” says Jeremy.

The two have enough material now that they launched their own comedy show, You Me and OCD, at last year’s comedy festival.

Kade was diagnosed at age 12, but he remembers symptoms from when he was a small child: being at the shops, and suddenly realising he had to touch every item in a certain aisle before they left. Or being at the playground, and knowing he had to go on every piece of equipment before leaving.

If he didn’t, he had the indelible sense that something bad would happen. “Like if I don’t do this, something would happen to family or friends. And then you get this horrible sense of guilt that if something does happen, you’d be like ‘S**t, it’s because I didn’t do that thing that one time.”

Kade’s symptoms have been fairly severe over the years, but he’s found medication helpful.

In this sense, he is in the lucky half of the population. About 40-60 percent of patients will respond to the drugs most commonly used to treat OCD. It’s not clear why some patients respond and others don’t.

Kade now gets a certain kick out of spotting other people whom he thinks have the condition—a person walking down the bus aisle, who might subtly tap every seat on both sides as they go. It was actually Kade who first wondered whether Jeremy might have the same condition.

“I have to be facing the right way, you see,” Kade says. “So if I stand up and spin around, I had to spin around the other way to face the right way. Or if we walked around that block, our bodies have done a full 360 so I’d need to 360 back.”

One day, he saw Jeremy getting out of the car. He’d had to turn to get out—and upon exiting, spun 360 degrees around.

“And I was just like ‘why did you just do that?’”

“I told him I faced the wrong way,” Jeremy says, “and he’s like, ‘I think you’ve got OCD.’ So that’s when I went to the doctor.”

The pair is also passionate about introducing the realities of their mental health experience to a much broader audience. The show, they say, is about growing people’s understanding of OCD, and poking fun at some of people’s misconceptions. “I think some people can feel really overwhelmed and threatened by mental illness. They don’t understand it, like “why don’t you just go for a walk and feel better?”

Through the show, he says “We had an hour to not make light, or fun of a serious topic, but [to] give our spin on it and the humour that can come from it, and I think that was really welcoming for our audience.”

***

For Thomas, medication hasn’t been helpful. But adopting a regular meditation practice has helped to ease some of his symptoms.

“OCD is a malaise we don’t understand, that lives on the boundaries of what we can understand—in that liminal area between and what we do and don’t understand,” he says.

“When I’m able to maintain a meditative practice, I have a lot more insight in this area where feelings become thoughts and thoughts become coherent presences in the brain.”

“So meditation and mindfulness have been very helpful to me in noticing what’s going on…and gaining insights on where these thoughts are originating.”

That insight is also part of understanding how neurological and mental health differences express—and bucking off the assumption of sameness that can end up suffocating.

“It feels like society is saying to me, we’re all the same kind of individual, so let’s just get on with it,” Thomas says.

“But in here—” he points to his head “—my experience it’s just completely different.”

***

OCD is a form of anxiety disorder, and some anxiety is useful and necessary, Woolcock says: it prevents us from wandering blithely into danger. It’s key to remember that the majority of people even without diagnosis display some of the traits of OCD, she adds. With a diagnosis, it becomes a matter of not stopping completely the anxiety that surrounds compulsions, but using a mixture of treatments—that could include medication, cognitive behavioural or other therapies, mindfulness or meditation—and ‘turning down the volume’. Some can dial down those symptoms completely.

“I want to give the message to people with OCD of hope because when you’re caught up in the middle of it, it feels terrifying, it’s isolating and you feel completely trapped. From what I understand, it’s horrible,” she says. “I want to say, having worked with lots of people with OCD, that treatment is available: there is hope, that you can turn it right down. I’m really passionate about that. Because it distresses me as a therapist to hear people suffering like that.”

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