The new OCD generation
EVER since she can remember Alisha Gregg has been “a worrier”. As a small child she’d sleep on her bedroom floor because she feared if she got too comfortable on her mattress and fell into a deep sleep, she might attack a member of her family. At primary school she worried she’d broken rules and routinely confessed to misdemeanours teachers said she couldn’t possibly have committed.
By the time she was 15 her fear of hurting someone had mushroomed to include friends and random strangers. She remembers walking across the bridge to school in her native Belfast, Northern Ireland, consumed with anxiety that she might push her friends, one by one, over the edge into the water below. These images were so vivid and terrible she could picture their bodies being pulled from the river, the faces of the people who witnessed her commit this crime and the stigma that would hang over her forever afterwards.
“I was convinced I was this horrendous person. I felt shame for all the thoughts I was having and hid them from everyone,” Alisha says. Even her mother had little idea what was going on beyond the fact her daughter seemed to be more punctilious than the average teenager.
“I thought I was the only person in the world like this.”
After a school assembly talk on the importance of exam timetables, she began devising schedules, at first for the month ahead, plotting when she would be at school and what she’d do at home. She believed that as long as she stuck to these targets she wouldn’t harm anyone. Then it occurred to her that the rhythms of each week were different, so she started a second weekly plan. Within months this had evolved into a third schedule to cover each day. Soon she had to allow a quarter of her waking hours to schedule the schedules.
“I was obsessed about being in the right place at the right time. I allowed three minutes to brush my teeth, one minute to wash my hands. It got tighter and tighter until my life was organised minute by minute,” the highly articulate and vivacious 18-year-old says.
It’s one of the most debilitating and misunderstood mental conditions and used to be rare among children – now it hits one in 100. Teens reveal how their lives are dictated by obsessive-compulsive disorder
New routines inexplicably developed. “To feel right” everything had to be done in fours. Alisha would count her steps in fours, buy four bottles of water when she arrived at school, go out only with a group of three friends and eat only if there were four things on her plate. She’d spend entire classes counting her breath in fours and making sure the four pencils on her desk were exactly a finger’s width apart. She compulsively asked her friends and family if they were okay in case she’d hurt them.
As exams loomed, new obsessions materialised: an A-grade student, she became convinced she might cheat or plagiarise someone else’s work. Finally, the only respite she got from the violent images, endless scheduling and punishing routines was when she fell asleep at night.
“I knew rationally that I was being ridiculous, that just because you think something doesn’t mean it’s going to happen, but I kept going with the routines because I thought I was better safe than sorry,” she says. “It wasn’t worth the risk.”
WHILE most of us can rationalise our strange and random “what-if ” notions, in the case of OCD sufferers they latch on and don’t let go. Teenagers like Alisha describe this as akin to being bullied. The word “obsession” is derived from the Latin obsessio, meaning a besieging.
In an attempt to neutralise the anxiety and prevent the obsession from happening, they perform repetitive, rigid routines called compulsions, which can take up hours every day. By a cruel twist, the more compulsions they perform, the more the worry increases. Sufferers find themselves ensnared in a cycle of anxiety that infests all areas of their life. Alisha draws me a graph perfectly illustrating the ever-increasing peaks and troughs of this stress response.
“The more you carry out the compulsion, the stronger the obsession gets each time,” she explains.
The World Health Organisation (WHO) ranks OCD as one of the world’s 10 most disabling illnesses. Groundbreaking research published last year by the Karolinksa Institute in Sweden showed that adults with OCD are 10 times more likely to commit suicide than those without the disorder.
Yet it remains one of the most poorly understood mental health issues.
In recent years, it’s entered the lexicon as comic shorthand to describe people who like to be clean and organised. BuzzFeed recommends “33 meticulous cleaning tricks for the OCD person inside”, as though the condition is something good. Astonishingly, the British TV series Obsessive Compulsive Cleaners depicts people with OCD cleaning the homes of hoarders, turning an anxiety disorder into entertainment.
“OCD robs you of your life. It quickly takes over, and unlike depression, where there is a natural history where it will remit itself, it’s chronic. It’s a hideous disorder,” explains Bruce Clark, consultant psychiatrist at the UK’s only specialist OCD clinic for young people. The Maudsley Hospital in south London treats 108 children from all over the country with the most severe symptoms.
“A huge number of kids are completely out of schools and social networks for two or three years.” Many of these spend between eight and 15 hours a day on their obsessions and compulsions.
Once considered rare among children, OCD is estimated to affect around one in every 100 children under the age of 18, Clark says. The true figure is probably higher because so many endure in silence, their lives hijacked by a pernicious mental illness that if left untreated will carry on into adulthood.
This is in part because the obsessions that frame OCD are mostly invisible. But also because their distressing content makes it very difficult for children to articulate what’s going on in their head. Some believe revealing their obsessions makes them more likely to happen. Others are simply terrified of the stigma and shame of revealing forbidden thoughts.
OCD obsessions cruelly reflect a child’s greatest fears and often mirror contemporary taboos or current affairs. So while records from the 16th century detail intrusive thoughts about syphilis and blasphemy, the late ’90s saw a spike in HIV-related obsessions. After the recent Netflix series 13 Reasons Why, there was an increase in calls to hotlines from young people terrified they might kill themselves.
Professor Isobel Heyman, consultant child and adolescent psychiatrist at Great Ormond Street Hospital in London, says the most common fears include worries that a parent or favourite pet might die. She has treated young children who get up at 20-minute intervals through the night to check their pets are alive, and others who are so afraid of passing on germs that might harm their parents that they spend seven hours a day in the shower.
Heyman, one of the foremost British experts on OCD, was involved in research that shows more than a quarter of children with the condition have highly distressing and vivid sexual obsessions. These include worries that they might commit incest, rape or even be paedophiles. She has seen children who are so
Some are so afraid of passing on germs they spend seven hours a day in the shower
convinced they could be child abusers that they refuse to go to school, visit playgrounds, leave the house or even touch their siblings.
“The obsessions are often aggressive and perverse. But that doesn’t mean the child has any interest in doing these things. Indeed, they are disgusted and distressed by their thoughts,” she says.
AS I sit chatting to 16-year-old Abbie Smith in a café close to her home in south London I offer to buy her a drink and snack but she politely declines. Abbie explains that it’s been more than two years since she’s bought anything to eat or drink outside her home, because she has a morbid fear of being sick. If she goes out, she brings water in a plastic bottle that she later throws away.
Abbie is terrified of anything that could make her vomit. She is completely reliant on her mother to cook for her because even though she compulsively checks sell-by dates, she doesn’t trust she has read them correctly. Even then, she scans the internet to make sure there have been no reports of E coli in ingredients sourced by her mother from the local supermarket. “The doubt is one of the worst parts. Nothing ever feels certain and that is terrifying,” she says.
Her most distressing compulsion involves checking her gag reflex many times a day and squeezing her stomach as hard as she can until she gets acid reflux to make sure she doesn’t feel sick.
Going out is progress, she says. Last summer, between May and September, while waiting for treatment, she left her bedroom only to go to the toilet. According to Clark, one fifth of the children treated at the Maudsley OCD unit are seen at home because they no longer leave the house.
OCD is a particularly cruel illness in young people because much of it is hidden beneath the surface, invisible to those who love them most. Films about Howard Hughes or the TV series Monk have turned hand-washing into the most widely known OCD trope, even though in reality it is one of many rituals. Compulsions are often mental as well as physical, involving the repetition of words, counting numbers or reciting mantras to neutralise “bad thoughts”.
When 14-year-old Reuben Fletcher began taking more and more time to get ready to leave the house in the morning, his parents’ initial response was growing impatience at his apparent inability to fit in with the usual rhythms of daily family life. A gifted and focused student, Reuben stopped finishing homework, arrived at school late and lost concentration in lessons – even in history, a subject he’s particularly passionate about. He became fussier about food and stopped touching his mother, Luned Tonderai, a documentary-maker.
“It caused a lot of arguments,” says his father, Sean Fletcher, a British TV presenter. “We would be trying to get out of the house and find Reuben standing frozen in a world of his own.”
Although almost all teens with OCD describe their younger selves as anxious, the disorder often breaks to the surface during the hormonal changes of adolescence and can be mistaken for classic teenage self-absorption and selfishness.
For Reuben it started with worrying thoughts that something bad might happen to one of his parents unless he performed his rituals. “I thought I was going mad,” he says emphatically. “I couldn’t write properly, because everything had to be perfect. I was late for school because I couldn’ t decide which way to walk around lampposts. One of my compulsions was having to fake-cough a certain number of times in lessons.” Hi s thought s made Reuben feel he was a bad person. All the teenagers I’ve spoken to describe this sensation, despite the fact that they’re unusually empathetic, sensitive and kind. An insidious aspect of the illness is the way that even when finally diagnosed, children think doctors might have got it wrong and that they’re simply evil people. “I thought I had done something really bad. I would think about it all the time. I couldn’t enjoy anything and if I did, like playing football with friends, I knew I would have to pay for it,” Reuben says. “It ruins your life.” For parents, one of the most desperate aspects of the disorder is how their innate instinct to help and be supportive can end up fuelling the illness. When a child is so distressed by their thoughts that they can’t get dressed or brush their teeth, it’s only natural to want to lend a helping hand. “It wasn’t until a therapist told us that we realised we were being sucked in to doing everything for Reuben,” Luned says. According to Heyman, children often seek reassurance without parents realising that it’s actually a compulsion that
‘The most difficult thing is sitting with the anxiety. Waiting for it to calm down is terrifying'
exacerbates their anxiety loop. Reuben describes lying in bed at night ruminating over a thought for hours and then waking his parents for reassurance.
For Sean and Luned, like all parents of children with OCD, it has been a very painful journey. Once the OCD broke cover, they struggled to understand the illness, particularly the way the compulsions shape-shifted so that just as one disappeared another took its place, sometimes giving the illusion of progress where there was none. They found it frustrating when Reuben seemed fine with his friends and retreated back into silence when he was with his family. In reality, Reuben says he was catching up with rituals that he had been forced to postpone.
At the moment Reuben is being homeschooled by his parents. “We’ve been so alone with this,” Sean says.
THE causes of OCD remain unclear. But professionals are adamant it doesn’t stem from parenting style or traumatic events, such as the death of a family member or bullying at school, although these can be triggers. “There’s no root cause,” Heyman says. “It’s the way the brain is made. It’s down to the genetic make-up of patients. Ordinary life stresses, such as exams or friendship difficulties, can make symptoms more likely to appear in susceptible individuals.”
While the causes of the illness remain unclear, brain scans of OCD sufferers demonstrate hyperactivity in the basal ganglia and the prefrontal cortex, where complex decisions are processed. It’s thought that the neural loops between these areas are overactive in the brains of OCD sufferers, a situation that Clark compares to a faulty car alarm going off all the time.
Experimental treatment in the Netherlands, in which electrodes are implanted in the basal ganglia to interrupt these loops, has shown some promise in patients with severe OCD, although the risks associated with brain surgery are high and the treatment is crude, Clark says.
In children, more than half will have inherited genes predisposing them to the condition. Abbie’s family, for example, have a history of anxiety disorders on her mother’s side.
Once diagnosed, though, there is highly effective treatment available that will cure around 75 per cent of children.
There’s worldwide consensus on the gold-standard treatment for OCD. The process usually features the use of selective serotonin reuptake inhibitors (SSRIs) such as fluoxetine (Prozac) and always involves 12-20 sessions of intensive cognitive behavioural therapy (CBT) with exposure and response prevention (ERP).
“Neuroimaging shows that CBT alters brain chemistry,” Heyman says. “The key step is making the diagnosis. OCD is really treatable once it’s detected.”
CBT helps sufferers to face up to their fears and obsessions by learning how anxiety works, how to challenge intrusive thoughts and how to live with life’s uncertainties.
ERP helps to deal with situations that trigger compulsions by exposing children to their feared situation over and over again until they become habituated and acclimatised to the anxiety and stimuli. A child who worries about being a paedophile, for example, will collaborate with their therapist and choose to look at triggers such as adverts for Pampers nappies over and over again until they no longer cause anxiety. In Alisha’s case, her early goals involved moving her textbooks and pencils out of place for ever increasing periods of time.
“You learn to rationalise it, to put it off. You’re taught how to avoid feeding it and how to teach the people around you not to feed it,” Alisha says.
Abbie is currently seven sessions into her 18-week programme at Maudsley. She’s drawn up a hierarchy of her worst fears. At the top is eating in a restaurant or at a friend’s house. The successful part of this week’s ERP session involved some of the challenges towards the bottom of the ladder, such as looking at pictures of people being sick or words that mean vomit, something she’s managed to keep doing at home. She hasn’t managed yet to smell perfume from a bottle the therapist brought into the session. Other targets include reducing the number of times she checks sell-by dates.
Clark compares this process to systematically removing bricks from a wall until there are so many holes that the OCD collapses. “You can’t stop the thoughts, but if you resist the compulsions you can stop the anxiety,” he says.
The therapy isn’t pleasant, because it involves inducing the very anxiety that sufferers are trying to avoid so they learn to tolerate it. It takes time to work and requires a lot of homework to be effective, because sufferers have to practise and prove to themselves that anxiety comes down.
“The most difficult thing is sitting with the anxiety. Waiting for it to calm down is terrifying, but when it does it gives you self-esteem and puts you back in control,” Abbie explains.
But Alisha is living proof that this therapy works. She has campaigned at her school to raise awareness about OCD among children and has joined the youth advisory panel at OCD Action. She’s accepted a place at Durham University to study psychology and education.
“I’ve developed coping mechanisms that work,” she says. “When the thoughts come to me, I tell myself that I have felt this before and survived. It’s just a thought.”