In the third instalment in our mental health series, Sarah Doran describes how the impact of Obsessive Compulsive Disorder is often underestimated
The news that an elderly couple were arrested for the suspected manslaughter of their housebound daughter sent shockwaves through the United Kingdom in early February. Samantha Hancox had battled an extreme form of Obsessive Compulsive Disorder for 20 years: her phobia of germs left her housebound as she showered for up to 20 hours per day and was unable to cook her own meals. Her elderly parents Ken and Marion were arrested on suspicion of neglect that was alleged to have lead to Samantha’s death.
The Director of UK based organisation OCD Action, Joel Rose, explains that there are two elements within the disorder: obsessions and compulsions.
“The obsessions are thoughts that you don’t like and you don’t want and you can’t get rid of,” she explains. “Those thoughts are really sort of anxiety thoughts, concerns about harm coming to a person or them causing harm to someone else. Those are thoughts that people can’t control or get rid of and they can’t ignore”, says Rose. “People will try different routines or rituals to try and quieten those thoughts”, he adds, illustrating the compulsive element of the disorder. “The compulsion in a way is kind of reducing the anxiety from the obsession.”
However Rose also highlights that “some people just have the thoughts without the ritual”. This condition is known as Purely Obsessional OCD. Commonly referred to as ‘Pure O’, this form of the illness is distinct from traditional OCD in that it features no outward manifestations; instead, both the anxiety-inducing obsessions and the relief-seeking compulsions of OCD take place only in the mind.
In the early 20th century, the disorder was considered rare: today it is recognised that OCD is a much more common condition than was previously suspected. Indeed, the World Health Organisation has recognised OCD as one of the top ten most debilitating illnesses. Estimates suggest that OCD affects around 2 to 3 per cent of the population. In the UK, this amounts to around one million people, whilst in Ireland the disorder affects in the region of 1 in 33 to 1 in 50 people.
The disorder does not discriminate, affecting individuals of all ages and sexes: OCD affects males as frequently as it does females. Many people suffer from the disorder, unaware that they have OCD symptoms. In fact, it is suggested that many adults with OCD would have had unrecognised symptoms of the disorder during childhood that subsequently went undiagnosed.
Some of the most famous figures in history have reportedly suffered from the disorder: the list of suspected OCD sufferers includes Charles Darwin, Albert Einstein, Ludwig van Beethoven and Michelangelo, while one of the most famous English footballers in recent years, David Beckham, suffers from OCD.
“I have got this obsessive compulsive disorder where I have to have everything in a straight line or everything has to be in pairs,” Beckham said in a television interview filmed in 2006. “I’ll go into a hotel room. Before I can relax I have to move all the leaflets and all the books and put them in a drawer. Everything has to be perfect. I’ve tried and I can’t stop,” he adds.
Despite medical advances, amongst the experts, there is still a great degree of uncertainty as to what causes Obsessive Compulsive Disorder to develop. “There’s no sort of definitive evidence either way,” says Rose.
“Most people feel that there are a number of things that can make it more or less likely that someone will develop OCD ranging from genetic factors, brain chemistry, environmental factors, things that happen in your life. These can all conspire to make someone more likely to develop it. Ultimately though, what we say at OCD Action is that whilst there’s a lot of debate about what causes it, there isn’t much debate about how to treat it. Therefore that’s the part that we focus on.”
Diagnosing OCD would seem to be a far more straightforward process than attempting to explain the origins of the disorder. Counselling Psychologist Leslie Shoemaker, an advisor to OCD Ireland, explains that the diagnosis of OCD is often a “clear cut” process as the “diagnostic criteria are actually internationally recognised”. However, as Rose highlights: “The problem is trying to get people to the doctor in the first place.”
Shoemaker agrees that encouraging patients to see their doctor can be an incredibly difficult process and “often, there is a lot of shame attached to OCD. The strange thing about OCD is they’ve realised that a lot of OCD thoughts are the same thoughts that people without OCD have,” Shoemaker reveals. “What happens is how people with OCD interpret these thoughts. There tends to be a lot of shame and a lot of stigma and a lot of secrecy, especially when you have a lot of thoughts around a fear of being a paedophile, or a fear of being gay.
“These are things that society is currently grappling with and therefore are quite a hot topic and they prevent somebody from going forward. Other common fears are ‘I’m going crazy’ or ‘I have schizophrenia’. They think that there’s something really significantly wrong with them when the reality is they have a disorder that can be treated quite successfully.”
She points to the lack of discourse in society as regards mental health as one of the reasons people fear approaching their doctor: “I find it interesting that when we have a cough, when we have a cold, when we have an ache or pain, people are very quick to go to their GP and say: ‘Hey, what’s wrong with me?’
“But when there is something else wrong with us in terms of mental health, the stigma is ‘oh, they’re crazy’, all of these terrible things that we say. Therefore this prevents people from going and getting help even for depression, anxiety, as well as OCD and other problems.”
When diagnosed “by and large, the treatments are pretty successful for most people” says Rose. He explains that OCD is treated using a combination of Cognitive Behavioural Therapy and medication. Cognitive Behavioural Therapy involves learning “a different way to respond to the thoughts. It’s not about necessarily trying to find out where they come from or even necessarily stopping them, it’s just about responding differently to them.”
Medication for OCD patients can involve “SSRI, which stands for Selective Serotonin Re-uptake Inhibitors. They’re also used in depression so they’re quite commonly called anti-depressants although because people are on them, it doesn’t mean that they’re depressed. They effect what’s called the serotonin, which is basically, a brain chemical,” explains Rose. “By and large, the treatments are pretty successful for most people, with [a combination of] medication and Cognitive Behavioural Therapy.”
For young people with OCD, the experience of living away from home when starting university can trigger symptoms, with stress causing these symptoms to become worse. It has been suggested that OCD can become most severe during the years spent at university as students with the disorder attempt to cope with the academic and emotional demands of a student lifestyle. But Shoemaker believes that “it depends upon how severe the OCD is, it depends upon how comfortable you are with your OCD.
“I’ve met people who told me ‘for ten years I just ignored the OCD, I pretended it wasn’t there and it made me more stressed.’ I work in DIT so I work with college students and I have college-age students in my private practice.
“I find that when somebody is ok with the diagnosis, they don’t have to go tell everybody, but when they’re comfortable with the diagnosis, they know it’s just one small aspect of them and that they are far more than their OCD, then things are a bit easier. The key thing is to let people know that treatment is available and it is so treatable, they can live very normal lives.”
For Samantha Wilcox OCD proved fatal: her case was an extreme example. Though there is no cure as of yet, through support networks, individuals suffering from the disorder can take positive and progressive steps and learn to cope more effectively. Support groups remind sufferers that they are not alone in the battle with this often-overlooked disorder.
Contact the St. Patrick’s Support Helpline on 01 249 3333. It provides 9am to 5pm answering and callback service outside of these hours and is staffed by experienced Mental Health Nurses.
OCD Ireland hosts three monthly support groups at St. Patrick’s University Hospital, Dublin. The organisation will also host a talk given by Dr Jim Lucy, one of the leading Irish experts in the disorder in the coming months, details of which can be found online on the OCD Ireland website.