For Stevie, this is how it all began. At age 12 he started to obsess about his breathing, constantly checking to make sure he was still alive.
Stevie said: “I could obsess about my breathing all day long. It would make me panic, and I found it extremely hard to concentrate.”
Soon, Stevie found other problems beginning to emerge, including a compulsion to crack his joints and pull out his hair. At age 21 Stevie’s troubles worsened. After watching a television programme about a homosexual relationship, he began to obsess about his own relationships and sexuality. Before long his life began to spiral out of control.
Stevie said: “My life was being controlled by my thoughts. I found it difficult to function both at work and socially. I had visions of suicide and could spend some days obsessing about the quickest way to kill myself. I was having an emotional breakdown.”
Stevie is just one of over 101,000 people in Scotland who suffer from Obsessive Compulsive Disorder (OCD), which according to the World Health Organisation, is one of the top 10 most debilitating illnesses in terms of lost income and decreased quality of life. According to the support group OCD-UK, OCD is the 4th most common mental disorder nationwide after depression, alcohol and substance misuse, and social phobia.
OCD takes on different forms in different people. For most sufferers, the disorder is composed of two parts: obsessions and compulsions. These sufferers are overcome with neurotic thoughts, and as a response to these thoughts, they feel the uncontrollable need to engage in certain types of behaviour, which can take the form of physical actions, such as hand washing, or mental actions, such as silently counting. For other sufferers, like Stevie, OCD can also appear in the form of ‘Pure O’ – where the person is overcome with obsessive thoughts, but those thoughts are not always accompanied by compulsive actions.
Stevie said: “Because there are very few or no physical compulsions, sufferers of 'Pure O' generally keep their disorder quiet. They are embarrassed to speak about such bizarre thoughts.”
Clinical therapist Dr Fred Penzel said: “[OCD] has been referred to as the hidden epidemic. People with OCD are not crazy. They realize that their thoughts and behaviours don't really make sense. Therefore, they keep their thoughts to themselves and do their compulsions out of sight of others. There is a big shame factor here.”
Like many OCD sufferers Stevie had a problem trying to get a medical diagnosis.
Stevie said:”My experience of the NHS is that they have very limited knowledge of the disorder and find it hard to make a diagnosis and get sufferers the correct treatment. There also seems to be a distinct lack of therapists within the NHS to treat sufferers, which means long waiting times.”
According to the UK’s leading OCD expert, Prof Paul Salknovskis, there is an average 17 years between onset and diagnoses of the illness, and sufferers can spend up to 2 years on clinical waiting lists for treatment. Salknovskis said this is due to problems with resources at all levels, from government funding to local GPs. He added that there is also no universal treatment method for OCD.
Salknovskis said: “Some are offering alternative types of therapy like Freudian therapies, which are ultimately no good and can even make OCD worse.”
To fix the problem, Prof Salknovskis said that there needs to be a reorganisation and retraining of people as well as a redistribution of money.
Caroline Jannetta, who helps run an informal OCD Support Group in Edinburgh, said: “There is a lack of understanding about OCD. Most people think it’s psychological. It’s not a psychological disorder. It’s a neurobiological disease that needs to be treated by a combination of medication and behavioural therapy.”
While medical evidence shows that OCD is a biological disorder, the actual causes for OCD are unknown. Still, studies have found that the brain reacts differently in people suffering from the disorder, such as increased activity in the front part of the brain – with biological synapses firing, transmitting signals that something is wrong over and over and over again like a broken record.
In his book, Brain Lock, Dr. Jeffery Schwartz outlines to what extent OCD is medical problem and how the symptoms can be overcome both with medical therapy as well as a Buddhist Philosophy of Mindfulness – a redirection of attention through various forms of meditation, mental exercises and self understanding.
While Professor Paul Salkovskis says that the success of mindfulness has not been scientifically proven, he does advocate the effectiveness of Cognitive Behavioural Therapy (CBT). CBT is a psychological treatment that looks at how people with OCD think. It uses ‘behavioural experiments’ whereby OCD sufferers expose themselves to what makes them feel anxious, but they do not follow through with their usual compulsive rituals. This allows them to see for themselves what happens when they do not play into the hands of their OCD.
Prof Salkovskis was scheduled to be the featured speaker in this July’s OCD conference in Edinburgh, organised by OCD-UK. But due to the organisation’s lack of funding the conference was cancelled and the support group faced closure. However, through the fundraising efforts of its members - members like Stevie who having gotten his own illness under control, participated in a 95 mile walk to help raise funds for OCD-UK- the organisation has managed to raise enough money to remain open for the next year.
Stevie said: “The walk was gruelling and tiring but much enjoyed all the same. The aim was to raise as much money as possible for OCD-UK, which in turn could be spent helping sufferers and raising the profile of the disorder.”
Organisers say they hope to raise enough funds to bring the OCD conference back to Scotland in 2007.
*Stevie’s name has been changed for the purpose of this article