Britain’s Misdiagnosed Epidemic

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Sarah Sparks explores the inner minds of those suffering from Obsessive Compulsive Disorder and why the cancelling of July’s OCD conference in Scotland was a setback for individuals diagnosed with this ‘hidden epidemic’.

Breathing: It is something most of us take for granted. From the moment we first enter the world to the moment we leave it – we breathe. It is an instinctive, mechanical reflex. We never give it a second thought. But for some people even a simple, basic act – such as breathing – can become an obsession, taking over and breaking into pieces their otherwise normal lives.

For Stevie*, this is how it all began. At the age of 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 noticed other problems beginning to emerge, including a compulsion to crack his joints and pull out his hair. At 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 ten most debilitating illnesses in terms of lost income and decreased quality of life. According to the support group OCD-UK, OCD is the fourth most common mental disorder nationwide, affecting more than one in every 40 people.

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 by neurotic thoughts. As a response to these thoughts, they feel the uncontrollable need to engage in certain types of behaviour. These can take the form of physical actions, such as hand washing, or mental actions, such as silently counting. For some 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.”

Dr Fred Penzel a clinical therapist 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 Salkovskis, there is an average of 17 years between onset and diagnosis of the illness, and sufferers can spend up to two years on clinical waiting lists for treatment. Prof Salkovskis says that this is due to problems with resources at all levels, from government funding to local GPs, and also due to the fact that there is no universal treatment for OCD.

Prof Salkovskis said: “Some doctors are offering alternative types of therapy, like Freudian therapies, which are ultimately no good and can even make OCD worse.”

In Stevie’s case alternative therapy did make his OCD worse. Because of the nature of Stevie’s obsessions, his doctor referred him to a sexual therapist. Stevie said: “I explained my thoughts to her, and she immediately tried to convince me to accept myself, i.e. possibly being gay. This was the last thing that I wanted to hear and made things 10 times worse.”

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. 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 of OCD are unknown.

In his book, Brain Lock, Dr. Jeffery Schwartz outlines how the brain reacts differently in people suffering from the disorder. Dr. Schwartz claims OCD symptoms can be overcome both with medical therapy and the practicing of the Buddhist Philosophy of Mindfulness –a redirection of attention through various forms of meditation, mental exercises and self understanding.

While Prof 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, a charity run by sufferers for sufferers. But due to the organisation’s lack of funding the conference was cancelled and the support group faced closure. Having raised enough funds to remain open for the time being, the group hopes to permanently stabilise its finances and bring the conference back to Scotland in 2007.

OCD-UK managed to stay financially afloat through the fundraising efforts of its members – members like Stevie who, having got his own illness under control, participated in a 95 mile walk to help raise funds for the organisation.

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. This [support group] for me is a big thing, as I now know that I am not alone, but there are thousands of people out there going through the exact same experiences.”

* For the purposes of this article, Stevie asked that his last name not be revealed.