The Essential Guide to OCD: Help for Families and Friends

By Helen Poskitt

Are you living or working with someone who has Obsessive Compulsive Disorder (OCD)? Perhaps it's your partner or child; a parent, close friend or work colleague? Diagnosed as often as diabetes, the condition can lead both sufferers and those around them to feel isolated. However, you are not alone. This practical guide enables families, carers and friends to provide invaluable support for those with OCD. It aims to inform those living alongside OCD about the condition and to provide clear and compassionate strategies for them. With this new understanding, readers will feel better able to cope better with OCD manifestations. Commonly-experienced emotions such as bewilderment, frustration and sadness will gradually subside. The Essential guide to OCD includes interviews with those at the rock-face: relatives, friends and colleagues of those with OCD. The latest medical advances and effective treatments, such as CBT, are also explored with insight from mental health professionals.

• Language: English
• Publisher: Lion Books
• Release date: Apr 17, 2013
• ISBN: 9780745957159

Helen Poskitt

Helen Poskitt is a published ex-freelance journalist, poet and author. She has received favourable responses from both OCD sufferers and mental health professionals to her written work relating to OCD. She is the author of The Essential Guide to OCD: Help for families and friends.

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Introduction

This book is aimed at supporting relatives, friends and colleagues of people with Obsessive–Compulsive Disorder (OCD). It will enable carers to better understand how they can help individuals they know who have the condition. There is little doubt that a hidden epidemic¹ of OCD exists, but there is hope for both sufferers and carers.

Is mental illness the last taboo subject? Not any longer. Public figures such as MPs, celebrities and other role models are increasingly confessing to mental health problems such as OCD and depression. This, along with increased scientific research, is greatly reducing the old-fashioned stigma and secrecy associated with mental illness.

OCD is associated with a high IQ. It is thought in retrospect that Darwin, Beethoven, Dickens, Michelangelo, Churchill and Einstein, among other luminaries, suffered from the condition.

This condition is becoming more visible via popular television series, for example Frasier, Monk and Friends. OCD also features in films such as As Good As it Gets, The Aviator and What’s a Nice Girl Like You Doing in a Place Like This?

WHAT IS OCD?

Robert Ackerman, an OCD expert, has memorably described OCD as a cult of one. It can be difficult for people who don’t experience OCD to understand why someone they know is behaving oddly. OCD has been classified as an anxiety disorder. Whatever we feel as onlookers, mocking or ignoring or trying to minimize the anxiety felt by an OCD sufferer will not make them feel better – just the opposite. They are experiencing a personal hell, however normal they may appear.

Families and/or carers can help people with OCD enormously, by learning about the condition and offering practical and emotional support. Helping does not mean colluding with the OCD sufferer’s rituals and worries; but it does mean being kind, patient, and supportive.

How does OCD affect sufferers?

Many of us entertain satisfying scenarios of a terrible end for the motorist who has just almost involved us in an accident – but the thoughts (and motorist) quickly and harmlessly depart. The significance attached to such an idea by someone with OCD is where the problem lies. Despite their efforts to confront or ignore disturbing thoughts – of which there may be many – the ideas constantly reoccur. OCD sufferers therefore can experience fear, disgust and anxiety on a daily basis.

A person with OCD often carries out repetitive rituals to try to neutralize such upsetting thoughts. However, these compulsive rituals only provide short-term relief. They can easily escalate in frequency from a few times per day to hourly, as the action – for example, hand-washing – becomes less effective at combating the person’s distress and self-doubt. The hand-washing ritual may be completely unconnected to worries about hygiene.

Compulsive rituals by OCD sufferers can include: excessive cleaning, washing, checking, repeated requests for reassurance, and hoarding. Practices also include: showing an aversion to/preference for certain numbers; repetitive nervous actions such as switching lights on and off; checking that taps and cookers are turned off; entering and leaving rooms; checking the locks on doors. Note the italics above – there’s nothing wrong with having a clean body, taking precautions against fire or flood, or checking that you’ve done your best to thwart burglars. The problem arises when the behaviour causes the individual with OCD to stop functioning adequately in daily life.

Few emotional disorders are as devastating as OCD. Patients often have difficulty with work, school, and in maintaining social and emotional relationships. When describing OCD, sufferers speak of being hyper-aware of everything happening around them. This naturally generates tension. Then factor in the brain sending false messages of danger to the person, in the form of obsessions, and stress predominates. Dr Jonathan Abramowitz, an OCD expert, says: Sufferers undertake a measureless struggle… [against] recurrent thoughts, images, impulses and doubts that, although senseless on one hand, are perceived as danger signs on the other. When individuals can get a grip on their OCD – it is not easy – they recognize and re-label these false messages as just an OCD thought, or powerless ghosts and goblins.² They then understand that despite their nightmarish thoughts, nothing dangerous has happened after all.

In 1875, Legrand du Saulle referred to OCD as the folie du doute – the doubting disease. Someone with OCD constantly doubts themselves, largely because their normal common sense is overwhelmed by sudden terrifying thoughts. It is very difficult for an OCD sufferer to access enough inner calmness to put these thoughts into perspective at the time. When an OCD moment hits, the person experiences the same panic as a parent would on seeing their child running into a busy road. It’s easy, though, for an onlooker to underestimate the terror someone with OCD is experiencing, as sufferers understandably try to conceal it.

People with OCD may also ruminate. This is when thoughts keep recurring for no apparent reason and revolve around a common theme. There is little difference between ruminations, obsessions and worries. They all trigger iterative (repetitive) thinking.

If we were to summarize in a simple format the thought processes of people suffering from OCD, it would run like this:

worries typically focusing on daily concerns

obsessions which may be more intrusive than worries

obsessions then lead to compulsions and rituals (Turner et al., 1992).

What links them all is anxiety. Altering the relationship between obsessions and compulsions centres on reducing this anxiety (Hodgson & Rachman, 1972; Rachman et al., 1976).

OCD isn’t made any easier to understand by the changeability of the symptoms. Many sufferers may only have one pattern or ritual of OCD behaviour throughout their lives; for instance, checking too often that the front door is locked. Others will have multiple obsessions and compulsions, such as checking, hoarding, washing, and contamination fears. Someone who has intrusive thoughts in adolescence may turn to washing excessively in early adulthood, and then become a checker in later life. On the other hand, many forms of repetitive behaviour may be mistakenly labelled as OCD. It’s important to remember that to be defined as OCD, the pattern of behaviour must result in significant impairment, distress or anxiety, or become too time-consuming. It must take up more than an hour a day.

It is normal to have occasional thoughts about falling ill or concerning the safety of loved ones, without these being obsessions. Similarly, not all repetitive rituals are compulsions. Bedtime story-reading, religious practices or learning a new skill involve repeating an activity, but are a customary and often enjoyable part of daily life.

Someone you know with OCD might appear paranoid and their actions alienating, but it is worth emphasizing that people suffering from OCD are not mad; they usually recognize that their obsessions and compulsions are irrational and rarely act on them.

HOW COMMON IS OCD?

OCD is far more common than people realize. The condition has been estimated to affect 1 to 3 per cent of the population (National Institute for Clinical Excellence, 2005). Approximately 741,500 people in Britain are experiencing OCD at any given time, equating to twelve out of every 1,000 citizens. Less than a quarter of these cases could be classified as mild, with the rest being severe. It has been suggested that 2 to 3 per cent of people visiting their doctor will be doing so concerning OCD – it is diagnosed almost as often as asthma in the UK. OCD is also very egalitarian. It affects people regardless of their race, religion, sex or socio-economic group. It is the fourth most common mental disorder in many Western countries. It’s not just a Western disorder, though: according to a study in 2008,³ Japanese OCD patients show similar symptoms to those in the West. The condition transcends geography and culture.

In the USA, it is estimated that about 1 in 100 adults – or between 2 and 3 million adults – currently have OCD. This is a similar figure to that of the population of Houston, Texas. There are also at least 1 in 200 – or 500,000 – children and teenagers with OCD (statistically the same as youngsters who suffer from diabetes).

The ratio of female to male OCD sufferers is pretty equal in the adolescent population. It is estimated to be 1.5:1.0 in the community as a whole. However, men predominate in surveys of OCD referrals – perhaps reflecting more acute illness in males.

DIAGNOSIS AND MISDIAGNOSIS

Many people believe that the sooner OCD is identified and treated, the better the chance of recovery. The organization OCD-UK advises, for example, that early intervention is vital. It’s therefore important to have a correct diagnosis. Even if the patient has had OCD for a long time, there is still a chance of successfully treating the illness. (The average time between onset of OCD and diagnosis is sixteen years.) An accurate diagnosis will greatly help in the process of improving the quality of life for both sufferer and carer.

Normally following a visit to the GP, formal diagnosis may then be performed by a psychologist, psychiatrist, clinical social worker or other licensed mental health professional. To be diagnosed with OCD, a person must have obsessions, compulsions, or both, according to the Diagnostic and Statistical Manual of Mental Disorders (DSM).

OCD is diagnosed on the basis of a psychiatric examination, a history of the patient’s symptoms and complaints and the degree to which the symptoms interfere with daily functioning. Based on the nature, length and frequency of the symptoms presented, the doctor will differentiate OCD from other diseases with similar symptoms. These include phobias, schizophrenia, panic disorder and generalized anxiety disorder. A physical examination may also be ordered, to rule out other causes of the symptoms. As yet, there is no blood test available with which to reliably diagnose the condition.

There are several tools that mental health professionals use to aid a diagnosis of OCD. The Yale-Brown Obsessive–Compulsive Scale (YBOCS) is a questionnaire used to help target obsessive–compulsive symptoms and to assess their severity. It’s also used to monitor and assess clinical response to treatment.

Other means of assessment include the:

Compulsive Activity Checklist (CAC)

Leyton Obsessional Inventory (LOI)

Maudsley Obsessive Compulsive Inventory (MOCI)

Padua Inventory (PI)

NIMH Global Obsessive–Compulsive Scale (NIMH Global OC).

Despite this, it’s not surprising that there’s a risk of occasionally misdiagnosing OCD. Abramowitz believes that the psychopathology is among the most complicated of the emotional disorders. The wide array and intricate associations between behavioural and mental symptoms can puzzle even the most experienced clinicians.

There is a clear relationship between OCD and depression: they are commonly linked. Many people with OCD are likely to have a history of bouts of depression, during which the symptoms of the condition tend to worsen. Some people develop obsessions when they become depressed; these obsessions are usually secondary to the depression and depart when the misery lifts. Some patients become depressed following the onset of OCD.⁴

One therapist recommends that an OCD sufferer with depression should visit a GP or psychiatrist for consideration of anti-depressant treatment. This should include a full explanation of side-effects and long-term outcome, such as the possibility that OCD will recur when the client discontinues anti-depressants.

Major features of depression are:

seriously depressed mood

loss of interest or pleasure in usual activities

disturbance of appetite and sleep

severe slowing or agitation

feelings of worthlessness or extreme guilt

extensive pessimism and suicidal ideas.

On the diagnosis front, OCD is often confused with a separate condition: obsessive–compulsive personality disorder (OCPD). The difference between these is that when someone has OCD, it goes against the sufferer’s view of themselves. This can cause them to feel very upset. OCPD, on the other hand, is shown by the patient’s acceptance that the characteristics of this illness are consistent with their own self-image. OCD sufferers are anxiety-ridden and often aware that their behaviour is irrational. People with OCPD, though, often derive pleasure from their obsessions or compulsions. They usually believe their actions are rational.

In 1998,⁵ it was found that only 6 to 25 per cent of people with OCD have full-blown OCPD. When a person with OCD also has OCPD, characteristics such as rigidity, perfectionism and the need for control can make the OCD behaviour more difficult to alter. This is mainly due to the OCPD person’s reluctance to accept guidance from without, as this implies they are less than perfect.