Carers’ Questions Answered



OCD used to be considered quite a rare disorder – and there are still many GPs who have seldom reported seeing a case. But although no one knows for sure how many cases there are (partly because many people with OCD conceal their condition and are reluctant to discuss it), recent estimates suggest that it is in fact quite common.

This booklet answers the questions most often asked at Anxiety Care groups and online, by people who are sharing their home with somebody suffering from obsessive/compulsive disorder. However, it is no more than an attempt to scratch the surface, and anyone faced with the problem is recommended to read more widely and use search engines online where possible. Nothing here should be taken as medical advice and all interventions considered by family and friends should be fully discussed with a doctor, psychologist or other mental health professional first.

What is OCD?

OCD usually means that the affected person suffers from obsessions and compulsions.  Less frequently the person may experience one but no the other.

Obsessions are intrusive unwanted thoughts, ideas, urges, impulses or worries that repeatedly run through a person’s mind.  Almost by definition these will be alarming or repugnant.  They may include:

  • vivid images of killing or in some way abusing a loved family member;
  • worries about dirt, germs, infection or contamination (affecting the person themselves or family members);
  • recurrent fears that certain activities have not been completed properly (even after countless repetitions);
  • a need for certain objects (or even people) to be in ‘correct’ positions or places before activities can be undertaken;
  • blasphemous thoughts;
  • a fear that important things may be lost unless extreme care is taken;
  • a fear that harm has been caused accidentally (running somebody over in the car or leaving harmful objects around);
  • repetitive counting and weird or frightening visual images.
  • Having lucky or unlucky numbers;
  • Intrusive nonsense sounds, words or music, which the person will be aware is produced by him- or herself, not by an outside force.

Other fears, which are sometimes on the line between a phobia and an obsession, might concern worries about the shape, functioning or smell of body parts. Discussion of these can be found elsewhere on this site, (see body dysmorphia a leaflet on this site).

Children with OCD may have slightly different obsessions, which may include fearing something terrible happening such as a family death, illness or house-fire; and obsessions with food.  These obsessions will reflect their age and the things that are likely to frighten them most during a specific period.  Obsessions have also been known to swing between various foci, where sometimes one thing and sometimes another is viewed as more important/dangerous/in need of ritual countering.

Obsessional thoughts that have a basis in reality; that is, there is a very small chance that the feared situation might occur (bankruptcy, disability, death of a loved one etc.) might be considered part of another disorder such as GAD, HC or SA. These obsessions will differ from OCD obsession in that the OC sufferer will have compulsive rituals or thoughts to counter the obsessions, which are likely to have nothing to do (in a rational way) with the actual causing agent (i.e wearing green socks to protect a parent from illness). The anxiety disorder sufferer who does not have OCD will not have such responses.  Having said that, there is a grey area where very excessive worrying in an effort to ‘buy off’ the anxiety-generating thought, might be considered more OCD than not. This whole area is discussed in the booklet ‘Obsessional Thinking’ which is available on this site.

Compulsions (often known as rituals) are repeated behaviours that are usually performed to reduce the discomfort or anxiety generated by obsessive thoughts.  As above, this might be washing, checking, going back on journeys or sorting things.  This is invariably excessive, usually (not invariably) having to be performed in a very precise manner, and may be repeated many, many times until the person feels it is ‘right’.  Sometimes, as mentioned above, this behaviour does not seem to be directly related to relieving an obsession, but those performing the ritual may still experience an overwhelming need to perform it.  The most common compulsions described to Anxiety Care are:

  • excessive hand washing, bathing or showering;
  • cleaning household equipment or furniture;
  • avoiding ‘contaminated’ or ‘dangerous’ objects or substances (commonly dog faeces, knives, asbestos, etc.);
  • checking water, electric and gas taps; windows, cupboards and doors;
  • repeatedly checking that nothing ‘bad’ has happened or accidents have been caused and demanding reassurance about this.

Less common ritual behaviours include:

  • dressing oneself, or one’s children in a precise and predetermined fashion;
  • entering or leaving the home or car in the ‘correct’ way (which may seem bizarre to an observer), and repeating these behaviours.

Less common still are rituals concerning hoarding, including an inability to throw things away without excessive checking; obsessive reading; and performing certain acts like dressing, bathing or crossing roads very slowly.

If obsessions and compulsions do not take up more than an hour a day and are not significantly interfering with life function, then this person has OC symptoms but would not be diagnosed as having OCD.

Both obsessions and compulsions may vary greatly in duration and intensity among individuals suffering them.  They may be a mild irritant, a waxing and waning problem or totally disabling and life consuming.  Depression can be a contributory factor to the disorder or become a problem as a response to the level of handicap involved. Mental health professionals will usually try to work out the ‘prime’ disorder; that is if depression is generating obsession, or if obsession is generating depression, for example, so that this prime disorder can be treated.  Once the prime disorder is dealt with, the other problems generated by it may well disappear.

People with OCD might also experience panic, (see symptoms of panic in ‘Panic for no obvious cause’ on this site).  This is likely to be in response to a stimulus, e.g. seeing blood, dog faeces or a sharp knife, much as with a phobic response.  If these panics come out of nowhere, for no apparent reason and the sufferer is afraid of the symptoms of panic rather than the consequences of the panic-causing event, as would be true of OCD panic, it might be worth checking with a mental health professional about the possibility of there being co-current Panic Disorder.  Having said that, some people with OCD are loath to admit to extreme responses to a stimulus, particularly if they are deeply ashamed of their problem, and it would probably be worth discussing the whole ‘panic situation’ with the cared-for person before involving the medical services.

Does OCD affect many people?

OCD seems to affect 2-3% of adults in the western world There is research that suggests that symptoms at a sub-clinical level might be as high as 18-19%, and mildly obsessive behaviour – even to the extent of ‘eccentricity; – is extremely common. One study suggests that the probability of an individual suffering from OCD at some time in his or her life is over 5% (Bebbington, 1990). It is estimated that up to one child in two-hundred has OCD.

Can’t people with OCD just pull themselves together?

No. If they could, they undoubtedly would. OCD is not a straight-forward condition like being pregnant, where there is a definite progression to the situation that everyone can see and understand. The waxing and waning content of OCD, sometimes coupled to extreme pressures or rewards in daily life, can make it look as if the person is ‘only as bad as they want to be’. This is invariably a false perception. Most of us are capable of supreme effort when the situation demands it, but cannot be expected to maintain this in every day life. This is about ‘balance’ where every effort we make is based on the desire or pressure to perform it (e.g. getting out of a warm bed to go to a job we dislike will depend on how badly we need the money. Visiting the hospital every day to see a sick child might be possible for the severe agoraphobic, on a temporary basis, when the need is extreme.)

Many people have vaguely obsessive habits of some sort. Some time ago a charity worker was talking to a group of young mothers (members of a social group, not anxiety suffers) and the conversation came round to cleanliness and then lavatory rituals. All of them had what might be described as irrational habits concerning using their own, or other people’s lavatories. These ranged from mild anxiety about infection that involved regular use of strong cleaning agents, to extreme anxiety requiring lengthy rituals (undressing, ‘nest building’, several washes or showering). None could be described as having OCD, but all were going beyond a reasonable level of care. All of them were relieved to find that they were not alone in their ‘odd’ behaviour.

Other situations encountered recently have included people who use slight obsessions about ‘correctness’ to make them better at their jobs, and those who put things in order as a calming precursor to any major activity. These are personality traits rather than symptoms of an illness and, as far as OCD is concerned, might be compared to the relationship between social drinking and alcoholism. The problem is that those of us who find slightly obsessive behaviour rather useful often find it difficult to relate to people whose lives are dominated by obsessions.

What causes OCD?

There are several schools of thought. One is that abnormal functioning of the brain is mainly responsible. It is suggested that a chemical neurotransmitter or ‘brain messenger’ called serotonin (or 5-HT) is over-functioning, leading to extremes of social concern. The brain becomes overloaded with ‘worry messages’, which spill into consciousness. Other clinicians related OCD to ‘hidden conflict’ or early trauma, while some blame allergy, genetic predisposition (being born with a tendency towards it) or learning experiences during the early years. Of these, there is no evidence that allergy has an effect and most enquirers who have experienced only ‘talking treatment’ of the analytical sort, aimed at exposing psychological causes have reported little benefit.

Most likely, OCD is a response to a mix of genetic, biochemical and learning situations that combine to make this disability more likely for the luckless individual. However, it is important to understand that ‘knowing why’ is of no great value. People cannot have their serotonin ‘equalized’ so that it will work as a cure that does not involve personal work on the part of the sufferer. The triggers and long-term responses are much more complicated than that. Neither can people be talked or bullied out of it. This is discussed more fully in the booklet ‘OCD Causes’, which is available for download from this site.

Is there a cure?

Anyone can have an anxiety condition at any time. Anxiety is necessary for the successful process of our lives. If we had no anxiety at all we would do rash things and soon bring harm on ourselves. Having said that, anxiety is only useful in small doses. Large doses start to work against us and make life difficult. Medication and cognitive behavioural treatment together seems to be the response of choice at the moment and the majority of people with OCD recovery to a substantial degree after therapy. However, another bout of the problem may occur in the future, particularly if recovery-maintenance is not worked at. This is ensuring that recovery work is maintained well beyond the ability to ‘just function’. People need to be able to ‘get away from the edge’ in life. That is, if you only get well enough to just get by, still walking on the edge of the cliff so to speak, sooner or later someone or some thing will give you a nudge. The person recovering needs to ensure that he or she is walking well away from the edge, which means working at recovery well into the area of being able to manage basic things.

Someone with OCD might still experience the urge to perform rituals from time to time – this is to be expected. The body and mind has found a way to reduce anxiety levels and does not give up on that sort of thing easily. So, a one-time OC may never entirely shake off the urge to perform the rituals, even if he or she doesn’t actually give in. In short, the aim of treatment is not to eliminate every trace of anxiety and the response to it, but to get back to a more satisfactory way of life.

Will the person with OCD develop a more serious mental illness?

The family member with OCD is no more likely to suffer severe mental illness than anyone else. To the layman, OCD can sometimes look like the beginnings of something more frightening like schizophrenia, but this disorder does not lead to such illness (which itself is probably a combination of disorders, and people with schizophrenia may also have OCD). At one time it was not unknown for people to be wrongly diagnosed, but nowadays much more is known about OCD; and the differences between this and the (arguably) more serious mental disorders, such as schizophrenia, are clear and easily defined by the clinician.

Within this question, carers sometimes become confused about various psychiatric terms, particularly neurotic and psychotic. Many of us use one or both of these terms to excess as general descriptive words for behaviour we don’t approve of. In a technical sense, neurosis is a condition were the sufferer remains in touch with reality and finds his or her symptoms distressing and alien to his or her personality. Neurotic activity would not tend to go against socially acceptable behaviour. With OCD this would mean that the compulsions such as washing or checking would be recognised as abnormal or excessive, but this wouldn’t involve an ability to stop performing them. The personal inability to stop would not mean that the sufferer felt it was genuinely necessary for everyone to do this as such a belief would tend to preclude feeling anxious or very concerned about it, which is a requirement of OCD.

Psychosis, on the other hand involves an inability to distinguish reality from fantasy and would mean that the sufferer has a very personal, ‘internal reality’ that has little or nothing to do with the surrounding world. Such a person makes inaccurate links between situations and their purpose or meaning, and will incorrectly evaluate his or her perceptions and thoughts even if all the evidence is to the contrary. Psychotic behaviour might well be against socially acceptable norms. A person suffering from hallucinations or delusions would generally be considered psychotic and a hallucination might involve any of the senses (e.g. sights, smells, noises, touch). This would include the classic ‘voices’, where thoughts are perceived as coming from outside the person. The neurotic, on the other hand, would be aware that thoughts belonged to him or her and were an internal process. However, there is a suggestion that the psychotic could recognise hallucinations as such in some cases.

The area of delusion, however, can be difficult. Within OCD, sufferers might be considered to be on a continuum of reality concerning their obsessions or compulsions that could go, at one end, from being totally aware that what they are doing is irrational and weird, through to, at the other end, at least some of the time, believing that it is necessary. And this ‘some of the time’ might, itself, mean that the sufferer moved up and down the continuum according to prevailing conditions within the disorder as it was affected by personal conditions and outside problems. There is, in fact, research that suggests that a small but significant percentage of clinically normal people are more delusional than diagnosed psychotics (Sheringham). There is also some support for the idea that delusions are more common in people with one obsessional theme than in people with multiple obsessional themes, and that depression might have an impact too on the presence, or not, of delusion in OCD, (Fear, Sharp & Healy).

Anxiety Care has encountered people who, at times, were almost convinced that they had committed certain acts that were always bizarre and unlikely to the point of impossibility. This was almost invariably during very stressful or traumatic periods when their general anxiety was high for fairly normal reasons; and the great majority responded to rational discussion and drew back to a more reasonable perspective. This often involved an inability to accept the slightest chance that such activity had occurred as in “Guarantee me that I didn’t kill someone while I was out shopping today, and hid the body so well nobody has found it.” A response that involved explaining that the odds were millions to one against was never enough, at least initially.

A very few once-only group, or other service, attenders have clung steadfastly to delusional beliefs and in all but two cases the carer shared the beliefs. None of these had responded to any kind of medical intervention. It could be deduced that such people suffered from a more severe mental condition that had an OC element to it.

As mentioned elsewhere, it must be clearly understood that because some mental disorders can occur together, this does not mean that the OC person will contract something more serious. ‘Can’ is a world away from ’will’.

So, from the above, it might be concluded that it is not realistic to worry about the cared-for person becoming psychotic on the basis of the occasional out-of-character response to the OC prompts; but if there are worries in this area, a relevant medical professional should be consulted and the diagnostic process followed through. More than one severely mentally ill person has been sent to Anxiety Care, by professionals of various disciplines, on the basis of having an anxiety disorder, which diagnosis charity workers perceived as being the least of their problems.

What is the difference between obsession and rumination?

These two descriptions of thought are often used as if they mean the same thing, technically they do not. Ruminations (or morbid preoccupations) are usually experienced by people who are depressed. They are thoughts that seem to ‘stick’ in the head and go round and round with no solution. They are usually about activity in the past that the depressed person views as having a profound meaning in terms of his or her current value as a person. The depression makes poor interpretations of these facts and their meaning a real problem to the sufferer. These ruminations will almost invariably be about real happenings and mistakes in the past, albeit with a severe discolouration caused by the depression. So they will make sense to the ruminator even as they cause unhappiness. An outsider too might see such thoughts as having a rational if seriously over valued basis.

Obsessional thought, on the other hand, is mostly about current or future activity or activity in the immediate past and usually involves unrealistic fears. These might be of having inadvertently run somebody over or accidentally poisoning someone; or committing some grossly antisocial or illegal offence while ‘out of control’ or distracted in some way. They too might take up a great deal of thinking time.

Anxiety Care has encountered people with both OCD and depression where the difference is hard, or impossible, to see. For example, endlessly thinking about cheating on one’s income taxes ten years ago might be viewed as depressive rumination on the subject of being a dishonest person; but when this slips over into fears that the Inland Revenue and the police will come knocking on the door, does this make it an irrational belief and therefore an obsession? And if obsessional thinking requires a compulsion to neutralise it, does reassurance-seeking by endlessly talking to one’s partner about the income tax problem constitute obsessive behaviour or the relief of excessive worry, and therefore make the problem more in the Generalized Anxiety Disorder (GAD) area? A broader discussion of aspects of this can be found in the booklet ‘Obsessional Thinking’ which is available for download from this site.

What is the difference between OCD and OCPD?

After a recent Hollywood film, many people have become confused about the differences between Obsessive/compulsive Disorder and Obsessive/compulsive Personality Disorder. There is a lot on the net about these problems, but the following is drawn from a very clear description by ‘University of Maryland Medicine’. This article states that only about 15% of people with OCD meet the criteria for OCPD. The latter seems to involve perfectionism, preoccupation with details, indecisiveness, stinginess and excessive devotion to productivity, which may be a symptom of workaholism, which is also common in OCPD. He or she (the OCP) is likely to be a severe or harsh supervisor, maybe at work and at home; displays of tenderness are unlikely to be valued, and this person will probably demand that the family submit to his or her will. He or she is not going to have insight into the OCPD behaviour and is unlikely to see the need for psychiatric assistance. ‘Strictly defined’ obsessions and compulsions are not present in OCPD but hoarding might be. Naturally, the hard working person who is attentive to detail and less than warm emotionally, does not automatically have a disorder as these can also be simple personality traits which are valued in some walks of life.

Which treatment is best?

Two treatments show good results for OCD. These are cognitive-behaviour therapy with response prevention, and drug treatment.

Behaviour therapy helps people to learn how to reduce anxiety arising from obsessions and how to reduce and then eliminate their rituals.

It is not something that is ‘done to people’. The individual involved does it him- or herself, and is helped to devise a set of structured techniques that can then be employed when necessary. The person is instructed:

  • in ways to face up to the feared thoughts and internal responses (exposure to anxiety)
  • and in ways to refrain from carrying out the rituals that then usually arise (response prevention).

This work, which resembles the self-exposure method for overcoming anxiety conditions such as phobias, should be practised every day.

Research evidence suggests that a huge amount of exposure or response prevention is not essential each time – low anxiety levels are as effective as high ones. The time and effort involved is a personal choice, bearing in mind that opting for low levels of work should never be an excuse to play at treatment. There is a good deal of practical information and self-help literature available on this subject, in books and online. One of the earliest was Professor Isaac Marks’ book, Living with Fear. Professor Marks’ research also suggests that, for some obsessive compulsives, self-exposure work done without a therapist present, is more effective (Marks et al. 1988; Salkovskis 1990).

Drug treatment: People with OCD report having been prescribed a wide range of drugs. Tranquillizers alone have little effect, and placebos none. Some general antidepressants are fairly effective for reducing depressive symptoms where this is a major part of the problem. The tricyclic clomipramine was one of the earliest drugs that was found to help and this is still widely used, although side effects and other considerations do not make it automatic first choice. Other antidepressants known as ‘serotonin re-uptake inhibitors’ (SRI’s) have a beneficial effect on OCD and are usually the medication of choice at present. These drugs affect the brain chemical serotonin which allows certain nerve cells, called neurons, to communicate with each other. Under the right conditions, these cells release serotonin which then affect the neighbouring cells. After the serotonin is released, it is taken back up into the cells so that it can be used again. The SRI’s interfere with the serotonin being recycled once it has been released which allows it to spend more time outside the cell so that it continue to affect neighbouring cells. Why this helps reduce OC problems is still not fully understood. With children, the smallest effective dose would probably be the first attempt at treatment although, as children metabolise medications quickly, higher doses might then be indicated, (OC Foundation). The level of dose is something that has to be decided, and there does not seem to be full agreement in the medical field on whether low or high doses are the best way to start.

There are several SRI’s and although all in the same ‘family’ they are different enough for others to be tried if one does not work. Currently, the SRI Seroxat is widely used by Anxiety Care service users. None of these drugs help every case and there is research to suggest that 40% or more of patients with OCD fail to respond to these drugs alone. In such cases one of the major tranquillizers may be prescribed as well. It is up to the prescribing physician to determine how and when these individual drugs should be used.

Due to the controversy over drug prescribing in recent years, many people are afraid of taking medication. This fear can also be part of the OC problem. (A psychiatrist once told the charity that only one in seven or eight patients would countenance drug treatment.) Side-effects can be alarming. They may include tiredness, blurred vision, constipation, nausea, difficulty in urinating, weight gain, light-headedness, sweating, trembling, loss of interest in sex or sexual dysfunction. Monteiro et al. (1987) found that a fair proportion of sexually active obsessive compulsives became unable to reach orgasm while taking clomipramine.

There is research that suggests that a ‘medication holiday’ might be taken if sexual difficulties seem to be encouraging the sufferer to give up medication. That is, medication could be left off over a weekend, for example. This would need to be done with the support of the prescribing physician however, as it is not a good idea to alter dosages drastically without expert confirmation that this is a suitable option.

A carer who finds it incomprehensible that a sufferer would rather have a full sex life than proceed with recovery might usefully discuss this with someone experienced in working with OCD such as an Anxiety Care counsellor. At this point it should be understood that some men have a good deal of their self-esteem and vision of themselves as ‘a man’ wrapped up in their sexuality. In such a situation, a man who probably feels less than manly because of the disorder anyway, might simply not be prepared to live with reduced sexual function.

The newer SRI’s seem to produce fewer side-effects and these do not happen to everyone, but it is as well to be aware of them if the cared-for person has problems with his or her bodily reactions to outside stimulation. A course of drug treatment might last for a few weeks or many months or years according to the individual. These antidepressant drugs are not addictive but withdrawal, as and when it is begun, should be done over a period of at least four weeks (and perhaps a lot longer) by gradually reducing the dosage. If the medication has been taken for two months or more on no account should the dose simply be stopped. Symptoms of withdrawal might include nausea, perhaps vomiting, loss of appetite, headache, giddiness, chills and anxiety. There will be no means occurs for everyone and a gradual withdrawal will minimize the problem. However, if a major tranquillizer is prescribed to be taken with an anti-depressant, there may well be withdrawal problems. Overdose can be a problem so the dosages should be monitored and taken as prescribed.

Probably the optimum road to recovery lies in a mix of drug and cognitive-behavioural treatment, with the addition of some general ‘talking help’ and family support. Behaviour treatment requires a large commitment in time and energy (and fear); while drug treatment requires only that the person sticks to the right does at the right time. However, research suggests that drug treatment alone is not as effective as behavioural treatment for those who stay the course (50% don’t). Relapse might also occur once the drug is given up as this type of medication controls symptoms rather than offers a cure. Some research suggests that medication alone, without psychological help, is unlikely to maintain recovery once it is stopped.

‘Talking treatment’ is often used as an adjunct to other support. This ‘cognitive’ therapy works by the therapist building a rapport with the person and working through and challenging the assumptions and logic upon which this person is operating. However, this can easily develop into deep self-inspection and analysis of every process, treating everything very seriously, unless performed by a fully trained person. And the obsessive/compulsive is probably already willing to look inside him- or herself too much. More analytical versions of talking treatment, where the obsessive/compulsive is encouraged to view the obsessions as some deep seated and unresolved sexual problem or the remnants of infantile feelings, (over-severe potty training has been suggested in the past), might do more harm than good. The obsessive/compulsive is probably very able to place heavyweight reasons on all frightening thoughts so adding more is only likely to reinforce the condition. (Part of the above is from Phillipson, 1991).

How long before treatment starts to work?

Response to behavioural treatment depends very much on the individual. If a commitment is made to undertake the work involved, signs of recovery could be apparent in the first session or within the first half dozen. Once the person actually accepts that he or she is improving, the gains will continue. As this simple treatment can be applied by the individual, him- or herself whenever necessary, alone or with minimal support, such gains can continue for a very long time, perhaps indefinitely.

With drug treatment, unfortunately, the side effects occur soon after the medication is started and are usually at their worst before positive results are felt. Some people respond quite quickly to medication, perhaps a week or two; however, two months is a fairly general time lapse between first doses of SRI’s and significant signs of improvement in many, so medication should not be abandoned because there appears to be little initial response. This improvement, when it does come, may continue for several more months until it reaches a maximum point. A good doctor will work with the patient to keep side effects down (modifying dosage, times of taking etc.), while keeping a close watch on progress – or lack of it.

Should the cared-for person be in hospital?

Out-patient treatment is probably the best course if the care-for person:

  • Is functioning fairly well in the home environment;
  • Had a good record on coping at home and at work prior to the onset of OCD;
  • Has support from family and/or friends;
  • Is reasonably relaxed rather than severely anxious or depressed;
  • Copes with any prescribed medication well:
  • Is not totally and irrationally convinced of the reality of obsessive thoughts and actions.

Hospitalisation may be the better option if:

  • The person is severely depressed or extremely distressed;
  • Is unable to cope with normal everyday activities such as working, eating and drinking, hobbies, etc.;
  • The family/friends support system has broken down (and this might include violence, heated arguments, isolation from family members);
  • Medication is causing unacceptable side-effects.

Having said this, we are all different. Some of us benefit from the (hopefully) intensive support that is offered by a hospital environment. Some need a complete change to allow the endless loop of repetitive behaviour an opportunity to ease. Still others might respond well, once free of a damaging or punitive family situation. However, there is little information available that suggests that intensive and skilled care is readily available for anti-obsessional work in a general psychiatric hospital. It would not, therefore, be safe to assume that the obsessive/compulsive would receive totally appropriate treatment for the disorder once hospitalised, and will return home cured. It might be more realistic to accept that the OC will simply be in a safe, comparatively stress-free environment while in hospital and that, at best, medication levels (if these are prescribed) will be stabilised.

S/he won’t talk about getting help. Should I insist?

It is common for a person with OCD to suffer the symptoms for eight to ten years before seeking help. Many obsessive/compulsives are afraid of people ‘finding out about them’ and/or fear that needing help will prove that they are insane, so strongly resist any kind of outside help. Others simply integrate the rituals into their lives and find it difficult to gauge the level of handicap they are suffering. It is important for the caring family to help the person to understand the need for help, but also for themselves to understand how frightening and threatening such help might seem.

It is important for carers to work out whether or not the obsessive/compulsive family member is ready to accept help. A simple assumption that this person must be willing to try anything to be rid of such a handicap is not necessarily correct. It is what the person does, not what the person says they are doing that is important. And if the obsessive/compulsive doesn’t seem to be able to keep professional appointments or disengages quickly from new therapies then, whatever is said, it is the inability to stay with therapy that must be accepted. Within the charity, it is sometimes suggested to carers that they ‘turn off the volume’ and run the last few weeks through their minds, using the pictures without the words. That is, they are advised to think about what the OC family member has been doing with regard to the disorder and treatment with no regard at all for what is being said. This often gives a dramatically different picture of what is going on, compared to what has been assumed to be going on, when justifying or dissembling dialogue is discounted.

Some people need to reach rock bottom before they are ready to commit to a treatment regime. Others need to work through personal feelings, immediate situations or to make tentative forays into a range of support services, looking for an ‘instant answer’, before they can accept structured help. And still others, a minority, are having their needs met by the disorder and/or family collusion and are not going to accept treatment at all. The caring family must be able to differentiate between their needs and the needs of the person they are looking after; between reality and what they wish was reality.

Why can’t s/he just stop when the rituals are done?

This is usually asked of people who check or wash endlessly and is invariably based on the questioner’s own perception of ‘doneness’. We all have an inbuilt perception of what constitutes ‘completion’ when undertaking such things as checking that doors are locked or hands are clean. This will vary according to prevailing conditions. That is, if your neighbour has been burgled you check locks very carefully. Or if somebody has tracked animal faeces into the house, or you have inadvertently touched a highly toxic substance, washing is particularly rigorous.

With OCD, ‘closedness’ (doors, windows etc.), or the risk of contamination can seem so hugely, even limitlessly, important that the work is never done. Completion may then only occur when exhaustion or family anger forces a stop and this may have little or nothing to do with the sufferer’s perception of what is necessary. In short, the internal perception of completion is very often at crisis level and can rarely be reached.

If the person has a specific ritual concerned with washing or checking such as performing it a number of times or while thinking certain thoughts, there might be a fairly definite conclusion to the actions (although this will invariably be more than a non-sufferer would view as enough). However, if this ritual is interrupted in any way, either physically or by irritation from a family member, or by the person ‘making a mistake’ (which might involve a whole range or things, all of which a non-sufferer would barely find relevant), the ‘completedness’ might never occur. Again, the carer is very unlikely to be able to understand the logic of this process and applying the personal yardstick that we are all tempted to use – ‘what works for me should work for everyone’ – is never going to be a good idea.

S/he seems quite happy to be like this. Why?

This question is often asked with strong undertones of suspicion and despair. The answer is probably to do with the definition of ‘happy’ and the differences between the carer’s, and the obsessive/compulsive’s view of the problem. If this person had MS or some other severe, visible, physical disability, their calm, even cheerful demeanour would probably be viewed with admiration. However, this would be based on the knowledge that the handicap was permanent, or had a definite time span (like a broken leg). With OCD the handicap can seem just as permanent to the person suffering it, while those around them will tend to view it very differently – most often as something against which this person should be continually struggling. In such a situation, any apparent acceptance of the problem, let alone good-humoured acceptance, can feel like a betrayal to the carer. Pressure of various kinds then might be brought to bear so that the obsessive/compulsive feels virtually obliged to be unhappy all the time in order to avoid censure or accusations of not wanting to be well.

It might be an idea for carers in this situation to view the obsessive/compulsive as a sort of ‘prisoner of war’. This person is not where he or she wants to be, and may be there for a long time, but charging the guns or the wire all the time is not the best answer. Feeling useful and being active is at least as important for all such POW’s. None of them spend all their time planning or attempting escape. This is not to say that a person with OCD should be encouraged to see him- or herself as an invalid, but forbidding them to find any kind of happiness – however subtle the pressure, is not productive.

This does not apply to all obsessive/compulsives of course. This problem can be filling a need and some people with OCD do use their handicap like a club on those around them – as do many people with other types of problem.

The trick is to try to put oneself in the position of the cared-for person – to attempt to see the situation as they do, not as the carer thinks he or she should see it; and not to allow residual feelings of anger or doubt about the validity of OCD as a handicap to colour responses.

Would the problem be solved if we moved away?

The cared-for person may well argue this, but as a general rule the answer is no. Sometimes running away is the optimum solution to a problem; and some people live such horrific, constrained lives in their current environment that a geographical transplant away from their nearest and dearest would work better than any drug. However, for most people, moving – more accurately running away – would achieve nothing in the long term. For a few days or weeks the novelty and the belief in the efficacy of change might achieve a remission, but the odds are that reality would slip back in eventually and probably sooner than later. The simple fact is that the OCD sufferer, as a general rule, carries the problem within him or her. The obsessions are a faulty piece of thought processing; they are not some infection from outside or focused totally in the environment. Living conditions might well be aggravating the situation, but it is extremely unlikely that a total change will induce recovery.

From Anxiety Care’s experience, sufferers who move home or job simply find other things to obsess about very quickly. There are no examples within the charity of a radical change in environment making a significant difference to the OCD.

S/he has really strange thoughts and beliefs – isn’t that more than OCD?

The answer is no. Obsessional thoughts are very common. Around 90% of the population will have them (Rackman et al. 1978; Salkovski et al. 1984). These thoughts, that most of us are subject to, don’t seem to differ in any way from those experienced by obsessives. The differences seem to lie with how these thoughts are appraised by the individual. (The classic psychologist’s joke: “Are you bothered by evil thoughts?” “No, I quite enjoy them.”)

There is a non-conscious part of the brain that sets up a range of relevant information to assist our conscious thought processes when we think; plus offering sundry other information triggered by the particular though. Much of this may have only the most tenuous link with the original thought, and it is how we interpret this gratuitous information that causes most of the problems.

With this kind of information jumble, most of us have ‘evil thoughts’ at times, to which we will respond in a variety of ways. Most people dismiss the irrelevancies. However, if we feel generally guilty or negative about theses thoughts and they occur over a long period, we may generate anxiety or depression. And if we have an internal appraisal system that takes a great deal of responsibility for such thoughts – If I think it, I must be going to do it! If I have the slightest worry that I may have harmed somebody, I have to do anything necessary to ensure I am not to blame! – OCD can develop. The unconscious part of the brain will certainly link any additional information, however tenuous to the original link, if it is ‘flagged up’ by a major response in the thought processing such as a surge of anxiety. Therefore it is to be expected that a frightening though linked in this way will be competently filed with other, truly relevant information, to be readily available next time the originating though occurs. So problems begin.

The charity has encountered a number of young mothers with extreme fears concerning the possibility of them harming their children. Most parents have fairly murderous thoughts about their offspring from time to time. Statements like I could have strangled him! I could have killed him! are common enough among parents when discussing their children’s bad behaviour. Where babies are concerned, endless night-crying and parental exhaustion to the point of collapse, generates feelings that would alarm anyone.

If the person is fairly self-assured, or if there is somebody around later with whom to talk such feelings through, these frightening responses usually evaporate leaving only a small residue of guilt. However, with some people, these linked thoughts don’t go away. A casual though about dropping a baby (something we all rightly keep somewhere in our minds when carrying something so vulnerable) turns into the belief that he or she wants to drop it. So s/he will no longer pick the child up, or has to go through a ritual of ‘good thoughts or actions’ first. A stray thought about what might happen if one of the children caught something from a still-dirty piece of washing leads to extensive re-washing; or watching the machine endlessly in case it ‘makes a mistake’; or thinking ‘good’ or ‘blocking’ thoughts to counter ‘wickedness’ such as less than sunny thoughts about a loved one.

In such a situation, tenuously linked thoughts are treated too seriously. Thereafter, it is not the thoughts themselves, or their frequency or intensity, that make them cripplingly obsessional; it is the way the individual interprets them and then goes on to try to neutralize them with ritual behaviour or other, cancelling thoughts. This is similar to phobic responses, where avoidance or escape, rather than accepting the anxiety, maintains the problem.

Some of us simply appraise thoughts wrongly. There could be many reasons for this. Perhaps, that we were encouraged to take too much personal responsibility for our actions when young; or perhaps we encountered the older family member, expert in slipping an ‘internal policeman’ into our head. This kind of person is very good at linking shame to innocent or enquiring behaviour in the child as a method of control, or in force-feeding their own rigid code of decency, linked to fears of abandonment, withdrawal of love, or the child harming this person by his or ‘wickedness’ if it isn’t adhered to. If this has happened, there is little point in the carer explaining that thoughts can’t hurt and expecting this to work. To the cared-for person, there is an inner certainty that thoughts do harm; or that he or she has huge responsibility to protect others; or the power to harm them: this is not stupidity or madness, it is OCD.

However, two points can be made by the carer, and strongly. They are, first, that the cared-for person cannot hope to find the key thought that will turn off the thoughts that are feared – because no such possibility exists. Second, that one cannot stop oneself thinking about something. The more we try to stop thought, the more likely the thought is to come. This results in the obsessive/compulsive being so busy casting around for signs of the evil, that he or she makes an already frightening scenario even worse. This can be seen in the ‘religious obsessions’ that were common when religion played a far greater part in life generally (but which can still be found among obsessives with a strong religious background). Such problems will usually involve obsessional thoughts without physical rituals, where blasphemous thoughts are experienced and are neutralized with ‘good’ thoughts of some kind. (Sexual and violent thoughts are also usually obsessions without compulsions and are often dealt with in the same way.)

Again, it is the interpretation of the thought, not the content or frequency, that is the problem. Most of us, confronted by tragedy or plain evil, might question the presence of a kindly God, without this leading to obsessions and extreme responses. Many of us will also be faced, at least once in our lives, with something that takes up all our thinking time. These preoccupying ruminations may be morbid, but should not be confused with OCD. If someone is faced with a very real problem like imminent bankruptcy or a dying spouse, they might well think about this to the virtual exclusion of everything else. This might well be destructive and cause additional harm, but it is not OCD – it is a response to a rational danger.

Charity support workers and the caring families often find it difficult to work with people who are predominantly ‘purely obsessional thinkers’ (POTs), because there is little physical manifestation of OCD symptoms to help with in this situation. That is, with POTs the original thought or mental question generates much anxiety, which in turn begins the process of extreme mental activity (ruminations) in an attempt to escape it, cancel out, or solve the thought. But it does not result in physical responses such as washing or checking. Behavioural treatment for this would involve building a tolerance for such thoughts and reducing the ruminations. ‘Stopping’ techniques are sometimes suggested. Here, in response to the generating thought, the person thinks STOP!, or makes some physical response such as snapping a rubber band that is round a wrist, stamping a foot, or punching a fist into the other palm.

These simple responses have had their successes, but there is a strong suspicion that adding pain to the equation might further accentuate the importance of the originating thought – but if it works, that’s fine. Any treatment that increases the originating thought’s importance (such as analysis) is likely to have the same negative effect. However, the alternative of trivializing the thoughts and ruminations is entirely pointless. A simple denial of importance with no associated logic will have little impact on a well-established and feared process. Any cognitive-behavioural approach will be aimed at finding ways to accept the thoughts: To start the process that will gradually disengage those ‘importance thought’ markers and let the harmful responses slip back into their rightful place among the bizarre and irrelevant links that are present in everyone’s brain.

However, it is important to understand that whatever treatment is used, it may well increased the occurrence of the originating thought at first. The brain does not take kindly to being redirected and, as ruminations decrease, the originating thought may increase much as a naughty child might throw a tantrum as a last ditch attempt to get its way. The important fact to remember with POTs is that successful recovery techniques will reduce the time taken up by ruminations, not the number of times the originating thought or question occurs. This will normalize in it’s own good time.

Other techniques that have been used successfully with POTs include recording the originating thought on cassette tape and playing it over and over. The mind then grows used to the triggering thought, which gradually loses its power to generate anxiety symptoms. A better way might be internal repetition of the thought. That is, as it occurs, the person repeats it in the mind so that eventually the brain accepts the idea that the thought is not important – that it is in fact so unimportant that it can be happily repeated over and over again.

Thoughts which counter the originating thought or question can also be useful – changing or wrong-footing the ruminations. A useful response to the question Did I put ground glass in David’s cereal? Might be Probably, I’ll get the rest of the family tomorrow morning. To wrong-foot the thought If I wear this shirt today, my mother will die, we might think; Maybe, but I’ll have to take the risk or that question owns me. Again, this process has had its successes but it does involve a great deal of confidence and might not be something that could be attempted too early in recovery work.

Some POTs fall into a loop of twisted logic where family protection is concerned. They feel far too responsible for the safety of one or more family members and develop some internal ritual that ‘protects’ them. Commonly, when it is suggested that such ‘keep them safe’ thoughts are irrelevant and damaging, the obsessive/compulsive reacts as if it has been suggested that they actually wish harm to fall upon this family member. Any parent knows that lying awake at night until a child returns home is not keeping them safe; or that worrying while they are away from home for the day is similarly unproductive – but it is still done. Part of this is because, as a thinking species, we are often aware of how powerless we are and tend to seek out less than logical ways to make ourselves feel better about this.

The POT must learn to differentiate between natural concern and irrational fear and the blocking of it, which is serving them rather than the family member concerned. They must be prepared to take risks; even that harm will occur that will then ‘prove’ that their thought rituals were correct. So, not trying to escape, poking fun at one’s own dire thoughts, not trying to find answers or the perfect thought sequence that cancels everything bad – these are the ways through purely obsessional thinking. Whatever the treatment, the originating thoughts or questions have to be accepted – not welcomed – but allowed to exist. They will starve from lack of attention in time.

(Much of the above is based on an article by S.Phillipson in the American OCDI Newsletter).

My family member with OCD is quite young: Is it just a child thing?

Children tend to have a range of fears, of varying intensity, as part of their natural development process and, as these are fairly normal, excessive worry by the parent is not an automatic requirement. For example, a normal child of four or five might be quite obsessive about arranging toys.

With anxiety, children tend to explain their obsessions as worries. The most common obsessions, as discussed more fully below, are fear of intruders entering the house, fear of contamination with germs and toxic substances and worries that they might contract a serious illness. Children will tend to obsess about many things at many different levels and fears may come and go (altogether or in relevant importance) according to age. Adolescents who abuse drugs or alcohol have a greater chance of developing OCD by the age of eighteen than those who do not, (OCD in Children and Adolescents’).

Many children have phobias and anxiety conditions (see leaflet on Childrens’ Fears on this site) and most children work through the problems that are (relatively) ‘normal’ for their age as mentioned above. There is research that suggests that up to 13% of children between the ages of nine and seventeen may have anxiety disorders in any one-year period. And anecdotal evidence suggests that some anxious children may seem somewhat obsessive because of fear surrounding separation from a parent figure or very high ‘worry’ levels that could be in the GAD range (see leaflet on ‘Generalised Anxiety Disorder’ and the booklet on ‘Obsessional Thinking’ on this site).

The problem is that maturity appears to have no effect on OCD, and research indicates that about one-third of OCD cases are in place by the time the sufferer is aged fifteen (Geist, 1989). Adolescents of both sexes frequently go through stages of vaguely obsessive behaviour; and it is not uncommon for both boys and girls to be alarmed at bodily changes and a growing sexuality. This alarm might manifest itself in a multitude of ways, some of which could present as obsessive – washing excessively, focus on body shape or odour, extreme privacy etc. However, any parent of an OC adolescent would be able to describe behaviour that could not, by any stretch of the imagination, be described (as most of the above would be) as just another slightly irritating, self-involved, phase.

The situation is this: the parent knows the child, and is probably the only expert on this particular adolescent. If he or she detects behaviour that is completely out of character, it doesn’t matter that a name cannot be put on this behaviour, even by the doctor. Something must be done and this means pressing for help even against GP resistance. Livingston and Rasmussen (1989) provide some ‘Family Guidelines’, which are in turn adapted from the work of Anderson et al. 1986. These have been altered slightly for the benefit of British readers; however, it must be understood that such lists are, at best, only a guide, and proper diagnosis requires the skills of a trained person.

Livingston and Rasmussen suggest that carers learn to recognise signals – changes that may be gradual but significant – which indicate that the cared-for person is having problems. These are:

  • Withdrawal
  • Doing things again and again (repetitive behaviour)
  • Constant questioning of their own judgement (and need for constant reassurance)
  • Simple tasks taking longer than usual
  • Becoming weary or exhausted more easily
  • Perceptual tardiness
  • Increased concern for minor things and details
  • Severe and extreme emotional reactions to small things
  • Inability to sleep properly
  • Significant change in eating patterns
  • Daily life becoming a struggle
  • Avoidance.

The Adams and Torchia,(1996) work, discussed in ‘Overcome OCD!’ suggests that parents should watch out for the following where fear of contamination and washing and cleaning compulsions are concerned:

  • Frequent or lengthy bathroom visits
  • Hands are dry, red, chapped, cracked or bleeding
  • Slovenly appearance (due to fear of touching ‘contaminated’ body parts or objects)
  • Avoiding touching certain objects, using a barrier (tissue or shirt cuff to touch things, or avoiding certain locations)

And the following where fear of harm, obsessive doubting, checking compulsions, repeating compulsions are concerned:

  • Generally anxious demeanour
  • Frequent requests for reassurance from others and repetitive calls home
  • Handing in homework etc., late or not at all
  • Homework taking unusually long periods of time
  • Repeatedly checking that books are in bag or satchel and homework is detailed properly or present
  • When writing, excessive crossing-outs, erasures, rewritings, repeating or avoiding certain words and/or numbers
  • ‘rituals’ for walking through doorways, getting up from chairs, often involving repetitive actions or an unusual posture
  • avoiding certain objects or locations

And the following where symmetry obsessions and arranging compulsions are concerned:

  • preoccupation with clothing (e.g. shoelaces) being symmetrical
  • ordering books or other items on desk or shelf
  • arranging written elements on a page

Where compulsions such as counting internally, praying or repeating ‘good’ words or phrases is concerned, the child may appear preoccupied or inattentive to external events, including completing homework or responding to others.

Anxiety Care has also encountered:

  • ritual bowel habits, requiring specific amounts of defecation
  • excessive cleaning or washing after bowel movement
  • insistence on performing a bowel movement at a specific time each day irrespective of bodily needs
  • putting feet or hands in certain positions when sitting down
  • placing cups/plates down in certain ways or a certain number of times
  • excessive concern for ‘suffering’ strangers (e.g. vagrants or disabled people)
  • excessive concern about family members’ happiness and/or mood changes
  • willingness to subordinate personal needs to the slightest (perceived) needs of others
  • extreme guilt, often sexual (e.g. masturbation and/or fantasy), or to do with perceived wrongdoings which might be insignificant or clear only to the child.
  • perception that casual contact in the street is deliberate and/or an attempt to contaminate or ‘infect’ this child

The ‘Overcome OCD!’ article points out that many children will do some of these things without having OCD; also that many children have ‘superstitious’ periods where they may perform certain rituals to ward off bad ‘stuff’. The difference here will be that these are playful responses to life in normal children and disappear within weeks or months, while the child with OCD will treat them seriously, will view them as shameful and secret and they won’t disappear quickly.

Unfortunately, adolescents often have difficult in obtaining treatment within the UK NHS, and not only for OCD. This is because they fall between the Child and Adult Psychiatry services. There are some specialist adolescent units; however, there is little information available on the experience of adolescents with OCD in such units.

Problems with obtaining treatment sometimes result in parents considering ‘going private’. This is not the place to discuss the merits of private as opposed to NHS treatment. However, a decision to seek private help must be made on a rational basis. The strong emotions engendered by the suffering of a child can result in parents thinking in terms of ‘We’ll do anything necessary’. Unfortunately, private ‘talking treatment’ can be very expensive and statistics show that there is no guarantee of recovery at the end of it. The pressure on an adolescent or young adult, seeing the family putting themselves in debt in this way, or just spending hard earned money on them that had been earmarked for something else, can be enormous. It could even work against the efficacy of such treatment. So going in this direction needs to be carefully thought out. And, of course, throwing money at a problem as a substitute for love and care is another possible and negative side to this that needs no discussion.

Do people with OCD normally become aggressive?

This is a difficult question. Many animals respond to fear, at some levels, with aggressive behaviour and humans could not be expected to be different. Anyone suffering from a life consuming and very frightening problem like OCD is likely to be irritable and defensive. Suffering from OCD and/or depression makes an angry or simply short-tempered response to anything more likely than a sunny smile. Also, spending far too much time ‘in one’s head’ – thinking, worrying, feeling rejected and close to mental collapse or exhaustion puts the focus on personal needs to the exclusion of much else. Like a self-involved child, this person may be more likely than the non-anxious person, to produce a furious response to being ‘thwarted’.

Clinical studies are not very clear about this. Some suggest that compulsive washers tend towards obstinacy and being irritable, and the psychoanalytic theory of ‘deep seated problems in the past’ claims OCD involves hostility and controlled anger – which may escape sometimes. There is little real evidence of this. However, people with OCD tend to be more neurotic than most and the condition linked to personality factors does point to the likelihood of angry or aggressive outbursts, not always resulting from the thwarting of rituals (Marks, 1989).

The needs of other people can come a very poor second when the driving personal focus of obsession is experienced. One sufferer explained to charity workers that, although he loved his wife and children, when he was at his worst, they simply became four more things that aggravated his OCD. His enormous need to find a solution to his problem when obsession was total, meant that they were only useful in as far as they were sources of reassurance; and when they were not that, they were just in the way.

This question is also sometimes asked as a ‘back-door’ way of enquiring about the likelihood of the OC person performing the acts that he or she is so terrified of, such as harming or molesting people. The true answer to that is, no; if the person involved has OCD, then the fears of violence or sexual depravity are typical of a great many people wit obsessive/compulsive disorder and mean nothing at all. In fact the OC may have thought problems in this area because violence or sexual depravity is the thing he or she hates most. Many sufferers link in to obsessions in regions where they have strong feelings, as can be seen with the very religious person who becomes obsessed by fears of scorning or reviling God or committing blasphemous physical acts. In such cases, the hugely negative and/or horror reaction to a vague thought that passes through the head marks this up as important and frightening, so that next time it strikes with even greater power, and so on.

As said elsewhere, the depraved person who enjoys thoughts of violence and molestation is the one likely to commit them, not the obsessive to whom these may, literally, be the last things he or she would do. So violent thoughts, and aggression because of the disorder are not in the same category. However, if the carer feels that the sufferer is fantasising about these acts rather than obsessing about them; or if he or she has a history of violent or anti-social sexual behaviour, a clinician should be consulted who would be able to diagnose the condition properly and help with therapy that would increase self-control.

Is it my fault?

Most of us like to get things straight in our minds and set out definite reasons (and blame) for life’s problems. Many families living with somebody suffering from OCD use tortuous logic to apportion blame – often against themselves. Parents tend to take responsibility for their children’s shortcomings, which is healthy in moderation. However, if parents take total responsibility, the logical conclusion is that all of us, except the very first set of parents in humanity’s dawn, are totally blameless for everything. This is obviously ludicrous. A complicated mixture of genetic, learning and environmental factors make each of us what we are. We could all be better parents, spouses and children. Even when fairly confident in our abilities, we all feel somewhat unequal to the task part of the time – whether this is as a parent or simply as a human being. This keeps us on our toes, but when it comes down to it, doing the best you can with what you’ve got is all any of us can ask of ourselves.

The problem is that, faced with the helplessness of trying to assist somebody, particularly one’s child, who has a serious and dreadfully handicapping disorder of this kind, we tend to be confronted by the simple fact that we can’t solve the problem and see this as a reflection on our value as a person. We may worsen the response to this by harbouring nagging fears that we ‘drove them to it’, if we are the parent. People with OCD are usually terrified; they often become very dependent, self-involved, manipulative and even aggressively demanding. They sometimes feel – and state – that somebody should solve their problems or at least serve them in such a way that their anxiety will be greatly reduced or extinguished altogether; even though being completely free of anxiety is an impossibility. Experiencing such a level of fear and helplessness, they may try to obtain what they want by making their carers feel guilty. The family need to recognise that this is only a declaration of fear and helplessness, and a need to be free of the very unpleasant physical symptoms that accompany the drive to ritualise, not a belief that this is really possible.

Parental guilt feelings are a powerful force, but the truth needs to be confronted: the parent is not to blame. The parent is not required, or able, to solve the problem. Of course many parental attempts to help or cope were pointless or ill advised: That holds true for just about everything in life that is attempted without the required fore- knowledge or skill. This doesn’t mean that the parent is responsible, nor does it prove this person’s incompetence as a parent or spouse. If the parent is going to help with the considerable task of recovery, then he or she must get a grip on this. If not, such help will focus more on comfort and service than the loving, but tough, support that is essential; anything else quickly becomes collusion. One Anxiety Care client said: ‘My mother helped me until I couldn’t do anything for myself at all’.

If this question is asked with regard to family genetics or existing family member OCD, rather than from an emotional standpoint, the answer can be somewhat different. The OC Foundation has a large number of excellent articles on the subject of OCD and their piece ‘OCD in Children’ is used here. It suggests that the disorder does run in families but that genetics does not account for all OCD. Even in identical twins, there is only a 13% probability that, if one contracts the problem, the other will too. The statistics on whether the problem in a parent will affect the child is a greyer area with percentages ranging from two to eight. Obviously, at the lower end, this is no greater for prevalence than in the general population. However, the article states that if such an obsessive parent has blood relatives with OCD there is increased risk for the child. The type of OCD suffered by the parent will also affect the child in that, if the disorder was contracted in childhood by the parent as opposed to in adulthood, there is a greater chance of passing it on.

A family history of disorders in the OC Spectrum or other anxiety disorders is also likely to increase the child’s chances of contacting OCD. And mild or severe depression, other anxiety disorders, disruptive behaviour and learning disorders, body dysmorphic problems, Trichotillomania (hair removal), and Tic disorders are all known to co-occur with OCD at times. This means co-occurrence is known, not inevitable.

Whatever the truth of inheritance, feeling guilty about this is unlikely to help as guilt is only useful when it leads to change. Using guilt to cloud judgment about acceptable behaviour within the family, or to generate unreasonable expectations of other people’s tolerance of the OC child or spouse, will help nobody.

How can I help?

Families tend to respond in a number of ways to OCD. Most commonly these are:

  • Becoming involved in the rituals to keep the peace.
  • Not becoming involved but allowing the rituals for the same reason;
  • Denying the existence of OC rituals.
  • Refusing to allow rituals in their presence.

(Livingstone & Rasmussen, 1989).

Even when the condition is denied, family tension is likely to be very high. Anecdotal evidence suggests that most families swing between assisting with rituals and attempting fairly negative or confrontational ways to stop them. As anyone bringing up a difficult child will understand, such a mix promises more trouble than success. This response is more to do with the caring person’s patience, love, tolerance level and ignorance than an acceptance that there is a genuine problem that needs to be dealt with. Swinging between collusion and denial only proves to the person with OCD that the problem is not seen as genuine. That is, we go along with your little difficulties until it begins to affect us, then you have to stop. It would be far better to acknowledge the existence of a major life problem, but without agreeing to be involved in maintaining it.

This is easier said than done. Families want to help, but they are confused and frightened. Often, one member, usually the mother or spouse, is elected as ‘guardian’ by the obsessive/compulsive, who is able to press all the required ‘emotional buttons’ in order to gain maximum support from this person. The rest of the family frequently feels isolated, manipulated and marginalized – the person with OCD has priority in all things.

Here everybody is having a miserable time with guilt, jealousy and helplessness mixing to make a family approach to the problem extremely difficult. But OCD destroy families, so it is important to work at the problem together. Even if the obsessive/compulsive and the caring family are convinced that the problem is based in biological or neurological dysfunction, this is not an excuse to allow the cared-for person complete freedom of action. The obsessive/compulsive needs to learn ways to accommodate his or her actions to real life and family need, not to attempt to change external situations to fit symptoms.

If this ‘helpless to resist’ attitude wins out, the family simply become custodians and therefore part of the problem rather than assistants in the process of recovery. In other words, carers should support the person and recovery, not the symptoms and continued illness (Hurley et al. 1991).

If the person with OCD is willing to work at overcoming his or her problem, it is essential that the family, or those members of it who are willing to become involved, negotiate some kind of recovery ‘contract’. Simply reacting in exasperation (with punitive restrictions such as turning off the water mains, hiding soap, or tossing clothes in heaps) is likely only to result in rage and a worsening of symptoms.

And if this family calls a halt because they’ve simply ‘had enough’, or if they indirectly punish in some way for all the aggravation, the odds are that they will relent fairly soon and fall into line again. As with the difficult child, this simply proves to the OC person that the more troublesome one is, the more likely one is to get one’s own way eventually. It is far better to sit down with the cared-for person and work out how to get things started.

Many obsessive/compulsives have given up resisting their compulsions and simply do not feel that they can do anything. This is invariably wrong. There is always something, no matter how small. Examples of contracted work might be:

  • Writing down on a diary sheet how many times a day hand washing takes place and committing to reduce this by one or more times each day;
  • Agreeing to seek reassurance from only one person, or only once from designated people with the family responding We agreed that I wouldn’t reassure you, if asked beyond that level;
  • Agreeing to wash clothing only once unless the family accepts that it is specially dirty.

Entering all work on daily dairy sheets, to be countersigned by a family member, is very useful. This reinforces the pleasure of achievement and serves as a proof of work done. Some families use very practical reinforcements such as ‘treats’ (small gifts, outings) to mark a week’s positive work. However, a treat should never be permission for extra ritualising as this can undo all the good work.

Where practical rewards are negotiated, it is sometimes suggested that small punishments should be an option if work is not done – perhaps giving up sweets, cakes or TV for a day or two. However, this is very individual decision and probably works better with children than with adults.

Contracts must always be negotiated, and never a matter of ‘take it or leave it’. The person with OCD often feels very lacking in power and control and may well overreact to something seen as pressure. Contracts work both ways, of course. Carers might have to agree not to nag, punish with silence or in other ways express their displeasure with ritualising. They must also agree not to urge additional work or assume that once something has been successfully completed this will happen every time. It might be necessary for the supervising doctor or therapist to help with contract negotiation and with practising on how to refuse reassurance if this becomes a sticking point.

Where the person with OCD is not willing to undertake any recovery work, or denies the problem, there is very little that can be done. An undertaking within the family to ‘draw a line here’ sometimes helps. That is, the person with OCD understands that the problem is accepted, the family will not reduce support or insist on recovery work; but they will not increase support any further to include new or extended rituals.

However much, or little, help the family or individual carer is able to provide, there are a number of things to bear in mind that will make this more useful. First, OC symptoms can vary according to the levels of stress experienced. So the carer should not expect the same results every time or feel that it’s all been for nothing if setbacks occur. Second, the carer needs to become an expert audience. Small achievements are important too, and progress by the inch or the yard is still progress. However, false praise for work half done, or the repetition of work that is easily accomplished, should not be given. If this is demanded, it is simply another version of seeking too much support from the family. Third, family needs must be kept in perspective. The fact that somebody has the loudest voice does not mean they have the greatest need. Other family members may not feel they have the right to complain, but they may signal their anger by simply not being there one day. Fourth, outside help should be sought if family work proves difficult. Professionals and skilled lay groups like Anxiety Care are available; and telephone-based and online support groups are now becoming more widely seen every month.

Somebody said that OCD is an addiction, is this true?

Strictly speaking, this is not true. An addict is seeking pleasure from certain activity while the OC sufferer is seeking to reduce anxiety or perhaps guilt.  However, at a certain level the problems can be similar. If the addict begins to use drugs or alcohol, for example, to reduce tension or the bad physical and emotional symptoms generated by withdrawal, the single-mindedness of seeking this relief can be very like the OC’s need for relief from anxiety.

This addict metaphor is sometimes used when discussing structured help with carers as it can be a graphic way to underline the sufferer’s perceived personal need.  Most of us are familiar with the idea that an addict in withdrawal can be totally focused on the self and the need to obtain the substance that he or she is addicted too. The picture of a drug addict stealing, mugging, even prostituting him- or herself in the pursuit of the needed drug is familiar to anyone who watched much TV.  Linking this to the drive that makes an OC sufferer seek reassurance, help with ritual or to perform compulsions, sometimes helps carers to understand the dedication and single mindedness of the sufferer when in the throes of an obsessive episode.

Looking at any anxiety disorder from a certain perspective can draw similarities between avoidant behaviour and addictive behaviour as they are both designed to bring relief and, at least indirectly for the anxiety sufferer, pleasure; even if this is only the pleasure of not feeling anxious or guilty.  It would be wrong, however, to take this similarity too far.  The OC sufferer might well feel compelled to say or do almost anything to obtain the support he or she needs when in dire trouble with ritual behaviour, but this situation hasn’t arisen through self-indulgence or foolishness as could be said for the alcohol or proscribed drug dependant person.  OCD is not something that has been taken up deliberately.  It is a potentially disabling disorder and one that most people wouldn’t wish on their worst enemy.

Do people ever get back to normal?

Yes, but don’t expect an all-singing, all-dancing personality transplant. This person has learnt some negative and damaging ways to deal with life’s problems and has usually spent too much time inside his or her own head picking at the sore bits. This leaves scars and the ever-present possibility that symptoms will rise again when reality puts out a tripping foot. Spending too much time watching life also tends to prove that it is dangerous out there; and there is a possibility that someone who has suffered in this way is in fact more in touch with real life after recovery. So, life can be good again and well worth living, but the process of getting, and staying, there should never be forgotten, or its difficulty underestimated.

Will s/he have a relapse?

The answer to this is, as mentioned earlier: yes, probably. Nobody wants to hear this, but the fact of relapse must be faced. Once this unpleasantness is accepted, the subtleties of degree and the work necessary to minimise any setbacks can be faced up to. If the possibility of relapse is not accepted and this is fairly common among the newly recovered and their families, then the first signs of ‘it’ recurring will make everyone concerned feel as if all that struggling, pain and work was pointless.

For many obsessive/compulsives, the problems or situations that triggered the initial OC responses might not be the same as those that are currently maintaining it. We can all think of situations for which this holds true; (marriage, hobbies, smoking, drinking, etc.) The spreading nature of OCD can also mean that the original stimulus grows and changes. A whole range of everyday situations can trigger the highly sensitised person, over-ready to feel contaminated by evil, whether s/he acknowledges this is not. Under stress we all fall back into familiar, possibly negative, responses: and anyone with OCD knows that stress aggravates the symptoms. Recovery does not issue a guarantee that life stress will no longer occur, quite the opposite. The newly recovered have to face a multitude of everyday situations with which they are probably no longer well-equipped to deal. It is also essential to understand that we respond to stress in different ways and that whether or not changes cause stress is a very individual thing; this is discussed below.

(Much of the above is based on an article by J. Grayson in the OCD Newsletter).

Some origins of anxiety

Anxiety and feelings of stress are symptoms, a response to pressure. The more intolerable or persistent the pressure, the worse the anxiety. And this does not necessarily mean a single, overwhelming difficulty. More often it is an accumulation of things. This cumulative side of anxiety is well documented in Barrie Hopson’s work on transitions, which he has related to the Holmes and Rahe Social Readjustment Rating Scale (Griffiths 1981). This information is nowhere near as daunting as it might sound. It can be a particularly useful and comforting piece of knowledge. It shows, in easily understood terms, how all manner of changes – many of which the majority of us might barely accepts as changes at all – and an accumulation of such changes, can have a profound effect on our lives.

Doctors Holmes and Rahe found that the adjustment that an individual needed to deal with various changes was remarkably consistent from culture to culture around the world, and they gave mean values to a whole range of these (see the abbreviated list below).

They found that illness or a change in health were likely if certain totals were met during a one-year period. These were; 0-149 no significant change likely; 150-199 mild stress and a 35% chance of illness; 200-299, moderate stress and a 50% chance of illness; 300+, major stress and an 80% chance of illness. It is estimated that it takes a year to replenish the energy expended in adjusting to any of the changes described below.

Understanding that ‘insignificant’ things (like moving house, changing jobs, children starting school) can accumulate a solid amount of stress over a couple of years or so, the obsessive/compulsive and the caring family can develop skill in thinking ahead and can then be ready for possible dangers.

These are the scale ratings that apply most:

  • Death of a spouse – 100
  • Divorce – 73
  • Marital separation – 65
  • Death of a close family member – 63
  • Major personal injury or illness – 53
  • Marriage – 50
  • Marital reconciliation – 45
  • Retirement – 45
  • Major change in health or behaviour of a family member – 44
  • Pregnancy – 40
  • Sexual difficulties – 39
  • Gaining a new family member (birth, adoption, relative moving in) – 39
  • Major change in financial status (lot better, or worse, off) – 38
  • Death of a close friend – 37
  • Changing to different kind of work – 36
  • Major changes in number of arguments with spouse (lot more or lot less) – 38
  • Taking out a mortgage – 31
  • Major changes in work responsibilities – 29
  • Son or daughter leaving home – 29
  • Trouble with in-laws – 29
  • Major change in living conditions (building or remodelling home or deterioration of home or neighbourhood) – 25
  • Change in residence – 20
  • Major change in type or amount of recreation – 19
  • Taking out a loan – 17
  • Major change in sleeping habits (more or less or different times) – 16
  • Major change in number of family get – togethers (more or less) – 15
  • Holiday – 13
  • Christmas – 12

Many of us could go through that list and come to totals that are equivalent to a double bereavement or more over a two-year period. This doesn’t mean that we are then ‘entitled’ to be in deep grief or depression. It certainly does not present an excuse for the recurrence of OCD, but it does give reasons for symptoms if they occur during transitions. It also means that the OC person has found another way to avoid believing that s/he feels terrible for no reason apart from ‘natural weakness.’

Responses to such changes are not particularly simple either. Hopson describes the ‘life cycle’ of a transition (a significant life-change), whether it is planned, unplanned, sudden or gradual, as having seven phases. These are:

  • Immobilisation – feeling overwhelmed by the transition, unable to think or plan.
  • Minimisation – coping by reducing or trivialising the transition, perhaps even experiencing a little euphoria in the process.
  • Depression – feeling powerless in face of the gradually growing understanding of the reality of the transition.
  • Letting go – accepting that the transition has happened and cannot be unhappened. Feelings start to rise again.
  • Testing – trying out new behaviour and situations. Plenty of energy available but a tendency to stereotype people and things – how they should or shouldn’t be in relation to the change – and to become angry or irritable quite easily.
  • Search for meaning – trying to understand how and why things are different now. Distancing somewhat from the transition to get a better look at it.
  • Internalisation – absorbing and finally accepting the transition as part of life.

This is not a rigid series. Getting over a bereavement and getting over Christmas are going to involve different time scales and different levels of feelings. Similarly, people do not move neatly from one stage to the next. Some may become caught up in one stage or another and progress no further, while others may fall back into an earlier stage after a setback or further life change that occurs whilst they are working through the stages. People too have different responses to any kind of change such as welcoming or resisting or fearing as mentioned earlier. Those with severe problems, who are perhaps prone to responding in the more negative ways, will obviously have additional difficulties.

The important point with Hopson’s work and with the Holmes/Rahe scale is that it is another weapon in our armoury of understanding. It allows people to anticipate difficulties, and to ensure that new situations don’t come as an overwhelming surprise to obsessive/compulsives who are already all too liable to react anxiously to the ‘threat’ of change.

Charity workers have talked to many people who have recounted obvious symptoms of bereavement – loss of appetite, sadness, depression, emptiness, loneliness, ‘life is meaningless’ feelings – when discussing a lost job, a lost relationship or even their lost youth and missed chances. The sad thing is that they had denied themselves the right to feelings of grief, regarding them as some kind of weakness or punishment. People are also fond of telling themselves that they should look forward to things such as retirement, moving, the freedom gained by the children leaving home. In reality, these changes may be painful and start a ‘bereavement’ reaction at some level which will be more painful if its legitimacy is denied.

The caring family must accept that the newly recovered person will have a fairly tenuous hold on ‘real life problems’ for a while. New problems will always be arising, some of which can be solved and some of which have to be endured. It is vital, therefore, that the newly recovered person and the caring family use their insight and knowledge to mark current and potential problems in life: Builders are coming next month; her friend will be bringing the baby round; the neighbours have a new dog. If problems are foreseen early, small behavioural tasks can be undertaken or other anti-obsessional preparations made. Certain practical, behavioural tasks will almost certainly have been undertaken during the recovering process and it is absolutely essential that such work is not given up. It can be modified or reduced of course, but recovered obsessive/compulsives should not be encouraged to believe that all the work is behind them and that ‘it’ will never bother them again.

As said elsewhere, the recovering sufferer often has a faulty perception of his or her level of recovery. That is, this person may be a hundred times more able to cope than when in the depths of the disorder, but may still not be ready to deal with the real world ‘head-on’. This is often seen in Anxiety Care groups, where people (often after taking medication), suddenly feel they have a new lease of life and decide to do everything that they perceive they have missed out on over the preceding months or years of restriction. This is understandable, but dangerous. The caring family may have to help this member to take it a little at a time, making it clear that this is not personal.

The latter can be very important as many recovering sufferers still have strong doubts about their abilities and may tend to process any attempt to encourage moderation in their activities as a manifestation of that paralleling doubt in the family; and this might frighten them badly. This can then lead to a further strain on the inter-family relationships, or even redoubled social and physical activity on the part of the recovered or recovering person to ‘prove you all wrong’; with, almost inevitably, negative results. As always, communication is vital.

What about me?

Carers, notoriously, do not care for themselves adequately. This seems to be a particular problem if the carer is female. Mothers are usually genetically programmed to put huge amounts of effort into nurturing their young, and nothing needs more effort and protection than a sick child. There can then be conflict, however, when the cared-for person’s problems are difficult to understand; and even more trouble if the carer cannot really understand what is going on and feels lost, useless, or manipulated. This can work as destructively for a needy partner or parent as for a child.

A natural response to perceived incompetence is to redouble effort; another is to give up and/or look for an outside ‘expert’. The problem is that no outside agency can give the quality and continuity of care that can be provided by a family member, and most carers are aware of this at some level.

This can lead to the carer putting huge amounts of effort into areas that are not yet, or never will be, things that can be countered in the obsessive/compulsive; or areas that are actually working against this person’s recovery as discussed earlier. For example, the carer might be struggling mightily to impact upon some area of compulsive behaviour that is not ready for response to intervention as in the case of a young, female Anxiety Care client.

This young woman had a range of compulsive cleaning and de-contamination rituals of varying intensity, one of which culminated in lengthy bathroom activity. Because this had such an effect on the rest of the family (late for school and work, much argument), the caring mother attempted to restrict the young woman’s bathroom usage. Unfortunately, this sufferer perceived the bathroom rituals as fundamental to her compulsions – without it everything else was ‘wrong’. Restriction then lead to a great deal of unhappiness and conflict, and an increase in the other rituals to ‘make up’ for the lost washing time.

If there had been adequate communication between carer and sufferer and an understanding of the principles of OC behaviour by the family, it would have been clear that the bathroom was not the first place to start; or that a more flexible restriction, based on understanding not family need, was required. In the above case, being thwarted in an extremely important (to the OC) area simply reinforced her belief that nobody understood and that she would be made very anxious in the service of family need rather than recovery. It also led to a distancing from her mother that took a good deal of time to work through.

This reinforces the requirement for the carer to become something of an expert on OCD. This might not seem like part of ‘carer self-help’ at first glance, but it can lead to a very useful reduction in family tension, which can only help the carer. It also feeds in to the carer feeling more competent and will almost certainly ensure that more energy goes into useful, thought through, support rather than effort based on emotion, irritation and not totally useful intervention drawn from the carer because of extreme need. To this end, Anxiety Care has a number of publications on OCD and there are some excellent web sites on the subject, notably the OC Foundation. Anxiety Care also operates face-to-face mutual support groups and online support where carers are welcome and catered for.

Becoming more knowledgeable can have a devastating effect however, particularly if it comes in one, overwhelming burst. For example, some carers attending charity groups for the first time have been appalled at the suffering that, only then, they have realised can be involved in severe OCD. In a few cases this has unbalanced the relationship with the cared-for person, bringing in guilt and shame that, almost invariably, simply clouds the problem without adding anything useful to the process of solving it. Working with others carers or an outside therapist can help here, as can taking the time to read about the problem in one’s own time and at one’s own pace before becoming involved in group work – if this is a practical possibility – or in any other activity that might bring on more information than is easily digestible in one bite. If such a situation occurs, it is vital for the carer not to indulge in guilt or shame. These emotions are only useful when they lead to restricting anti-social behaviour or generating positive change in a person’s responses to life. Nearly every other response is useless at best.

Nobody can expect the carer to understand OCD naturally. Obsessive and compulsive problems tend to creep up on a person over time and research suggests that people often suffer with OCD for many years before discussing it with anyone. Occasionally OCD blooms, fully-grown and very obvious, but this is unusual (sometimes, however, seen after strep infection in children). When the problem occurs gradually, a heavy disability might be in place before the carer is aware that anything is wrong beyond ‘funny habits’. Here, there is no reason in the world why the carer should be aware that expertise was needed. Hating oneself afterwards for one’s ‘stupidity’ or ‘blindness’ is counter-productive and, sometimes, self-indulgent.

Another area of work for carers is finding personal support. It has been the experience of charity officers that professionals working in this field view a support system for themselves, outside the therapeutic environment, as a vital part of providing a good service. There is every reason for family carers to do the same. Sometimes there are carer agencies locally that cater for carers of all types; but a good friend to talk to (or vent to), go out with or just have a cup of tea and a laugh with, on a regular basis, can be even better. This might, however, involve laying down some ground rules first. That is, support from a friend who sees the OC sufferer as selfish, lazy, ‘mad’ or ‘bad’ and insists on displaying this attitude, is not going to be much support at all. This is not to say that such friends or acquaintances should be avoided, just that the subject of OCD should be on these getting-together occasions, if the benefits of contact are still worthwhile for personal reasons.

Having said that, it has been known for carers, forced to defend their family member in face of prejudice and ignorance, from a friend, (a situation where they are likely to be listening rather than shutting their mind and writing this person off immediately as a bigot), to realise more fully how hard it is to comprehend the level of suffering involved; and how hard it must be for the cared-for person to come to terms with this genuine disability in face of trivialising or contempt. As said before, feeling as if this knowledge and understanding means the carer has failed the sufferer in some way is to be resisted.