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National Collaborating Centre for Mental Health (UK). Obsessive-Compulsive Disorder: Core Interventions in the Treatment of Obsessive-Compulsive Disorder and Body Dysmorphic Disorder. Leicester (UK): British Psychological Society (UK); 2006. (NICE Clinical Guidelines, No. 31.)
Obsessive-Compulsive Disorder: Core Interventions in the Treatment of Obsessive-Compulsive Disorder and Body Dysmorphic Disorder.
Show detailsThis chapter consists of personal testimonies that illustrate the experience of a number of people with OCD and one with BDD and also of those involved as family members and/or carers of people with OCD. The testimonies were chosen to demonstrate something of the range of experience of sufferers and carers and should not be taken as representative. These narratives express the experience of OCD and BDD over the lifetime, the effect on family and carers, and the process of obtaining appropriate treatment and the response to such treatments. The testimonies draw from experiences of OCD and BDD over the last 40 years.
3.1. PERSONAL TESTIMONIES FROM PEOPLE WITH OCD AND BDD
3.1.1. Daniel
I've just arrived home from work. Tired and tense, I'm convinced my hands are contaminated with some hazardous substance and my primary concern now is to ensure that I don't spread that contamination to anything that I, or others, may subsequently touch. I will wash my hands, but first I will need to put a hand in my pocket to get my door keys, contaminating these, the pocket's other contents, and everything else I touch on my way to the sink. It will be late evening before I will have completed the whole decontamination ritual. Tomorrow I will inadvertently touch another contaminant, and a similarly exhausting process will have to be performed.
That's how it was 40 plus years ago when, in my early twenties, my OCD became firmly established. Fear of contamination was the main manifestation, primarily, I suspect, because my work brought me close to genuinely hazardous materials: taking precautions was the expected norm. However, ‘checking’ had also become a major preoccupation, not least feeling compelled to ensure that I hadn't been responsible for causing harm to others. Frequently, for example, I would retrace a car journey (often over a very long distance) to make sure I hadn't accidentally hit a pedestrian.
Despite the fact that these compulsions were distressing in themselves and were wasting inordinate amounts of time, I did not seek help. I believed my behaviour to be simply that of a responsible citizen. I struggled on as best I could until, at the age of 27, the distress, exacerbated by an upheaval in my domestic arrangements, increased to such a level that I was admitted to hospital. At that time (1966) OCD was not widely recognised and I was diagnosed with ‘anxiety neurosis’. Hospital provided some respite from both the unsatisfactory domestic/accommodation situation and my OCD triggers, but effective treatment for the disorder was not forthcoming (at one stage a lobotomy was discussed, but fortunately not pursued) and, after 12 weeks, I was discharged.
For the next 15 years or so I ploughed on, always managing to work and support myself, but not having much of a life as the condition, which I had come to regard as unalterable, ebbed and flowed. I did seek treatment from time to time and received prescriptions for medication such as nitrazepam and, later, diazepam. The manifestations of the disorder now included the fear of an extended range of contaminants (my cleaning compulsions demanded the removal of every last molecule of ‘dirt’, so washing or bathing could take hours). Also, I felt compelled to carry out endless checks to make sure things were safe (doors locked, gas off, and so on) and that no mistakes had been made. The latter could be taken to extraordinary extremes: I would imagine that a decision I had taken as part of my work as an engineer could lead to another engineer somewhere relying on my erroneous decision in his calculations, and so on, and so on, until an aeroplane fell out of the sky. And it would all be my fault, so I felt compelled to reassure myself that all was well. Hours could be spent on such exhausting exercises.
Up until this point I had lived alone and so had been able to indulge my compulsions without anyone really noticing. In the early 1980s things changed: I married, became a father, and got some help. This involved more medication and regular sessions with a psychiatrist who diagnosed/confirmed OCD. I was a private patient and, over a period spanning many years, chose to discontinue and re-start the sessions as I felt necessary. The sessions were useful, although in retrospect I can see their value was limited since, instead of finding the courage to confront my fears, I used the meetings for the comfort and relief that an understanding ear can provide. During this period I was still managing to work, but the OCD was certainly restricting my life. I wouldn't travel on certain bus routes because I believed one of the vehicles used on that route was contaminated. I would cross the road to avoid road sweepers and their contaminated brushes. I wouldn't join in outings because of the risk of getting dirt on my limited range of clean clothing.
But now I was a father, and particularly when we had our second child, matching the children's needs for a normal childhood with my own desires for cleanliness and order was not easy. I coped, after a fashion, but the constant anxiety made my experience of their childhood years pretty joyless.
And then about 5 years ago things took a turn for the worse. Following a heart attack and a modification to my diet, I became extremely depressed and the OCD got much worse. I became quite desperate. I vividly recall one occasion at that time when, weeping, I tried to explain the distress I felt over a compulsion to wash my hands that I had resisted. ‘Can you imagine what it feels like to believe you've poisoned your own children?’ I asked.
Once again I sought help. SSRIs were tried, but soon stopped because I couldn't tolerate the side effects. Then I was given two courses of CBT. Each of these consisted of 1-hour sessions every 2 weeks for a total of around 10 weeks. As I recall, the sessions were biased towards the cognitive aspects of CBT, with very little in the way of monitored behavioural tasks. Overall, the sessions were quite helpful in that I was able to discuss my concerns, however, it was a further 9 months of weekly behavioural therapy sessions provided by a support group that really helped me to practise ERP This technique has brought about significant improvements in my condition.
Now, as I approach the age of 65, I strive to maintain the improvement by means of self-administered ERP The mood stabilisation effects of medication (carbamazepine) newly prescribed to treat my recently diagnosed epileptic absences also seem to be making a positive contribution. So, although by no means ‘100%’, I am a great deal better. But it has been a long 40 years.
3.1.2. Ruth
I experienced what I now realise were the first symptoms of OCD when I was about 12 years old. I started to feel compelled to cancel out any distressing thought I had, such as failing an exam or the possibility of a family member dying, by repeating whatever I was doing when I had the thought and replacing the ‘bad thought’ with a ‘good thought’. This included getting undressed and dressed again, retracing words and sentences I'd written, re-reading pages of a book or walking back over a stretch of ground. I would carry out these actions repeatedly until I had managed to neutralise the thought. This could take a long time and would also cause embarrassing situations when I would make excuses to go back to places or pretend there was something I had to do.
Nothing happened to trigger the start of this way of thinking. Nothing had changed at home or at school and I didn't have any major physical illnesses. I do remember that the thoughts and rituals began slowly but increased over time. At first I would have two or three thoughts a day that needed to be neutralised, but over a period of months this became dozens of unwelcome thoughts each day.
These symptoms caused me great distress, which I felt unable to express to people although I often used to cry at home and at school. The compelling need to repeat certain actions also wasted time and sometimes stopped me going out with friends or to new places for the fear of leaving a ‘bad thought’ in a place that I couldn't easily return to. If I was unable to undo these thoughts I would feel anxious and uncomfortable and found it difficult to concentrate on other things. On occasions I would make excuses to return to someone's house or a shop several days or even weeks later in order to try and neutralise a thought I had had on the previous visit. I could sometimes remember leaving ‘bad’ thoughts behind for many months. Throughout my teenage years I kept my thoughts and bizarre actions to myself, concealing them from family and friends and hiding away to carry out my compulsions.
Despite this, I managed to work hard at school and go to university at the age of 19. By this time the distressing thoughts were becoming increasingly sinister and even more painful to me – I started to be scared that I might cause an accident, or I would think about murder, or about hurting or molesting children, although I knew I had no desire to carry out any of these things. I was terrified of the type of thoughts I was having and hated myself for having them but the harder I tried to shake them off the stronger they seemed to become. I didn't feel I could confide in my parents or even friends or healthcare workers because I thought the nature of these thoughts was so shocking that I would be considered dangerous and perhaps locked up. At this point I became seriously depressed and suicidal, losing a lot of weight and being constantly on the verge of tears. Over the years I saw a number of GPs who diagnosed depression without exploring the nature of my depression in any way. Antidepressants and some sessions with a counsellor offered some temporary relief. However the counselling sessions didn't touch on the real problems I was experiencing; the counsellor didn't ask me the right questions and I didn't feel I could open up about the type of thoughts going through my head.
Over the next few years the disturbing thoughts continued. There would be bad periods when the thoughts seemed to be with me much of the time and then sometimes for no obvious reason they would fade a little, although they never went away completely. Oddly enough when I was very focused on something like preparing for exams, a time which people often think of as stressful, the thoughts would actually ease off a little.
However, in my early 20s the thoughts were joined by a compelling need to check to ensure that I hadn't caused an accident and constant hand washing to avoid passing on contamination. This included regular episodes of going back over journeys on public transport or walking back down a street to check that I hadn't accidentally brushed past someone and hurt or killed them. My fear of contamination was about the possibility that I might have been in touch with a poisonous substance. Germs didn't really bother me and I even remember reading an article at that time about a woman having treatment for her obsessive hand washing due to a fear of exposure to germs and I didn't associate it with what I was experiencing.
Eventually OCD was diagnosed by a GP when I was 26 and I was referred to a psychiatrist. Had I been questioned in any way about the nature of my thoughts and anxiety, I feel that OCD would have been diagnosed much earlier. I was desperate to confide in someone but no one ever asked the right questions. A long course of tricyclic antidepressants (clomipramine) and some behavioural therapy helped get my OCD back to a manageable level and relieved the depression.
There was only a very small amount of relief in having an official diagnosis for what I was going through. By this time I honestly thought it was too late to get my life back to normal. In addition, referral to a psychiatrist meant having a medical label that I would have to carry with me for the rest of my life. I was also frightened that I might have to physically confront my fears in some way. The fact that the medication very quickly dampened some of the worst thoughts was a relief. Clomipramine caused unpleasant side effects including severe sweating, constipation and a dry mouth but they were a small price to pay and I believe that having it prescribed at that time saved me from possible suicide.
However, I continued to have relapses over the next 10 years and it was only when I received a course of CBT along with a different type of antidepressant (an SSRI) that I felt I made significant steps to dealing with my OCD and learning skills that I could draw on during future relapses. Unlike clomipramine, the SSRIs didn't cause any major side effects and the CBT, although very difficult to do, provided me with a new angle for looking at my obsessions and the skills to stop carrying out the compulsions.
I also tried an OCD support group and I initially enjoyed meeting other people with OCD. After many years of hiding my bizarre rituals and painful thoughts, it seemed quite incredible to meet so many people who had such similar experiences and stories to tell. At the same time I found a tendency amongst some people to want to talk only about how terrible OCD was and after a while I found I didn't gain anything from these groups.
At the age of 41 I still have OCD but I also cope well on a day-to-day basis and have done for a number of years. I hold down a management position at work, am in a long-term relationship and enjoy travelling overseas and socialising with friends – things that didn't seemed possible earlier in my life. I continue to take a maintenance dose of an SSRI (currently fluoxetine). I am aware that if I don't keep on top of my compulsions by not giving in to them then they have a tendency to creep back. I find that having the bad thought and not trying to neutralise it in any way ultimately helps to make the thoughts seem less important, although I have to live with the initial anxiety. The more I try to neutralise the thoughts the more they start to take over. Sometimes I worry that taking antidepressants on such a long-term basis may be damaging for my health but equally I feel that they do work and help me keep on top of my OCD. I would be equally concerned if I was forced to stop taking them.
In looking back, I feel strongly that had my illness been recognised and correctly treated much earlier then I would have been able to achieve far more in life and would certainly not have wasted so much time carrying out senseless compulsions or avoiding situations because of my obsessive thoughts. I came close to suicide on a number of occasions; found relationships difficult because people would pick up on my sometimes odd behaviour and missed out on many opportunities, including overseas travel, flat sharing with friends, promotion at work and marriage and children, because my obsessions prevented me taking these opportunities. OCD came close to completely ruining my life. I don't know where I would be now if I hadn't received CBT from knowledgeable therapists and been prescribed appropriate antidepressants. I do believe that you need to take a certain element of responsibility for your own recovery by being prepared to try appropriate medication and having a go at CBT if it is offered but it is very difficult to do this without sympathetic professional help and guidance.
3.1.3. Estelle
I am 25 years old and OCD first took over my life almost 10 years ago (although I did not know what it was until about 18 months after it all began). I suppose that when I look back I can see ‘signs’ of OCD back into my childhood but the full-blown illness was triggered suddenly after the suicide of a boy in my year group at school. I believe it was my attempt to make everything ‘certain’ and ‘safe’ again after this horrifying event blew apart my sheltered middle-class life. I began to feel I was being taken over by some force in my brain that I could not control, until eventually my days and nights became ruled by its orders:
‘If you don't wash your hands twenty times, you will have to kill yourself … Oh no, I don't think you got the soap underneath every fingernail on that nineteenth wash, so it's all negated, you must start the washes again … you must stop yourself committing suicide … no, while you had that thought you didn't wash between those fingers, start again! … but it doesn't make any sense, other people don't do this! But just what if, what IF you don't do it, then you might not be able to stop yourself killing yourself!’
This may sound like a psychotic experience but in fact I could very well see that what I was doing made no rational sense. When eventually I had satisfied the requirements of the washing ritual I would attempt to get myself out of the bathroom. Walking over the threshold of any doorway was another tortuous experience:
‘What did you think about when you stepped over that line? Was it anything related to suicide or death or the boy? You thought about Corn Flakes! But CF were the initials of the boy! Go back and do it again, that connects you to him! Make your mind totally blank!’
In the end I could connect anything I thought of to the awful events, just words sounding slightly similar to ‘bad words’ was enough, and I had to go back and back and back until my mother came and dragged me away, or I made her say it would be OK, or I fell in a heap from sheer exhaustion. The rituals and thoughts were incessant everywhere I was: getting up from a chair, swallowing food, or writing a word in my schoolbook. If I thought bad thoughts as I did the action, the action had to be repeated. Certain clothes, objects, food, TV programmes, were ‘bad’ and had to be avoided. I would cry at the end of the day just because I wanted the rituals to leave me alone but they would not, and the consequences seemed so important and so dire that I had to keep doing them to protect myself and others from them.
These experiences, and the fact that it felt as though I no longer had control of my mind, caused me to believe that I had gone insane. I think my parents perhaps thought the same, because they did not want me to see any doctors for fear I would be locked up. They tried to reason with me, to ‘rationalise away’ the OCD; this did not work and could not work, and so they became more and more involved in my rituals as I asked for constant reassurance that ‘bad things’ weren't going to happen.
Although I had been to see my GP several times with somatic complaints a bit like glandular fever (unsurprisingly I was exhausted the whole time), she had not probed further to find psychological causes, and I had been too frightened to mention the OCD to her unprompted, because it felt so much like madness. Describing the symptoms to healthcare professionals can be one of the worst things for a person with OCD; the awareness that their thoughts and behaviours are abnormal and bizarre can make them they feel embarrassed and also fearful of being laughed at or worse being told they are mad.
It was a friend's mother, another GP, who mercifully rescued me from this hell, or at least told me that there was a way out of it, when I broke down and told her about it. She arranged for me to see a psychiatrist and explained to me about OCD; she even gave me a video that explained it. (I was also diagnosed with agoraphobia and social anxiety.) I cannot express the relief of being told that I was not ‘mad’ in any classical sense, and that something could be done to make the uncontrollable thoughts and rituals less uncontrollable. I was firstly given a tricyclic antidepressant (clomipramine) and although I came off that after 6 years because of side effects such as dyskinesia [involuntary movements], I have since tried the full range of SSRIs and SNRIs, and none has been as effective as clomipramine. It is certainly not a cure all, but for me it was more than I could have hoped for, and allowed me to suppress the OCD enough to get myself through high school final exams and into university with good grades. The psychiatrist tried family therapy with us, which I think is probably essential for any child and young person with severe OCD. One of the most potent perpetuating factors in OCD is family members taking part in rituals or offering reassurance; this may feel like helping but it only reinforces the importance of carrying on this bizarre behaviour in the sufferer's mind. But I was also given fairly ineffective strategies aimed at ‘stopping’ intrusive thoughts – such as snapping an elastic band on my wrist and saying ‘stop’ every time one popped up. Unfortunately this just added more focus (and more pain) to the thoughts and became a ritual in itself.
Over the years since then the symptoms have waxed and waned. Each time the OCD hits me again with full force, it seems to be in a different form, and each fixation can last several years. After protecting myself from suicide, the next focus for thoughts and rituals was catching AIDS, which involved much washing and disinfecting and avoiding public places where I believed surfaces harboured the dreaded virus. It made no difference to be told ‘you can't catch AIDS from surfaces’ – the well-worn ‘yes, but I might be the exception’ or ‘what IF … ’ or ‘better to be safe than sorry’ revolved around my mind. My current problem is the fear that I will suddenly lose sight of any sense of morals and enter a state of madness where I will start harming other people in horrible ways. The same types of thoughts still pop into my mind as they did 10 years ago, but these days they have less power over me because of treatment I have received.
Although CBT is always put forward as the treatment of choice for OCD, the initial severity of my illness meant that such a treatment would have been ineffective before medication allowed me to function again to a certain extent. The other therapy that helped me understand better why I might suffer from this disorder was psychodynamic therapy, which I received weekly for 2 years whilst at university. Because OCD is so often accompanied by a range of other anxiety and mood problems, not to mention self-esteem issues, this therapy enabled me for the first time to find some value in myself as a person, and to mitigate the hatred I had long felt for myself partly because of the OCD. I had had problems forming friendships and relationships, but as a result of my therapist's acceptance of me I realised for the first time that I did not have to be a victim of my illnesses and defined by them, and could be liked by other people for the person I am.
Over the last year I have finally had the opportunity to have some CBT in a specialist group for OCD sufferers, but had I not first had the psychodynamic therapy I don't believe I would have thought enough of myself or have had the confidence to do it. Nor would I have understood that my OCD is my way of trying to have control over uncertainties in life. CBT is very hard work, and requires a lot of thought outside the sessions, but it does equip the sufferer with tools to allow them to realise the difference between thoughts and actions; these two are often fused in the OCD sufferer's mind.
I don't think I will ever be free of all the symptoms of OCD and I may always need medication to make it behave itself, but I think I have been lucky to receive good treatment and have now almost completed a masters degree. It is perfectly possible to lead a satisfying life with OCD but the main problem is to get over the hurdle of explaining the thoughts and rituals to a doctor because of the fear of madness. Voluntary work with sufferers has made me realise too that there is widespread ignorance of the signs and symptoms, not to mention the horrifying nature, of this disorder even amongst GPs. In my own experience, some members of the psychological and psychiatric professions tend to steer clear of patients with OCD as they believe it is a ‘difficult’ illness to treat.
3.1.4. Jane
Only now do I realise that I actually had all the signs of BDD at an early age. I was always sensitive and self-conscious and felt that I was different from the other girls. My confidence increased slightly when I reached my mid teens and I was able to camouflage my appearance with make up and straighten and control my curly hair. With the arrival of a few boyfriends and my marriage at 18 I felt a little ‘more normal’ but by this time the obsessive behaviours had also set in. I would spend hours grooming my hair and putting on make up and I would not allow myself or anyone else to see me in my ‘natural’ state (no make-up and hair left to dry naturally) for fear that they would discover the real ugly and disgusting me. From this time on my whole life revolved around trying to keep up this façade. Having carried out the camouflage rituals I would avoid going out in the rain, swim, anything that could affect my image. I visited countless hairdressers, bought endless amounts of hair and make up products and resulted in cutting my own hair, trying desperately to find a miracle that would make me look acceptable but this never happened. This was to continue until I finally found out that I had BDD at the age of 45 and received the right treatment.
At 21 my marriage broke down and I became severely depressed and the illness took over my life. I was so repulsed and disgusted by my appearance that I thought that no one would ever want me again. My parents took me to the GP who treated me for depression and prescribed Valium. The anxiety and depression became so unbearable that I took an overdose and was then referred to a psychiatrist. The next 7 years of my life were spent in and out of hospital trying countless different types of medication but the symptoms persisted and I took more overdoses. I can't remember now what it was that I was prescribed but I do remember that at times I felt completely ‘spaced out’ and unable to function and once experienced hallucinations. I also had the feeling that I was being experimented on with endless different drugs that didn't have any effect. I explained to the doctors that I felt distressed because of the way that I looked but this was dismissed. This increased my feelings of embarrassment and shame and I felt that I was also a ‘sinner’ for worrying so much about the way that I looked. The illness continued and my life revolved around the level of satisfaction I could achieve with the never-ending cycle of camouflage.
During this time I was unable to work and during one spell in hospital I had a relationship with another patient. This seemed to give me some reassurance that I was not completely undesirable and I went to live with him. This turned out to be a disaster as he had severe mental health problems. I got pregnant and ended up homeless with a 3-month-old child.
When I reached 28 I met my second husband and the following years were much better with the distraction of my home, children, and career. However, social activities were still affected because it was difficult to be around others who were attractive and therefore ‘adequate’, unlike myself.
At 45 things took a serious turn for the worse with the failure of my second marriage and the BDD became severe. I was constantly checking my reflection in the mirror for up to 4 hours at a time. I felt repulsive and hideous and didn't feel that I looked human or deserved to live. I would constantly compare myself with others and look at old photographs, always focusing on what I considered to be my worse features, for several hours at a time. I thought about my ugly appearance every moment and again became suicidal. I couldn't talk to family and friends about my feelings because I was frightened that they would think that I was vain or mad. I couldn't understand why anyone could bear to look at me and not recoil in horror. The rituals around my make-up became worse and I would only remove it to immediately replace it. I styled my hair several times during the day and at times after washing and styling it would have to start all over again. I spent countless amounts of money on cosmetics, hair products, magazines, and salon treatments but the obsessive thoughts got worse. I felt that I could not get on and do anything if I could not get an acceptable image in the mirror and the more that I tried the more hideous I seemed to look and the more distressed I became.
My emotional state also caused physical problems such as irritable bowel syndrome, chest pains, weight loss and muscle pain. I was being treated at this time by a psychiatrist who tried different medication, including antipsychotics (which didn't help), and referred me to two different psychologists. Most of the sessions were spent going over my past, which was not helpful, and I was discharged because I was making no progress. No one seemed able to help me. At one stage it was suggested that I put post-it notes in my diary with affirmations like ‘I am beautiful’ but this had no effect because I didn't believe it – it just made me very angry. The last psychologist that I saw told me, in so many words, that I was a hopeless case because I had received so much help (from psychiatrists, psychologists, community psychiatric nurses) and was not getting anywhere – this added to my feelings of shame and hopelessness.
I was convinced that unless I could change my appearance I would have to take my own life. Over a 3-year period I spent £20,000 on numerous cosmetic surgery procedures but it made me more ill, this time believing that it was my own fault rather than nature. I had two face lifts, a brow lift, chin tuck, laser treatment, upper and lower eye surgery, human tissue inserted under lip/nasal lines and many injectable treatments to plump out laugh lines. I put myself through hell but it seemed my only option, as I had nowhere else to turn. The feeling as I was going under the anaesthetic was wonderful as I felt that there was the chance that this operation might just work and I would be happy again. In reality this never happened. As the surgery healed the anxiety increased as I still saw the ugliness, made worse now by the guilt and shame of what I had done to myself. Even so, I still felt compelled to have more surgery because ‘this time it might work and I have no other chance of life’.
Then one day as I was recovering from my last bout of surgery in 2000 I saw a programme on the TV about a girl with BDD. It seemed incredible that other people felt like me and that there was a name for my condition. I then found a BDD specialist who immediately took me into hospital for treatment. To be able to talk to someone who understood my condition after suffering from BDD for 25 years was overwhelming and the hope that this gave me was such a relief. After 6 months of SSRI medication and CBT I began to feel that I was improving and after a further 12 months of treatment I returned to work and felt back in control of my life. I did a lot of exposure therapy, which was difficult, but in time paid off. I also did a lot of cognitive work and after a while found that I was beginning to think in a more positive way. I eventually found that I was starting to believe that I am a worthwhile person and although I still hate the way that I look I realise that I can lead a normal life. I use the CBT skills on a daily basis to help prevent a relapse and I still take the SSRI.
I believe that if BDD had been recognised earlier and treatment had been available my life would have been happier and more fulfilling. It also had a terrible affect on my family. When I was in my twenties my father often said that I should ‘pull myself together’ and Mum sometimes remarked that I was being vain. When I was diagnosed it was difficult for them to admit that I had a mental health problem, I think that they may have felt partly to blame, that they had done something wrong as I was growing up, but they were good and loving parents. So much time and money has been wasted on this illness and up until 4 years ago it has ruled my life. I am grateful to have now received appropriate treatment. It is an ongoing battle but I am finally in control of the BDD.
3.2. THE PERSPECTIVE OF PEOPLE WITH OCD AND BDD
As the testimonies demonstrate, OCD often develops slowly with no obvious ‘cause’, although it may also be triggered or exacerbated by a particular event. It may start with a few intrusive thoughts that lead to rituals and compulsions (e.g. needing to check that a door is locked or over-zealous hand washing). In BDD the obsessive thought is related to the person's physical appearance and might mean that the person feels compelled to keep checking his or her appearance in a mirror. Over time these actions or compulsions become more entrenched and part of everyday life and the thoughts that accompany them become more intrusive and obsessive. The range of rituals may also increase; some may fade away completely, but be replaced by new or more complex ones.
The testimonies reveal that the actions or rituals become absolutely necessary to a person with OCD who believes that they serve various purposes. They can protect the person from possible sources of danger and contamination and make him or her feel ‘safe’; but they also shield others from the person with OCD, who may consider that his or her actions may be dangerous or contaminating. The actions and rituals can also, at first, impose some kind of order on the world. If the rituals, whether actions or deliberate thought processes, do not take place, the person with OCD will experience overwhelming anxiety and fear. For someone with OCD his or her compulsions may become the only means of neutralising anxiety and preventing harm, although at the same time they can alienate him or her from other people as the obsessions and compulsions become all consuming. For people with BDD, compulsions, such as keeping the face ‘masked’ with make up or covering up or disguising a perceived physical flaw, are necessary to be able to confront other people.
As shown in the testimonies, OCD, if left untreated, may become more severe. The symptoms may take on a more ‘sinister’ and troubling aspect (such as the thought of killing someone), leading the person to feel depressed and suicidal, and can take up a huge amount of time. While the actions are about retaining control, they also become controlling in themselves: people with OCD may feel that they are being ‘taken over’ by their obsessive thoughts. A person with these conditions may know that the thoughts are not entirely ‘rational’ but will nevertheless be compelled by them. OCD might also be exacerbated by significant life events, such as starting a new school or university, moving house, marriage breakdown, or health problems. However other people with OCD may find that periods of stress at school or at work may temporarily take their minds off the obsessive thoughts.
The testimonies also vividly express how OCD can significantly affect a person's daily life and his or her relationships with other people. Although some people can disguise their OCD this comes at a great cost: they might decline social invitations that interfere with their compulsions or completely withdraw from the people closest to them. Other people with OCD might ‘involve’ other people in their compulsions (see the testimonies from carers below): carers and other family members might feel that they are ‘controlled’ by a person with OCD to the extent that they subscribe to his or her rituals. This puts considerable pressure on personal relationships. Some people with OCD can find that their lives are severely restricted and may confine themselves to a small part of the house or a single room that is deemed to be ‘safe’ or ‘clean’. With BDD, a person may feel unable to be around other people who are perceived to be more attractive.
A person with OCD might be reluctant to seek professional help due to feelings of embarrassment and shame and be worried about talking to someone about what might appear to be ‘dangerous’ thoughts. It is not uncommon for people with OCD to visit their GPs and not talk specifically about their obsessions and compulsions, but more generally about being anxious or depressed. If a GP diagnoses depression in such instances it is important that the reasons for the depression are explored otherwise diagnosis of OCD may be missed. Diagnosis of OCD may come as a relief for people who have not realised they suffer from a recognised and treatable illness although a diagnosis and a medical ‘label’ can in themselves bring problems.
Once the condition has been diagnosed, it is essential that the person with OCD works with a healthcare professional who has appropriate training in the treatment of OCD, and with whom the person can build up a relationship of trust and understanding and find the courage to confront their fears and anxiety. Particular types of antidepressants (SRIs) can reduce some of the anxiety and depression associated with OCD and may reduce the obsessions and compulsions to some extent. This can help the person to feel calm enough to benefit from psychological therapy. It is important that specialists listen and sympathise but are also clear, direct and positive about the treatment process. A sense of humour is usually helpful too. The OCD sufferer is often asked to do the things they most fear, therefore support, encouragement and understanding from the therapist, and family if appropriate, are vital. (See Section 3.5 for family and carer support.)
Some people with OCD report finding group therapy sessions particularly helpful because they can learn from seeing how other people react to treatment. In the same context, two therapists can be useful because one maybe able to reinforce what the other is saying. OCD sufferers are often keen to argue about why their fears may be justified and it is harder to argue against two therapists both offering the same advice.
Once psychological treatment is underway and the sufferer has made some steps towards recovery, the sufferer has to learn to take some responsibility for their treatment, such as taking opportunities to confront on-going obsessions. Home-based tasks or ‘homework’ will usually be assigned to continue the treatment outside the therapy session. If the person with OCD learns how to tackle their fears and anxieties effectively, this can provide him or her with skills to cope with future relapses. A hierarchy of ‘tasks’ can help the most difficult seem less daunting once the person has some success tackling more moderate difficulties.
It is also vital that all aspects of OCD and BDD are treated. The nature of the conditions can vary over time and patient may suffer from a number of different types of compulsions. Any one compulsion should not be treated to the exclusion of others, unless the patient is shown clearly how the same principles can be used for different compulsions. It can also be helpful if the patient is treated in the area where the problem exists; this could mean that the contaminated articles from home are brought into therapy sessions or the therapist visits the patient's home.
OCD can be successfully managed, but both sufferers and the medical profession should bear in mind that the condition can last a lifetime and that even sufferers who have responded well to treatment may have periodic relapses. It can be helpful for a patient to know where to return for treatment during a relapse and to be aware of any maintenance treatment that is available. This would help to prevent the patient having to go through the process of waiting for or starting any specialist treatment from scratch.
Some sufferers find support groups beneficial. When meeting others with OCD, people can feel relief that they are no longer isolated. Some people with OCD report finding the most benefit from well managed support groups that focus on dealing with different aspects of the illness. This may include sharing experiences of treatment and useful self-help strategies. This type of group experience can also encourage people to seek or return to CBT. Moreover it can help people to keep up their efforts to confront anxiety provoking situations without resorting to compulsions or, in the case of BDD, camouflaging. Some sufferers say they have found support groups less beneficial when members of the group use the sessions primarily to complain about lack of treatment for OCD or suggest it is impossible to ever recover from OCD.
Although people with OCD might live with the condition all their lives, it is possible to return to fulltime education or work, conduct fulfilling relationships and regain a sense of equilibrium. The very idea of ‘recovery’ can in itself improve a person's outlook.
3.3. SUMMARY OF THE NEEDS OF PEOPLE WITH OCD AND BDD
The testimonies suggest that the following are useful for people suffering from OCD and BDD:
- Respect and understanding from healthcare professionals
- Awareness and understanding from public sector services including educational establishments, local authorities, police and emergency services
- Full information about the nature of OCD and treatment options
- Psychological treatment that directly addresses the OCD
- Group therapy sessions and the possibility of working with more than one therapist
- That all aspects of the OCD are treated
- Information about what to do in case of relapse
- Information about support groups.
3.4. PERSONAL TESTIMONIES FROM FAMILY MEMBERS/CARERS OF PEOPLE WITH OCD
3.4.1. Sophia's mother
My daughter Sophia was diagnosed with OCD a year ago when she was 16, which is when her behaviour was of particular concern. But in retrospect, it is quite possible to recognise some early signs of OCD and anxiety in Sophia that we did not then identify as a problem. For instance, after the death of the Princess of Wales she and her twin brother Tom both seemed more anxious about the possibility of something happening to my husband and me. They would both need to be at the door as I left the house and sometimes Sophia would make me look at a piece of paper or take something with me. She had a set of things she said, like ‘take care’ or ‘be safe’. She would often say good-bye many times. Tom did the same to some extent, but not as much, and with him it lessened over time. On another occasion when we were on holiday, Sophia became hysterical when we did not walk in single file along a roadside. The traffic was so incredibly sparse that her concern seemed laughable to us and we gently mocked her. I am sure that there were other signs that we passed over without realising.
Sophia's friendships never seemed easy at school; she was ultra-sensitive, becoming hysterically upset about perceived slights from teachers or friends, and was often reluctant to invite friends home or accept social invitations. She was a perfectionist, not confident in her own abilities and a private person about some of her deeper feelings. In 2003 I noticed that she found revision for exams difficult because she had an odd and laborious routine of writing out her notes (‘I have to do it this way’, she would say) that would never allow her to fit in all of her revision. This clearly began to cause her worries too, although she passed her exams that summer reasonably well.
However, 2 weeks after starting the autumn term, Sophia took an overdose of paracetamol and aspirin. She told me afterwards that she wasn't trying to kill herself, but that she felt so bad about life in general she wanted someone to notice; she also felt that by taking an overdose and making herself sick she could give some form to her inner pain (and that maybe she could get a day off school!). I took her to accident and emergency where she was treated with great sensitivity by the staff and admitted to the children's ward (she was still 15) to be monitored. Before she was discharged the following day a psychiatrist talked to her, and then interviewed my husband and me. I later realised that this was the cause of a major and continuing trauma for Sophia. She felt that the psychiatrist was hostile, was trying to ‘catch her out’, or suspected she wanted to ‘lock me up because I'm mad’. I don't know if the psychiatrist was in fact insensitive and handled the interview poorly, or if Sophia was paranoid about the experience and reading catastrophe into the scenario, which is something I now recognise she does as part of her OCD. Whatever the truth of the matter, it made her hugely reluctant to accept further counselling, medical or psychiatric advice.
The first thing we did, partly on the advice of the psychiatrist, was to immediately arrange a meeting with Sophia's school counsellor. Sophia was very reluctant but we all attended an hour's session as a family the day after the overdose. The counsellor was, we thought, brilliant, unpatronising in tone, and helpful to us all in untangling the reasons for the overdose. Sophia seemed relieved.
I instinctively felt that the best thing was for Sophia to continue with life in as normal way as possible although we all felt that the world had somehow cracked in two. We naturally felt unbelievably stupid not to have noticed how bad she had been feeling about life. The hospital, acting very promptly, had sent a report to our GP who phoned me the day after the overdose. She told us, as had the counsellor, that ‘life as normal’ was the best thing. Her call was reassuring, sensitive and useful to us.
We had a follow-up counselling session the week after the overdose. This was with the same counsellor we saw at Sophia's school, who was also a practice counsellor at our surgery. Our GP encouraged us to take up the option of private appointments with her because these were longer than those available on the NHS. Furthermore, she and our GP exchanged information about Sophia's condition, which was really useful.
Despite this support from the healthcare professionals, Sophia started to demonstrate other problems, including panic and anxiety attacks, which we found very frightening and deeply upsetting. Sometimes Sophia managed to get in for only an hour of school. Her sleep was now down to about 3 hours a night because she had nightmares and needed to keep the light on. She worried about chairs stored in a cupboard and had to keep checking them ‘to make sure they were OK’. During this very difficult period I was often up with her late into the night so she could talk through what was in her head. It was incredibly exhausting and I saw the counsellor on my own to talk about Sophia's behaviour and to gather some strength to deal with things myself.
Our GP continued to be very helpful by supplying a letter to Sophia's school when her GCSE coursework deadlines could not be met. She saw Sophia regularly and offered her a referral to the Child and Adolescent Mental Health Services clinic. By this time Sophia had passed her 16th birthday and her treatment entered the adult phase. It was no longer up to us as parents to accept or not. Sophia initially rejected the offer of the referral but after a few weeks passed, there came some sort of watershed when she realised she wasn't getting better and certainly wasn't coping. She agreed to the referral. We were then told we were on a waiting list, but given no indication how long we might have to wait. This depressed Sophia hugely, not to mention us. We had felt the lifeline we had been offered had been roughly withdrawn. She feared that the NHS thought she was ‘making everything up’ and didn't believe her.
During this period Sophia's behaviour was still a great concern and in some ways it worsened. I wrote to our GP with a plea for help. I felt that if Sophia was to have any chance of living a reasonably normal 16-year-old life, attending school and taking her exams, she needed help immediately. I wasn't sure that as a family we would have been able to cope with much more in any case and I told our GP how stressed we all were. I became very tired, tearful and often short-tempered, and there were times when my husband and I were sick with worry. As I was Sophia's only home confidante, I also had to relay to my husband and to Tom what I felt was going on in her head to help them understand. I believe Tom thought that her behaviour was occasionally manipulative and attention seeking.
As a result of my letter, our GP asked for the referral to be expedited. She also obtained permission from a consultant to prescribe citalopram (10 mg per day later increased to 20 mg). The referral (with a community psychiatric nurse (CPN) at a family centre) was scheduled to take place within a week of the prescription being made to ensure that any side effects were monitored (there were a few initially – sleeplessness and feeling sick and ‘spaced out’). But I was also aware after the first week that a marked improvement had taken place, with significantly reduced levels of anxiety. (A little later this allowed Sophia to attend sessions of CBT with some hope of benefit and also helped her tackle school and exams.)
Our first appointment with the CPN was for the whole family. Subsequent sessions were for Sophia alone, but we also had a further three sessions as a family during 2004 (which Sophia found very stressful). The sessions were, I think, set up mainly to encourage Sophia to talk to us openly about her feelings and anxieties. I think the CPN took the view that if Sophia felt freer to talk, her emotions would be less likely to ‘implode’ as they had before with the overdose. CBT was recommended and appointments were set up to see a trainee psychologist working with the clinic.
It was while Sophia was receiving treatment at the family centre that she was first diagnosed with OCD. The trainee psychologist explained it to Sophia and gave her an information sheet, but this was not an adequate method of explaining OCD to a family member or patient and the effect it can have on the whole family. At the next family session we asked specifically about OCD and for advice and strategies for helping Sophia deal with certain situations we had as a family experienced. But we were not offered much advice. At no point was the subject of ‘enabling’ (or not ‘enabling’) raised, or how we might help her when her anxiety compromised us in carrying out our ordinary lives safely or efficiently. The fact that Sophia's tendency to catastrophise comes from her OCD was never made clear. It would have been helpful to be told.
I have learned more about the condition from an OCD online forum than from anything else I have read. It gave me reassurance that there were so many others suffering in the same way. I think we were all a bit frightened by the diagnosis at first. It meant she really did ‘have something’. But when we thought about it we saw it was actually positive to have a diagnosis as we knew much more about what we were dealing with.
Sophia had about 10 sessions of CBT in all to help her with some of her checking rituals (we never realised just how many of these she had as she had kept them well hidden). I think Sophia found these beneficial and I am not aware of her checking cupboard doors as often as she did. However, Sophia's obsessive thoughts are very deep and are hard for her to live with. I don't think this has been addressed through the treatment to date. I don't think she even recognises that the thoughts are part of the OCD. She seems to think they are separate.
The CPN has also continued to see Sophia regularly and has been very good about fitting in extra sessions if Sophia has been going through a particularly bad patch, as happened before exams in the summer.
Our understanding is that OCD may not be curable, but must be lived with. We see that if Sophia is in control of her own life she manages better. However, she is still subject to some decisions that we make, and while we try to avoid making decisions based on her OCD if we know something is going to cause an anxiety attack that will make her and us stressed for hours, it's sometimes tempting to take the easy option and not make the decision.
I have found the year immensely wearing and have been unable to work since April because I find it virtually impossible to concentrate. I have become deeply involved with my daughter on a level that may not be good for either of us. However, given that it's clearly dangerous for her not to talk I feel I must be there for her at the moment. I have continued to insist as hard as I can that she continue to see a counsellor. I need her to see someone else because she simply must talk to someone that isn't me.
Tom has also found it hard. He and Sophia often have strident arguments, with Sophia ratcheting up the tension on purpose at times. He then feels he is to blame for causing a scene. He has shown more signs of stress recently, looking sad and withdrawn.
Nevertheless I feel reasonably confident that Sophia has a chance of living a ‘normal’ life. Although she does not see it that way herself, thinking she is unpopular, incompetent and unattractive, when I look at her with friends she is clearly one of the more mature girls amongst her peers and they look to her for opinions and support. I do worry that her abilities have already been severely hampered by OCD and that her academic results will never reflect her actual ability. But she has had a part-time job that she enjoys and she is clearly valued by her employer.
3.4.2. Peter's mother
My friendly, socially aware, intelligent, considerate 18-year-old son has OCD. The period leading up to Peter's diagnosis 3 years ago was the worst of my life. By the time OCD had escalated into an easily identifiable condition, our family was already exhausted from years of tantrums, which Peter had had since he was 2 years old. OCD was different though, and took us down an enormous slope that we found terrifying.
At its worst, Peter would return from school and then spend 2 hours in the bathroom trying to change out of his uniform. He would check his palms were clean, and then look at the backs of his hands. However, while looking at the backs of his hands the palms may have got dirty, so had to be checked again, then the backs of his hands again, and so on, and so on. His hands would be red raw from unnecessary washing. He was unable to meet friends, play the piano, and go in the garden. He was unable to get onto a bus until he'd checked everyone getting on, to see he wasn't being followed. He thought any conversation we had inside a car could be heard by people on the pavement. He believed that his sister and I could get pregnant just by walking into his bedroom. If I got into his bedroom and straightened his bed cover he would think it was contaminated because it had touched a different part of the wall.
Before this, Peter got top marks at school, but this changed over a few months. First his writing changed from being very neat to scrawled and careless. Then he stopped being able to start work, or if he started he would be unable to complete it or would just lose it. He got through his GCSEs on the basis of his earlier work, but 6th form was a problem. Peter is currently re-taking the lower 6th and will complete his A levels next year. While we had once assumed he would go to university, and felt he would love the experience of living away from home, now we know that university at the moment would be pointless, and that it would be positively negligent to suggest he moved out. I feel that his academic and work potential is minimal until he can find a way of overcoming the block that OCD places on his being proactive in making progress on set projects. The more important and interesting the project, the more OCD kicks in to block it. There is great sadness when the person you knew as a child with fantastic potential has to delete a computer file just when he's actually managed to do some work, and walks away from AS levels with one grade ‘E’ when he has the intelligence and skills to do much better.
There are several aspects of Peter's care worth commenting on. After promising an urgent referral to a child and adolescent psychiatric clinic our GP forgot to send the letter. I found this out 5 weeks later. By this point we were desperate. Peter was moaning and crying with frustration. He sometimes climbed on the roof of our house, and often threatened to jump out of an upstairs window because he saw no point in living. He ran away from home once and we had to get the police involved. One weekend we went to the out of hours GP who was the first to suggest OCD and the first to give any medication (buspirone).
When we eventually met the child and adolescent psychiatrist things started to get better. She was honest, calm and realistic (saying for example that when we went on holiday we would also be taking OCD with us, and that we needed to be practical), and engaged very well with Peter and the family, explaining to us clearly about the contribution we could make in helping Peter resist giving way to his compulsions. She emphasised that, however much we wanted to go along with the compulsions just to get some short-term peace, they would just continue, so in the long run the only way was to be calm but firm in resisting the urge to get involved in fulfilling Peter's compulsions. She was also positive in separating the OCD from the person, and saying that Peter's health came above his exam results (she wrote in advance to the examining board but I don't know if that had any effect).
Peter's psychiatrist also prescribed an SSRI (Seroxat) and described how it was believed to work. Although life is still not completely quiet in Peter's head, Seroxat has helped enormously by completely stopping the tantrums and reducing the effects of the OCD by cutting down the time spent trying to get out of a cycle of compulsions.
Peter also started having sessions of cognitive behavioural therapy. Although he found these sessions mildly interesting, the first person who worked with Peter was not inspiring, and did not involve the other family members. The strong implication was that this was Peter's private work and we shouldn't ask too much. We therefore had no idea how we were supposed to support Peter between visits. We asked to see someone else but the same thing happened. Occasionally Peter mentioned that he was trying to use a strategy he'd been taught, and we were very pleased, but this never lasted very long. The therapist did not appreciate that Peter was simply so exhausted by coping with OCD that he couldn't muster the strength of mind to confront it. I know many people are helped by CBT, but at this stage in Peter's life it was not the right thing for him.
Crucial to our survival as people and as a family is to have hope of some kind, but with OCD we have found that the focus of our hope has kept changing, and generally becoming narrower and lower. We imagine what study Peter could do, then revise it; we imagine what travel he might want to do, then find it's not possible; we suggest employment opportunities, then realise that we're too optimistic. There is a constant need for hope, but a limited number of options to focus on. On bad days, when hope almost disappears I feel that I can't keep living. (I am also taking antidepressants.)
Peter's younger sister has also been very badly affected. She was often asked by him to help in the compulsions, and while she really wanted to respond positively, she knew from the psychiatrist that helping in the short term would not be helping in the long term and could entrench the compulsions. Peter's sister found this emotional battle very difficult and at one point she asked our GP for a course of antidepressants, which she has now stopped.
The situation at present is that Peter says he has no hope of winning against OCD, he feels he just has to learn to live with it. We feel however that Seroxat has had a positive impact; I cannot imagine how our family would still be together, or still be functioning at work or school if Peter wasn't taking it (and he would be very unwilling to stop taking it). Because of it the visible signs of OCD are now less obvious to us, allowing Peter the time and energy to take part in activities inside and outside the house. However, Peter is still struggling internally with the compulsions – we need to remain aware of this battle and somehow keep up our mental and emotional energy to support him and ourselves through the bad patches in the future.
3.4.3. Archie's father
Our son Archie was the light of our lives, he was growing normally, he was well behaved, intelligent and someone we were and still are very proud of. But from the age of about 5 or 6, it was clear that Archie was somehow different from other children, although at this time we had never heard of OCD.
From an early age he would ask challenging questions. All children ask ‘why’, but Archie wanted more detailed, more scientific answers and usually could not be fobbed off with a fairy-tale answer. At school he got by doing the minimum to get a good mark and generally school was easy for him. He had a clear sense of order and things to him would be in ‘black or white’, or right or wrong, with nothing in between.
When he was slightly older, if he appeared not to like something then there would be no compromise and he would only do things he did not like with great reluctance. It was not just a dislike, but an obsession. For instance, Archie would not like his hands to be dirty or sticky, and he would frequently wash his hands. This developed into a full-blown contamination obsession resulting in ritual hand washing to the point where his skin was in a dreadful state. Art classes therefore posed a ‘danger’ because he would get paint or clay on his hands. Football and sports were also a problem as this involved getting muddy and dirty. There were also other obsessions as yet unknown to us.
Archie became a target for ridicule and bullying. Pupils would spit at him and as soon as he got home he would strip off and have a long hot bath. Sadly Archie kept most of this to himself. Both the bullying and OCD affected his schoolwork, but despite this he did obtain some good exam results, if not as good as expected.
It was only when he was in his late teens and when Archie's obsessions had taken over and destroyed his life and ours that we first found out about OCD on a television programme. Had we known about OCD from the outset then maybe we could have done something to help him cope with it. Sadly, despite many trips to our GP both before and after the TV programme Archie was not diagnosed at this time. The only ‘advice’ we got from the GP was that he would get over it and that it was a teenager thing. All he did was to prescribe some hand cream for Archie's skin problem and then only in hopelessly small quantities. The GP would not even consider referring Archie to someone who might be able to recognise an underlying cause for his obsessions and do something about it. We had taken Archie to the GP on numerous occasions between the ages of 14 and 17 where he had ample opportunity to make a diagnosis or at least try to do something. We foolishly trusted the GP and accepted his advice, something we will regret to our dying days, but it was only after talking to the GP about Archie after he had left home some years later at the age of 22 and had been formally diagnosed (by another GP), that the GP admitted that he had never heard of OCD.
After leaving school Archie started a course in computer science at college, something he excelled in. However, Archie's rituals and contamination fears worsened and often he could not get to college on time for lectures or exams. It took him all day to get out of the house, showering until long after all of the hot water had gone and rituals were completed uninterrupted. Also there were problems leaving the house as this involved touching door handles and so on that were contaminated nor would he go out of the door if there was anyone outside that might see him. In addition there was his constant striving for perfection that meant he was never satisfied with his work so it was never finished or not handed in on time, although the work was of a much higher standard than required. The result was that he never finished the course although he continued to go to the college to unofficially use the facilities and for somewhere to go to get out of the house and to avoid us, his parents, because some of his obsessions and ‘bad thoughts’ were about us.
It was during the ‘unofficial’ time at college when Archie was finally diagnosed as having OCD (although we did not know about this at the time). With the help of a friend he went to a new GP and Prozac was prescribed. So at last, years after we had recognised that there was a problem, something could be done, or so we thought.
However, we now entered a very difficult period, which we describe as a ‘living bereavement’, when we lost our son to OCD. The most destructive and distressing factor was that Archie considered us to be dirty and contaminated. The effect on our relationship with him was unbearable although still we sought an answer. A major blow came when he left home because of his obsessions about us. He tried to cut all links with us although we realised that it was not what he wanted0 – it was what his OCD told him he wanted.
Archie made rules about our relationship with him, some of which were that we were not to contact him, go anywhere near where he lived or ask him questions about his condition. The rules were all very one-way and on his terms, but we feared what would happen if we broke the rules. We did not know what was happening to him or how he was coping. Worst of all was the thought that he may commit suicide (something that we now know he was seriously considering). But with no income he was still dependant on us financially, so a very difficult link was maintained under considerable duress via the occasional phone call from him using a disguised voice to protect him from his obsessions surrounding us and, we think, to protect us from his harmful thoughts.
Archie had some very bad experiences, including his flat being flooded during the floods of Easter 1998. Archie has an obsession about faeces and to find his home full of raw sewage must have been unbelievably traumatic. Because of my job at the time I was the person with overall responsibility for the management of rescue, recovery and restoration of the affected area. In Archie's mind I was contaminated and he had to avoid me. He would make the lengthiest, time-consuming detours to miss routes or places my wife or I might use. In the end he left the area altogether and moved to another town. Because of the move and the difficulties the local authority and all local services were experiencing due to the flood, all contact was lost between Archie and the health and social services.
After several months Archie moved back to the town and contact with the social services was initially restored, but they were still overstretched and limited resources could be devoted to him. Because he no longer had contact with the health services he had no medication. He was living in absolute squalor because he would not throw household rubbish away and it accumulated in the flat where it smelled and was a cause for complaint from his neighbours. But worse still because of his obsession about faeces he would defecate into a plastic bag, which would also be kept in the flat (part of his obsession involved reserving the lavatory for urinating, not for disposing of faeces). Some of his neighbours perceived him to be ‘abnormal’ or ‘mad’ and ridiculed him; some were aggressive and subjected him to verbal abuse, threats of violence and carried out acts of vandalism such as breaking windows, throwing eggs at his door and putting dirt and dog faeces through his letter box. Because of this Archie would not respond to callers or letters, and tended to sleep during the day. He also incurred considerable debts. He had no income and his OCD dictated a very extravagant lifestyle. For example, underwear could not be washed because he considered it to be contaminated, so it had to be discarded and new undergarments worn every day. He also faced eviction.
These circumstances combined with the chronic situation at social services again resulted in a complete loss of contact with services. We thought at the time, and have since been proved right, that he was becoming suicidal. At this point I went to the social services, although this was against his ‘rules’. Fortunately they were sympathetic and took action. Archie was allocated a GP and seen by a psychiatrist. His medication was restarted and he was given limited practical help, although no psychological treatment was offered. The assessment was that he was not ready for a therapy such as CBT. That judgement was probably correct at the time. (However, that was in 1998 and I doubt if any further assessment has been carried out.)
There was no significant improvement over the next 4 years but Archie then developed pneumonia and was admitted to hospital and this forced him to allow social workers to make contact with us. This helped enormously with being able to communicate with him and opened a communication channel with his social worker. From then on communication and most importantly his trust in us improved. We found out that his most pressing worry was the substantial debt he had built up. Fortunately we were able to reduce the debt to a manageable level and build the trust between us by ‘obeying’ his new rules.
This situation however was most frustrating and heartbreaking. We knew that we could do so much to help if only he would allow us to. But if we did this, other than pander to his demands, would it trigger an adverse response leading to his situation deteriorating or even worse? However, we thought it was the only way to proceed and the only way that we could show him that we put his well-being first and to show him that he could trust us to do what was best, or under the restrictions imposed, what we thought would be best for him.
Over time trust did improve and we were able to talk openly and honestly with him about his situation. Gradually we got our son back, that is, he no longer tried to separate and distance himself from us and now we have a good, open parents/son relationship, something we have missed for many years.
There have been other small improvements more due to his own efforts than those of the medical services. He is still on medication and sees a psychiatrist periodically but sessions usually start with the psychiatrist saying that he would like to spend longer with Archie but he is running late so only has a few minutes, which is of no value. There is no suggestion of any further treatment or other sort of action or ways to progress. I have attended the last two sessions and have suggested various treatments or options be considered but this was met with a rather contemptuous attitude by the psychiatrist.
Archie is 30 now, is still unable to work and has a very restricted life. However, we recently went out together for a meal to celebrate his birthday, something a short while ago we thought would be impossible. We are loving parents, supporting him the best we can, and have been able to improve the quality of his life recently although there is far more to do. We cannot become complacent because if we do we feel that he will become comfortable with his OCD and the restrictions it places on him.
If only Archie had been diagnosed when we first went to the GP. If only the GP was aware of OCD and had referred him to a specialist. If only the GP had done something then maybe Archie's life would have been so much better and we would not have suffered so much distress.
Having a family member with OCD has been a dreadful experience and it continues to have a severe and detrimental effect on our lives and health. We have encountered so much ignorance and lack of awareness amongst professionals and society as a whole that it has depressed us. We have suffered more than can be expressed in a few words, although that is so little compared with the torment sufferers endure – Archie has missed the normal life of a teenager and of a young man due to OCD.
3.4.4. Graham's wife
My husband's OCD shows itself particularly in extreme compulsive hoarding. Graham is 63 years old and in many ways is a wonderful husband – loyal, honest, conscientious and hard working – but he does not really acknowledge the problem either for himself or for the effect it has on me.
We were married in 1975, when Graham was 34 years old. He had been living with his parents in quite a cluttered house, and his mother tended to keep things like yoghurt pots and carrier bags. She was one of the Second World War generation and had the attitude that these things ‘might come in useful one day and nothing should be wasted’. Although this was not the way I had been brought up, I did not at that time consider the situation to be particularly abnormal. After we were married I had begun to notice that Graham would also not discard empty packaging, tins and so on, or allow me to get rid of them. Odd bits of wood and other items began to pile up on the landing of our house, causing a fire hazard. He would also keep old newspapers, junk mail, and old letters and cards. By 1982, I was concerned enough about Graham's hoarding tendencies to write a letter to our GP at the time. The matter was never pursued.
When we moved house in 1985 everything came with us ‘to be sorted when we get there’. Very little has, but a lot more has been added over the years. I have a constant battle to try and get Graham to dispose of anything. Our parents and an aunt have all died and left complete households for us to clear. Graham will not even let me throw away anything belonging to my own family. According to him, everything is supposed to be sold and the proceeds shared with other family members, but there are many items that are of no value. We live in a cluttered, chaotic junkyard – several rooms in our very large house are completely inaccessible and have been for many years. He cannot find anything when he needs it and can become angry if he finds that I have moved or disposed of something. Maintenance is often impossible because the problems are inaccessible. Often, he will not trust anybody to do the work. He has to do it himself to ensure that it is up to his standard. He is such a perfectionist that things are achieved at a painfully slow speed, or not at all. If he does start on a job, he will focus on it to the exclusion of everything else, so other things get out of control.
In 1989, our younger son was referred to the child and family clinic because of his difficult behaviour at school. One of the three psychiatrists whom we saw in the course of that year about my son's behaviour told me that Graham was suffering from OCD. There was no further explanation, and nothing was said to him. No further reference was made to it, and there was no suggestion that it should be followed up. I appealed for help from our GP several times over the years, but I was told that nothing could be done unless my husband himself requested help, and Graham didn't think that he needed help at this time and has never acknowledged the need for help. He felt that I was the one who needed help.
During this time I felt that any needs I might have were neither considered nor understood until it was too late. I often felt desperate, helpless and depressed about the situation at home. I was ashamed and embarrassed if anyone had to come into the house, and my social life was also affected. I hated living like this and I broke down completely in 2000. Then all my GP could suggest was for me to take antidepressants, which I refused to do on the grounds that it would not go any way towards solving the underlying problems. Following a visit to an occupational psychologist, I had to ask to be referred to a psychiatrist for myself. I had not been made aware of what services were available, or offered any other help. One psychiatrist whom I saw said that I could not have further treatment as it was my husband who needed help. She said that she would phone my GP that evening, so I made an appointment for a few days later, and wrote to my GP to explain why. I told my husband that if he did not come with me, I would have to leave him. He did come, but the psychiatrist had not contacted the GP. She only realised what was happening because of my letter. That was how my husband was referred to a psychologist.
My husband was then referred to a trainee clinical psychologist in 2002, who diagnosed OCD, and clearly explained the reasons for the diagnosis in understandable terms. Graham was seen at home, which I thought was very helpful, and I was invited to join in with the sessions. The psychologist worked in practical terms, setting targets for each visit. We labelled everything in a certain area with ‘Keep (if so, where?)’, ‘Sort (for a specific reason)’ or ‘Discard (if so, how and where?)’. She drew up a written contract in which we agreed to work together towards the targets, and which we all signed. The psychologist followed up the progress at each visit. She was very helpful, and Graham had begun to make progress, but when her training placement finished, her supervisor took over. Progress has now more or less ceased. It seems to me that this psychologist has not followed the same practice as his student, has ignored the contract and does not work in the same systematic way on the practical issues. He has not really managed to build any sort of rapport, and seems to have almost given up the attempt. He gives the impression of being extremely frustrated with Graham and spends a lot of time talking to him about ‘normal people’. I told him that Graham neither knows nor cares what ‘normal people’ do, and he acknowledged that that was probably true. He is supposed to be liaising with my psychologist, but I do not believe that this happens with any regularity.
When my own psychiatrist retired, communication broke down regarding my treatment, and it took a letter to my MP to get the matter resolved. I was eventually referred to a psychologist, but she sees me alone at the clinic, and displays very little understanding of the issues involved. She has never met Graham, nor seen the situation at home. She has told me that the situation will not change, and I have to learn to live with it. She has also told me that American ‘experts’ on hoarding now say that the recognised treatments do not work. I find this thoroughly unhelpful, depressing and untrue. I have learned from my own experience and experiments that it is possible to change the situation gradually; and even the tiniest step is helpful in keeping away my depression.
Because I felt so let down by the NHS, Graham and I are now having private psychological treatment with a GP who is understanding and supportive. We have separate appointments on alternate weeks. It is costing us a fortune, but, from my point of view, is worth every penny – I feel as if I am gaining more control over the situation. It is also helping me to understand my husband's thought processes, so that I can see things from his point of view, and try to respond accordingly. I feel that this has also had an effect on my husband's behaviour.
I am learning to take control of my own emotional states, thus forestalling depressive episodes, and am now more aware of the possibility of learning from experience, and trying new strategies, instead of feeling defeated. This gives me hope for the future.
3.5. UNDERSTANDING THE IMPACT OF OCD ON FAMILY MEMBERS AND CARERS
3.5.1. The role of family members and carers
The time consuming and disruptive rituals resulting from OCD can affect a patient's whole family and individual relationships and can cause stress, frustration, anxiety, and anger in family members and carers. Many carers and family members often rebuke themselves for not having noticed the symptoms of OCD in their relative or friend before it is established. But it is quite common for people with OCD to hide their rituals and obsessions from the family, partly because of the embarrassment of carrying out apparently bizarre acts. Some people with OCD might deny that there is anything wrong if asked about their rituals or compulsions. In some other families, a family member may realise that something is wrong and seek explanation for it in their local library or on the Internet and in this way ‘diagnose’ the condition. The family member may encourage the sufferer to seek help, although some sufferers may not accept that there is a problem.
People with OCD may also actively ‘involve’ the carer/family member in his or her rituals and avoidance behaviour, sometimes surreptitiously. Carers and family members may become involved because of the distress and interference in activities, but compliance with this can ‘entrench’ the rituals or compulsions still further. Even when they are aware that involvement may be making things worse, carers and family members might feel that submitting to the patient's wishes is the only option. This can be frustrating for carers who feel that they have no other means of ‘helping’. Others might go along with the rituals and compulsions in order to ‘keep the peace’. The rituals can severely restrict and disrupt the lives of family members who might have to engage in, for instance, decontamination activities, leading to extra work in the home and/or extra expense incurred as a result of the ritual. Some family members can become the focus for the obsessive thoughts, which can be enormously upsetting. Others may try to ignore the condition because they do not understand it or think it will go away, while some may find OCD easier to understand if it is seen as a physical illness instead of a mental illness.
Whatever the circumstances however, family members and carers are inevitably drawn into the illness and the resulting environment. Many will want to help in whatever way they can and be included where appropriate in the treatment process. Indeed, people with OCD are likely to benefit from having a supporter who understands the condition and helps the person confront their fears, and who can continue to offer support after treatment to help maintain any improvements achieved. This might be a family member, but in cases where this is not appropriate a friend may be more suitable (occasionally, some people with OCD may lead such isolated lives that there is no one who can help).
In order to participate in the patient's care and the treatment process, family members and carers should be given full and ongoing information (where confidentiality permits) about how best to support the person with OCD and to cope with the condition (see Section 3.5.2). Where appropriate, it may be helpful if they can be part of any decision making process.
Inclusion in the care and treatment process should take into account the carers' circumstances and environment to ensure that an undue burden is not placed on them. It is important to achieve a proper balance between sensitivity to the patient's concerns and avoiding compliance or involvement with the obsessive fears and compulsions. Attention should also be paid to additional problems affecting family members that the patient may not acknowledge.
Carers can feel as lonely and cut off as the person with OCD. This can be exacerbated by the stigma associated with mental health problems, especially where there is an unwillingness to talk about such problems with family members and others. Carers may themselves need support from the professional services including their GP and practice counsellors as a result of stress, anxiety and frustration of living with someone with OCD and providing long-term care. In very severe cases, some carers of patients with long-term OCD, particularly older and lone carers, may need respite care.
3.5.2. Information for carers
Carers and family members should be provided with clear information from healthcare professionals about OCD in a way that they can readily understand and so that they can provide care in the best way.
Carers have requested that the following type of information is made available:
3.5.3. Summary of carer needs
- Respect, understanding and sensitivity from all healthcare professionals, public sector services including educational establishments, local authorities, police and emergency services for people with OCD and their families and carers
- Recognition that OCD can be severe and can have a devastating effect on the lives of family members and carers
- Adequate information about the nature, course and treatment of OCD
- Information and advice about how not to become involved in a family member's rituals and compulsions
- Carers and family members may need support and treatment for anxiety and depression
- Information about support groups and voluntary organisations.
3.6. SPECIFIC ISSUES FOR CHILDREN AND FAMILIES
There is little evidence that life-events cause OCD, but in the individual vulnerable to the condition, times of life-stress may be when symptoms worsen or relapses occur. In childhood this can particularly be around events that affect the family, school transitions, examination times or during difficulties with friendships or other relationships. Children experiencing learning problems, which have perhaps been undetected or where their needs have not been adequately met, may be vulnerable to exacerbations of OCD.
The transition from adolescence to adult life, with increasing independent living demands, can be an especially challenging time, particularly for the anxious individual. Young people with OCD have often been more than usually dependent on their parents, more cautious about exploring new experiences out of the home or with friends, or may have particular symptoms that make aspects of life difficult (for example, sharing a rented house/bathroom).
In the UK, mental health services for young people usually stop at age 16 or 18, and transfer occurs to general adult mental health services. For the young person with OCD, who is at a vulnerable stage of their development, continuity of services at this stage is essential. Child and adolescent mental health services should endeavour to link with the appropriate adult service well before discharge from child services needs to occur, to enable the young person to meet the new team, have joint appointments if necessary and so on.
Whatever the age of the person with OCD, clinicians working with the patient need to give time and attention to family members and carers. The younger the child, the more responsibility and decision making will rest with the adults, but even in young children, the child needs to feel involved in the treatment, able to express preferences and to take charge of aspects of their therapy. Young people need to develop autonomy and so for older children and teenagers, the therapist should assess sensitively and collaboratively the degree to which parents need to be involved and negotiating at each stage what information to share. Parents can be invaluable in ensuring therapy is successful, and indeed involvement is essential when they are closely involved in their child's rituals.
Many parents feel guilty about their child having OCD, and therapists need to take active steps to remove any sense of blame the parent might hold. It can be helpful for parents to understand that parents do not cause OCD but can inadvertently become involved in OCD. Most important, they need to understand that that they can be very helpful in the recovery process, and in maintaining good mental health in the future.
Parents of children with OCD can sometimes be anxious themselves, perhaps because of their own nature, but also because their child is distressed, has difficulty coping in important life areas, or has changed markedly. The issues raised by parental anxiety need to be understood by therapists and dealt with sensitively and actively. Treatment for OCD always involves understanding anxiety, and often helping the child confront and deal with anxiety, rather than ritualising or ‘running away’. The anxious parent may find it very challenging to help their child learn to deal with anxiety in this way, and may need help themselves to learn effective strategies.
3.7. SOURCES OF USER AND CARER ADVICE
In addition to professional healthcare services, users and carers may consider the other following sources of information. It is important that users and carers remain aware that the quality of information can be variable, and it may be important to rely on several rather than single sources.
- Books and videos aimed at sufferers, which may include practical advice and guidance on self-help for dealing with different types of obsessions and compulsions. There are also books written by people with OCD and carers of people with OCD.
- National and local support groups and self-help groups.
- National and international charities. There are currently a number of charities supporting those with OCD and other anxiety-related conditions, details of which can be found on the Internet. Some of these have information especially for carers and family members. Membership of such charities may offer newsletters, details of self-help groups and practical advice on getting specialist treatment.
- Conferences aimed at people with OCD and carers.
3.8. CLINICAL PRACTICE RECOMMENDATIONS
- 3.8.1.1.
Treatment and care should take into account the individual needs and preferences of people with OCD or BDD. Patients should have the opportunity to make informed decisions about their care and treatment. Where patients do not have the capacity to make decisions, or children or young people are nor old enough to do so, healthcare professionals should follow the Department of Health guidelines (Reference guide to consent for examination or treatment [2001], available from www
.dh.gov.uk). [GPP] - 3.8.1.2.
Good communication between healthcare professionals and people with OCD or BDD is essential. Provision of information, treatment and care should be tailored to the needs of the individual, culturally appropriate, and provided in a form that is accessible to people who have additional needs, such as learning difficulties, physical or sensory disabilities, or limited competence in speaking or reading English. [GPP]
- 3.8.1.3.
Healthcare professionals should consider informing people with OCD or BDD and their family or carers about local self-help and support groups, and encourage them to participate in such groups where appropriate. [GPP]
- 3.8.1.4.
Because OCD and BDD often have an impact on families and carers, healthcare professionals should promote a collaborative approach with the person with OCD or BDD and their family or carers, wherever this is appropriate and possible. [GPP]
- 3.8.1.5.
In the treatment and care of people with OCD or BDD, family members or carers should be provided with good information (both verbal and written) about the disorder, its likely causes, its course and its treatment. [GPP]
- 3.8.1.6.
Assessment and treatment plans for people with OCD or BDD should, where appropriate, involve relevant family members or carers. In some cases, particularly with children and young people, when the symptoms of OCD or BDD interfere with academic or workplace performance, it may be appropriate to liaise with professionals from these organisations. Assessment should include the impact of rituals and compulsions on others (in particular on dependent children) and the degree to which carers are involved in supporting or carrying out behaviours related to the disorder. [GPP]
- 3.8.1.7.
If dependent children are considered to be at risk of emotional, social or mental health problems as a result of the behaviour of a parent with OCD or BDD and/or the child's involvement in related activity, independent assessment of the child should be requested. If this is carried out, the parent should be kept informed at every stage of the assessment. [GPP]
- 3.8.1.8.
In the treatment of people with OCD or BDD, especially when the disorder is moderate to severe or chronic, an assessment of their carer's social, occupational and mental health needs should be offered. [GPP]
Footnotes
- 1
These points were identified in a survey of carers of people with OCD conducted by Cliff Snelling, the representative for carers on the GDG. The survey can be found at www
.ocdaction.org.uk.
- PERSONAL TESTIMONIES FROM PEOPLE WITH OCD AND BDD
- THE PERSPECTIVE OF PEOPLE WITH OCD AND BDD
- SUMMARY OF THE NEEDS OF PEOPLE WITH OCD AND BDD
- PERSONAL TESTIMONIES FROM FAMILY MEMBERS/CARERS OF PEOPLE WITH OCD
- UNDERSTANDING THE IMPACT OF OCD ON FAMILY MEMBERS AND CARERS
- SPECIFIC ISSUES FOR CHILDREN AND FAMILIES
- SOURCES OF USER AND CARER ADVICE
- CLINICAL PRACTICE RECOMMENDATIONS
- Obsessive-compulsive disorder: Evidence Update September 2013: A summary of selected new evidence relevant to NICE clinical guideline 31 'Obsessive-compulsive disorder: core interventions in the treatment of obsessive-compulsive disorder and body dysmorphic disorder' (2005)
- 2019 surveillance of obsessive-compulsive disorder and body dysmorphic disorder: treatment (NICE guideline CG31)
- THE EXPERIENCE OF PEOPLE WITH OCD AND BDD AND THEIR FAMILIES AND CARERS - Obsess...THE EXPERIENCE OF PEOPLE WITH OCD AND BDD AND THEIR FAMILIES AND CARERS - Obsessive-Compulsive Disorder
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