Rachel’s Story

My house is not immaculately tidy and I only wash my hands a few times a day; my clothes are crammed into drawers and the baked beans are never in the same place in my kitchen cupboard. Is this why I lived with the nightmare that is obsessive compulsive disorder for several years before a diagnosis was finally made? Is it because I do not match the stereotypical ideas of how an OCD sufferer behaves? I have OCD, and yet I do not carry out external rituals that draw attention to my disorder: everything takes place in my head, where the ‘ voice’ of this mentally incapacitating illness cannot be heard by others, and where rituals cannot be seen.

OCD manifests itself in many different ways; my symptoms are not uncommon and yet even members of the medical profession failed to recognise them during those early years, They call OCD the ‘secret illness’, and a lack of diagnosis is common to many people. In my opinion, the reason for this is shared between gaps in understanding and the shame felt by people who are too afraid to reveal the extent of their symptoms. The unwanted thoughts and rituals associated with this disorder are often accompanied by feelings of guilt, whereby those afflicted will blame and punish themselves for its existence. When I look back at my childhood it is apparent that the traits were already there; my father, a very strict clergyman who died when I was 16, encouraged them, although not deliberately. He provided the content with his sermons about the consequences of sin, and everything in our lives had a time and a place; we lived in a world where spontaneity was discouraged and perfection was actively sought. My personal belief is that I was born with an inherent predisposition to OCD, with life experiences providing the catalyst. By the time my first child was born I believed that God would take her away from me because I was so full of sin. This is where the main part of my OCD story begins.

It is impossible to describe the unique love a parent feels for a child. I felt that love, and yet within weeks of her birth there were times when I could not bear to touch my daughter, and I screamed for her to be taken away. My behaviour was described as rejection, but that description was wrong: it was the behaviour of somebody who felt so undeserving that they were too afraid to embrace their maternal feelings. I do not know which came first, the anxiety that led to the OCD or the clinical depression; I think perhaps they came to me hand in hand. At first I just feared that God would take my daughter away, but then ‘magical thinking’ – one of OCD’s most powerful weapons – came along, and I believed that I had the power to bring about her death with my thoughts. In the early hours of each morning, I would wake abruptly from my drug-induced sleep with the same repetitive, unwanted thoughts in my head. I believed that I could save her if I could make the ruminations go away, but they would not budge – in the same way that a pink elephant will come into your mind if you try not to think about one – and so I tried to replace them by repeating prayers over and over again. Sleep would not return after such a sudden wakening, and so I would wait, panic- stricken, to be told by my mother (who was caring for her at night) that my child had died.

These were my ‘groundhog’ days and nights when OCD began its vicious circle. It was at a time when psychiatric hospitals would only take mother and baby together, and the local specialist unit was mostly occupied by women suffering from puerperal psychosis. My husband feared for the safety of his new offspring in a world inhabited by people who had completely lost touch with reality, and he did not want us to go. On reflection I believe that I should have been admitted alone, but the word ‘bonding’ came into every consultation at a time when I most needed rest. My children are now adults and we have an unbreakable bond.

When I look back at my life, many events have been forgotten, and yet I can glance at almost any photograph and recall the subject matter of the current obsession. Without help, OCD sufferers will inadvertently feed their illness and create an environment in which it can thrive. During those early days I would read about sin – even thumbing through the pages of my mother’s old edition of the Encylopaedia Brittanica – in and attempt to find comforting words; I would also pray obsessively and attend church regularly, even though I believed that my sins would never be forgiven. The concept of hell felt so real that anxiety consumed me and my heart would not stop thumping me from inside. It is hard to describe the fear that severe depression and OCD bring, but imagine waking in the night to find a ghostly figure standing at the end of your bed and then being unable to stop the reactions that are taking place in your body. As always, I tried to replace the thoughts, but if you are as afraid of thinking blasphemous thoughts as I was, one will arrive in your head with the same velocity as the pink elephant.

At that point I could not divulge the contents of my mind to anyone, and the more importance I placed upon the unimportant, the more my OCD gained momentum. I took an overdose two years on from the birth of my daughter, not because I wanted to die – I was too afraid of that – but because I wanted to experience oblivion. I had broken one of the Ten Commandments: nothing juicy, I just believed that I had inadvertently worshipped a false god by trying to learn transcendental meditation in a room in which a picture of a prophet was displayed. It was a significant overdose, which required medical intervention, and although I experienced temporary oblivion, it was not worth it. In our local hospital nurses judged me to the extent that some would not speak to me, the mother of a small child, and the mental torment was so great that I vowed never to repeat the experience.

I did, however, continue to feed my obsession in my attempt to find comfort, and it was at this point that I discovered the concept of an unforgivable sin. It is hard for me to write this, because I am now acutely aware of the distress caused to my family, and I deeply regret my actions, but I was too mentally unwell at the time to make logical decisions. I do not believe that we have the right to judge each other, or that a rational mind can understand the dilemmas of a mind that is overwhelmed by the pain of mental illness.

If you had watched the birth of my second child, almost four years on from a traumatic first experience and the onset of my illness, you would have witnessed a seemingly perfect birth, but all was not as it seemed. As my new daughter was placed in my arms, I tried with all my might to exclude any obsessive thoughts, but they flooded into my mind with great determination and malice; OCD shows no mercy, and particularly loves to destroy the special times. I had been displaying (or should that be hiding?) classic symptoms of OCD, and even though I did not share the specific nature of my fears, I had described those symptoms to professionals on many occasions. I believed that even family members and loved ones would reject me if they could read my mind, and my fear of thinking blasphemous thoughts took over my life as I tried to explain to God that I didn’t mean to think them. The type of expletives that some people use in everyday life would taunt my mind, and I felt unclean, but the more I tried to stop them the more they came. It is hard to describe how OCD feels, but I liken it to a chapter in Alice in Wonderland, where Alice is in the White Rabbit’s house and has grown so big that she fills the room; the thoughts grow and grow until they seem to occupy an entire mind, pressing against the inside of your head until it hurts and the depression is all-consuming.

Not all my obsessions have been of a religious nature, although these are the ones I fear the most. The sound of a dog barking can fill my head, even when it is silent, and I once became so preoccupied by an unaligned steering wheel that I could think of nothing else for the duration of a holiday; the much used scratched record analogy is very befitting. Some obsessions are part of me (for example, I have mentally calculated my daily calorie intake several times a day since I was a teenager) and they do not cause distress, so I leave them alone. I do not believe that we should or can confront everything, only those obsessions that have an unacceptably negative impact on our lives or lead us to avoid situations. Avoiding staying in hotel rooms for a large part of my life because of my fear of the Bible only intensified that fear and led to further avoidance and anxiety; this could only be reduced by exposure therapy.

There have been many times in my life when others have mistaken my rational thoughts for irrational ones; as hard as it is to comprehend, people with OCD tend to know when they are being irrational and have a good understanding of what is real. This is something I will never be able to comprehend fully or explain, but it was highlighted when a stalker came into my life and did not leave for five years. He was a neighbour with learning difficulties, and while I understood that he was not a threat, I could not bear being constantly followed and watched. My reactions were extreme, and obsessive thoughts and behaviours took over, but on this occasion my history of OCD meant that others found it hard to differentiate between obsessive and ‘normal’ fears.

Within a year I had been hospitalised and was receiving drug treatment and electroconvulsive therapy. Shortly after I had been discharged, I suffered a drug-induced seizure in the middle of the night. Having been unconscious for 20 minutes, I woke up feeling confused and frightened, and yet I still looked at the neighbour’s window in my ritualistic way, and thought of nothing else but him as I was taken into the ambulance. Such is the power of obsessive thoughts that not even this, or the birth of my child or being at my mother’s deathbed, could stop them.

The story I have told you so far provides a lesson in how not to deal with OCD. Four years after this incapacitating disorder took over my life, I was fortunate to see a psychologist with a special interest in OCD; he guided me in the right direction. He was horrified when I first told him my thoughts, and ejected me from the room saying that I was evil and beyond help; I could see in his eyes that I disgusted him. Of course, that is not what really happened – that is what my obsessive mind told me would happen. In reality I saw the corners of his mouth move towards a smile as I voiced my unwanted thoughts (expletives and all), and his eyes told me that he had heard it all a thousand times before. The psychologist had begun the long task of desensitising my thoughts through exposure therapy.

The first time I said my most feared phrase, he let me put it into context by saying, ‘This is an unwanted thought’ (in case God did not realise). This is called ‘safety behaviour’ – the equivalent of crossing your fingers behind your back – and I was to use it and get away with it many years later in a group session with a far less experienced therapist. The second time, he told me to put my words in context after saying them, but then he stopped me from doing so. Fear shot through me at that moment, but OCD cannot be conquered without putting yourself in the situations you fear most, and I have been in all of them. If fear is in your path you must walk through it, not round it, to achieve your goals. For me it was not just a case of saying the thoughts out loud once, I had to repeat them over and over again, and even record them so that I could play them back to myself.

My illness did not go away – I will always have an obsessive mind, and that can also bring gifts – but cognitive behavioural therapy unlocked some of the doors where the thoughts and fears had been trapped, and my life began to change. Sadly, two years after my first course of CBT I was back at the hospital and it was at this time that electroconvulsive therapy was seen as the best course of treatment for my anxiety and depression. SSRI medications were yet to be made available, but now, more than two decades later, I am fully aware of their importance. I went without medication for 15 years following the seizure, and lived with a deep-seated fear of taking antidepressants, but now they work alongside CBT and I lead a far more fulfilling life, where I can express my creativity.

It was a further bout of severe depression and OCD in 2007 that took me back along the road to a specialist unit in north London, but this time I emerged with more understanding and sufficient strength to make significant changes to my life; I finally took responsibility for my own life and learned to stop the constant requests for reassurance on which OCD feeds. I could not have done this without the help of my psychologist, who has played a leading role in the story of my life since I first met him in 1989, or without the aid of the SSRI fluoxetine. I am not cured, because you cannot cure a personality, but I now face my fears, share my experiences and use my obsessive mind to feed my creativity. It was the concept of ‘action before motivation’ that helped me on my way. There are many theories as to the causes of OCD, some
of which have been backed up by the results of brain scans, but I feel certain that a hormonal imbalance has played a major part in my story.

Depression and OCD destroy motivation and often lead to inactivity and a constant need to seek reassurance. It is important to break the cycle, and this is why the concept of ‘action before motivation’ remains an important part of my life, and why I have had to learn not to feed my OCD with endless requests for reassurance. It is the abnormal demands to which I am referring: questions like, ‘I’m not a bad person, am I?’ or, ‘I won’t go to hell, will I?’ If a person’s OCD takes the form of body dysmorphia there is no point in telling that person that they are attractive, because they will not believe you, or the other hundred people who have told them. On the contrary, OCD thrives on the reassurances of others, because they discourage the sufferer from seeking the strength we all have within us. As with safety behaviours, I became an expert in tricking people into providing me with reassurances; even after those around me had been instructed not to respond to my persistent requests, I was devious and managed to extract them.

Action, in my case, involved regular exercise and the pursuit of my creative hobbies when my mind was trying to persuade my body to lie on the bed and wallow; the former is difficult when energy has been depleted through a lack of sleep, but I persisted. At the hospital, each day would begin with a behavioural activation session, during which we would all agree on our targets for the day. As always, my camera played a major part in this, and I would often make a pledge to take photographs in the park during the lunchtimes, even though the desire was missing. It was on one such occasion that I met my friend, the kestrel, which seemed unafraid of me and posed beautifully on a tree that was covered in dark red leaves. He seemed to absorb my OCD for a few short minutes, but in time and with a great deal of perseverance, minutes can turn to hours.

I have met many OCD sufferers during my long association with the hospital and I have liked them all. The vast majority have been gentle, caring and compassionate, with an overdeveloped conscience and a desire to make the world a better place. I would not put myself in that category, but others do. Like me, many of them have been the victims of faulty thinking, such as mind-reading, catastrophising and magical thinking; my mind-reading still leads me to imagine that others are thinking negative thoughts about me, but I have learned to accept this.

Sitting in a room full of people who are describing their obsessions and carrying out exposure therapy is a surreal experience; in your heart you know that nothing you or anyone else is saying makes sense, but all you can hear are the words of your OCD. Some people cannot bring themselves to touch anyone or anything and sit with fists clenched in front of their chests. They cannot open doors with their hands or touch their body or clothing, for fear of contamination. Believing that they will be responsible for the death of loved ones, I have heard hospitalised young women plead for visits from home to be cancelled. Many feel so unclean that no amount of washing can ever cleanse them. To be told to touch something, or not to wash their hands (with taps in some cases turned on by elbows), can cause terrifying anxiety. But like all of us whose lives have been blighted by this disorder, they can only work towards recovery if they face their fears head on, and learn not to
be afraid of fear itself.

The rituals associated with OCD are usually quite bizarre, but most people feel certain that bad things will happen if they fail to carry them out. To watch somebody being told not to act out a compulsion is by no means easy; it is difficult to witness the reactions of a young person who truly believes that his family have just been killed in a car crash, because he has not followed an uninvited thought with an action, such as banging a table with his knees. I have met some for whom external rituals occupy up to 20 hours a day, with lives dominated by compulsions such as counting, reciting, checking, perfecting, ordering, cleaning, touching, or not touching, as the case may be. Each person’s illness bears its own trademark, although there are usually common themes. Some people, like me, can function in the real world (most of the time) because the obsessions and rituals take place in their heads, but others cannot.

Exposure therapy is a vital component in the battle against OCD, but it does not bring the same immediate relief and satisfaction as exposure to the object of a phobia, because an obsessive compulsive fear is far more complex. When I, a serious arachnophobe, held a spider at the end of an exposure session at London Zoo, I experienced a degree of elation, because fear was the only item on the agenda and I had been able to eliminate a large amount of it. The battle against OCD is far slower, but it can be won and life can be rich and fulfilling. As for reasoning with an OCD mind, that does not come into the equation because rationality cannot begin to compete against irrationality. I feel as if these two areas of my mind are too far away from each other to interact, and yet, as I have expressed before, I can still hear the rational part. Is it any wonder that the World Health Organization lists OCD as one of the top ten most debilitating illnesses?

An overpowering fear of being judged and labelled has led to secrecy in my life. When I started writing a blog on my personal website (www.rachelpiper.me.uk), I was eager not to give anything away, but I slowly realised that I was doing nothing to help rid the world of stigmas by hiding my own illness. Writing openly about clinical depression and OCD has been a major exposure for me, but as with all exposures it has helped me move forward and I have become stronger. It has also helped others, for which I am thankful. I am so much more than my illness and I feel comforted by the fact that my website tells the bigger picture, with an insight into my creative mind and the way in which I use humour as a tool to get me through some of life’s difficult moments.

Humour in the treatment of mental illness can cause controversy: another OCD sufferer and I once got ‘told off’ at the hospital for laughing at our own afflictions. The therapist informed us that OCD ‘is not a laughing matter’, but I, and the more experienced professionals, do not agree. The psychologist who has treated me over the years will joke about some of the subjects of my obsessions, but he is laughing with me and he knows when he can use humour and with whom. I believe that the ‘O’ in OCD can be channelled creatively, and I do not believe that I would have achieved as much without this element of my personality. It is only in recent years that I have started sharing my creative output with the world; I would often feel too insecure to do so in the past and it could take me hours to prepare and mount a single piece of work. The perfectionist in me can be a ruthless quality controller.

Following my latest period of treatment, I set myself tasks that took me out of my comfort zone. I wanted to help change the world, so I looked at the skills I have got, rather than the ones I wished I had. One of my greatest challenges was prompted by the words in an email, which described life at the bottom of the economic pyramid and the work of the charity WaterAid. My initial feelings were of inadequacy, because like many people I wished that there was something I could do, and it felt as if the proverbial light bulb had illuminated above my head when I realised that there was. Sometimes we look too far away from ourselves when we think about what we have to offer, but at this point my creative mind took over and I decided that I would sell my photographs for the charity.

Putting yourself in the spotlight when you do not feel confident is not easy, but as with OCD fears, the more you do it the wider your comfort zone becomes. My desire to help others who suffer from OCD and depression has also been satisfied in this way; up until this point my thinking had been very narrow, but I realised that there were ways of helping other than offering direct counselling, and so I decided to have a sale at the hospital where I received treatment, and at the 2008 OCD Action Conference, to raise money for the latter. I work with charities because I want to, not because I am trying to prove to God or myself that I am a good person; this is very important.

I often photograph spiders these days, and I get as close as I can with my macro lens; when I see the results I am reminded that fear can be overcome. I draw with coloured pencils now, and I no longer say to myself, ‘I can’t draw’, because I can. If somebody admires my work I just say, ‘thank you’; I had to teach myself to do that, rather than point to a fault that nobody else had noticed. Our minds listen to the words we say, and negative words can feed low self-esteem. Creativity provides an outlet for my obsessive mind, and my perfectionist tendencies (annoying as they sometimes are) also play their part.

In my opinion, our journeys should not be about overcoming OCD, but about working towards finding acceptable levels and using everything we have inside us. I often encounter people who say that they haven’t got time or they don’t feel mentally prepared to embark upon something new, but I feel that ‘now’ is the best time to start; we can always find time, even if it means getting up an hour earlier or missing a soap opera on the television. Displaying my creative work was very difficult at first; I would spend hours preparing each piece and the fear of being judged incompetent or arrogant would often be a great hindrance. Those fears remain to a lesser extent, but I continue to show my art to the world, and I have been successful in international photographic competitions and in raising money for various charities.

Before I finish my story, I would like to introduce you to Oscar Charlie Delta. Oscar is the name I have given to the character that personifies my OCD; in illustrating Oscar I depicted him as a dark thought bubble with a mouth and eyes, but in reality he is just the sound of the negative inner voice over which I have no control. I have published the story of Oscar on my website (www.rachelpiper.me.uk/oscar-says), in which he is not just the character that infiltrates my mind, but the persecutor of every OCD sufferer. He represents the constant intrusive thoughts, urges and images that cannot be ignored, and the compulsions and rituals that those with OCD are driven to repeat to keep themselves and those around them safe.

I believe that all people who suffer from OCD have the strength within them to move forward and lead a fulfilling life. I live my life a day at a time and I believe that I am who I am at each point in my life. There is no point in mourning who I could have been or regretting the events of the past; confronting my fears has provided me with the strength to be who I am today, and my obsessive nature brings with it the gift of creativity. I still practise ‘action before motivation’ when I am feeling low, and if Oscar tries to torment me with his cruel words I write about the experience, rather than conceal it. There is nothing that cannot be shared, although it is important to share your thoughts with the right person: somebody who understands that the thoughts are only there because they are so abhorrent to you. Sitting among fellow OCD sufferers, I know that the man who is tormented by images of himself abusing his child could never do so, or that the woman who constantly imagines pushing a fellow passenger in front of a train is incapable of deliberate harm, but not everybody understands OCD.

A great deal has been written about SSRls, particularly on the internet, and in my opinion much of the information presented is neither factual nor helpful. I am glad that I listened to professional advice, as my perseverance during the initial period of bodily adjustment has led to greater fulfilment. SSRis are an important part of my life, and they are likely to remain so, but for me they are not the solution; I combine them with regular exercise, exposure therapy when required, the philosophy of action before motivation and the pursuit of many creative activities. When fear stands in my way I try to walk through it, because if I remain stationary or walk round it I know that I am handing power to Oscar. 

OCD is a misunderstood and incapacitating illness, but I am encouraged by the changes that I have witnessed since my story began. The emergence of new understanding and research, more effective medications and the development of more OCD-specific cognitive behaviour therapies have all helped in a battle which we will continue to fight. For many years I tried to find all the answers, but now I accept that sometimes there are none. I concentrate on what I know I believe, not what I think I should, and my fundamental beliefs are that we should look after our world and respect our fellow human beings and the creatures that inhabit it. A strict religious upbringing introduced me to the concept of sin at a very early age and the emergence of severe OCD heightened my inherited quest to seek perfection; I was looking for certainty, but to live with this illness we need to accept uncertainty. I admire and respect people who have faith, but I believe that children should feel safe and should not be exposed to fearful religious concepts.

To all those who suffer from OCD, please take comfort in the fact that you are not alone. Recovery is about teamwork. We need others in our quest, but ultimately we must draw strength from within and face our fears; we all have that strength.

From Coping with Obsessive Compulsive Disorder, Sheldon Press 2012
© Professor Kevin Gournay, Rachel Piper, Professor Paul Rogers
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