One of the most haunting images from my time as a junior doctor working in Hackney in the mid-1990s was in an A&E (emergency) department while we tried to resuscitate a man in his 40s. In the corner of the room stood two young children – probably about the same age mine are now, 6-8 years old. They stood and stared in silence, watching us trying to save their dad. He was covered in blood and bile, his body yellow with jaundice, veins visible on his abdomen and torso from advanced, alcoholic liver disease. His wife was in another part of the department, so intoxicated she couldn’t stand, barely conscious and unaware of what was happening to her husband and children. The children were eerily impassive. The ambulance crew told us that when they arrived at their flat, they were trying to wake their dad while their mum lay unconscious, snoring in the next room. The flat was squalid and the children were obviously severely neglected. By now they will be in their mid to late 20s, assuming they are still alive, possibly with kids of their own. I wonder what became of them.
A lot of my time in A&E in south east London was spent with young people, mostly women and girls who cut themselves or took overdoses. I absorbed the culture of my workplace – where they were usually treated as ‘timewasters’ and where ‘PD’ which stands for ‘Personality Disorder’ was a term of abuse. I quickly became aware that all of them had been abused (usually sexually) or neglected severely, but I struggled to find anyone who knew what we could do to help, and faced with our own helplessness we continued to patch them up, push them away, and complain about them wasting our time. I remember one night meeting a teenage girl who wanted treatment for sexually transmitted infections, she refused to be examined, protesting that it was too sore, too smelly and too embarrassing. She looked terrified. I was the only doctor in a busy department in the middle of the night – she slipped away before I had an opportunity to find out any more.
I rotated between junior doctor posts, driven by a mixture of curiosity and an inability to commit to a specialty at an early age. After A&E I worked as a junior surgeon and gynaecologist where I met dozens of patients (also mostly young women) whose enormous hospital records documented their repeated admissions, investigations and surgical procedures. We couldn’t explain their abdominal pain and bloating, pelvic pain and unexplained severe constipation or incontinence. Some of them also cut themselves, but mostly we examined the scars that criss-crossed their abdomens made by surgeons, looking for the source of their symptoms in the organs underneath.
I spent just 3 months working part-time in sexual health, barely long-enough to wonder why just a few young people (again, mostly women) accounted for such a high proportion of the visits.
As a young, naive paediatrician I saw kids with ADHD and other conduct disorders, many of whom had a dysfunctional home environment. Some were adopted, but we were strangely uncurious about what had happened to them before they were adopted. I met countless parents who were overwhelmingly anxious, who bought their children to hospital week in, week out. Some seemed to spend every Friday night in A&E. I focussed on the children and it hardly ever crossed my mind to think about what had happened in their own lives, or might still be happening, that rendered them so fearful.
I spent 6 months as a junior psychiatrist where I had a little more time to listen to patients, but many refused to talk for long to a doctor they had never met before and might never meet again. I struggled to find ways to find the information that mattered most to the patients I read their extensive discharge summaries but struggled to find out which events were the most significant in their lives. It was clear that mental ill health had a complex aetiology – which is to say that similar illness were clustered in families, were affected by experiences, and were worsened by deprivation, intoxication and isolation, most of which we had no ability to influence. For some people psychosis struck someone in the most stable of social circumstances, but for most it was chaos superimposed on chaos. We prescribed every new drug that came on the market, usually on the basis of the earliest trials and negligible evidence of benefit. The side effects – “They’ll make you fat and impotent!” one patient yelled across the ward as I tried to persuade another to try them, were more predictable than the benefits.
As time went on I realised that if I wanted to understand why people suffered from unexplained symptoms, chronic pain, anxiety, depression and psychosis I would need work somewhere where continuity of care was valued and protected.
For most of the last 17 years, I’ve been a GP working in Hackney in East London. We serve an increasingly economically diverse, but still very deprived, young, socio-culturally mixed group of patients.
A lot of what many people would consider to be ‘normal general practice’ – managing diabetes, hypertension, heart disease, minor illnesses and so on, is managed by practice nurses, specialist nurses, clinical pharmacists, GP trainees and salaried doctors. GPs like myself who have been around for long enough to develop therapeutic relationships with patients spend most of our time with patients who suffer from chronic pain, medically unexplained symptoms, addiction, eating disorders, severe obesity, self-harm, suicidal thoughts and mental health disorders; especially chronic anxiety, chronic depression, OCD, bipolar and personality disorders. Among them are our patients with the worst diabetic complications, the most symptomatic heart-failure, the most brittle asthma and out of control hypertension. They are the same patients who I met again and again as a junior doctor, who bewildered and frustrated me and my colleagues. They are still the patients who attend A&E most frequently and are most likely to fail to attend routine reviews. If they are not asking me to give them something for their chronic pain, debilitating anxiety and insomnia, for weight loss or breathlessness they need me to write reports for housing or benefits assessments. I, and thousands of doctors like me, spend every day caring for patients like this. One thing I have only very recently learned, is that Trauma is embodied.
What is extraordinary, and to be frank, a betrayal of patients and clinicians on the part of those responsible for medical education is that we never talked about, much less seriously taught about the lasting effects of trauma. We were taught that diseases were due to the interaction of human biology and the environment, but human experiences were barely part of the picture.
Julian Tudor Hart worked for over 40 years in the same practice in the Welsh Valleys and saw the same community after the mining industry closed down. Not only did unhealthy lifestyles and mental illnesses proliferate, but so did domestic violence and incest. Without meaning and purpose, for some people, morality collapsed.
For John Launer, GP educator and narrative medicine pioneer, medically unexplained symptoms are better understood as ‘medically unexplored stories’. Most GPs, especially those who work in deprived areas, bare witness every day to their patients’ accounts of trauma; including physical abuse and neglect; parents who were, because of alcoholism, drug abuse or mental illness unable to care for their own children in their earliest years; stories of material and emotional deprivation, abandonment and loss, domestic violence, crime and imprisonment and with shocking frequency, child abuse. Trauma begets trauma so that people rendered vulnerable by trauma in childhood are very frequently victims of violence and abuse in later life. Survivors of trauma use drugs and alcohol to cope with the aftermath, then find themselves involved with crime which leads to imprisonment and homelessness and further cycles of alienation and despair.
People whose work does not involved repeated encounters with survivors of trauma frequently either cannot believe, or refuse to believe how common it is. For years it’s been assumed that people invented stories of trauma to excuse bad behaviour. The medical profession bears a lot of responsibility for this, largely ignoring the psychological consequences of rape until the last 30 years.
In 1896, Freud presented the detailed case histories of 18 women with ‘hysteria’ – what might these days be labelled ‘Emotionally Unstable Personality disorder’. In every case the women described childhood sexual abuse. Freud thought that he had found the ‘Caput Nili’, the source, of hysteria, and presented his findings in anticipation of fame and possibly fortune. What he failed to anticipate was that the upper echelons of Viennese society were not prepared to accept that women with hysteria could be telling the truth and in so doing, implicating their own, privileged social circles. Freud was sent away to come up with another, more acceptable theory. His insights were buried and forgotten for most of the 20th century.
Ruby is imposing. She is six-foot-tall and one hundred and thirty kilogrammes. She rarely goes out, but when she does she dresses up – lots of gold jewellery – pink Doctor Martin boots, a huge, bright, African print dress and a gold, sequined stick. “Do you know how long it took me to get to know and trust my last doctor?” she has asked me, rhetorically, several times since we first met, about 10 years ago, after her last GP of 20 years left. “You know what I’m looking for in a doctor?” she asked, “Someone who looks comfortable when I’m sat in front of them”. How many times, I wondered, have patients looked to a doctor for help and empathy and seen fearfulness, frustration, confusion or worse; moral indignation or disgust. I know it happens. Dozens of studies have shown that the attitudes of professionals towards patients who are overweight, who self-harm, and who have personality disorders are at least as prejudiced as the non-medical public. I know I’ve done it before. But I think I’m more aware of it now, and I’m much better prepared to bear witness to trauma.
Ruby was sexually abused by her grandfather from the age of 6 to 9. When she told her mother, she didn’t believe her, her grandfather continued to visit and the abuse went on. When he stopped abusing Ruby, he started abusing her younger sister. Ruby started eating to protect herself – to smother her emotions, to make herself less attractive, to make herself more imposing and better able to defend herself. She fought at school all the time and was repeatedly excluded. She was never asked about abuse, but if she was, she would almost certainly have denied it. Happy kids don’t suddenly double in size and start fighting unless something terrible has happened. So many adults I look after who can recall the day when they suddenly stopped being a ‘normal child’.
In 1987, Vincent Felitti a doctor running a weight loss programme for severely obese adults in the US mistakenly asked a woman how much she weighed, instead of how old she was, when she had her first sexual experience. “Forty pounds”, she replied. “With my father”. He went on to interview nearly 300 other women attending the clinic and discovered that most of them had been sexually abused. He presented the findings to the American Obesity Association in 1990 and the response was almost the same as Freud had nearly 100 years before:
When he finished, one of the experts stood up and blasted him. “He told me I was naïve to believe my patients, that it was commonly understood by those more familiar with such matters that these patient statements were fabrications to provide a cover explanation for failed lives!”
We don’t like to talk about trauma because it’s very hard to accept that something so horrific should be so common, and the perpetrators, who are usually known, so normal. Most perpetrators of sexual violence, child abuse, domestic violence and rape, have no history of trauma of their own, and no evidence of mental illness. Coming to terms with this very uncomfortable fact means accepting that there is something very, very wrong with the way we are raising young men.
The doctors running the obesity clinic developed their line of questioning to include 10 categories of Adverse Childhood experiences listed below.
Not all categories are equally traumatising; the severity and duration of adverse experience is important in determining the extent of traumatic aftermath – the ‘trauma world’. 30-36% of people have no ACEs, but different-types of adversity go together, for example alcoholism, physical abuse and violent behaviour. The higher your ACE score the greater your risk of physical and mental ill-health and social disadvantage in the future. An ACE score of 4 or more increases the risk of heart disease 3-fold and Type 2 diabetes 4-fold. People with an ACE score of 4 or more are 6 times more likely to smoke and 14 times more likely to have experienced violence in the last 12 months. People with an ACE score of 6 or more have a life expectancy of 20 years less than those with a score of 0 because of illness, violence and suicide.
Clinicians should suspect trauma in people whose symptoms and behaviour are like those I’ve described, but we need to be careful not to blame every symptom on trauma. The embodiment of trauma causes lasting physical changes to the brain and body, which combined with self-destructive habits, hugely increases the risk of serious diseases. We must not forget about biology while we attend to biography. Multiple physical symptoms and associated hyper-vigilance can make it very hard for survivors and clinicians to recognise when symptoms are not a manifestation of trauma. Knowing which symptoms to investigate, and how far to go needs an experienced clinician, but often, because survivors are seen as ‘difficult’ they end up with the least experienced.
Just as most smokers don’t get cancer, most people who have experienced trauma seem to be remarkably resilient. The most important protective factor is the strength of your social relationships, especially a long-term relationship with an emotionally stable adult. The longer people are deprived of this, the harder it is for them to be resilient.
People who have experienced trauma, especially those who are impoverished, spend their lives being shunted from one crisis service to another, from temporary accommodation to emergency shelter, from one GP to the next. Just as they’ve begun to trust and confide in someone, they are uprooted and moved on. To make matters worse, doctors are taught to be afraid of dependency, to view it as ‘disempowering’ patients, and/ or as a symptom of their own unhealthy/unprofessional need for human connection. Some neglect continuity of care, others actively avoid it. For Arthur Frank, medical sociologist and anthropologist, ‘The structured disruption of continuity of relational care is more than an organisation problem; it is a moral failure of health care, deforming who patients and clinicians can be to and for each other’. In an age where independence and individual autonomy are moral virtues, it is shameful to admit that you need human connection.
Disconnection, Fearfulness and shame: The Trauma World
While the ACE studies show that trauma is associated with a wide spectrum of illness and adversity in later life, they fall short of explaining how or why this happens. The aftermath of trauma, for those who lack the good fortune to be sufficiently resilient, is a world of disconnection, fearfulness and shame, the ‘Trauma world’.
Disconnection / dissociation.
Many people who have survived childhood abuse describe how they could separate themselves, from the act by ‘an outer body experience’ –
“He’s inside me and it hurts. It’s a huge shock on every level. And I know that it’s not right. Can’t be right. So I leave my body, floating out of it and up to the ceiling where I watch myself until it becomes too much even from there, an then I fly out of the room, straight though the closed doors and off to safety. It was an inexplicably brilliant feeling. What kid doesn’t want to be able to fly? And it felt utterly real. I was, to all intents and purposes, quite literally flying. Weightless, detached, free. It happened every time and I didn’t ever question it. I just felt grateful for the reprieve, the experience, the free high”. James Rhodes, Instrumental.
Whilst children are quite adept at this and with practice can slip into states of disconnection quite quickly, it is harder for adults. The aftermath of trauma, the trauma world, often persists or may even manifest for the first time, years after the abuse has ended. Alcohol is one of the most potent and effective dissociating drugs. Addiction specialist Hanna Pickard describes, in a radio 4 interview, the occasion when she found herself in the back of an ambulance with a broken shoulder having been knocked off her bicycle in a crash that also involved her two young children. The effect of the morphine was to profoundly dissociate her from the pain in her shoulder. She understood then how if she had also been suffering the unbearable agony of her children dying in the accident, it would dissociated her from that pain as well. Sedative drugs prescribed to treat chronic pain and chronic anxiety – opiates, anti-epileptics, antidepressants and benzopdiazepines are almost entirely unselective – they even numb the pain of trauma, hopelessness and despair.
We can disconnect from memories and aspects of ourselves that we cannot bear or are afraid to acknowledge without drugs or alcohol. For some people, excessive work or exercise can achieve similar effects, especially when it involves pain and self-sacrifice and can even drive exceptional success in academic or athletic performance. But in spite of this, because trauma profoundly affects the sense of being worthy of love, attention and respect, this success is rarely matched by positive relationships with other people.
Disconnection often leads to by isolation and loneliness and shame, and the evidence linking loneliness with serious disease and a shortened life expectancy may be because loneliness is a proxy for trauma.
One of the ways that people who have experienced trauma, especially abuse, rationalise what has happened is by blaming themselves.
The overwhelming sense of being deeply flawed and unworthy of care and attention makes it very hard to convince people who have suffered trauma that they deserve the care that they are entitled to. They can be very hard to engage with care, and are often excluded because they can be chaotic and have different priorities – safety, money, housing and so on, to clinicians. Self-harm through neglect, and unhealthy behaviours are much more prevalent among people who have experienced trauma, as is more direct self-harm like cutting and suicide.
Doctors, nurses, receptionists and others who work with people who have experienced trauma and suffer the trauma world that comprises trauma’s aftermath, know very well how overwhelming and contagious patients who suffer severe anxiety can be. From repeat attendances, especially to A&E and out of hours, to panic attacks and aggressive behaviour, the emotional labour, sometimes referred to as secondary trauma, of caring for people who are very chronically, severely fearful is exhausting. A child who has experienced trauma is constantly vigilant, always on edge, prepared for fight or flight at all times. This constant tension and hypervigilance leads to high-levels of hormones like cortisol, adrenaline and noradrenaline, tense physical posturing or the opposite – cowering; hypertension, breathlessness, chest tightness, irritable bowels; and over time chronic pain, heart-disease and eating disorders – especially when they represent a battle for self-control. The constant fearfulness becomes an inseparable part of the traumatised person’s identity, so that it becomes impossible to relate the physical symptoms to ‘anxiety about a thing’. Somatic symptoms lead to the fear that a fear that there is something wrong, some awful disease in their stomach, chest, brain, or wherever the symptoms are felt. Faced with patients whose anxiety and physical symptoms are overwhelming, clinicians frequently resort to medical investigations, often in a futile attempt at reassurance, to allay their own anxiety or because it’s easier to talk about the diseases they don’t have than the stories they do. Because the risk of biological disease is so much higher for these patients, the tests aren’t entirely without justification, but most of the time they serve to distract rather than reveal the underlying causes.
Feelings of safety, security and trust in other people are laid down in the very earliest years of life. Deprived of this, anxious babies become frightened children and fearful adults. Desperate for human connection, they often make intense attachments with others, and then terrified that they will be broken off, in part because of their own intensity, they sabotage the relationship before the other person lets them down – as has happened so many times before.
Given just how much of our time in general practice is spent helping patients cope with the aftermath of trauma, it is perhaps surprising and certainly important to remember that the majority of people who have experienced trauma seem to survive without suffering too much. I think we are preoccupied with the tip of a trauma iceberg.
Almost certainly, but very difficult to prove, the most important factor for resilience is a long-term relationship with an emotionally stable adult. The worse the abuse, and the younger it starts, the harder it is for people to achieve this – an inability to trust other people becomes part of their personality. Afraid that their victims might develop a relationship with anyone else, abusers frequently do whatever they can to stop this happening, until eventually their victims give up. Many GPs find ourselves in the position of being the ‘only emotionally stable adult in a victim’s life’. I went for years knowing, or at least suspecting that this was the case before understanding the links with trauma.
Being able to make sense of what happened is often very hard. Abuse is so often done by people who should have provided kindness and protection to a vulnerable young person. It is heartbreaking, but understandable that victims frequently rationalise this by thinking, ‘it must have been something about me, something I did, or said – it must have been, at least in part, if not wholly, my fault’. Abusers sense this and feed into it, telling their victims that they are getting what they deserve until eventually they believe it. Finding different ways of making sense of abuse – perhaps years after it has happened, can be extraordinarily difficult and can require long-term therapy. For some people though, I believe that what happens, over repeated short appointments with a GP, perhaps over many years, is that new narratives are co-created, making sense of what happened in different ways.
Trauma is disempowering; a sense of self control is wrenched, often violently away. Fearfulness and disconnection add to the identity of a body out of control. In abusive relationships the victim is rendered powerless. If the victim is helped to gain a sense of (and of course, actual) control, it helps enormously.
Like all healthcare professionals, and especially those who work in deprived areas I care for the survivors of trauma every day. It helps to know as much as possible what evidence there is for recovery.
The slide above is adapted from Judith Herman and Bessel Van der Kolk. It can take years to develop enough trust with a patient to talk about trauma, during which time millions of pounds might be spent investigating and treating their physical symptoms and mental health. The costs to the NHS and other healthcare systems worldwide have never, to my knowledge been investigated. Without the opportunity to develop trusting, long-term, therapeutic relationships, many patients are denied the opportunity of recovery. Van der Kolk warns strongly against assuming that there is ‘a’ treatment for trauma, there are too many different types affecting too many people in too many different ways for one to be sufficient. Because trauma affects both body and mind, treatments that attend to both are very often required. It must also be remembered that trauma is just one of a number of contributory factors to many diseases, and we must not overlook the others, or assume that trauma alone is responsible. Autistic spectrum disorders can be mistaken for trauma because of problems with social interaction, anxiety, sensitivity to sound/ light/ touch and impaired motor coordination are common features of both.
The quality of therapeutic relationship is more important than the type of therapy, but it is almost impossible for the rational self to talk the emotional/ physical self out of its own reality, which is why CBT often fails.
Vulnerability to trauma begins before birth and is especially important during the first 2 years of life. Childhood poverty in the UK has been rising for years and is among the worst in the developed world. Programmes to ensure children get the best possible start in life- like Sure Start have been cut or scrapped. Health visitors are completely overwhelmed as are drug and alcohol services. It seems that there will probably be even more victims of trauma in the future. We need to raise awareness among professionals, the public and policy makers. We need advocacy and activism from professionals. We need a social safety net that is not so inadequate that people are forced into destitution or in which a life of intoxication is preferable to the impoverished, hopeless alternative.
Trauma informed care
Care for people who have experienced trauma needs to be based on evidence and compassion and combined with advocacy and activism
Learning about trauma has completely transformed my practice, helping me to make sense of so much that has frustrated, worried and exhausted me for years. I am now committed to sharing the lessons with other healthcare professionals, beginning with my whole practice team – from the receptionists who frequently face hostility and unpredictable behaviour, to the secretaries who type reports full of traumatic detail, the nurses who see them for intimate examinations and the doctors who struggle with their inexplicable symptoms. Struggling with patients who have suffered trauma can inflict trauma on those whose job it is to care – both because of the intensity of experiences and because their own trauma may be triggered.
My hope is that the NHS can act with science and compassion combined with advocacy and activism to lessen the amount of trauma being inflicted and improved the care of those who have survived.
- ACEs: www.acestoohigh.com
- Trauma informed practice Scotland 2017-8
- Childhood forecasting of a small segment of the population with large economic burden. Dunedin study – Nature http://www.nature.com/articles/s41562-016-0005
- Dunedin study background and commentary https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4412685/
- ‘You should have been more careful’: when doctors shame rape survivors https://www.theguardian.com/commentisfree/2017/oct/15/obgyn-doctors-shame-sexual-assault-survivors?
- Trauma-centred-care: http://www.commonwealthfund.org/publications/newsletters/transforming-care/2016/june/in-focus
- Bessel Van Der Kolk: The Body Knows the Score 2015
- Judith Herman: Trauma and Recovery 1992 (2015 edition)
- Daniela Sieff: Understanding and Healing Emotional Trauma 2016
- James Rhodes: Instrumental 2016
- Jay Watts: Borderline Personality Disorder, Why people self-harm
- A Little Life: 2015
- Resilience: 5 minute film: https://vimeo.com/139998006
- Half hour BBC radio 4 programme about adverse childhood experiences: http://www.bbc.co.uk/programmes/b070dksr