I was really looking forward to attending the annual conference of The British Psychological Society’s Counselling Psychology Division last weekend in Newcastle, both to meet up with other psychologists and present my work. Unfortunately, as often happens when you are living with a medical condition, life had other ideas! A few weeks before the conference I found out that my pacemaker & leads are faulty & need to be replaced - soon! Prior to being hospitalised (where I am writing this now, on telemetry, awaiting surgery) I had the opportunity to pre-record my presentation enabling me to present (virtually) at the conference. Since it’s been recorded I thought I may as well use the opportunity to share it with you here too.
The presentation draws on personal experience & contemporary psychological theories of attachment, trauma & neuropsychology. I hope to contribute to improved awareness & understanding about this hidden population while supporting improved care, feelings of connectedness & safety. Of course, given the common ground, much of this work is applicable to other life long medical conditions.
I hope it is of interest to people, like me, who are navigating the complexities of life with a medical condition & those who share this journey with us, as family, friends, our medical team & wider society.
Liza Morton, Strathclyde University
One in every 125 babies is born with a heart condition – but thanks to modern medicine more infants are surviving than ever before. In the developed world, 90% will now live into adulthood, compared with just 20% in the 1940s. However, there is no cure for these conditions and the person needs lifelong medical monitoring.
Congenital heart disease (CHD) doesn’t just affect the body – it affects the mind, too. A growing body of evidence shows that people with CHD are more likely to suffer from mental health problems, such as anxiety, depression and post-traumatic stress disorder.
To date, this psychological impact has been understood as a consequence of the additional stressors that living with a serious lifelong medical condition can bring, such as missed schooling, spending lots of time in hospital (from childhood), and having to undergo frequent surgery. I know from personal experience how challenging this journey can be.
But a relatively new understanding about how our bodies regulate feelings of safety, risk and social connection may help to make sense – from a biological perspective – of this increased risk of mental health problems.
Flight, fight or freeze
Polyvagal theory, which draws on the latest developments in neuroscience, psychology and biology, proposes that one of the body’s most important jobs is to avoid threats in order to keep us safe. To this end, the body flits between three different “systems”, depending on how safe we feel. When all is well, we stay in our social engagement system. This is our most evolved and healthy way of being. In this mode, we feel safe and sociable, and we are best placed to grow, develop, learn, recover and heal.
When we feel under threat, the fight or flight system is activated. The nervous system is called to action and we feel compelled to either fight or run to safety. This is felt as anxiety. However, if we feel like our life is at risk, we switch to our most primitive system by “playing dead”. Physiologically, this system is deactivating – we become immobilised, feel numb or dissociate. Afterwards, we may struggle to recall what happened to us because the parts of our brain that make sense of events and store memories are shut down.
To feel healthy we need to be able to assess and adapt to our environment when we are both safe and unsafe. How well we can do this is partially shaped during our early years. If we experience a lot of trauma when we are growing up, we may be more likely to interpret situations as threatening. This affects how we manage stress. As social animals, it can also influence our relationships, as we need to be in the social engagement system, most of the time, for social connection.
Since the heart is central to our nervous system, any heart problems may affect how efficiently our bodies respond to threats. This could, in part, explain why people with congenital heart disease are at greater risk of anxiety, depression and post-traumatic stress disorder. This risk is further increased by exposure to potentially traumatic early life events, such as surgery and being separated from parents due to periods of hospitalisation.
This has important implications, from cradle to grave, for people living with a heart condition. This understanding could better inform medical care by focusing on establishing feelings of safety, for example, by promoting the importance of the parent’s presence, touch and soothing voice to the child while supporting the psychological health of the child’s family.
Teaching medical staff how to manage distress, how to communicate compassionately and the importance of encouraging the presence of loved ones would also be beneficial. This understanding also suggests possible interventions, specifically touch, play and music therapies for children.
For adults, a focus on safety and emotional regulation may be more beneficial than talk therapy. This seems particularly important for a population who may have grown up during a time when parents were discouraged from visiting their children in hospital and who may have endured illness and difficult medical experiences without the soothing presence of their parent. People living with this condition might also benefit from mindfulness, meditation and breathing techniques to help them feel safe.
We should also look to improve awareness and understanding about this hidden population – doing so would support social inclusion and feelings of connectedness and safety within wider society.
Back in 2012 The Somerville Foundation appointed me as their (voluntary) Campaign Manager in Scotland after seeing me present evidence to The Scottish Public Petitions Committee at the Scottish Parliament. I had submitted a petition to the Scottish Government to ask for Healthcare Standards and improved care provision for adults born with a heart condition following various critical challenges with my own adult care and after reaching out to others to find I was far from alone. Congenital Heart Disease (CHD) is the most common birth defect, affecting 1 in 125 babies. 90% will now survive into adulthood compared with just 20% in the 1940s. We can thank advances in modern medicine for this growing population. This is a heterogeneous group including people with a wide variety of different cardiac conditions of varying complexity. Currently, there is no cure for more complex CHD with treatment and lifelong monitoring required. For today’s adult survivors, treatment has often been experimental while their care provision has all to often not evolved in time to meet their needs and many patients are lost to follow-up. There is an estimated 16,500 such adults in Scotland, although worryingly around half are lost to the system. At least a further 135 patients each year make the transition from paediatric services in Glasgow (NHS National Waiting Times Centre, 2012).
You don’t have to be a fashionista to know that what you wear impacts how you feel about yourself. Yet, fashion is unrepresented in contemporary psychology. Of the studies that have been done we know that clothing impacts self-esteem (e.g. Creekmore, 1974). Getting dressed is a process of self actualisation in which the individual strives to achieve fusion between the self and the outfit. Yet, hospital clothing can be the opposite, a distinctly failed fusion of self and dress (e.g. Topo and Iltanen- Tähkävuori, 2010). The instruction to wear a backless gown for medical interventions (e.g. for x-rays or theatre) may add to a sense of disempowerment. We know from psychological literature that such loss of control and autonomy can increase vulnerability to post traumatic stress, anxiety and depression. The clothing worn by the attendant medical provider may further any power imbalance between patient-medical professionals which is inconsistent with the ‘Person Centered’ approach advocated by NHS policy to safeguard patients from depersonalised care (Morton, in Press, 2015a, 2015b, 2012). Hospital clothing can also impact on physical health. The recent #EndPJparalysis social media campaign led by NHS-trained nurse, Brian Dolan focused on encouraging patients in hospitals, where possible, to stop wearing their pyjamas or hospital gown based on the idea that wearing pyjamas can reinforce the ‘sick role’ and prevent a speedier recovery.
This book (left) is now available to pre-order (click the image) & it will be published in June (USA) & July (UK). In my chapter, I explore how The Polyvagal Theory can provide an embodied understanding of living with a heart condition from birth.
The Polyvagal Theory & Neuroception of Safety
Neuroscientist Professor Stephen Porges’ Poly Vagal Theory (PVT) offers an embodied understanding of our nervous system, senses, emotions, social self & behaviours. He proposes that one of the most fundamental jobs of our body’s nervous system is to keep us safe, a task he calls Neuroception. To this end, three systems have evolved over time; each controlled by a different branch of the vagus system (hence, The Polyvagal Theory). This enables us to self regulate & respond to threat (including social threats like rejection or physical threats).
"Your chapter provides new information for those of us, who have studied the bidirectionality of brain and body. As a scientist, I have frequently talked about the bidirectionality between heart and brain and between visceral states and mental function. However, your chapter truly provides a personal narrative of these concepts that has been missing from the scientific literature and specifically from Polyvagal Theory." Prof Stephen Porges, Neuroscientist.