Sickness, Stigma and Spiritual Awakening

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Preface

When a person who has enjoyed good health becomes ill, they are likely to experience a range of emotional responses: anxiety about their diagnosis, lack of knowledge around potential medical interventions, uncertainty in relation to their on-going care and management of their condition and the possible consequences for their lifestyle and their family. These experiences are heightened if their interaction with the health system and healthcare professionals is not positive. And, it is especially difficult when a person suffers from an illness that is contested – where their symptoms and diagnosis are challenged by health professionals – and their lived experience is not believed. However, as this book attests, the cloud of anguish and suffering that arises from such contestation can also have a silver lining – it can give rise to an experience of spiritual awakening in the one who suffers.

In this ground-breaking work, Bernadette Masterson explores the nature of the phenomenon of spiritual awakening amongst women, with physical illnesses which are invisible and chronic and who have been subject to disbelief by healthcare professionals, family and friends. This very timely book brings together and examines an extensive body of research on the topic in light of the experience of nine women with chronic invisible illness. The book is especially powerful because it gives a deep and rich account of the experiences and suffering of these women and assesses the traumatic impact on their lives, relationships and well-being of not being believed.

While this work will be of interest to the general reader and, in particular, those who experience a contested illness, it has special relevance for healthcare professionals; it presents a particular challenge to those engaged in the training of healthcare professionals. It highlights the need for the development in the medical humanities of a model which is respectful of the experience of invisible illnesses and which acknowledges the potential of such experiences for spiritual awakening.

This book provides compelling evidence for a narrative approach to medical practice and stresses the importance of attentive listening and ← vii | viii → narrative competence as key elements in medical training. Such advice is supported by the Guide to Professional Conduct and Ethics of the Irish Medical Council¹ which reminds us that doctors must always be guided by their primary responsibility to act in the best interests of their patients. Such a narrative approach is also congruent with the definition of professionalism of the Royal College of Surgeons in Ireland which acknowledges the need for a partnership between patient and doctor which is based, inter alia, on reflective practice leading to greater self-awareness in the medical practitioner and grounded in mutual respect.² This book should prove to be particularly valuable to the medical profession as a means of fashioning more compassionate clinical engagement with patients and as an aid to generate amongst its members an appreciation of the benefits of phenomenology and of narrative medicine as supplementary diagnostic tools.

The chapters on spiritual awakening in this book are particularly illuminating. Bernadette’s exploration of spiritual awakening in light of historical and contemporary spiritual writers and the interdisciplinary field of the medical humanities is particularly useful. Pellegrino, one of the founding fathers of the medical humanities, argued that the wounded humanity of patients must be seen and understood by the medical profession. This wounding occurs because patients suffer from the loss of three basic freedoms – freedom of action, freedom to make rational choices and freedom from the power of others – and the loss of a sense of the integrity of the self. Bernadette’s research suggests, however, that women may be empowered by considering illness as a possible gateway to spiritual awakening, as a call to a more contemplative, wisdom way of being. As she expresses it herself: ‘The idea of illness as a contemplative path offers a hopeful paradigm … leading individuals from oppression and illness to liberation and healing.’

Bernadette explores how Assagioli’s theory of psychosynthesis, the writings of women mystics and scholars from the field of medical humanities ← viii | ix → can illuminate the mechanism of inner awakening experienced by the participants in her research. She develops an innovative, heuristic, seven-stage model of the journey of such spiritual awakening which is grounded in the themes emerging from her research. The model represents milestones on the women’s journey through the landscape of chronic invisible illness toward a mystical inner awakening and a wisdom way of being.

This book also offers support to carers, family and friends – as well as therapists and spiritual directors – by helping them to gain a deeper understanding of the extent of shame, stigma and trauma experienced by sufferers of chronic contested illnesses. Such understanding can lead to more compassionate support for the suffering patient.

In recent decades there has been a growing awareness within the healthcare professions about the importance of spiritual care. This intelligent, well-researched and very readable book makes an important and timely contribution to that ongoing dialogue.

David Smith
Associate Professor of Healthcare Ethics
Royal College of Surgeons in Ireland ← ix | x →

1 Guide to Professional Conduct and Ethics for Registered Medical Practitioners (8th Edition, 2016).

2 Medical Professionalism: Promoting Patient and Physician Safety (RCSI, 2018). See also: Transforming Healthcare Education, Research and Service: RCSI Strategic Plan 2018–2022.

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Illustrations

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Acknowledgements

This book has been a long time in the making, and could not have been accomplished without the encouragement, guidance and inspiration of a number of people. Firstly, I want to thank the women who took part in the original research with such generosity of spirit. In the face of ill health, they were willing to sacrifice scarce energy resources in order to convey with courage, humility and honesty, their inner worlds of meaning-making whilst living with chronic contested illnesses. For reasons of confidentiality, I am not in a position to thank them by name. My sole offering in return is dedicating this book to them.

I am indebted to Bernadette Flanagan whose support for this topic has been unwavering since our first meeting. Without her commitment at that time as head of research at All Hallows College, Dublin City University, the project would not have come to pass. I was truly privileged to have had Bernadette, an international pioneer in the academic study of spirituality, as both mentor and supervisor for the doctoral study. I have had the good fortune also to have the co-operation and encouragement of Michael O’Sullivan not only in the formative years of this endeavour, but also more recently as colleague and director of the Spirituality Institute for Research and Education (SpIRE).

Noel Keating has supported me with great patience and skill in the process of writing the book and I am most grateful to him for his time, his insights, and his wise observations.

My thanks to Christabel Scaife who was my first point of contact at Peter Lang. Her hospitality towards the book proposal was heartening. Anthony Mason, also of Peter Lang, has been affirming from the start, and gracious in his responses to the diverse queries foisted upon him. Working with Peter Lang has been, all along, a positive and uplifting experience.

A very special thanks to my friend Anne Hederman, without whom this book would not have seen the light of day. Crucial also was support and encouragement from Raymond Cadwell, Michele Ryan, João Sita, ← xiii | xiv → Gabrielle Jin, Karen Ward, Orla McMahon, Camilla Powell, and Helene Vania. Gratitude is owed to Steven Singleton for his kindness and unwavering patience in assisting with electronic referencing; sincere thanks also to Éibhlís Nic Uaithuas for skilful input with word processing matters.