When I was 23, I had my first real experience of illness, which flung me into a place of deep existential pain. Unexpectedly, following a massive haemorrhage, I found myself facing a hysterectomy as a rare complication of childbirth. I spent three days in intensive care, on a ventilator, undergoing numerous blood transfusions, with a urinary catheter, nasogastric tube and various drips, and a further week on the maternity unit, beginning a slow process of physical recovery and learning how to bond with my daughter. Inevitably, perhaps, this has been one of the most defining experiences of my life – the one that prompted me to train as a therapist and the one that was never far from me during my 10 years counselling with Macmillan.
As I have written elsewhere, ‘whether through the gradual decline of the aging process or the rapid, and perhaps more existentiality shocking, trajectory into loss through invasive surgery [or] treatment’,1 significant illness moves us into a state of what Nicholson and colleagues call ‘persistent liminality’2 and deep psychological pain. However, through the years, I have become increasingly aware of a gap in the literature regarding the grief and loss that, I believe, exists at the heart of the illness experience. Understandably, perhaps, cancer often takes centre stage in discussions about serious physical illness (indeed, the March 2017 issue of this journal offered a moving consideration of counselling in this realm3), but I am thinking here too of illnesses that receive less high-profile media coverage. Diabetes, heart disease, bowel disease, kidney failure, epilepsy, stroke, among many others, all have powerful effects on the body. I am also mindful of the silent agonies of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) – conditions that manifest through a range of debilitating physical and mental symptoms. Whether it is acute or chronic, I believe the pain that permeates such significant illnesses prompts a unique form of grief: a grief that is complex, profound and fundamentally of the spirit, whatever language we use to articulate it.
Acknowledging illness
As counsellors, we may often see clients who are managing illness. The illness might not necessarily have been the reason they entered counselling, but it will have a presence, and it might be prudent to recognise its impact, however subtle. I am not at all suggesting that we compel clients to talk about their illness experience/s, but that, at times, openly acknowledging their physicality might be of great therapeutic benefit. It was only relatively recently that it became clear to me that one of the reasons I rarely talked about my surgery during the early years was because I was seldom invited to do so. For me, voicing such depth of trauma without invitation seemed far too risky. The first time I was offered the opportunity, in therapy, I was afraid my counsellor might be unable to cope with the rawness of my experience, so I presented a heavily censored version. This was, to an extent, cathartic, but it was not therapeutic at the level I needed it to be. It was only when I voiced the less censored version that I acknowledged the trauma I had faced and began to find some relief.
Clients may access counselling in a period of remission, after surgery, or at a time when their physical pain is ‘under control’. It is often at this point that emotions start to seep through – or, as a six-year-old child once told me, ‘break into your brain’.4 Once the urgency of the physical begins to settle, the emotional may surface – sometimes with a vengeance. Grief might emerge for lost freedoms and dignity, for a loss of a future, or of choices and control. Where, for example, do I find space to mourn the fact that I am now doubly incontinent? That I will never be pregnant? That I face amputation or transplant? Incoherence and unpredictability, by their very nature, of course, offer strong challenge to the defined and contained. As therapists, we may defend our practice here, speaking persuasively of respect and boundaries and professionalism but, unless we are careful, we may be in danger of further marginalising those who might most need to be heard yet, worryingly, often signal this with such subtlety we barely notice.
Within the realm of illness, powerful messages abound. As a culture and society, we speak freely and easily of ‘fighting the battle’ and ‘not giving in’. Those who endure and/or survive illness are generally lauded as brave and heroic. There is far less acknowledgment when the pain gets too much or when we do not want to fight anymore. At Macmillan, some of my clients struggled to openly acknowledge their pain and, at times, seemed to minimise their own experiences by indicating that others were ‘worse off’. Expressions of anger, grief or sadness about their illness were sometimes seen as indulgent displays of self-pity rather than, as I strongly believed them to be, fiercely important manifestations of their heart and soul.
In her moving memoir, The Iceberg,5 Marion Coutts describes, with raw eloquence, moments of quiet catastrophe that surround and follow the diagnosis of serious illness: ‘The news falls neatly between one moment and another. You would not think there was a gap for such a thing.’ As the present changes, our future begins to unravel, offering a considerable threat to our sense of self – our core identity.6 Life as it was has vanished, and the ensuing period may assume a somewhat surreal and disturbing quality; we may feel very lost. It is existentially shocking.
Frequently ‘forced to submit to the will of others’,7 our bodies may be in receipt of a disproportionate amount of attention. The more visible our bodies are, the more invisible our souls/psyches may become. Physical trauma shouts loudly. While the intention, medically, may be repair and restoration, such interventions can feel abusive, triggering feelings of helplessness and vulnerability and, at times, great fear.
It is only much later that we may begin to re-connect with our emotional or spiritual selves (picking ourselves up from the floor, perhaps), and what begins at that point may be the far harder part of the process. Recollection of surgical interventions, physical incapacity and pain can have a profound and persistent impact on the psyche. Memories ‘of being distressed due to a lack of control’ and hope fading into an ‘eventual realisation of loss’ are cited as significant predictors of post-traumatic stress symptoms.8 Serious illness offers tangible evidence of our mortality. Life has always been precarious, but now we know it to be so.
Honouring what is lost
While I do not deny that hope and new life can emerge through experiences of illness and pain, I want to make a plea that, in our individual or cultural haste to find meaning, we linger long enough to honour what has been (or is being) lost. To do so, clients might need to take us back to the beginning, to the moment of their diagnosis or first symptoms, and then talk us through the ensuing hours, days and months, emotionally gathering themselves up on the way, perhaps. This, I believe, is an incredibly important process, one that cannot be rushed. Each time a client tells us a little more of their experience, they may remember something different and feel something new. We may witness them becoming increasingly present as they do so, returning to themself and to the world around them. Challengingly, however, this may be a world in which the client no longer wishes to live. Post-traumatic growth is not inevitable, and certainly does not always present in the way our theories suggest.
Clients may find themselves living in two, often more, realities simultaneously – realities that can be disconcertingly misaligned and very different to those lived by the people closest to them. Their body may be recovering at the very moment that their psyche falls apart – a process that is not at all unrelated and one that can be intensely disorienting. A steady and relatively consistent therapeutic space may offer far more than we realise, and our gentle, empathic listening may be a much-needed salve to great pain. Our solid, sensitive presence may also, I believe, go some considerable way to relieving the shame that may accompany the illness experience – particularly an illness that is perceived to be self-induced.
I will always remember the look in one client’s eyes when he experienced from me a truly empathic appreciation of the immense comfort he found in smoking. In a world where everyone was pressuring him to give it up, the relief of being in the presence of someone who was tenderly accepting of his choice and need to continue was clear and moving. While giving up smoking might have offered his fragile lungs some relief, we were not in the realm of the judicious, but the much more complex world of the psyche – a world that does not hold with rules or recommendations, however evidence-based they may be.
Despite our physical visibility, and this can be extreme, experiences of illness and/or surgery can be intensely isolating and can push us to places of loneliness that may feel overwhelmingly bleak. As witnesses to such bleakness, how do we counsellors react? Elsewhere, I have asked: ‘Are we drawn to protect and to soothe rather than to encounter? Does our empathy begin to look rather more like sympathy? Do we, therefore, cease to maintain parity within our counselling?’1 Here, especially, we need to be alert to our own illness narratives, and mindful that our empathy and warmth or frustration and distance might have far more to do with our relationship with our own bodies/experiences than with our clients. Self-awareness is critical.
At times, we may find ourselves drawn to empathise, challenge or support expression; at other times, we may feel it more appropriate to hold silence. We would, however, do well to acknowledge the reasons for such silence. A silence that empathically honours our client’s expression is clearly very different to a silence prompted by our inability to find words. There have certainly been moments in my own practice when I have rightly remained silent. There have also been times when, in retrospect, I wish deeply I had found the courage to speak.
Holding their fear
Attuning ourselves to the physicality of our clients may cause us to become disturbingly aware of our own bodies. When I first began counselling for Macmillan, I was, at times, deeply shaken by witnessing the impact of serious physical illness on the body. Offering true empathy here can disturb us greatly, and having a supervisory relationship that is solid enough to ‘hold us’ is essential. Listening to illness can be very hard; our capacity to hear the chaotic and confused is vital. Empathising with clients who may be in existential crisis, desperately afraid of ‘vanishing away’,9 is impossible, surely, if we are anxious and afraid? There may be times, perhaps, when we find ourselves ‘wanting our clients to achieve closure so that we feel more comfortable’.10
We may calmly acknowledge our impermanence from a position of health and wellbeing, but faced with the concrete reality of diagnosis, we may be thrown into a place of extreme chaos. Physical illness generally catches us unawares. Clients may feel defenceless and highly anxious. Depression can develop, as the world seems to crumble from within. Close relationships can be strained to breaking point, or provide a quality of love never before experienced – sometimes both. Everyday events may become heavy with meaning, the intensity of which can be hard to manage. The pressure to ‘create memories’, tick off the items on a ‘bucket list’ or simply ‘keep going’ can be strong and extraordinarily demanding. Questions of existence, purpose and meaning can emerge, together with the sense that, all too suddenly, ‘it is evening’.11
For some people, religious beliefs may assume a great significance here. Clients may derive considerable comfort from a sense of being ‘held’ or ‘loved’ by God/spirit/universe; rituals and rites of passage may provide a language and meaning for experiences that are beyond words. Conversely, they may feel angry with a deity that promised protection but now appears to have abandoned them. Regardless of diagnosis, they may realise that life will never be the same again. Priorities shift, sometimes radically, and a person may decide to live very differently as a result. Often (but not inevitably) life takes on far greater personal significance.
While bearing witness to such profundity can be deeply moving, Johns12 speaks powerfully of the ‘spiritual traps’ into which we can fall. Do I romanticise or sentimentalise the illness experience? Is my feeling drawn to this work a type of ‘voyeurism’? Do I get some kind of spiritual or emotional ‘hit’ through being near to clients in pain? These are acutely challenging questions that, if we allow them, can take us much further into our understanding of ourselves and, therefore, our practice.
I have been considerably challenged and greatly inspired by working with clients in this area, I have also become acutely aware of my own vulnerability. This has been a demanding piece to write, and I hope it has been demanding to read. This is, for me, a hugely important realm, and one about which too little has been said, through the years, in the counselling arena. I certainly do not see myself as an ‘expert’ in this field, but I do have a strong personal and professional desire to raise awareness and to encourage a fuller and freer dialogue. I would be very pleased to hear from any readers who are working in this area and/or living with illness and who may be interested in taking the conversation further.
Ruth Bridges is a person-centred counsellor and lecturer/practitioner with a deep personal and professional concern for the realms of spirituality, loss and illness. Ruth is Programme Leader for the MA/PgD in counselling and psychotherapy at the University of Cumbria.
References
1. Bridges R. Grieving for myself: the silence and spirituality of personal loss. In: Gubi P (ed). What counsellors and spiritual directors can learn from each other: ethical practice, training and supervision. London: Jessica Kingsley Publishers; 2017 (pp103–119).
2. Nicholson C, Meyer J, Flatley M et al. Living on the margin: understanding the experience of living and dying with frailty in old age. Social Science and Medicine 2012; 75: 1426–1432.
3. Carling C, Crook A, Fior J. Counselling people with cancer. Therapy Today 28(2): 26–29.
4. Bridges RM. ‘When someone’s upset someone, then their feelings feel bad’: an investigation into the emotional awareness of a group of five- and six-year-old children from a mixed Year One/Two class within a 270-place state primary school. Unpublished manuscript; 2003.
5. Coutts M. The Iceberg: A Memoir. London: Atlantic Books; 2015.
6. Lykkegaard K, Delmar C. A threat to the understanding of oneself: intensive care patients’ experiences of dependency. International Journal of Qualitative Studies on Health and Well-Being 2013; 8: 20934.
7. Karlsson V, Bergbom I, Forsberg A. The lived experiences of adult intensive care patients who were conscious during mechanical ventilation: a phenomenological-hermeneutic study. Intensive and Critical Care Nursing 2012; 28: 6–15.
8. Myhren H, Ekeberg Ø, Tøien K et al. Posttraumatic stress, anxiety and depression symptoms in patients during the first year post intensive care unit discharge. Critical Care 2010; 14, 1.
9. Adelbratt S, Strang P. Death anxiety in brain tumour patients and their spouses. Palliative Medicine 2000; 14: 499–507.
10. Heath L. Keeping our balance: the profound challenge of loss. Transactional Analysis Journal 2014; 44(4): 291–301.
11. Quasimodo S. And suddenly it is evening. In: The selected writings of Salvatore Quasimodo (A Mandelbaum ed & trans). New York: Minerva Press; 1968 (first published 1943).
12. Johns C. Being mindful – easing suffering. London: Jessica Kingsley; 2006 (p166).