Understanding some of the triggers and emotional changes that might come up in sickness and/or dying
What are some of the emotional changes you can expect when faced with the diagnosis of a life-threatening illness?
*The usual suspects may emerge… Some of the issues that we face will be the same ones that we have been dealing with – or perhaps trying to avoid – our entire lives and they may now assert themselves with unusual intensity. They might include feeling abandoned, being fearful of pain, or of not being in control; anger, guilt, shame, and so on.
*Offloading to the ‘irrelevant basket’ may occur… Priorities can shift when we’re encountering death and some issues we’ve been dealing with – the drive to achieve, for example – now may simply dissolve.
* The surprises… Some issues, including possible loss of self-image, will reveal themselves to us for the first time.
There may be a sense of regret that we have not lived fully or that we have unfinished business with others. We might feel the loss of certain friends who cannot handle what is happening, the love they provided and the experiences you shared. Of those who do stick by us we may have expectations that are not being met; there may be a mismatch between what we feel we need and what we are given.
The dehumanising process of the hospital-hospice can trigger a mixed bag of other challenges. These may include the loss of autonomy: others decide when we will sleep, wake up, eat, use the bathroom, see our doctor and have visitors.
We may notice a changing sense and use of time. We are faced with the need to be able to wait – for a procedure, for results, to see our doctor – and, particularly challenging, to hang in with uncertainty. Uppermost too will be our connection with the professionals caring for us, our dependency on their expertise, and our need to feel respected and safe, to feel heard and supported.
Just as in other times of intense experiences, when confronted with death we may experience a flood of different emotions arriving in no particular order, sometimes several at once. Commonly the initial response to this onslaught will include going into shock, or simply denying reality, or both.
*Shock – numbness and the sense that everything is unreal – is a perfectly natural response to being told that we are dying. We may be unable to express any emotion or we feel shaky and weepy, or given to hysterical laughter. These are perfectly normal responses – it may take a little time to absorb the reality.
The shift between being healthy and being sick can happen to someone so precipitously that it leaves us stunned and without words for the depth into which we are plunged…. When suddenly or gradually, a life-threatening illness has the power to cut through illusions and bring us close to the bone, maybe for the first time in our lives…’ 
* Denial may be the only way we can cope with what is. Our denial may also be way of protecting friends, family and children from their own fears. We tell ourselves that if we don’t acknowledge it, it isn’t happening. As the illness progresses denial is more difficult to maintain. In the words of KD Singh, ‘There is a growing awareness that the self’s desire to continue living will be frustrated by the inflexible reality of terminal illness.’. See also Resignation & Acceptance.
In moving beyond shock or denial we need to be prepared for the fact that the emotions we have been locking down will now surface.
* Fear, to which anxiety is a reaction, is said to be, at root, the fear of dying itself. It can take many different forms and may be related to practical concerns such as severe pain or breathlessness or your family not managing without you. It may also be connected to loss – of health, body parts, mental faculties, sexuality, mobility, control, status, beauty, family, friends and work.
Another issue that can arouse our anxiety include troubling past memories, perhaps of being alone or abandoned or dependent on others who may have let us down. Fear of humiliation and a loss of dignity if we become a burden to others can be very frightening. Then there is the challenge of having to face the unusual – for example, being a patient, or undergoing unfamiliar procedures. Not to mention coming face to face with the unknown and the simply unknowable.
Significant existential anxieties may arise, where we question the meaning of our lives and how we have lived them, perhaps even fearing afterlife judgement and retribution.
*Depression is a very common reaction to illness, so much so that it can often be regarded as a normal response to an overwhelming crisis. As does despair, it comes and goes. It’s characterised by a variety of symptoms – not all of which might be present at one time. They include feeling ‘down,’ insomnia or over-sleeping, loss of appetite, loss of interest in social intercourse, crying, no response to good news or funny situations, lack of facial animation, agitation, irritability, brooding, bitterness, coldness and self-destructiveness.
Typically there is a blunting of emotions and lethargy, and the sense of being in a grey fog. ‘If this numbing blanket were lifted suddenly, the depressed person could experience the full force of his psychological pain at knowing he is dying,’ suggests Dr Heyse-Moore. ‘Depression itself can be intensely depressing, but the alternative may seem, to the sufferer, even worse ….’
Depression might have a physiological basis – such as the disease or unremitting pain – or a psychological one, such as part of the patient’s adjustment process or as an inverted form of rage, unresolved grief or feeling disempowerment in the face of an unstoppable disease process.
It’s worth noting that those who have not been told that they are dying have greater problems with depression than those who are aware of their situation.
* Anger may be triggered because we feel out of control, or that life has not been fair to us. Why me?
Anger is an energizing, ‘hot’ emotion, an assertion of the self. It can make us feel less impotent in the face of what threatens to overwhelm us. As such it may be a step up from depression and feelings of powerlessness and may be used to energize and motivate ourselves to face the journey ahead. It may be displaced; however, onto those who are healthy. This might include those who are taking care of you or the medical and nursing staff, so it is important to be aware of how we harness its energy.
*Blame, accompanied by covert or overt anger, may be directed at the medical profession generally or our doctor specifically: Why didn’t my doctor pick this up earlier? It may be directed towards those closest to us: If I hadn’t been so caught up with looking after other people….’ Perhaps we blame ourselves for not having lived a healthier life or for ignoring early signs of illness.
Most of us are very uncomfortable with the state of uncertainty, of ‘not-knowing’ – in any situation. In facing death, the mind might search for a reason, any reason, and may point the finger at ourselves or those we love. Throwing the anger or fear behind our discomfort onto ourselves or the other or provides a momentary release of tension.
* Uncertainty and Ambivalence may be present inasmuch as we are unsure where we are on the trajectory from birth to death. We may be confused as to whether to pursue living and life or prepare for dying and death. We may move between reactions – from seeming acceptance to fierce resistance, from calmness to fear or rage. Or we may have mixed feelings – perhaps desiring to hang on to life and fearing death while simultaneously longing to let go of all the pressures and responsibilities and let go into death.
*Relief. It may be that you feel some relief at the thought of dying. You may have found life a struggle at times and the thought of death comes as a relief. This may be difficult to share with your loved ones and is perhaps better shared with a professional or trusted friend.
*Hope and despair tend to be two polarities between which we move in times of crisis. This is a perfectly normal way of trying to adapt to a situation. Typically the depth of the ‘down’ times and the height of the ‘up’ times decrease so that the swings become less extreme, less intense.
‘At some point, resilient people stop trying to control the uncontrollable. They put aside unrealistic hope because it no longer helps.’ 
Yet, who can say with certainty what is realistic?
‘It is absolutely true that doctors are not brilliant at predicting the survival of individual people, and that when they do make a prediction they are very often wrong.’ 
If that’s the case, how can we not consider that maybe there is a cure somewhere and that anything is worth trying? How do we know when our hope is not helpful?
Resilient hope gives us wisdom to understand the past, and energy to plan for the future. Illusory hope hinges on fantasies that something or someone will magically make things better. At some point, resilient people stop trying to control the uncontrollable. They put aside unrealistic hope because it no longer helps. 
* Bargaining may result from the struggle …between the reality of the situation and the forces of hope and despair.’ It ‘has the quality of the magical, sometimes superstitious thinking, where we will turn to anything if it will give us what we want. At this point what we want is a miracle, a reprieve from death.’ 
Bargaining might manifest as a proposed pact between yourself and the doctor: ‘If I undergo the treatment will you promise me it will work?’ or you might try to strike a deal with some higher power, as in ‘God, I’ll die happy if you just let me see my daughter get married.’
Bargaining allows time for hope and despair to resolve themselves and represents the struggle in the mind that is the beginning of acceptance.
*Anticipatory Grief may be experienced for the many treasured aspects of our lives that will disappear as we move into death. We may find ourselves mourning, in advance, the loss of the roles we have played as a member of a family – parent, spouse, sibling, and so on. Or we may grieve the loss of our roles in the wider community, in our professional or social capacity. For the first time it may be brought home to us how such roles helped define us, giving value and meaning to our lives.
The death of the body is also the death of all the experiences we’ve ever had: all the great times, the challenging times, the joys, the sorrows, the gains and losses, all the threads of life’s rich tapestry. All the people with whom we were related, and all the other forms of animal and plant life that we enjoyed, also die for us. As well as the loss of the past we might grieve for the loss of a future.
* Guilt, shame and feelings of being unlovable can be triggered by thinking of our bodies as defective, or by thinking that we must have brought the illness on ourselves and that our death is our ultimate failure. We may feel we are a burden on others – physically, emotionally and financially – or feel that what is happening is a form of punishment.
Shame may be part of guilt, or may result from judging that our bodies are unpleasant to be around. It may arise in reaction to intimate procedures that we need others to carry out for us, such as helping us in toileting. Guilt and shame can compound a sense of our no longer feeling worthy and lovable.
* A mix of other feelings is natural at such an intense time, and we may well feel several different emotions together or passing in swift succession. It’s understandable if we go through periods of resistance, resentment, a sense of defeat; of impatience, frustration, self-doubt and distrust. In addition there may well be times when we feel bored, powerless and demeaned.
Issues which may arise in sickness and dying
In addition to emotional changes, there are likely to be various issues which may arise. See also:
When our health is challenged – includes uncertainty, loss of independence, relationship with carers, loneliness, changing sense of self, acceptance, impact of hospitalisation, physical pain & discomfort; and resources to support you.
Issues that may arise in dying – includes uncertainty, the need to tell your story, completion of unfinished business, accepting that you are dying; and resources to support you.
Sources/ Recommended Reading
1) Close to the Bone: life-threatening illness as a soul journey Jean Shinoda Bolen, M.D. (Conari Press)
2) The Grace in Dying: a message of hope, comfort, and spiritual transformation Kathleen Dowling Singh (HarperOne)
3) Speaking of Dying: a practical guide to using counselling skills in palliative care Louis Heyse-Moore (Jessica Kingsley Publishers)
4, 6) Resilience Anne Deveson [Allen & Unwin]
5) I Don’t Know What to Say Dr R. Buckman (Papermac)
7) What Dying People Want D. Kuhl (Public Affairs Books)