Chapter 11. Journeys through Illness
Suffering and Resilience
Kristine Martin-McDonald and Cath Rogers-Clark
This chapter:
■ explores the notion of living with chronic illness as a journey;
■ explores the concepts of enduring and uncertainty as aspects of the suffering associated with living with chronic illness;
■ defines resilience;
■ explores the ways in which people develop and use resilient strategies in the face of chronic illness;
■ describes survivorship as an outcome of resilience; and
■ discusses the role of nurses and other caring professionals in relation to supporting a person through their suffering, and to develop their resilience in the face of that suffering.
This chapter is focused on illness experiences. Illness experiences are inevitably challenging for the person with the illness, and may involve periods of often quite intense suffering. At the same time, there is ample evidence that many people living with illness, especially chronic illness, learn to manage both their illness and their own responses to it. Suffering and resilience, then, are major dimensions of the illness journey. Both are discussed in this chapter. As was noted in Chapter 8, there is a variety of publications written by people with chronic illness, in which their own experiences are detailed. Nurses have much to learn from these publications as well as from those who talk to us about their illness journeys. If we will only listen, we will hear how they have suffered, but also how they survive each day and get on with their lives as well as they can in the shadow of illness.
The analogy that living with an illness is like being on a journey helps to explain the diversity of illness experiences. Illness journeys can be short or long, but are more than likely to involve periods of suffering, which may take any number of forms, as well as times when things seem to be easier and the person with an illness feels positive and is coping well. There is no one pathway through illness, and people live with their diseases in different ways. Some will find that their journey is direct and swift, whilst others experience detours, delays, and obstacles. Some with be completely cured of their disease, others will live with chronic illness for the rest of their lives, and some will not survive.
However the traveller proceeds, any journey through illness can expose a person to the unexpected, moving a person into the unknown and the uncertain, almost like being in an eclipse. This is a place where suffering is intensified and any view of the journey’s destination becomes shrouded. An eclipse places one in that moment alone, which is like no other moment. The traveller is likely to have little control at this time. For some, the journey is stalled in the eclipse, and marked by continuing and sometimes unbearable suffering. For others, the eclipse ends as the person develops their resilience and becomes a survivor.
As in all journeys, roads may loop back on themselves, returning the traveller to the point of eclipse, at times when the challenges are simply too difficult. Ultimately, however, the traveller requires personal energy derived from within and outside of them in order to maintain a focus on their destination, wherever that may be.
This chapter will explore the concepts of suffering, resilience and survivorship in relation to the story of a man living on renal dialysis. The chapter will also consider the roles of the nurse and other caring professionals in supporting and encouraging the person living with illness through their journey.
I was 32 years old when I was told that I had kidney disease and I would need dialysis one day. When I was 46 I suddenly lost weight, felt tired, my eyes were black, I felt haggard and was pale. I lost so much weight. I thought ‘Struth! What is wrong?’ I thought it was sinister like cancer. I went to see the renal specialist and I was told to start dialysis.
I was infuriated. The specialist arranged for me to visit a renal unit a week later. I saw people hooked up to machines. I thought ‘Oh, God! this is not for me.’ I spoke to people about dialysis. It was terrifying to look at. ‘Oh no, not me, God.’ I was shocked, confused. It looked overpowering. ‘From now on, life is stuffed. Being tied to a machine. Life is going to be hell’ is what I thought. In the back of my mind, it seemed like going to boarding school to me, locked up for years. I was angry. Couldn’t put up with anybody. Bad, short-tempered. It was terrible.
I felt like dying. My skin was all yellow. I looked terrible. The doctors and nurses wanted me on dialysis as soon as possible. I’d say,‘No, I’m not ready yet.’ I wouldn’t be in it. I kept putting dialysis off and putting it off.
I was much sicker than I thought. Finally, it just got too much for me.When it hit me, it was like hitting a brick wall. I just got too sick. I was very ugly on the world.
They told me I would be better within 2 months of dialysis. But 2 weeks, that’s all it took. I noticed it straight away. I’m stupid, stupid. It was ridiculous putting it off for so long.
I was a bit apprehensive. I hated needles. I thought ‘Oh well, I have to cop it.’ The nurses knew what they were doing. Accepting that I needed dialysis was the hardest part.
The only thing that I worry about is potassium, because if I have too much it will kill me. Not having chocolate and things like that aren’t a problem because I don’t like the stuff anyway but I had to give up cola drinks because it brings up your potassium. I love my beer, but I don’t booze much now. I don’t want to overdo how much fluid I take.
A good day is when I’m active and I don’t think about dialysis. Bad days are when I feel terribly drowsy, off-colour and heavy in the head. I have to take things more slowly. I am a bit cranky. The more time I have to think about dialysis the worse I get on bad days.
I’ve learnt to take each day as it comes. I’m pretty sure that I’ll get a kidney transplant one day but I know it’s going to take time. Sometimes I still think ‘why me?’, but other times I think ‘why not me?’. Compared to a lot of other people, I’m pretty well. It could have got a lot worse and I’m better off than many.
Enduring, uncertainly and suffering
This section discusses enduring, uncertainty and suffering as key features of the experience of illness.
Enduring
When an illness occurs, the impact on a person’s life may be so intense that dealing with it is beyond the capacity of their normal coping responses. It may feel like being thrown into the unknown. A coping response to this stage of the journey has been labelled as enduring (Morse 1997). Enduring is defined as the way a person gets through this immediate reaction to the situation. It is innate, rather than learned, with a focus on ‘hanging on’ and protecting oneself. It is focused on the here-and-now, not the future and it involves a temporary void of emotions. Like numbness, emotionally and intellectually the situation remains temporarily incomprehensible.
A normal human response during and beyond a life-changing crisis, such as an illness, is to attempt to understand what has happened and why it has occurred. When the level of knowing about the illness is limited to awareness without full comprehension, the person enters the stage of enduring.
For as long as he could, Gary delayed the commencement of dialysis despite the deterioration of his health. His fear of losing control to the dialysis process and the health professionals motivated him to delay dialysis until he was simply too unwell. On commencement of dialysis, Gary moved to enduring as a way of coping with, and accepting his dependence on the health professionals:
I tried to shut my eyes and pretend it would all be over soon. It was awful, but I just had to hang in there otherwise I’d be a goner.
At this stage, people may be concerned about ‘losing it’ through embarrassing or unacceptable behaviours. They may try to ‘put on a brave face’, to avoid behaviours such as uncontrollable crying, rage in the form of profanities, shouting, or even physical acts of aggression. This is important, because ‘losing it’ in such ways often brings about some kind of institutional sanctions against the offender (Dewar & Morse 1995). For example, people may be labelled as ‘problem patients’, or ‘attention seekers’.
To move through this stage of enduring, strategies may be employed as an attempt to regain a sense of control over their lives. For example, the person may direct their energies to something that takes their mind off what is happening to them. Whilst on dialysis, Gary shared his concerns about how his wife would manage the business whilst he was away. This seemed to occupy a lot of his attention. He felt the need to retain significant involvement:
When I’m in the renal unit, I’m either joking with the nurses or using that time to make phone orders for the stock we need in the shop.
At this point of the journey, so much is unknown. For example, suddenly a person may feel that their body is a stranger to them, and can no longer be trusted. They may no longer be certain of the limits of their body’s endurance, or their emotional capacity to handle these challenges positively. This means people who are enduring are living in uncertain territory that threatens to overwhelm them. Gary lacked the required knowledge to manage his dialysis regime. In fact, the amount that he did not know and understand was daunting to him:
You are nervous because it’s all so new and you’re super careful. Probably too careful, ’cause you don’t want to forget anything and you don’t want to make a mistake. It (dialysis) seems to try and overwhelm you.
Uncertainty
Over time the reality of the illness situation, and the inevitable changes that accompany this, sink in and the person moves into a stage known as uncertainty. Uncertainty is that stage of the journey where a person’s past life is lost but the person is unsure of what is to come, and how they will respond to whatever challenges arise. For example, related to employment, people with an illness may lose their capacity to work, either because employers may not tolerate time out needed for treatment such as dialysis, and/or because of reduced physical or mental capacity:
Struth, I’ve got so much to learn. How the heck am I ever going to be able to deal with all of this. Not only do I lose three days a week to dialysis, but I can’t drink with me mates anymore because of fluid restrictions and I have to make damned sure I don’t get infections in my fistula, so I can’t play footy anymore. It’s just not bloody fair.
During this stage, a sense of personal control may seem to ebb away. Tentative goals are often unattainable, simply because the person does not know how to achieve them because of the current state of their illness. For example, plans for a holiday may be awry when an unanticipated complication occurs just days before the departure date:
I love travelling. Done heaps as a young bloke. I’ve been waiting for my kids to get old enough before doing anymore. My plans are stuffed now because I have to be in the dialysis unit three days a week. The nurses say I can have holidays at other towns with renal units, but they’re booked out months in advance. It’s just too much bother to have to organise it because who knows what condition I’ll be in then.
When a person’s sense of control is completely lost, and the losses a person has endured feel too great, the illness journey is likely to move into the stage of suffering.
Suffering
There is an overwhelming emotional experience when a person is engulfed by the magnitude of what is happening and they are plunged fully into suffering. It is an experience of the total self, a personal, subjective experience that may vary from simple, transitory discomfort to extreme angst and distress. The ‘threat’ of suffering relates to the disintegration of the ‘self’ as known to the person and commences when a person becomes aware that their future will be different to the path they had chosen or envisaged. Thus, suffering does not necessarily commence at the time that function worsens for someone who has a chronic illness, but rather when they become aware of what the future holds or fails to hold for them.
The attributes of suffering convey it as an individualised, subjective and complex experience when a person loses or is at risk of losing control over his/her situation or life. The meaning that suffering brings to a person’s life is intensely negative in nature where integrity, autonomy and personal identity are lost or under threat. Sufferers’ coping mechanisms are taxed beyond their effectiveness.
Suffering is one of the most profound and disturbing human experiences. And yet, the term ‘suffering’ is trivialised by its frequent misuse. For example, this term is often incorrectly used by laypeople, marketers and even some health disciplines to mean ‘diagnosed with’, such as ‘suffering from hayfever’, or ‘suffering from influenza’. Such use of the term usually focuses on observable and measurable pathophysiology and has a tendency to overlook all the aspects of a person that are affected by an illness, such as the cognitive, social, affective and spiritual consequences of that illness.
Equally misleading is the use of terms such as ‘anxiety’, ‘stress’, ‘distress’ and ‘depression’ synonymously with suffering. These descriptors fail to capture the potency and intensity of the experience of suffering. Additionally, using these terms suggests that the distress is somehow unhealthy and unnatural, and should be diagnosed and treated as a mental illness rather than a normal human response to an overwhelming situation:
Everything I wanted to do is gone. From now on, life is stuffed. Being tied to a machine. Life is going to be hell.
A person who is suffering may seek to find some meaning in it, to answer the question ‘why me?’. In the quest to find an answer to that question, a sufferer’s values, beliefs and identity are challenged and altered, as they are no longer the person they thought they were. The experience of suffering may be related to different aspects of an illness, such as: sickness and treatment, for example, pain; care provision, for example, being deprived of power or dignity, or adequate pain relief; and to each person’s unique life and existence, for example, the tension between feelings of hope and hopelessness. The different levels of suffering can be heard in Gary’s comments below.
Suffering related to the sickness:
I felt like dying. My skin was all yellow. I looked terrible.
I don’t feel like a normal person. I just haven’t got the energy.
Suffering related to the provision of care:
The doctors and nurses wanted me on dialysis as soon as possible.
The doctors and nurses are the experts and I don’t want to learn too much otherwise I might want to tell them what to do.
Suffering related to a person’s situation:
When you have something like this, it affects every facet of your life . . . It’s just everything. It’s like a snowball thing. It just gets bigger and bigger . . . I still think ‘why me?’. I have my ups and downs. Like, what could be, where I could be, where I could be working.
Suffering shapes our family and friend networks and how we can live in the world (Kleinman 1991). There is a sense of not being connected to others because suffering isolates and, at times, even alienates the sufferers from the community. Thus social relationships are altered and, at times, family and friends become inattentive, or withdraw completely. This exacerbates the loss and suffering and social isolation experienced:
A lot of our friends have just deserted us . . . I feel alienated. I mean a five minute phone call once every month. How much does that take? And they don’t even do that. There’s no excuse. It’s them I guess, not being able to cope with the way I am. I mean, I haven’t changed. I’m still the same person, it’s just I have this problem.
Such experiences of being discredited or ignored or devalued in any way, either intentionally or unintentionally, contributes to the isolation of the ill person and may affect the carer as well, as it did for Gary and his wife. There is always a possibility that the suffering extends to family members. As nurses and caring professionals we must not lose sight of this possibility.
The relationship between the ill person and their lay carer/s is likely to be altered because of the illness. It is not unusual that the ill person feels they are a burden on others:
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