Journeys through illness: suffering and resilience

Journeys through illness: suffering and resilience

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.

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