Chronic Illness

Impact and Response

by Dr Freda Newcombe

Honorary Consultant Neuropsychologist

(First printed in Lupus UK News & Views, Spring 1998 Number 54)

Serious chronic illness surely qualifies to be regarded as a critical life event. Does it differ, quantitatively or qualitatively, from "normal" phenomena - the experience of ageing, for example? Lupus and ageing have some features in common. Both "conditions", in the present state of knowledge, are irreversible; they tend to diminish the individual - physically and mentally. But ageing is inevitable; a process which the sentient human must anticipate and prepare for. Lupus is no respecter of age. Understandable, its sudden diagnosis - in the young and old - can evoke feelings of anger ("why me?"), depression associated with the variable and often unpredictable physical handicaps, and anxiety about the future. described in general terms as a multisystem connective disorder, the specific cause is unknown.

Treatment tends to be palliative. Thus, the problem is one of management. In practice, how can patient and family learn to come to terms with the illness and find strategies to alleviate or even bypass some of its characteristic symptoms? In this context, sustained and committed professional attention is not always available. Voluntary support groups, therefore, play a crucial role - analogous to that adopted by HEADWAY for people who have incurred a head injury and their families.

Associated with a courageous acceptance of the impact of Lupus, which can only be achieved over a period of time and with considerable psychological effort, is the central concept of control. Initially, this is vested in medical attention, advice and medication. In the long-terms, there is an inevitable shift as patients and families accept the need to play a major role in the management of the disorder of daily life. the taking over of decision-making and control - however simple and partial - is a crucial factor in the process of adjustment and learning.

Control can be achieved via physical objects or through mental activity. the multiple-handicapped child who discovers that pressure on a particular switch can consistently produce a sight or sound that he or she has chosen is no longer a passive spectator but is engaged in an active learning process. Likewise, Dr Langdon's work as a Consultant Neuropsychologist with sufferers of chronic pain does not claim to remove the pain but rather teach methods, including the use of powerful imagery, by which patient can feel actively involved in the process of managing pain.

The objective control in the present context is to achieve the best possible quality of life (QOL). QOL has become a fashionable term with many different interpretations, ranging from those used in medical studies of outcome (in which measures of physical health and independence often predominate) to more qualitative attempts to rate the level of an individual's "satisfaction" with their daily life.

Much depends on a person's insight into the nature of the change produced by the illness - more specifically, the gap between previous hopes and future expectations. The gap may seem the more unacceptable because of the natural human tendency to retain a rosy picture of the past. Therefore, there has to be a therapeutic process of putting past achievements (and failures) into perspective and assimilating inevitable regret for the changes induced by illness. thereafter, the emphasis has to be shifted to an acceptance of the present and the creation of the new ideas and realistic plans for the future. It is easy to say or write this. Only those who have struggled with chronic disease know what a difficult undertaking this is and how little sustained support is available outside the circle of friends of family.

Focus on the future encompasses both physical and mental domains. from the physical point of view, the distinguished neurologist, W Ritchie Russell, used advise his patients to find a proper balance between alternating rest and exercise, adjusting the time spent to suit each individual. It is worth getting professional advice on exercise, eg from a good physiotherapist with clinical knowledge. Training in relaxation by an experienced practioner in the field can be helpful. Diet, without it becoming a fetish, can also contribute to a feeling of well-being. Again, control comes into play. Patients, by careful observation and systematic recording, can often discover exercise regimes, types of food, and daily activities, which particularly suit them. They may also be able to forsee variations in their condition (one patient did so by taking her temperature regularly) and so learn to adjust the daily schedule accordingly - altering partners and avoiding undue stress - another important aspect of control by prediction.

Mentally, each person has a choice of options and priorities within the restrictions imposed by illness. Priorities inevitably change. What is really important for you in life: making money, achieving promotion, helping others, enjoying books and music, savouring the natural world around you? Think of the activities which have always interested you but you never had the time for: spending more (relaxed) time with the family - especially young children, cookery, watching sport, entering competitions, sketching and painting, or giving a new look to small items of furniture. You might want to consider evening classes or an Open University course which has the advantage of giving ample time for study. without the pressure of continuous travelling. Planning for the future is a challenging experiment which can be best carried out by the individual concerned - usually with the help of family and friends. Satisfying activities may then appear to generate energy and help to deflect attention from irritating symptoms. Illness does not strike in isolation but affects families and friends. nevertheless, little attention is paid to the (sometimes exacting) role of the "carer" - partner, spouse, parent or child. In the field of head injury, this key role has begun to attract proper recognition. Where there is a compensation settlement, there are financial resources for providing extra support (domestic and social) as well as opportunities for "respite care". There is no "Defendant" to sue for the problems of lupus. All the more reason that the "carer" should be involved in medical discussions regarding the prognosis and management of illness. The he or she is in a stronger position to act as supportive companion and "facilitator" as well as to assume responsibilities comparable to those of the "case manager" for a family with a head-injured patient in their midst; sustaining a stable and permanent family unit for exploiting the facilities and opportunities provided by statutory and voluntary associations in the community. In some areas, social services may he helpful despite their serious lack of clinical experience. Voluntary groups can often be tapped for vocational and social resources. Family plans have to be shaped and tested - not too ambitiously but rather a step at a time. A feasible project that can be achieved within a reasonable period of time provides a stepping stone from which to expand and develop new ideas. The potential contribution of the person with the illness needs to be enhanced. That contribution obviously depends on background and experience and may be restricted in scale for health reasons. But activity and involvement in the lives of others can be part of the healing process. The range of possibilities is considerable . . . visiting the frail and elderly (often on their own), teaching (at home) a dyslexic adult or child, giving advice in your own field (gardening, accounting etc). In turn, the invaluable "carer" must have time and space, "time out" to meet friends, have a meal out, play a game of snooker or study. This selection of but a few "respite" activities was no doubt influenced by the fact that more women than men contract lupus. "Respite care" is essential in many families so that the "carer" can "recharge batteries": members of the extended family or close friends may step in here to provide companionship and a different kind of social stimulation from time to time. There is often a feeling of guilt when a carer leaves the side of a person with an illness. yet one psychiatrist warned us that every sacrifice may be exploited; a partial truth that needs to be faced. the "carer" must have personal space and time off, in order to make the best possible contribution to the strengthening of the family unit, to confront the challenges of a chronic illness. The problems that arise with the onset of a chronic illness are twofold; those specifically related to the physiological nature of the illness and those that are secondary to the consequences in daily-life of that illness. Physicians are mainly concerned with the primary sequelae. the individual and the family are at the heart of the secondary efectss. It is not always easy to distinguish the two. A recent study compared two groups of children with head injuries and severe burns; disorders with very different physiological causes and effects. On many aspects of cognitive measurement, the groups could not be distinguished. In other words, problems that might have been attributed to the head injury per se were probably the result of having experienced a life-threatening event with all its consequences eg long absences from school, numerous hospital appointments and physiological stress. The same question arises in relation to any chronic illness or life-threatening event; the problems that ensue may not be specific to that illness but arise from the impact of any serious chronic illness on daily life. Thus the central role of individual and family in combatting those real-life consequences must be acknowledged. My own experience in the field of head injury suggests that some individuals - whether patient or "carer" - can call upon considerable (perhaps unexpected) inner resources to create a new, worthwhile and satisfying patterns of life.