Coping

Internal factors
The internal factors related to coping with a chronic skin disease are those personal skills and abilities that an individual has to manage their condition. The intrinsic capability of somebody to cope with a stressful situation is complex and will be influenced by previous experience and inherited tendencies. The relative importance of nurture and nature is not going to be debated here, instead attention is drawn to the importance of self-efficacy. Self-efficacy is defined as: ‘an individuals’ belief in their capacity to successfully execute a health related behaviour’ (Bandura, 1997). This concept is discussed in greater depth in Helping patients make the most of their treatment with a particular emphasis on improving self-efficacy in order to help people make the most of their treatments. However, in a more general capacity, if an individual has belief in their ability to manage their condition effectively, they are likely to feel more inclined to cope.

External factors
Typology of the disease
One of the factors that patients report as being hard to cope with about skin disease is its unpredictable nature. The typology of a disease relates to its nature, onset, course and appearance, thus a condition may be progressive, episodic or acute. A progressive disease follows a well-documented course and although the timings of the progression may not be entirely predictable, there are key indicators which allow an understanding of where the disease has progressed to. Mycosis fungoides is an example of a progressive condition. As explored in Less common skin conditions, a biopsy can determine the stage of the disease, which will then determine its subsequent progression.

An acute condition in this instance is used to describe a one off-event that occurs as a response to an external agent, e.g. a drug reaction. Although the response may be extremely unpleasant and may occur again if the individual is exposed to the offending drug, it is very clear what has caused the problem and how it may be avoided in the future.

Episodic conditions are, as their name implies, unpredictable, appearing for a time and then going away again. Most chronic skin conditions explored in this content belong in the episodic category. Psoriasis, eczema, urticaria and vitiligo are all examples of skin diseases that often seem to worsen for no apparent reason and may go into remission similarly for no apparent reason. The seemingly random nature of these conditions can make it very difficult to cope with as it is impossible to plan for special events to take place in periods of remission, as these cannot be predicted. Clearly, treatments can improve the likelihood of remission occurring, but patients will report that treatments that have once worked are no longer doing so, adding to the stress incurred by an episodic condition.

It is helpful to turn to documented patient experience to really begin to understand, how this episodic nature can impact on the psychological well-being of an individual (Kennaway, 2008). Here, Guy Kennaway describes the appearance of psoriasis on his face.

‘The stuff on my face was quick to establish itself in my life, providing a commentary on all my activities. Some things I did, like drink heavy red wine and party late into the night, it disapproved of, and it would be waiting in the morning to reprove me at its most blotchy. But it wasn’t just a party-pooping bore. Another long night on the Scotch could result in a clear complexion the next day. Above all it wasn’t predictable although I never gave up trying to second-guess it. It seemed to have a preference for some of my friends over others, appearing all over my face and neck, bright red almost pulsating with rage, in the pub with some and then calmly disappearing entirely with the departure – or arrival of others.’ (p. 6)

Treatment
Whilst treatments may physically improve the skin condition, the process of using them can in itself make the condition difficult to cope with. Topical treatments may be greasy, smelly, may irritate the skin or change its colour. Systemic therapies bring their own stressors with them. For example, light therapy requires frequent trips to the hospital and methotrexate regular blood tests along with the life-style change of not consuming alcohol. Unlike many chronic conditions where the behaviour change may involve taking an oral drug regularly, skin diseases require a commitment to ongoing application of topical treatments for an indeterminate length of time. Many patients cite the time element as a major negative impact that influences how they cope with their disease. Washing and getting dressed are not straight forward activities that take half an hour, applying of emollients and other topical products may take over an hour and may need to be done at least twice a day.


Discomfort
Skin that is affected by disease can be physically uncomfortable in a number of ways, but most commonly, patients will describe itch, soreness, tightness and pain.

Itch is associated with a number of skin conditions particularly eczema and urticaria and perhaps to a lesser extent psoriasis. It is thought to be the most common symptom of dermatologic disease (Gupta et al., 1994). It causes extreme discomfort and patients will often say they would rather have pain than live with itch. Indeed some will scratch themselves raw in order to experience soreness rather than itch. It has been rated second only to disfigurement as a source of patient distress for those with pruritic dermatoses (Gilchrest, 1982). Skin disease often provides the sufferer with a constant reminder of its presence, as humans ‘wear’ their skin it is impossible to escape from it. Whilst techniques for managing pain have improved over time, there is still relatively little development of novel ways of treating itch.

Mental health well-being
Whilst it is important to acknowledge the role of stress and coping on the experience of a skin disease, perhaps the most important focus for nurses is on enhancing the mental health wellbeing of their patients in order to help them cope with the stress of life. It is clear from all that has gone before in this section that stress can lead to a flare up or deterioration of chronic skin conditions. Whilst the mechanisms for this are complex and only partly understood, it would seem that for many conditions it is an irrefutable truth. What is also the case is that experiencing a skin condition is stressful in itself. Thus, intervening to improve mental health may improve the physical state of the skin by reducing the physiological stress responses and also by improving an individual’s ability to cope with stressful events in their lives. In this way a therapeutic objective is to break this vicious circle (see Figure 6.1).

Mental health can be viewed on a spectrum, which does not have any absolutes associated with it. For example, an individual may have a tendency towards being anxious, but not have an anxiety disorder. Helping that individual to cope better with their anxiety would, in all likelihood help to improve their mental health well-being and may in turn help them to cope better with their skin disease. An individual can be said to have a mental health disorder when their mental state interferes with their daily living. The World Health Organisation (WHO) describes it thus: ‘Mental disorders comprise a broad range of problems, with different symptoms. However, they are generally characterised by some combination of abnormal thoughts, emotions, behaviour and relationships with others.’ (WHO, 2009)

Thus, anxiety is a normal emotion that we feel when we are asked to do something that is outside our ‘comfort zone’. But an anxiety disorder includes a range of responses which become problematic. For example, most people do not enjoy being sick, but for some it becomes a phobia known as emetophobia. Most people will go through rituals of checking keys and locking windows when they leave the house; however, someone with obsessive compulsive disorder will go through elaborate, repetitive behaviours that make leaving the house difficult and time consuming.