Social impactsHistorical context Skin disease throughout history has been associated with contagion and dirt. This is at least partially due to the fact that many contagious diseases had skin manifestations (e.g. the plague) so that the relationship between some skin rashes and infectivity were indeed real. It is also thought that the natural human response of scratching has evolved to ensure that humans are made aware when something unpleasant is on their skin and the scratching is a way of getting rid of it. These two facts seem to be deeply buried within the human psyche. Thus it remains a common reaction to recoil from someone who has a visible skin condition and someone who scratches may be viewed as somehow dirty or unclean. Indeed this almost instinctive response to skin disease is very often totally out of proportion to the objective manifestation of the condition. The media and entertainment industry seem to play on this deeply held ‘fear’ making the ‘bad guys’ in films appear with facial defects such as acne scars or severe burns, thus reinforcing our instinct that ‘bad’ skin equals evil and thereby of course that ‘beautiful’ skin equals good. Stigma As a consequence, people with chronic skin diseases such as acne, eczema or psoriasis may suffer ridicule and rejection. Even if this response is anticipated rather than real, an individual may choose to avoid social interactions or avoid certain activities to ensure that they do not have to face unpleasantness from others (Hong et al., 2008). Individuals may describe themselves as being stigmatised by their condition, where stigma can be described as a ‘connotation of disgrace associated with certain thing’(Allen, 2000). As this definition highlights, people with skin disease often associate it to issues of morality, in other words, there is some level of (perceived) disgrace associated with it. This may in part be due to religious teachings emphasising the impor tance of cleanliness and because of skin diseases’ association with dirt it becomes associated with Godlessness. A study looking at feelings of stigmatisation in patients with psoriasis noted six different dimensions of stigma experience, many of which echo what has already been stated (Ginsburg & Link, 1989). Those dimensions were:
In this study, different people had these experiences to different levels; however, the single factor that was most likely to predict for feelings of stigma and despair was bleeding skin. Whilst stigma may be thought of as a social construct, feelings of stigmatisation can have significant impact on psychological well-being. It was shown that a group of psoriasis patients who had felt stigmatised by people deliberately avoiding touching them, had significantly higher depression scores than a group with similar level of disease who did not feel stigmatised (Gupta et al., 1998). Disability and impairment These words are sometimes used in relation to skin disease particularly to express a level of impact that the condition has on a person. Some of the outcome measures used to document the level of impact of the disease are expressed as a disability index, e.g. the Psoriasis Disability Index. The term ‘disability’ is an emotive word and different models view it in very different ways. For example, the medical model would define disability as a lack of ability as compared to a standard or norm. It may involve a physical, cognitive or intellectual impairment, mental disorder, or various types of chronic disease. This definition focuses on what the individual cannot do because of something that society might consider an impairment (Open University, 2006). A social model of disability takes a very different view labelling disability as a disadvantage or restriction on doing things that is the fault of society and the way that it is run. Thus the focus is on the way that society is set up and as such people become disabled because of the lack of preparedness of the society, rather than any personal intrinsic factor. (Open University, 2006) When considering the disability caused by skin disease, this definition is helpful as it is so often the responses from society at large that creates a disability for the individual sufferer. An impairment (that may have once been referred to as a handicap) is when a person has an injury or an illness for a long time that makes them different from other people. Impairment does not cause disability. A piece of research carried out by Jowett and Ryan in 1985 looked at what they then labelled the handicapping impact of skin disease. This was early work looking at not only the physical, but also psychological and social burden of skin disease. Whilst the term handicap may no longer be used, this work clearly outlined how significant a range of skin conditions were on peoples’ psychological and social well-being (Jowett & Ryan, 1985). Body image Body image can be described as a subjective concept of one’s physical appearance based on self-observation and the reaction of others. Thus the image that individuals form of themselves has two parts to it, firstly how they see themselves and equally important how they perceive others reacting to them. When discussing body image, people are said to have a good or a poor body image, which in effect refers to the level of contentment that someone has with their body. Perception of body image is not necessarily related to the reality of what is before a person, for example someone with what outwardly would seem like a ‘normal’ body, may have a poor body image. Papadopoulus and Bor (1999) suggest a list of behaviours that those with poor body image might exhibit. Thus those with poor body image might:
What do these points mean with regard to someone with a skin condition? Editing social experiences means that an individual will choose to remember the unpleasant things that happen to them which in turn reinforce their beliefs about themselves. For example, someone with acne will remember how someone stared at them because this reinforces their belief that their acne is incredibly noticeable and ugly. They will not remember the pleasant instances where people smile and say hello. When someone has a skin disease they are likely to have a heightened sense of body awareness. Every day they are reminded of how their body is not ‘working’ for them because they have to treat it with creams, because it feels itchy or sore or because they have to display it to a health care professional. When parts of the skin are felt to be uncomfortable and unattractive, it is easy to forget or ignore the other parts of the body which are still normal, working well and attractive. All these factors can help to create a poor body image. Social pressures In a review article, Hong et al. (2008) outlines the many pressures that people with chronic diseases, such as eczema and psoriasis, experience. For many, family relationships are affected with families reporting that they too are negatively affected by the conditions. For adults, sexual functioning is affected with significant numbers reporting decreased sexual desire. Economic pressures Economic burden can be considered in a number of different ways. Firstly, there is a burden to the health service in terms of the amount that it costs to provide the direct care to patients. 1994 figures suggested that the costs were around 2% of the total NHS budget (Williams, 1997). New drugs (particularly the biologics) and increased levels of skin cancer are likely to mean that this figure has increased; however, they may have been offset by decre ases in the amount of care provided on an in-patient basis. Secondly, there is an economic burden to society as a whole, as people with skin disease have to take time off work and are therefore unproductive. Williams sites that skin disease was one of the most common reasons for claiming injury and disablement benefit in the period 1977–1983. Finally, the personal economic burden has not been evaluated in terms of cost. However, a US study found that around 10% of people believed that their skin condition was a handicap to them while working or doing housework (Johnson & Jones, 1985). The economic impact of eczema is discussed in Eczema. For some, the social stigma felt because of their skin disease prevents them from applying for jobs, and anecdotal reports from patients make it clear that it can be difficult to get jobs that involve face-to-face contact with members of the public. Whilst potential employers should not discriminate against employees because of their skin disease, there are still some instances where employment may be prevented because of the condition. For example, the British Armed Forces list chronic eczema, severe psoriasis and severe acne as conditions that would make a person permanently unsuitable for entry into the services. There is also a very real direct cost to patients with skin disease in terms of what they need to do to manage their condition. Thus, unless the individual is eligible for free prescriptions, costs of these can be very high especially as often 2, 3 or even more items are required. It is sometimes cheaper for individuals to buy a season ticket, where they pay a lump sum up front and then receive free prescriptions regardless of the number they need. In England, details can be found at www. nhsbsa.nhs.uk/1127.aspx and in Scotland at www.psd.scot.nhs.uk/doctors/prepaymentcertificates. html. However, the costs do not stop at prescriptions. Table 6.1 shows some of the other additional costs that someone with skin disease may incur.
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