What is a visible difference?

A visible difference or disfigurement can result from:

• Skin conditions, for example: Birthmarks, vitiligo, acne, ichthyosis, eczema, or other conditions that affect the texture of the skin, such as neurofibromatosis and epidermolysis bullosa.
• Scarring resulting from an accident, surgery or burn.
• Medical treatments, for example hair loss, skin or weight changes as a result of chemotherapy, radiotherapy or steroid therapy.
• A condition that has been present from birth, such as a cleft lip or other craniofacial condition.

The psychosocial impact of a visible difference

Recent figures estimate that in excess of 1.3 million people in the UK have a significant disfigurement to the face or body (Changing Faces; 2010). At least one in 500 young people under 16 have some form of visible difference (Office of Population Censuses and Surveys; 1993), including birthmarks, burn scarring, skin conditions such as vitiligo, acne, eczema and psoriasis, cleft lip and palate and other craniofacial conditions. In addition there are around one million presentations to hospital for treatment associated with some form of facial injury as a result of accidents, falls or assaults (Cartwright & Magee; 2006)

Although many adjust well, some individuals struggle to come to terms with their visible difference and irrespective of whether present at birth or acquired later in life, their appearance can have a profound psychological and social impact (Rumsey & Harcourt; 2007). This is particularly the case during adolescence, a critical developmental stage characterised by physical, social and sexual challenges, during which the majority of young people become acutely aware of their body. Appearance becomes central to their self-esteem and to their relations with peers (Coleman & Hendry; 1999, Harter; 1999, Holmbeck; 2002).

Appearance is also a highly sensitive and private subject and one which many young people are reluctant to raise as a concern with adults; particularly those with the perception that their concerns will be minimised or disregarded as trivial or vain and secondary to issues of physical well-being or even survival (Williamson et al; 2010). Health professionals who are aware of the potential psychosocial impact of a visible difference therefore have a vital role to play in validating and de-stigmatising appearance concerns among their patients. By being proactive and providing opportunities to discuss appearance, they can encourage their patients to express and identify their appearance–related worries and if necessary help them access specialist support.

Although the range of psychosocial difficulties experienced by those with a visible difference may vary from condition to condition, there are more similarities than differences. Common difficulties are discussed below.

Social discrimination and stigma

We live in a culture that values beauty, places a high degree of importance on appearance and has a tendency to mock or denigrate those deemed unattractive. Those who have assimilated these cultural norms into their own belief system are likely to find it difficult to accept their visible difference (Rumsey; 1997) and many of the problems faced by young people with a visible difference are related to social situations and their experience of discrimination and stigma.

For example, attractive children have been found to be more popular with their peers (Dion et al; 1972, Boyatzis et al; 1998) and perceived by others, including teachers, to be more intelligent, friendly and successful than those with visible differences (Richman & Harper; 1978). Some young people with visible differences have fewer friends, academically underachieve and have fewer vocational aspirations compared to their peers (Kish & Lansdown; 2000). Many report negative reactions to their appearance by other people, such as staring, pointing and whispering, receiving unsolicited questions or comments. Some experience teasing, bullying and being avoided or rejected by their peers or their own family - who may find it difficult to adjust to their appearance and the social consequences of their child's difference (Beuf; 1990, MacGregor; 1990, Pruzinsky & Doctor; 1994, Hearst & Middleton; 1997, Gilbert & Thompson; 2002, Rumsey et al; 2004).

Permanently on public display

Staring from members of the public is one of the most common problems experienced by those with a visible difference (Rumsey et al; 2004) and is frequently combined with unsolicited questioning or comments about appearance, often in inappropriate settings. Members of the public may also feel the need to offer words of pity or sympathy for their plight or alternatively advise the person that their appearance is not actually that noticeable (Partridge; 1994). Again these comments are usually unsolicited.

Responses such as staring or questioning are not always intended to cause distress or offence (Bernstein; 1976). They can result from a lack of understanding about disfigurement and reflect concern or curiosity and a desire to seek explanation for the cause of the visible difference, or the individual's past experiences of treatment and treatment intentions (Partridge; 1994). But, irrespective of the motives behind these public responses, they can increase an individual's sense that they are permanently on public display, heightening feelings of self-consciousness and negatively impacting upon self-confidence.

Similar difficulties can arise as a result of "institutional gaze", a term used to describe an individual's experience of the intense scrutiny and constant involvement of health professionals in their lives (Hearst & Middleton; 1997). For example an individual who has scarring as a result of a road traffic accident, may undergo numerous surgeries over a long period of time which requires repeated trips to hospital and multiple assessments. This can be even more intense in the case of individuals with craniofacial abnormalities, who may undergo assessments and surgery over many years. This regular and repeated focus on the 'difference' may be unwelcome.

Psychological distress

Being labelled as 'different' and experiencing social discrimination can have a wide variety of negative psychological consequences. Individuals may experience anxiety, depression, and low self-esteem. Some can feel angry about the reactions of others or angry and resentful that they have a visible difference or an appearance-altering condition (Kent; 2000, Newell & Clarke; 2000, Kent & Thompson; 2002, Lawrence et al; 2006, Blakeney et al; 2008). Making friends and integrating into new and extended peer groups requires social competence and self-assertion which can be difficult for the individual who has low self-worth (Hearst et al; 2008) and self-imposed social avoidance or social rejection can lead to feelings of isolation from their peer group and wider society (Williamson et al; 2010).

Body image dissatisfaction

'Body image' refers to an individual's perception of how they look (Schilder; 1935) and is affected by an individual's emotions, attitudes and cognitions (Slade; 1994). According to Higgins' (1987) self-discrepancy theory, there are three components to body image:

• Actual self (one's objective appearance)
• Ideal self (how an individual would like to look)
• Ought self (how one feels they ought to look).

For any individual, irrespective of whether they have a disfigurement, a discrepancy between the ideal self (body ideal) and the actual self can lead to body image dissatisfaction, low self-worth and distress (Altabe & Thompson; 1996, Rumsey; 1997). For those with a congenital or acquired visible difference, the risk of body image dissatisfaction is greater because their actual self may not match up to social norms (Gilbert; 1997) or, for those with an acquired difference, because their actual self no longer resembles their self-schema: their internal perception of how they think they look (Moss; 2005).

These outcomes will very much depend on the content and organisation of the individual's self-concept (Moss & Carr; 2004). If an individual values appearance highly and invests a lot of time and energy in their looks whilst investing less in other aspects of themselves, they are more likely to experience body image dissatisfaction and distress associated with having a visible difference (Lawrence et al; 2006).

Avoidant behaviour

Fear of negative reactions to their appearance by other people can lead to increased social anxiety (Lovegrove & Rumsey; 2005, Langley et al; 2005). Social anxiety can then distort the focus of their attention and interpretation of events (Rapee & Heimberg; 1997). This can result in a heightened awareness of negative reactions, a tendency to look for and attend to such responses and heightened sensitivity to any reactions that may be perceived as negative (Kent & Keohane; 2001).

Newell's (1999) fear avoidance model suggests that if an individual finds that they can successfully reduce their anxiety by removing themselves from the anxiety-provoking situation, this (avoidant) behaviour will become reinforced and will be more likely to be used again in the future if the individual fails to manage their anxiety. This avoidant behavioural response can lead to self-imposed social isolation (Kent; 2000).

The impact of the severity of a disfigurement on adjustment

Many assume that the degree of severity or visibility of a disfigurement predicts the extent of psychological distress; that those with a minor disfigurement, or those with conditions that are not very noticeable, will probably adjust more effectively to their appearance than those with a major disfigurement. However, research consistently finds that this is not the case. An individual's subjective assessment of how noticeable the difference is to others tends to be a far better predictor of distress (Moss; 2005). In fact some research has suggested that those with more noticeable differences can learn to adjust more positively, because the responses of others tend to be predictable and individuals know what reactions to expect - they are therefore forewarned and prepared.

In contrast, for those whose visible difference is not always noticeable, perhaps because the condition can flare up or subside over time (for example skin conditions, such as psoriasis or eczema), the unpredictable nature of others' reactions can make it difficult for them to adjust to their altered appearance (MacGregor; 1990, Lansdown et al; 1997).

Rather than relying on objective clinical assessments or personal judgements made by clinicians, it is therefore important to routinely ask young people how they judge and feel about their appearance.

Camouflage and concealment of visible differences

Evidence also challenges the assumption that coping strategies involving the concealment or camouflaging of visible differences are always beneficial. Although they may have short-term benefits, particularly for those with temporary appearance changes (for example during cancer treatments), reliance on these techniques can reduce the likelihood of the individual developing alternative adjustment strategies. They can also increase anxiety and worry about the reactions of others should their difference be accidentally or unavoidably exposed (Coughlan & Clarke, 2002).

Forming romantic relationships

The formation of romantic relationships is considered to be one of the most important developmental experiences during adolescence (Sullivan; 1953). Healthy adolescent romantic relationships improve self esteem, are a source of emotional support, help develop interpersonal skills and self identity, improve social competence and promote peer relationships (Barber & Eccles; 2003; Zimmer-Gembeck et al; 2001). All young people worry about developing romantic relationships to some extent. But, for those with a visible difference, social anxiety, poor social communication, low self-esteem plus a negative perception of body image and perceived attractiveness, can often inhibit their ability to develop relationships and can make it difficult to allow or enjoy intimate encounters (Dion & Dion; 1987, Bogaerts & Boeckx; 1992, Tindle et al; 2009). Fear of rejection by their partner can result in young people concealing their difference to hide their condition from their partner, or engaging in avoidant behaviours to avoid intimacy altogether (Fox et al; 2007, Magin et al; 2010).