Vitiligo: More than a skin disease

Sophie Heason and Gerry Kent University of Sheffield, UK

I feel that without vitiligo I would be a different person, my personality is trapped behind a wall of being very self-conscious about myself. My only wish is to be cured to be normal

I can now say that it [vitiligo] doesn't affect my life at all, because I won't let my vitiligo make me unhappy and neither will my family and friends let it.

Vitiligo is a disfiguring disorder in which there is a progressive depigmentation of skin. Vitiligo affects between one and four percent of the population, regardless of race or sex. Patches, also known as lesions, of white skin and hair develop unpredictably. While there is a genetic component to vitiligo, race, sex and age do not affect the incidence of the disease. The cause is yet unknown and there is no commonly used treatment. Although there are no health complications with the disease, vitiligo can have a profound psychological effect on sufferers. Kent and Al'Abadie (1996) found a high levels of distress in people with vitiligo compared to the general population. In the study described below, 44 percent of the sample reported an incident of stigma as a result of their vitiligo. However, as the above

quotes illustrate, reaction to the disorder varies and not everyone with vitiligo has psychological or social difficulties. The aim of this report is to develop an understanding of the factors that contribute to distress in people with vitiligo. After discussing theoretical issues, the results of a quantitative study will be described and discussed. The aim of the study is to test the predictions that theory follow from theoretical perspectives in this area. To understand response to vitiligo we need to look at theories from both sociology and psychology. Erving Goffman (1963) produced important work on stigma that informs us about the interaction between a marked person and their markers. Psychological research on appearance, depression and anxiety about others evaluation of ourselves informs us about how people respond to their own disfigurement and the potential of stigmatisation.

Sociological and psychological perspectives Goffman (1963) began his study of stigma by looking back at the original meaning of the word. Stigma is a Greek word used to describe a physical mark that would be placed on a person to signify them as deviant, such as the branding of slaves. Today, stigma refers to the social marks that are defined as undesirable and deviant. These marks range from physical disability, to perceived weaknesses such as mental illness, and tribal stigma - connected to race or religion. Intrinsic in the discussion of stigma is the issue of deviance. Deviance is a social process, not a static state. Therefore a person is only deviant when labelled as such. Harper (1999) showed this by highlighting the affect that culture has on decisions about acceptance of individuals. In Nepal, Antigua and Yucatan, an obese child was seen as affluent and a desirable playmate, while in the US obesity was seen as deviant and a reason for rejection. Albrecht et al (1983) found a distinct difference in response to people with physical disabilities and those with social deviance such as ex-convicts and the mentally ill. Visibility of the mark was also found to be an important factor. After comparing attitudes to people with different types of mark, Weiner, Perry and 2

Magnussen (1988) discovered that physically based stigmas are perceived as onset-uncontrollable and linked with reactions of pity and plans to help, whereas stigmas based on mental and behavioural problems are perceived as onsetcontrollable and reacted to with anger, little liking, and no plans to help. They also found that perceptions of onset controllability are open to change given appropriate information. In their experiment, information was given emphasising that the onset of mental illness is not controllable. After this, respondents' judgement and affect towards a person with mental illness in a vignette became more positive. Weiner later extended this line of research with Schwarzer (1991) asking if there are factors other than onset controllability that influence reactions to a marked individual. Onset causality was shown to be related to pity, anger and support again. Descriptions of people who actively cope with their problem received more pity and less anger than those who did not cope well. They were also attributed with a higher chance for improvement and more likely to receive important social support. What does this mean to someone with vitiligo? While vitiligo is a physical disorder, the patches can be mistaken for dirty marks, a social deviance. With its cause not widely known the individual may be blamed for their lesions. A common response is to conceal lesions, which avoids the possibility of stigmatisation, but can cause anxiety and preoccupation with the concealment (Smart and Wegne, 1999; Schmidd-Ott et al, 1999). Disclosure is a way of changing the stigma process, but is effort-full and demands excellent social skills. Even if the person does disclose the cause of the disorder and its onset is perceived as uncontrollable, does someone with vitiligo really want to be treated with pity and a desire to help? Jacoby (1994) divided stigma into enacted and felt types. An actual incident of discrimination or marking was termed enacted stigma while felt stigma is the expectation of being marked. Thirty-two percent of respondents in a sample of people with epilepsy said that they felt that their disease affected their opportunities in work, while only two percent reported enacted incidents of stigma related to work. Scambler and Hopkins (1986) found that enacted stigma is far less common 3

than felt stigma, arguing that felt stigma is no less disabling than enacted stigma as it leads to rejection anxiety and avoidance.

Stigma and appearance Immediate recognition of an individual's difference from the norm is through their appearance. Not only can appearances indicate an underlying difference but it can be seen as a source of deviance in itself. For example, a person seated in a wheelchair can be marked off as being different due to a physical disability, but the use of the wheelchair can itself be stigmatising. Research in social cognition indicates that we need categorical representations to function efficiently in a social world (Macrae & Bodenhausen, 2000). Such categorisation begins at an early age and influences intended behaviour towards visibly different people (Harper, 1999), thus initiating the stigma process. Such categorisation is not only affected by disfigurement, level of attractiveness also affects others perceptions of a person. There is a social understanding that beautiful people are good. Dion, Berschied and Walster (1972) first discussed this common finding in an important paper. They found that attractive people are judged to be more socially desirable than unattractive persons, to be perceived as having more total happiness in their lives and more success in their social and professional lives. Interestingly attractive people were not judged to be better parents than unattractive people are. This may indicate an insight that attractive people may be better received socially and reap the benefits from this, but are no different in more internal attributes such as parenting style. Subsequent research has found that attractive people are perceived as more sociable, dominant, having better mental health, and having better social skills (Fiengold, 1992) However attractive people are not attributed with particularly greater character. The beauty and goodness stereotype is intrinsic in society, and is illustrated well in the powerful and extreme world of Hollywood in which disfigurement and ugliness are related to badness, and films highly biased in this

stereotype encourage short-term favouritism to attractive people (Smith, McIntosh & Bazzini, 1999). These stereotypes have significant implications. Kerr et al (1985) used a mock trial to assess the effect of victim attractiveness and disfigurement on jurors conviction of a defendant in a car theft and resulting accident. Defendants were significantly less likely to be convicted when the victim was unattractive or disfigured. Stevenage and McKay (1999) asked professional recruitment personnel to assess personal qualities, job skills, and approval for a job based on a CV and photograph. Applicants with a facial disfigurement were perceived to be less able for the job and have fewer personal qualities and job skills. This is interesting in comparison to perceptions of people in a wheelchair who were not at a disadvantage. Perhaps this is due to the recruitment personnel being aware of equal opportunities for wheelchair users, yet not having thought about their own assumptions of a person who is disfigured. To summarise the findings of influence of appearance on others assumption, a disfigured person is less likely to be perceived as successful and more likely to be perceived as bad. Also disfigurement increases possibility of conviction in a court and decreases opportunities in the job market.

Effects of stigma on well-being The values that western society has placed on appearance and image is shown to have an effect on those who are different. Jones et al (1984) argue that labelling a person as deviant and unacceptable may influence their self-concept, behaviour, cognition and psychological health. In a study of young people with craniofacial anomalies, dissatisfaction with facial appearance was related to low global self worth, and low self perceptions of social acceptance (Pope & Ward, 1997). Altabe & Thompson (1996) described how an individuals ideas and assumptions about their body are stored in a cognitive framework called the self-schema. The schema is proposed to affect information processing a behaviour, and consequently nd affect. Beuf (1990) suggests that a person with a visible stigma may internalise 5

others' attitudes towards them and develop feelings of worthlessness. Bernstein (1990) discussed how disfigurement affects development in view of Erikson's developmental stages, with disappointment and lower levels of interaction in infancy, assumptions based on the beauty myth during childhood, and dealing with loss and a spoiled identity when developing a sense of self during adolescence. Bernstein takes evidence from studies performed on perception of strangers and generalises findings to all relationships that a disfigured person may have. Leary and Kowalski (1995) propose that self presentation is at the heart of social anxiety. A person who has strong intentions about presenting themselves in a certain way may become anxious about their ability to self present adequately, they will find obstructions to this presentation very stressful. Mark Leary has led a great deal of work in relation to social exclusion theory. He argues that humans have a fundamental motivation to be included in social groups and are gregarious by nature (Leary & Kowalski, 1995). He and his confederates argue that our ancestors who worked well in a group and who could monitor how well accepted they were, were at an evolutionary advantage over the isolated individual. Therefore, the need to belong has evolved as an inherited drive. Leary takes the argument further and states that a large proportion of social behaviour is directed at improving inclusion in groups (Leary, 1990). Leary argues that social isolation leads to loneliness, negative affect, ill health, changes in processing of social information, anxiety, and even criminality (Baumeister and Leary, 1995) The discussion has been on how stigma is a social process. The perception and behaviour of both the marked person and the marker influence the effect of stigma. In the context of a world in which there is a reaction against disfigured people a situation in which a person with vitiligo has to manage the constant possibility of exclusion by others is created. They also have to deal with their own thoughts, feelings and behaviour in response to their stigma. The aim of the study reported below was to explore the relationships between experience of stigma on the one hand, and report of how intrusive the stigmatising disorder is on the other. 6

Method Participants A postal questionnaire was sent to 680 members of The Vitiligo Society, a national charity. They had been contacted through the society magazine and returned a consent slip agreeing to participate. The questionnaires were sent in the early summer as previous research has shown that at this time people with vitiligo are preparing for revealing summer clothes and the darker skin around the patches that make the lesions more noticeable. Therefore issues related to vitiligo were in the forefront of the participants minds.

Measures In addition to demographic information (sex, age, ethnic origin, and marital status) the following measures were used.

Vitiligo Severity Scale

A scale devised by the authors based on the Psoriasis Severity Scale cited by Papadapoulos & Bor (1999) measured location and extent of body coverage of vitiligo.

The Hospital Anxiety and Depression Scale (Zigmond & Snaith, 1983)

Illness Intrusiveness Scale (Devins, 1999)

Illness intrusiveness is the main dependent variable in this study. The illness intrusiveness scale measures the degree to which a particular disorder or disease affect different aspects of life, such as social involvement, recreation and occupation. According to Devins (1999), illness intrusiveness is the effect of illness related experiences on the person's ability to engage in rewarding and valued activities. It is a mediating factor between illness and treatment on the one hand, and distress on the other. The majority of research using this concept has been with 7

patients with health threatening illnesses that require extensive treatment, such as renal failure and lupus. Devins et al (1994) found relationships between illness intrusiveness and perceived stigma and, in another study, levels of personal control (1989). Perceived stigma and lack of control over progression of vitiligo may be important factors in the effect of vitiligo on psychological health.

The Appearance Schemas Inventory (Cash & Labarge, 1996)

The Appearance Schemas Inventory (ASI) assesses appearance related cognitive assumptions such as those discussed by Altabe & Thompson (1996). Individuals scoring highly on the ASI will focus a great deal on their appearance, and its effect on interpersonal situations, will invest emotionally in their appearance and will have internalised social stereotypes of appearance (Cash & Labarge. 1996). This schema may influence processing of information related to others' reactions to one's appearance, relating to the concept of perceived stigma.

Fear of Negative Evaluation - short version (Watson & Friend, 1969;)

Watson and Friend (1969) constructed two scales to measure levels of social anxiety. The fear of negative evaluation scale measures expectation of negative evaluation and subsequent anxiety. The version used was shorter and items with reverse meaning had been excluded (Kent, 2001).

Qualitative Question re stigmatisation and coping

Four open ended questions concerning a situation in which someone had said or done something negative as a result of the respondents vitiligo and how the respondent had coped with this was also included.

Results Population Six hundred and ten valid questionnaires were returned. Seventy five percent of the respondents were women, and 90% were white. The mean age was 48 years, with 8

a range of 16-91. Ninety-seven percent of the respondents had lesions on their face or hands. Four percent of the respondents were significantly depressed and 22% were significantly anxious (scoring over 11 on the relevant scales of the Hospital Anxiety and Depression Scale).

Correlation Table 1 shows the relationships between the items in the questionnaire. It is clear that as people get older the vitiligo becomes less intrusive and anxiety and fear of negative evaluation decreases. There is a cluster of relationships between fear of negative evaluation, anxiety, depression, importance of appearance, and illness intrusiveness. People who have reported a stigmatising event show higher levels of importance of appearance and illness intrusiveness. Those with greater coverage of lesions and older people reported more experience of stigma.

Regression analysis Regression analysis indicates how much each variable contributes to level of illness intrusiveness. Forty nine percent of the variance in illness intrusiveness was explained. Table 2 indicates the variables entered into the analysis. Age, importance of appearance, depression and report of enacted stigma each made significant contributions to illness intrusiveness.

Table 1: Correlation matrix for questionnaire measures

age age ethnicity visibility area covered by lesions fear of negative evaluation (fne) anxiety depression importance of appearance (IA) illness intrusiveness (ii) marital status reported stigmatising event 0.12 -0.27 -0.14 -0.28

ethnic

vis

area

FNE

anx

dep

IA

ii

marital

stigma

0.56 0.38 0.56 0.65 0.49 0.42

0.46 0.14 0.16

0.50

0.54

0.54

-0.24

(Indicated r values have a p >.001 )

Table 2: Results of single regression of variables explaining illness intrusiveness

Variable age ethnicity visibility area covered fear of negative evaluation importance of appearance anxiety

Beta -0.202 -0.037 0.015 0.04 0.04 0.306 0.056

p value <.001 ns ns ns ns <.001 ns

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depression marital status report of stigma

0.333 -0.062 -0.117

<.001 ns <.001

Discussion Importance of Appearance The finding that people with higher levels of importance of appearance report higher illness intrusiveness supports the notion that their perceived appearance affects how much their vitiligo affects their lives. The internalisation of stereotypes is an important factor of this measure. Individuals with a disfigurement who have been stigmatised may be well aware of the findings that appearance affects how one is perceived. Although regression informs us more about the direction of the relationship, further analysis is necessary to discern if experience of stigma has mediated the relationship between importance of appearance and illness intrusiveness.

Depression It is very interesting that these data have found depression contributing to illness intrusiveness, with the absence of anxiety. The correlation shows that fear of negative evaluation and anxiety are related to depression and these may be accounted for in the depression measure. The correlation between depression, anxiety and fear of negative evaluation may partly be accounted for by the attribution and cognitive biases that occur with depression.

Age The finding that age is related to illness intrusiveness, with older people being less affected by their vitiligo supports previous research. Most of the research suggests that age is an important factor in response to impaired appearance (Kent, 2000; Ginsburg & Link, 1989; Porter & Beuf, 1988), although this is not totally consistent (Porter & Beuf, 1991). Most of the studies of people with vitiligo and psoriasis 11

found that older people are less affected by appearance impairment. Porter & Beuf (1988) found that age has a direct effect on well-being in a sample of people with vitiligo. They found that importance of appearance, self esteem, perceived discrimination and support are not mediating variables, which is surprising considering that the same authors found that age is related to perceived stigma (1991) and Ginsberg and Link (1989) found that people who are older at onset of skin disease have lower sensitivity to other's opinions, anticipated rejection and feelings of guilt and shame. This could be linked to the significant correlation found between age, fear of negative evaluation and social anxiety. Kent (2000) also found age at onset significant. Further investigation needs to be done in this study to determine if any mediating variables exist in this sample.

Report of enacted stigma. The finding that those who reported enacted stigma were more affected supports previous research by their disfigurement. There is the issue of recall and interpretation of events, in that people may have been stigmatised and not have been able to recall the event, or seen it as offensive. Those who interpret particular events as enacted stigma or have high felt stigma (not measured in this study) may have a high fear of negative evaluation. Interesting opportunities for further study.

Race These findings indicate that ethnic origin is not related to illness intrusiveness, supporting previous research. Porter & Beuf (1991) compared the effect of race on reaction to stigma in people with vitiligo. They found that race is not related directly to degree of disturbance, but may be mediated by perceived stigmatisation (with higher scores in black people) importance of appearance (with higher scores in women and white people) and self-esteem in which there was no variation by group in the sample. Porter & Beuf (1988) found that race has no direct significant effect on psychological disturbance, only operating indirectly through importance of appearance and perceived discrimination. This relates to Kents work (1999) that 12

found that race was related to perceived stigma. Further analysis of this data will discern the role of ethnicity as a mediating variable.

Appearance and concealability The finding that visibility and extent of vitiligo lesions are not related to illness intrusiveness contributes to a body of research with mixed findings. Some research with people with different skin diseases suggests that visibility and appearance of the disease are important. Jowett and Ryan (1985) found that a fifth of eczema sufferers said that the physical appearance of the disease was the worst aspect of the condition. In the same study the majority of acne sufferers said that the worst aspect of the disease was the appearance and their subsequent lack of selfconfidence. Porter & Beuf (1988) reported that people with lower severity vitiligo were less likely to be disturbed by the disease. They found that those with higher severity are more likely to perceive discrimination, and therefore to have increased psychological disturbance. Porter & Beuf (1991) found that visibility is not directly related to disturbance, but indirectly by its effect on perceived stigmatisation. The role of visibility and extent of vitiligo lesions in illness intrusiveness is not clear.

Conclusion The sample used in this study does have its limitations. The problem of representing the general population is clear in the imbalance between numbers of men and women, and the lack of representation of non white people is difficult to resolve. Further limitations are in the recruitment of respondents in that they are all members of the Vitiligo Society. Time between sending and return of the questionnaire did not significantly affect scores on any of the variables. It is clear from this study that a person with vitiligo must cope with more than their skin disease. A high proportion of the sample reported the experience of enacted stigma along with heightened anxiety. The influence of social categorisation and societal assumptions about appearance is twofold in this situation. The first influence is on the fact that markers view disfigurement as a 13

stigma. The second, and internal, influence is that it there seems to be a relationship between the degree to which a person with vitiligo has internalised these stereotypes (importance of appearance) and the intrusiveness of their illness into everyday activities. This reinforces the process model of stigma that Goffman originally proposed. There are two explanations for the finding that illness intrusiveness decreases with age, and the negative correlation between age, fear of negative evaluation and anxiety. Either the person changes their perceptions of the world and their mark with time, or a longer life has allowed more time to develop a useful repertoire of coping behaviours. The former explanation would be supported by a negative correlation between age and importance of appearance, but this was not been found in this study. The latter explanation is supported by research in coping behaviour and is certainly promising. Future research that may clarify the issues raised in this study would examine importance of appearance with more depth; perhaps a qualitative methodology would be more suited. Also research in the coping process and applying the coping research to ageing would be useful. The relationship between depressed mood and illness intrusiveness opens up more issues. The influence of depression on cognition may be related to interpretation of events of stigma. Also the cluster of correlations between anxiety, fear of negative evaluation, importance of appearance and depression leave questions about moderating and mediating variables. These can be explored through further analysis. The fact that experience of stigma affects illness intrusiveness is to be expected. This is a huge social problem. The tackling of the values in society that lead to stigmatisation of people who look different is well beyond the scope of this paper. Some research has been done on the education of young people before a disfigured child joined their class. The findings were promising. Perhaps a more realistic way to reduce intrusiveness in people with vitiligo is to support them in exploring and using effective coping strategies.

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Goffman, E. (1963) Stigma: Notes on the Management of Spoiled Identity, Englewood Cliffs, NJ: Prentice Hall Harper, D.C. (1999) Social Psychology of Difference: Stigma, Spread and Stereotypes of Childhood Rehabilitation Psychology , 44 (2): 131-144 Jacoby, A. (1994) Felt versus Enacted stigma: A Concept Revisited. Social Science and Medicine, 38 (2): 269-274 Jones, E. E., Farina, A., Hastorf, A., Marcus, H., Miller, D. & Scott, R. (1984) Social Stigma: The Psychology of Marked Relationships . NY: WH Freeman Jowett, S. & Ryan, T. (1985) Skin disease and handicap: an analysis of the impact of skin conditions. Social Science and Medicine 20 (4): 425-429 Kent, G. (1999) Correlates of Perceived Stigma in Vitiligo Psychology and Health, 14: 241-251 Kent, G. (2000) Understanding the Experiences of People with Disfigurements; an Integration of Four Models of Social and Psychological Functioning Psychology, Health and Medicine, 5 (2): 117-129 Kent, G and Al'Abadie, M. (1996) Psychological affects of vitiligo: A critical incident analysis. Journal of the Academy of Dermatology , 35 (6): 895-898 Kerr, R., Bull, R., MacNoun, R. & Rathborn, H. (1985) Effects of Victim Attractiveness, Care and Disfigurement on the Judgements of American and British Mock Jurors Journal of Social Psychology, 24: 47-58 Leary, M. (1990) Responses to Social Exclusion: Social Anxiety, Jealousy, Loneliness, Depression and Self Esteem Journal of Social and clinical Psychology , 9 (2): 221-229 Leary, M. & Kowalski, R M. (1995) Social Anxiety . Guildford Press. New York Macrae, N. and Bodenhausen, G.V. (2000) Social Cognition: Thinking Categorically about Others Annual Review of Psychology, 51: 93-120 Papadopoulos, L. & Bor, R. (1999) Psychological Approaches to Dermatology. Leicester, BPS Books.

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Pope, A.W. & Ward, J (1997) Self Perceived Facial Appearance and Psychosocial Adjustment in Preadolescents with Cranofacial Anomalies Porter, J. & Beuf, A.H. (1988) Response of Older People to Impaired Appearance: The Effect of Age on Disturbance by Vitiligo Journal of Ageing studies , 2 (2): 167-181 Porter, J. & Beauf, A.H. (1991) Racial Variation in Reaction to Physical Stigma: A Study of Degree of Disturbance by Vitiligo Among Black and White Patients Journal of Health and Social Behaviour, 32: 192-204 Porter, J., Beauf, A., Lerner, A. & Norlund, J. (1987) Response to cosmetic disfigurement: Patients with vitiligo. Cutis, 39: 493-494 Scambler, G. & Hopkins, A. (1986) Being epileptic: Coming to terms with Stigma Sociology of Health and Illness, 8: 26-43 Schmidd-Ott, G., Kuensebeck, H.W. Jaeger,B., Werfel, T., Frahm, K., Ruitman, J., Kapp, A. & Lamprecht, F. (1999) Validity Study for the Stigmatisation Experience in Atopic Dermatitis and Psoriatic Patients Acta Dermatologica Venereologica, 79: 443-447 Schwarzer, R. & Weiner, B. (1991) Stigma Controllability and Coping as Predictors of Emotions and Social Support. Journal for Social and Personal Relationships, 8: 133-140 Smart, L. & Wegner, D.M. (1999) Covering Up What Can't Be Seen: Concealable Stigma and Mental Control Journal of Personality and Social Psychology, 77 (3): 474486 Smith, S.M., McIntosh, W.D. & Bazzini, D.G. (1999) Are the Beautiful Good in Hollywood? An Investigation of the Beauty and Goodness Stereotype on Film Basic and Applied Psychology, 21 (1): 69-80 Stevenage, S.V. & McKay, Y. (1999) Model Applicants: The Effect of Facial Appearance on Recruitment Decisions British Journal of Psychology, 90: 221-234 Watson, D. & Friend, R. (1969) Measurement of socio-evaluative anxiety. Journal of Consulting and Clinical Psychology , 33 (4): 448-457. Weiner, B., Perry, R. and Magnussen, J. (1988) An Attributional Analysis of Reactions to Stigmas Journal of Personality and Social Psychology , 55 (5): 738-748

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Zigmond, A.S. and Snaith, R.P. (1983) The Hospital and Anxiety and Depression Scale. Acta Psychiatra Scandinavica 67: 361-370

Sophie Heason is a Ph.D. research student in the Psychology Department at The University of Sheffield. Sophies main field of research is health psychology; with interests in disfigurement, body image, coping processes, social anxiety and depression, and stigma. Her previous research includes social networks in people with learning disabilities and applied work with people with learning disabilities and challenging behaviour. Gerry Kent is a senior lecturer in Clinical Psychology at the University of Sheffield. He has a range of interests within health psychology, but they centre around the effects of illness on social and psychological well-being. Email address: s.heason@sheffield.ac.uk

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