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Vitiligo research and vitiligo surveys

Imagine something very personal and precious being taken away from you a little bit at a time. You are not in control of when it goes and cannot argue about the amount removed (Guardian, 2001)

I feel this statement aptly introduces my dissertation topic. Not only does it describe the feelings of the people being studied but also when reading it we are unaware of the subject, reflecting the lack of knowledge surrounding the topic.

The dissertation wishes to explore the experiences of people with vitiligo.

 

What is vitiligo?

Vitiligo is thought to affect 1-4% of the population in every country around the world, and is indiscriminate of race, sex and age. It is a skin disease which causes areas of the body to progressively lose colour, leaving patches vulnerable to sunburn. This can occasionally lead to total loss of colour all over the body. These patches of skin lack melanin, which is the substance that gives the skin its colour and enables it to tan in the sun. This means vitiligo patches have no natural protection against the sun's rays because the skin's pigment is not active. In this way pigmented areas, when tanned through exposure to the sun or through natural skin tone, contrast to the white appearance of vitiligo skin. The spread and pattern of its development is unpredictable, but common sites of pigment loss include the face, hands, groin and hair (The Observer, 2002).

The causes of the condition are not yet known, but many theories persist. One such argument claims that the body's own immune system sees pigment cells as foreign bodies and attacks them, while others believe environmental factors, such as viral infections and damage to the skin may be the cause. However, most weight is persistently placed on theories of a genetic nature. This claims that more than one gene may contribute to the development of vitiligo, meaning that you may have to inherit a particular set of genes in order to be able to develop the condition (Lesage, 2002).

Despite that over half a million people in Britain alone suffer from vitiligo, it receives little recognition from health professionals, because it is not painful, life-threatening nor infectious. This means it is classed as mainly a cosmetic disorder, even though darker skin suffers greatly from its disfiguring signature, as well as white skin, and can be extremely distressing for both.

Since vitiligo is little known in society, it is also an under-developed area in sociology. Few studies have focused on this topic, with many originating from the psychological discipline producing a gap in sociological literature This dissertation aims to reduce this gap and educate of the experiences the condition may cause. It is also of personal interest to me because I have vitiligo and am well aware of the lack of knowledge about it, not only in society as a whole, but also in the medical profession.

 

Outline of Research Questions

My main research question seeks to exhibit the kinds of experiences vitiligo sufferers encounter to enhance knowledge of the condition, and so asks:

What kind of experiences do vitiligo sufferers encounter?'

This can be split into four relating questions to establish a range of experiences that can be provided to answer the research question.

How do factors of age, sex, skin tone and the severity of vitiligo affect the likelihood of stigmatised encounters?

This question seeks to illustrate the kinds of negative experiences people may have been subject to. Also, the factors which may contribute and maybe significant to the frequency of such encounters.

Are issues of concealment and avoidance important to the experiences of individuals with vitiligo?
This strives to determine whether the condition plays an important role in people's daily practice and routines. Also, how people may hide or camouflage the condition, and why they may do this.

As the visibility of vitiligo is very much affected by exposure to the sun for many, how important is the onset of spring and summer for individuals?

As a condition which is determined by pigmentation, or lack of it, I felt it was important to discover whether seasons were significant to individuals. Summer is a time when countries are at their hottest and sunniest, when people tend to wear less clothing and expose their bodies more fully. So, we can question whether this makes spring and summer different experiences for individuals with vitiligo.

 

What are the implications of the lack of knowledge about vitiligo?

This explores the knowledge society has of the condition, and the repercussions any false views may project on to the individual. A lack of knowledge may also be seen when looking at the medical field, as they class vitiligo as a cosmetic disorder. Therefore, it is important to explore the role of doctors as a source of information and help.

The dissertation adopts a broad scope since this type of literature is necessary when approaching a gap of knowledge. The aim is therefore to generate information which captures the experience of living with vitiligo. This approach assumes the condition carries a stigma because it is an attribute which categorises an individual as different, which will be further explored in the literature review.

 

Literature Review

Vitiligo is an under-developed area in sociological literature. Therefore it is necessary to construct a background from other related areas in sociology. These centre round issues of skin, stigma and impairment. I felt it was important to illustrate the essential role the skin plays for individuals and consider the consequences this may have for those with vitiligo. Despite limited research on vitiligo, knowledge can be gained of the types of experiences one may encounter by considering other impairing conditions, such as acne (Hawkesworth, 2001). This helps to compose a background literature of other stigmatising conditions, and so Goffman's Stigma' is also an essential reading to be considered.

 

Skin Literature

The skin, like a cloak, covers us all over, the oldest and the most sensitive of our organs, our first medium of communication, and our most efficient of protectors (Montagu, 1971: 1).

Montagu, in this statement, comments on why the skin is important to people biologically, but also socially. As the largest organ of the human body it covers us all over'. As the most sensitive' it is susceptible to disorders. As our first medium of communication' it is judged aesthetically. As our most efficient of protectors' it is the body's private police force (Ahmed, 1998: 49), but despite its unique factors, it cannot protect us from the social effects appearance impairing stigmas can cause.

Most of us take our skin for granted, but for vitiligo sufferers it can be a source for apprehension, unease and embarrassment as Kent (1999, 2000) portrays later. Here we will explore the importance of skin to highlight why skin disorders can carry stigmas, and why others may label such conditions as vitiligo as deviant from the norm.

The attributes of the skin, as stated above, construct this organ to be a marker of health and well-being, and so is fetishised' as a representation of these qualities. It is marked by differences and separates bodies from one another as distinct. Ahmed (1998) discusses what the skin signifies for the possessor and the observer. For instance, woman's skin signifies femininity and is judged as a commodifiable sign of her body-value , going on to say the danger of disease, aging, sunburn and various ailments points to the gap between the skin and (her) well-being (1998: 51).

Ahmed also focuses on the issues of tanning as a signifier of healthy bodies. Acquiring the golden tan leads to attaining the characteristics of hygiene and cleanliness, which it symbolises. In relation to black and white skin, colour, in this sense, is treated as an adornment, claims Ahmed, which reflects the moral purity' of the white woman. So, what connotations does this have for vitiligo?

Although Ahmed does not discuss vitiligo in her piece she provides us with an account which raises important issues about how the skin is read by others, its implications and matters of tanning, which directly relates to the visibility of vitiligo. It highlights the importance of the skin as a medium of communication' as it is essential to how one is viewed by others. It is these judgements and views of society that may categorise skin as impaired and stigmatised. Goffman (1963) exhibits the basic theories and ideas of stigma, and its repercussions for the individual.

 

Stigma Literature

Erving Goffman (1963) refers to stigma as a special kind of relationship between an attribute and a stereotype, which society labels as deviant. Stigma is based on the conceptual basis that what constitutes difference, or deviance, is produced by society's rules and sanctions, and labelled (Jacoby, 1994). He argues this can be split in to three types. Firstly, are abominations of the body, which include various physical deformities; secondly, blemishes of individual character consisting of such characteristics as homosexuality; and finally, tribal stigma, which can be aspects such as race, religion or nation (Goffman, 1963: 14). According to this view vitiligo would be categorised as the first stigma mentioned. However, this seems a harsh way to describe the condition, which is why Goffman's argument of societal views are also important to consider. This claims stigmas are seen as such because society member's catalogue individuals and attributes to be normal and natural, so those who fall outside these are labelled as deviant and stigmatised.

For the stigmatised, issues of acceptance are central. When unsure and self-conscious of how they will be received and identified, attempts may be made to correct what is seen as a failing, which he terms a transformation of self'. In relation to vitiligo, Kent (1999, 2000) claims sufferers use practices of concealment, such as the use of camouflage make-up. Furthermore, Goffman exhibits the idea of avoidant behaviour. He argues that in anticipating contact with normals', the stigmatised arrange their life so as to avoid such situations. Kent sees vitiligo sufferers to pass up certain social activities because of their condition, thus reflecting Goffman's argument. However, in failing to disguise a stigma, Goffman claims that strangers feel free to approach the stigmatised and question them out of morbid curiosity'. These encounters can be seen as enacted' or felt' stigma. Jacoby (1994) portrays these differences in relation to people with epilepsy suggesting that enacted stigma refers to cases of discrimination against epilepsy sufferers on the grounds of social unacceptability. Alternatively, felt stigma refers to the shame associated with being epileptic and the anxiety of enacted stigma, therefore emphasising the acceptability of stigmatised groups. These scenarios frequently lead to adoption of categories that misfit the person, and uneasiness becomes paramount, claims Goffman. Gardener (1991) follows Goffman's view when discussing the norms and constraints of public places.

Gardener's argument claims that an individual seeks to minimise visibility of the stigmatising characteristic in order to enter public space. This is illustrated by Gardener when saying that the hearing-impaired will sign smaller than usual when among hearing people (1991: 258). This results in radically different experiences of public places for the stigmatised groups, as a place of self-consciousness and unrest. Gardener concludes that it should be taken as priority to present the experiences of the stigmatised groups, to which I fully agree and aim to capture. Hawkesworth (2001) complies with this need when discussing acne sufferers.

In arguing The greatest barriers to disabled people's inclusion in Western urbanised societies are often in the human-constructed environment which serves to exclude those whose bodily forms do not accord with specific conceptions of the normal body (2001, 299), Hawkesworth provides us with a powerful analysis of Western societal views of physical appearance. In relation to acne, sufferers find it difficult to acknowledge and talk about their condition, similarly to Kent (1999). Furthermore, in compliance with Gardener and Goffman, she claims that shame and embarrassment caused by impairment can often lead to detachment from mainstream public space. This led some to hold back in daily spatial practices, such as paid work, argues Hawkesworth, while some women ruled out marriage because of the skin disorder. It becomes apparent that this was because certain situations like weddings, parties and job interviews, when an individual felt they needed to project a particular identity to attract others, saw individuals perceiving their spots and scars to be their defining feature. This is conveyed by Bull and David (1986) who suggest that facial attractiveness leads to more positive reactions from others. This is due to the fact that there are certain assumptions about presenting a clean pure appearance, says Hawkesworth. These are derived from the stereotypical visual images which create aesthetic appeal of sexuality, desirability and other values of femininity promoting ideals of restrictive flawless images (Hawkesworth, 2001; Ellis, 1998). However, as Goffman argues, stigmatised groups in society attempt to conceal their flaws, which may heighten acceptability.

Similarly, to the vitiligo sufferers Kent (1999, 2000) refers to, Hawkesworth's study shows how acne sufferers conceal their condition with make-up or related tactics which would normalise appearance. However, the embarrassment and shame that sufferers feel because of their condition still prevail. The commonly held expectation that the female face must appear smooth and free of blemishes or marks leads to actions of self-consciousness, such as covering their face with hands or hair. Therefore, Hawkesworth portrays that individuals with acne often experience changes in spatial practices or bodily movement because of society's aesthetic prejudices towards the disfigured. However, the focus of this study centres round women's experiences and the consequences acne has on femininity, therefore excluding male representations. Despite this, Hawkesworth shows how skin disorders may have a major impact on an individual's quality of life (Finlay and Coles, 1995). However, Ellis (1998) sees skin disorders such as acne and psoriasis as minor bodily stigmas'.

For Ellis, minor bodily stigmas refer to the small imperfections that make individuals conscious that they may be rejected or noticed, but are rarely severe enough to become the focus of attention. She suggests that these may be imperfections such as acne, baldness, lisping, body odour and limping, which are not necessarily detectable at all times, nor do they act as master statuses. Again similarly to Goffman's ideas of stigma, she suggests many develop coping mechanisms of concealment, but adds that efforts more formal and collective, such as formations of support groups, are infrequent. This claim by Ellis could be seen as misguided when considering that although she suggests skin disorders are minor bodily stigmas, individuals have formulated support groups for sufferers, like the Vitiligo Society, therefore confusing and discrediting Ellis' view. Also, in consideration of Hawkesworth's study of acne sufferers, it is possible to criticise Ellis' claim that as a minor bodily stigma, acne rarely becomes the focus of another's attention. This is because Hawkesworth illustrates how one can be conscious of their appearance, so much so that it may stop participation in social activities. However, Ellis does illustrate an essential point when considering the varying degrees of importance that people place on their minor bodily stigmas. She argues that what may be minor for one, may be major for the next and nonexistent for the third, varying with age, gender, ethnicity and across international situations (1998: 525). She adds that frequency and type of comments are key in dictating this, as Goffman also argues when stating that acceptance is central for the stigmatised individual. This aspect of society's involvement in producing the self is furthered when considering Rosenberg 's view of self-image.

Rosenberg (1965) claims that an individual's self- concept is not purely non-objective, but is the product of the information gained through social experience. In other words, the nature and influence of social experience shapes who we are. For instance, the experiences of family life, social class and religion each impose a lifestyle which forms values, beliefs and ideals which provide the basis of self-judgement. Therefore, this relates to Goffman and Ellis' view that interaction and experiences with society members shape our view of our selves, as well as the views others have of us. In terms of conditions such as vitiligo, society may come to think of the condition as deviant by seeing how this plays a part in one's life.

Williams (1971) in Disease as Deviance' suggests there are two ways in which a person who is ill or has a disease may be defined as deviant'. Firstly, he claims that this happens when impairment becomes permanent, and the person is forced to abandon their social position and act within the limitations of that condition, ultimately altering self-concept. Secondly, this happens when the impairment becomes defined as a stigma. This stems for the Ancient Greek view that if a person had a physical disfigurement this was taken as a sign that the person was morally and religiously inferior. Therefore, similarly to Goffman, he states that stigma reflects the deviance that society places upon an individual's characteristic. In relation to skin disorders, like vitiligo and acne, Kent (1999, 2000) and Hawkesworth (2001) have exhibited that persons may alter their behaviour and avoid certain activities because of their appearance. Vitiligo is also a permanent impairment as there is to date no cure. Thus, should we view these as deviant? Or is this view taken because of public ignorance?

Scambler and Hopkins (1986) discuss the knowledge society has of epilepsy and how these shape thoughts about the condition. They suggest that the public are ignorant about what epilepsy is which produces negative attitudes, making sufferers prone to discrimination. This knowledge of epilepsy, they claim, stems from occasional encounters with sufferers, the media and witnessed seizures. This produces categorisations which misfit the truth of such groups, as Goffman suggests in Stigma'. Therefore, by educating society about different conditions and the experiences of sufferers may reduce discriminatory action which is based on misguided knowledge.

Such literature provides us with a basis for understanding how impairing conditions as vitiligo may affect the individual, their lifestyle and experiences. Deeper understanding can also be achieved through analysis of the small amount of research on vitiligo, as well as discussions presented in newspapers and the like.

 

Vitiligo Literature

Research into the social aspects of vitiligo is limited. From this minimal amount, the disciplines of sociology and psychology provide background to the research in highlighting central points. Since the psychological literature is within the sphere of social psychology it is worth noting as it discusses issues of stigma, concealment and self-esteem.

The stigmatised are those whose attributes are labelled as deviant by others (Goffman, 1963). For instance, McNeil Jr. in the New York Times (2003) discusses the story of a young boy with vitiligo. This tells how classmates called him weird' and mocked him because of his appearance, and so illustrates the importance of others perceptions. Kent (2000) sees this influence of a second party as a prominent issue in his analysis of the social and psychological functioning of those with vitiligo.

He suggests that individual concerns about appearance begin with a triggering event. This event increases visibility of the condition, leading to unwanted exposure making an individual feel socially threatened. For instance, the onset of spring sees pigmented areas increase in colour with exposure the sun, making the contrast between pigmented and depigmented skin more visible. With such an event, the reactions of a second party were prominent enough to trouble the individual. This led to felt stigma, which, as argued above, refers to the indignity associated with the condition, and the anxiety of enacted stigma. Individuals felt excluded and rejected, consequently experiencing heightened embarrassment and self-consciousness. Such a feeling prompted impression management', claims Kent , through practices of concealment and avoidant behaviour, as discussed earlier, similarly to Goffman. The consequences here are reduced visibility of the condition and declining possibility of further exposure. These findings seem to echo Kent 's earlier work on vitiligo and stigma.

Kent (1999) claims vitiligo sufferers control information which they disclose about themselves to others, as Goffman also suggests. Furthermore, claims are made that perceived stigma was significantly related to the extent vitiligo affected social activities. However, no mention is made of what social activities, or social situations, may, or may not, be avoided which is an aspect I wish to explore in my research. More problems consistent in Kent 's work can be highlighted.

Kent clearly states that his findings may not be typical of the experiences of all vitiligo sufferers because the sample is taken from members of the UK Vitiligo Society alone. This restricts participants to a population who were sufficiently concerned about their condition to join the society, and so is biased and cannot be generalised. On the other hand, my research invited members and non-members of the Vitiligo Society, since access to the website was open for all. In other words, it was not necessary to be a member to find out about the research, whereas for Kent 's, membership was a compulsory requirement. In addition, this included those who viewed the request for help on the American Vitiligo Support website whose members range from all over the world. Here the notice was spotted by the administrator of a further Italian vitiligo website who translated the questionnaire and placed it on to the forum, so Italian groups were also accessed. This creates a sprawl of international participants describing their experiences, which Kent fails to achieve in his research. However, Kent 's research is useful in enhancing knowledge of the social and psychological aspects of vitiligo, and in raising concerns of the effects of stigma upon an individual. Porter and colleagues (1988, 1990, 1991) provide background with a more sociological outlook.

Such sociological understandings of vitiligo focus round aspects of race, age and effects on sexual relationships. Porter and Beuf (1988) analyse the responses of older people to the appearance impairing condition which raises central issues about the importance of appearance when considering the experiences of vitiligo sufferers. Porter and Beuf claim older patients are better adjusted to such impairing conditions as vitiligo, since they had more experience in coping with any discrimination encountered and also reported more support. A central issue was that self-esteem and importance of appearance to an individual does not differ by age. However, appearance conjures up different ideas for different ages. For the younger group it implies beauty and sexual attractiveness, in contrast to definitions of cleanliness and being properly attired, adopted by the older groups of the sample. In consideration of the younger view, it is interesting to note Porter et. al.'s (1990) research into the effect vitiligo has on sexual relationships.

The research claims one-quarter of the sample believe vitiligo has interfered in sexual relationships, while 25-50% experienced stress when meeting strangers, when in contact with the opposite sex and when wearing more exposing clothes. Therefore, it was the more casual contact with strangers that resulted in the most stressful situations. In particular, single people were reported to experience heightened stress, and men, more difficulty in the sexual realm. This illustrates interesting points about gender differences and how social situations may affect a person's well-being. A later study reflects upon issues around vitiligo, stigma and racial differences.

Porter and Beuf (1991) discuss racial variations in reaction to physical stigma. This draws attention to concerns of the symbolic meaning of skin colour. By suggesting vitiligo has racial connotations for blacks, Porter and Beuf emphasis the distress and anxiety blacks experience by turning white, leading to higher degrees of discrimination. The research also suggests that women are more likely to use make-up to conceal their condition and discuss it compared to than men, which may reflect why 76% of Kent 's and 71% of Porter and Beuf's sample were female. My research however, reflects a more even distribution of gender than these, with 66% of the sample female respondents. It is also worth demonstrating that Porter et.al.'s (1988, 1990, 1991) research is difficult to generalise to all vitiligo sufferers, even more so than Kent 's, because of problems of under-representation.

The sample is comprised of patients receiving treatment for vitiligo in clinics, therefore included those who were concerned enough about their condition to seek medical help and treatment. In this sense, mild cases of vitiligo are under-represented, as well as the newly diagnosed, as people tend to only seek help several months after an initial diagnoses. Neither Kent 's (1999, 2000) nor my own study are limited to clinic attendants, and so, it can be suggested, that each grasps a wider range of mild to severe cases. From my own study, the opportunity to participate was made available to those initially seeking information about vitiligo. This allows a variety of representations, from those who have had the condition for a few months, to some that have had it for many years. However, despite weaknesses, Porter et.al.'s and Kent's research presents much needed and enlightening work into the social and psychological effects of vitiligo. As an under-developed realm of research the contributions are valuable in gaining knowledge about how stigma affects vitiligo sufferers. However, these studies do not provide the more in-depth, personal experiences which I hope to uncover. Newspaper articles and publications provide instances of personal stories and episodes which shape an individual's relationship with themselves and society.

Janet Haslam (1997), in The Guardian, describes the experiences of a lady, who has had vitiligo for over forty years, now covering half of her body. She describes vitiligo aptly as a constant bereavement'. As a teenager, when the condition started, she questioned her attractiveness because her skin's appearance. These demanding social and psychological effects progressed up to a point in her life when self-esteem was low, she was depressed and panicky', coming close to a nervous breakdown. This story illustrates the effects that ever so often are unconsidered when thinking about such disfiguring conditions. Sarojini Ariyanayagam, whom founded the Vitiligo Society, spoke about her experience of turning white to Dr Gillian Rice on a BBC Radio 4 programme (2002) which exhibited events in her life which reach the extremities of vitiligo.

When living in Sri Lanka , Sarojini developed vitiligo in her teenage years, encountering constant staring at the irregular visible white patches on her body. Despite many courses of treatment, nothing significantly helped her condition. With more depigmented areas, than pigmented areas on her body, she made the decision to eradicate the remaining areas of colour through a process of depigmentation. Now living in the United States she is a white American, and on occasions is privy to racist conversations. Her story provides us with the harsh realities and struggles that vitiligo can cause. She has lost her identity as a women of colour' and to her, despite appearances, she is still a black woman within.

Therefore, these personal stories provide an illustration of the experiences vitiligo can impose upon an individual. They provide evidence in supporting the need for further knowledge about the condition and the social effects it may cause. However, it can be argued that such articles only portray more severe cases, and I think it is important to illustrate the experiences that are less intrusive to people's lives too.

Research Methods

The use of a cross-sectional design will guide the execution of research methods and analysis of data. This involves the collection of data from a high number of cases, at a single point in time, which collects qualitative and quantitative data. These will be associated with a number of variables which, through examination, will provide patterns of association.

Self-completion questionnaires were used, combining open and closed questions, which were distributed by email. The sample was made accessible by the help of the UK Vitiligo Society and the US Vitiligo Support Organisation. Initially, a notice was placed by the Vitiligo Society on their website (www.vitiligosociety.org.uk) requesting help with research. This provided the opportunity for anyone willing to help with the necessary contact details in order to do so. After an insufficient response rate from this site, permission was given to place further notice on the message board of the Vitiligo Support website (www.vitiligosupport.org), stating again details of how people could help if they wished to do so. Once I had been contacted by individuals offering their help, an email was forwarded which included a copy of the questionnaire and covering letter which informed of who I was, my reasons for researching this area, contact details and instructions. In completing the questionnaire participants either posted their response back by mail, or it was returned again by email. Interest was also shown by an Italian vitiligo group offering their help. After translation, the questionnaire was placed on the forum of the website extending the sample further. Responses were again returned by email.

 

Why self-completion questionnaires?

As a widely used resource, the internet and electronic mail provide access to large numbers of people on an international scale. The use of self-completion questionnaires allows access to those who use the internet, which could not be done so cheaply and efficiently by using other methods such as interviews.

This method incurs little cost and is quick to administer, since questionnaires can be distributed in large quantities. It is also absent of interviewer effects, such as aspects of ethnicity, gender and social background which may bias an individuals response. Also, problems arise since respondents tend to under-report aspects which they are sensitive about, which is particularly relevant in this study as participants are reporting about personal experiences which may cause anxiety. In this sense it was also important to give respondents time to complete questions at their own pace, rather than, to some extent, being under the pressure of an interview situation with little time to contemplate answers. However, there are also problems with self-completion questionnaires that are well known in research, but attempts were made to overcome these to a certain extent.

A prominent problem is that people simply will not fill in questionnaires to which is of no interest to them (Bryman, 2001). Since people were contacting me offering their help, I overcame this to some extent, because people had an apparent interest to make the initial contact. However, in completing the questionnaire and sending it back, other factors need to be considered.

It was important to ensure questions were clear and unambiguous since no interviewer was present to prompt. Neither could respondents be probed to elaborate while answering questions. However, in conducting the research through the Vitiligo Society it was necessary for the questionnaire to be checked by the Medical Advisory Committee of the charity before being distributed. This raised any ambiguities or problems, acting as a kind of pilot research, to which I could respond and rectify. Furthermore, participants were advised to contact me if clarification of any questions were required, and most offered further help so responses could be followed up and elaborated if necessary.

Despite efforts to prevent, some problems prevailed, as with all research methods. A researcher administering such a method has no control of who answers the questionnaire. In other words, to whom the questionnaire was emailed to, may not necessarily be the person responding, and an element of trust is involved, as always is with any research. Furthermore, such self-completion questionnaires are not appropriate for certain kind of respondents. As I found, language barriers can be a problem when conducting research in which the population is a global one, who cannot all speak English. It is also important to take into consideration that respondents do not want to write large amounts, so the number of questions and open questions must be kept to a minimum. However, the research topic demands detailed answers, rather than fixed choice options, therefore the questionnaire combined both open and closed questions. This meant respondents were not faced with masses of space to fill with writing, but rather easy tick box' questions as well as chance for more reflective and thought provoking ones.

 

Open Questions

Open questions allow respondents to answer on their own terms, rather than being forced into a set answer. This allows for issues to be raised which may have not been anticipated, and provides in-depth descriptions of an individual's experiences to which there is little knowledge. It is particularly important for this group to have the chance to describe in their own words since the research hopes to provide deeper understanding of experience, which open questions allow. However, these types of questions are time consuming and require more effort from respondents, which may be relieved to some extent by including closed questions too.

 

Closed Questions

These provide easy to process and analyse data which are simple to compare, in contrast to open questions. They are quick for the participants to complete, and may also clarify the meaning of a question too. However, they lose spontaneity of replies by placing individuals in a fixed box, when this may not cover the true answer. Validity is also jeopardized as interpretations of the fixed answers may vary.

In addition, it should also be made clear that respondents were encouraged to write freely, with no limits being placed on how much or how little could be written. Plus, the questionnaire ended asking for any additional information which individuals felt were important issues to raise. This gave the chance for spontaneity of thoughts and feelings which may not have been covered by questions. However, questionnaire responses are renowned as low for this research method, so it is important to ask what else can be done to improve this situation.

 

To Improve Problems of Response Rates

In providing a good covering letter explaining the reasons for research, its importance and guarantees of confidentiality, I felt this may improve response rates. I also stated my own identity as a vitiligo sufferer in explaining my reasons for conducting this research, which I later found to be an important part in heightening response rates. Many respondents have expressed how they were much more willing to explore their experiences and initially contact me, since they felt more at ease telling a fellow sufferer. Respondents were also more tolerant of helping with the study as it was a topic, not only of interest to them, but also for many an important part of whom they are. In other words, people would not send the initial email offering their contributions if they were uninterested in the area of study and in helping. Efforts were also made to establish a rapport with respondents by personalising emails. As many did, if questions were asked about my own experiences or simply words of support were needed, enough time was given so ensure people received a sufficient response, as a way of reassurance and co-operation.

Regardless of these efforts response rates did not reach 100%, and follow-up emails were sent acting as a reminder to prompt completion and return of the questionnaires. Such endeavours resulted in a response rate of 71%. The classification of the sufficiency of this amount is depicted by Mangione's scale below:

Over 85% - excellent

70 85% - very good

60 70% - acceptable

50 60% - barely acceptable

Below 50% - not acceptable

(Mangoine, 1995: 60-1)

 

Sample

By virtue of accessibility, the population selected was a convenience sample. As described above the sample consisted of vitiligo sufferers who viewed requests for help on the Vitiligo Society and Vitiligo Support websites. These could be accessed by members and non-members worldwide, but of course relied upon internet and email access. Responses came from countries ranging from Pakistan , Australia , Italy , Mexico , of course Britain and America , among others.

 

Ethics

As with any stigmatising appearance-related research it is central that a researcher considers ethical principles throughout. This tends to be associated with four key areas:

Harm to participants;

Informed consent;

Invasion of privacy;

Deception.

(Lee-Treweek and Linkgole, 2000)

In the case of this research, harm to participants consists of avoiding misrepresentation of the group and the consequences this may cause, as well as the use of sensitive language. On the request of some of my participants I will not be using the word disease' when referring to vitiligo as this word invokes feelings of contamination, infection and deviance, none of which are related to vitiligo. It is also important to consider the repercussions of discussing sensitive subjects in a person's life experience. This can be anticipated because of the sensitivity of the group and therefore guarded against by such things as ensured confidentiality.

Participants must be provided with sufficient information about the consequences of their involvement and consent to the use of their data. This includes keeping participants informed at all times.

Further importance should be placed in avoiding invading privacy. Through reassurance that respondents do not have to justify any questions they may refuse to answer, making it clear that respondents may write freely as little or as much as they wish, and also ensuring anonymity and confidentiality.

In avoiding deception, again the central point is keeping participants well informed of the research aims and procedures.

 

Results of Vitiligo Study

After 63 questionnaires had been requested and distributed, 45 were returned producing a response rate of 71%. 66% of the 45 respondents were female, compiling a fairly equal split in terms of sex. The majority were between the ages of 19 and 29 years (42%), with a median age of 37. One participant was under the age of 16 and so cannot be used as reliable data since parental help may make the response invalid, although parental consent was sought. In terms of determining an individual's skin tone, respondents were asked to categorise themselves as fair, olive, medium or dark. This relied on each individual's interpretation of skin tone being the same and so may not be a reliable and true scale. From these self-interpretations 4% of the sample classed themselves with a dark skin tone, whereas the other three categories (i.e. fair, olive and medium) were fairly equally split.

In relation to the severity of vitiligo, the sample grasped a full scope of conditions. These ranged from individuals with minor conditions consisting of one or two patches, to those with full or 95% depigmentation. 64% of the sample classed their vitiligo to be less than 25%, which may reflect the vitiligo population as a whole, as total depigmentation is uncommon. All but one participant claimed vitiligo affected visible parts of the body, and even this one respondent said the vitiligo was noticeable in summer.

The results of the research will be displayed in terms of the research questions, focusing on a quantitative outlook, which will be elaborated in a more qualitative manner in the discussion.

How do factors of age, skin tone, sex and the severity of vitiligo affect the likelihood of stigmatised encounters?

When questioning participants about any negative episodes they have experienced, I sought to illustrate the types of stigmatised response they may encounter. Respondents were therefore asked whether they had ever received negative comments, teasing or bullying as a result of their condition. This received an almost equally split response, as 51% had not experienced negativity while 49% had. For example, one respondent describes the reactions to their condition in the workplace. At the school were they worked, the children knew them as the spook , and often questioned their parents about the respondent's appearance.

A division is also illustrated when considering the factor of sex. Half of the females in the sample, and 53% of the males, had not experienced any kind of negativity due to their condition. In terms of skin tone, 58% of the participants with olive skin had been subject to stigmatised encounters, similarly to just over half of those with fair skin. From the two respondents with dark skin, one had and one had not received negativity. However, the one who had not, stated that their vitiligo was very minor, in contrast to the other who classed themselves as 26-50% affected. This may portray the significance of severity.

The results show that out of the 23 respondents whom had not encountered stigmatised incidence, 18 had less than 25% vitiligo. Therefore, the majority of those with least severity had not experienced negativity. However, from the respondents whose vitiligo affected 26-50% and 76-100% of the body, more persons had experienced a negative attitude towards them.

Are issues of concealment and avoidance important to the experiences of individuals with vitiligo?

In asking whether respondents made a conscious effort to hide or camouflage their vitiligo I wanted to determine whether the condition played an important role in people's daily lives and routines. The results showed that 47% did attempt to cover vitiligo, while 29% did so sometimes, such as in summertime and on special occasions. This combines as a total of 76% who made some effort to hide or camouflage their vitiligo, leaving less ¼ who made no effort.

Respondents stated the kinds of practices and routines they used to do this. These ranged from medical treatments such as PUVA, to camouflage make-up like dermacolour and veil camouflage cream. Regular daily practices were also used like, for example cosmetic make-up, clothing, hair dyes and specific bodily movements, such as putting hands in pockets. However, practices like the use of make-up and camouflage creams tended to be used more by women, reflected by the 87% of females who attempted to camouflage or hide vitiligo all the time, or sometimes.

All respondents with an olive skin tone made some effort to conceal their condition, and nearly all with fair skin did, by using products such self tanning cream or factor 60 sun block, so that pigmented areas would not tan. This is similar to persons with 76-100% depigmented skin. Out of the three in the survey with this severity, one said they used make-up, excess clothing and fake tan to conceal their condition, in contrast to the others in this category who made no effort. As well as hiding or camouflaging vitiligo, people also avoided situations and activities.

In the questionnaire, participants were asked whether they avoided the following activities and situations: swimming; wearing certain clothes; beach holidays and sunbathing; nightclubs with UV lights; sexual encounters and undressing in changing rooms. Respondents indicated if they did not do these things usually, so were not counted, and were also asked to suggest any further activities they avoided. This grasped a full range of situations which people avoided to show how daily life is experienced by vitiligo sufferers.

The results portrayed that no one activity or situation was specifically avoided by the respondents. Beach holidays and sunbathing proved to be most avoided by 56% of the sample, while undressing in changing rooms was least avoided (65%). Other activities that people suggested they steered away from consisted of many daily practices. People kept away from photographs, avoided shaking hands, going to parties and the gym, as well as signing documents in front of people and driving with someone in the passenger seat of their car. Long periods exposed to the sun, like picnics, tended also to be a worry, along with giving business presentations and getting facials, which require the person to be given a lot of attention.

As the visibility of vitiligo is very much affected by exposure to the sun, how important is the onset of spring and summer for individuals?

With exposure to the sun an individual's vitiligo can become ever more noticeable as its rays tan the pigmented areas, creating greater contrast to the depigmented areas of skin. Therefore, I felt it was important to explore the significance of the summer months as they seem so crucial to the condition. When asking respondents to indicate how much the statement: In the past I have resisted exposure to the sun to avoid making my condition more visible', applied to them there was a clear sex division. The results illustrated that 25 of the 30 females in the sample either strongly agreed' or agreed' with the statement, in contrast to only 6 males. Instead the majority of males (53%) opted to strongly disagree' or disagree' that they avoid exposure to the sun. However, summertime still proved to be important in affecting people's activities.

Respondents indicated a heightened awareness of their condition in relation to its visibility to others. Vitiligo's vulnerability to sun burn was also a major issue as people debated the types of clothes to wear. Some indicated that despite not wanting to, they were more inclined to cover up because of the sensitivity of their skin.

 

What are the implications of the lack of knowledge about vitiligo?

As a condition that has no cure and is dismissed by many health professionals as cosmetic, as well as relatively unknown in society, it is important to consider the repercussions of this lack of knowledge. This unawareness can be illustrated amongst the sample itself as only 5 participants (11%) said they knew about vitiligo before they themselves developed it. Even some of these stated that they were only aware of the condition because a relative had it, and so would otherwise be uninformed. Many respondents expressed that they could not get the support they needed from doctors because the condition is not painful, contagious or life-threatening.

When asked whether doctors where sympathetic towards their condition, 37% of respondents stated that these professionals were not at all' sympathetic, while 30% responded slightly'. This makes a total of 67% who expressed discontent with the response of their doctors. Only 12% of the sample suggested that doctors were very' sympathetic to their condition, with many pointing out that this was the dermatologists rather than their GP. Furthermore, some respondents were told that nothing could be done for the condition with no information being offered about treatments, while some doctors were unfamiliar with the condition or simply thought of it in cosmetic terms. People with white skin exhibited that doctors did not take their condition seriously as it was deemed as relatively unnoticeable. However, this lack of knowledge is also reflected in society as a whole.

Some respondents expressed how people think the condition is contagious and conduct their actions according to this view. Participants told how others would avoid touching them and appear disgusted by the sight of their skin. Others said how they had been asked if they had had a bath in acid' quite openly by strangers. As well as worries of experiencing such stigmatised encounters, others also expressed fears of the possible genetic inheritance that may be associated with vitiligo. Along with this, respondents also experienced anxiety about the condition spreading.

 

Discussion about Vitiligo

This section will discuss the results in a more qualitative fashion so as to grasp a full range of experiences encountered, and the way these reflect upon previous research. Areas of interest will be split into separate segments to highlight the key findings of the research

The results of the research raise central issues associated to stigma, such as concealment and avoidance, but also aspects which can be seen as particular to vitiligo. This section will explore the more specific experiences of vitiligo sufferers, the reactions to these and the effect upon the person and their conduct of daily social life. In order to convey the true experiences of the person with vitiligo, I feel it is important to use their own words to illustrate their thoughts and feelings. No one can say how they feel better than they can.

 

Stigmatised Encounters with Vitiligo

As other research has illustrated, stigma is very much related to labelling an attribute as different (Goffman, 1963). Therefore, it is important to question why vitiligo sufferers may see themselves as different from other members of society. This relates to how members of society react to vitiligo which can be exemplified by the negativity received by 49% of the sample. For instance, many respondents told how anyone and everyone stares , making them feel embarrassed and uncomfortable. The variety of remarks made, such as black and white multi-colour , have you been burned? and acid or tiger girl , confirms why people may feel different. In addition to the occasional comments received, some participants expressed how they were bullied and teased regularly.

The negativity conducted on this basis were commonly situated in the location of the school, as reflected by McNeil Jnr.'s (2003) article about a young boy with vitiligo who was called weird' by his classmates. One respondent who has had vitiligo since the age of thirteen describes how they were subjected to a lot of bullying at school because the condition covered large parts of the face. Similarly, another described:

There were a couple of girls at school that used to pick on me at different times and call me names like patchy' and spot', and say things like look at the freak' always in front other people. I used to cry my eyes out sometimes and look at other people and ask myself €¦why me?

Therefore, it is not difficult to understand why 76% of the sample made some effort, all the time or sometimes, to or hide or camouflage vitiligo.

 

Concealing Vitiligo

By attempting to camouflage or hide vitiligo, respondents sought to minimise the visibility of their condition, and thus achieve acceptance by others around them, as Gardener (1991) also suggests. In studying acne sufferers, Hawkesworth (2001) exhibited how they concealed their flaws with make-up, and so complies with my findings. Other practices used which are more specific to vitiligo include camouflage make-up, self-tanning cream, eye brow and lash dye and high factor sun protection. One respondent said that covering it up makes me feel more normal , while another stated she used make-up because my face looks freaky without it . More routine bodily movements were also used by those with vitiligo, like the acne sufferers in Hawkesworth's study who used their hands and hair to cover their face. I found that people used similar body movements such as holding drinks with the other hand, and sitting positions. These all convey Goffman's theory that the stigmatised correct what is seen by others as a failing, as well as Kent 's (2002) idea of impression management'. This is exemplified by a participant who said:

It seems that the condition is always on my mind. I am always aware of let's say, what vitiligo is showing on my body, who can see it, if they are looking at it, their facial expression, and try to avoid conversation .

Concealment of the condition, whether through clothing, make-up or body movement, seems to make people feel that they are reducing the likelihood of stigmatised encounters, and thus achieving acceptance. This involves self-conscious actions and movements for some, as well as attempts to avoid situations, as the respondent states above. This reflects Goffman's theory that in anticipating contact with normals', the stigmatised try to avoid it.

 

Avoiding Situations because of Vitiligo

Some respondents started to avoid certain situations with the onset of vitiligo, anticipating when and where visibility may be heightened. For example, one female told:

After I got white patches on my hands at the age of 32, I started avoiding going to some stores such as nail salons, jewellers and cosmetic stores where they want to try new products on my hands .

This echoes Hawkesworth (2001) and Kent 's (1999, 2000) studies that illustrated how embarrassment can lead to detachment from mainstream public space and social activities. These included spaces like the work place and for others, more social occasions, for instance:

On special occasions, even on the occasions of my very close relatives, like the wedding of ceremony of my sister I tried my best to avoid the camera .

Other respondents suggest how social involvement in general has been, or still is a worry, as one person stated, I avoid social involvement and am very agoraphobic . It seems that heightened embarrassment is a factor predominant in dictating social involvement, for example, I feel embarrassed and uncomfortable about it a great deal. It has made me more introvert and less out going . In addition, the research similarly reflects Kent 's (1999) findings that people with vitiligo tend to control information which they disclose about themselves to others. One lady describes that due to embarrassment she has been unable to tell her husband about the condition. This illustrates how uncomfortable individuals can feel about vitiligo. This can affect them by ruling out marriage, in the same way that Hawkesworth found in acne sufferers. Here we see the impact vitiligo can have upon people's lives and social experiences. Others have also described experiences in which vitiligo has a profound effect upon their lives.

In reaction to being bullied at school one participant described how:

Sometimes I would pretend to be ill and put myself in the sick bay at school, just to avoid them. My teenage years were the worst and this is where I contemplated suicide .

This huge impact is not the only incidence described of this kind:

Vitiligo nearly destroyed my life, since I used to turn to drugs and alcohol to escape reality. I also tried to commit suicide twice when I was younger after I had been rejected by people because of my vitiligo .

Therefore, vitiligo can produce shocking experiences of social exclusion and rejection to the highest extent. These illustrate the kinds of emotional experiences individuals with vitiligo may undergo, and the many activities and situations some miss out on because they may not be accepted. For instance, I feel like a lot of my youth was taken away from me because of this disease, as it has stopped me enjoying everyday things . These kinds of thoughts, feelings and experiences about social space reiterate the stigma of looking different, described by Goffman. Appearance and physical attractiveness therefore seem crucial to the experiences of acceptance and vitiligo.

 

Issues of Appearance and Attraction of Vitiligo

As a so-called, appearance-impairing' condition (Porter and Beuf, 1988) feelings of attractiveness provide a basis for how people feel about themselves, which is central in how they conduct their daily lives. From my research I found 24 out of the 30 females (80%) in the sample agreed that vitiligo had affected feelings of attractiveness at some point, and 19 (63%) consider appearance to be very' important to them. This can be exemplified by the comments made by one female participant who said:

Vitiligo is psychologically traumatising. I have difficulty because it began in my early 20's, just when I need to be at my most attractive and confident. It is also difficult because I can remember how nice I looked before these ravages .

This is kind of view illustrates why 63% of females saw vitiligo as moderately' or very' appearance impairing, while only 5 of the sexes combined, saw it as not at all' impairing. This may then reflect the outcome that a minority of 27% felt others saw their condition as not impairing of their appearance. To illustrate this point it is possible to turn to the comments of a respondent who describes that:

Usually people stare when I'm sitting on the bus/train/tube, somewhere where I'm sitting in close proximity to strangers. Their staring reiterates what I feel about myself, which is that I look abnormal .

Further examples illustrate how important it is for people to feel attractive:

I always feel that due to my vitiligo I am not impressive. Any girl who sees me won't get attracted to me unless she speaks to me and gets impressed by the way I speak or behave. So, by the way that if she doesn't get the chance to get familiar with me, for her my condition would be impairing .

Therefore, for the person with vitiligo the appearance of the skin and the visibility of the condition is very important to how they perceive their attractiveness.

Ahmed (1998) discusses how tanned skin signifies healthy bodies, which complies with the views vitiligo sufferers have of themselves. Respondents have reflected on the repercussions of possessing a pale complexion when saying, I feel I look pale and pasty, and unhealthy , while another suggests she looks tired without make-up on, and so never goes out without it. For others restrictions on the types of clothes that can be worn was a sight of disappointment. As Ahmed suggests, woman's skin signifies femininity, and respondents have claimed that having to restrict its exposure affects feelings of attractiveness. One female suggests that From a female perspective, often I felt less womanly' because I feel limited on what I wear. Specifically, sexy' shoes, dresses and so on . Another says that I'm 20, I want to put on a bathing suit and to go to the beach or wear cute tank tops and not think twice, and not be looked at funny .

Some respondents also felt a need to avoid sexual encounters, as Porter et.al. (1990) have also suggested. This research claimed that men tended to have more difficulty coping in the sexual realm, but my research contrasts with this view. 67% of males claimed they did not avoid sexual encounters because of their condition, while 50% of females did. This reluctance for some centred round fears of rejection:

I have had a problem getting intimate with men because I was very afraid of getting rejected. It affected my self-confidence/self-esteem as a woman .

This comment illustrates the importance appearance has on feelings of acceptance, and also of self-esteem. Porter and Beuf (1988) have suggested that the importance of appearance does not differ by age, which my results do not comply to. For instance, 63% of 19-29 year olds classed appearance as very' important, in contrast to only 33% of 60-69 year olds. Furthermore, 20% of the youngest age group thought that vitiligo was very' impairing of their appearance, while none of the oldest group did. However, the view of the condition being impairing can be seen as related to visibility. Many respondents suggested that the summer months created this problem, and felt this was a time when actions and social involvement were most restricted. This complies with Kent 's (2000) findings that the onset of spring acted as a triggering event for heightened visibility, and so is crucial for sufferers.

 

The Significance of Spring and Summer on Vitiligo

The most embarrassing time for me is in summer as I can't dress the way others do and often think people are looking at me and wondering why I am dressed head to toe .

This approach to summer and exposure to the sun is one many respondents stated they took, as it not only decreases the likelihood of visibility but also of sun burn. However, the on look of others in society again becomes a crucial feature in the way people act, and thus shapes daily practice:

I feel that sometimes people think I should always keep the vitiligo covered up as it is unsightly, especially in summer when it is more visible .

This feeling of difference, and some extent disappointment, is reiterated by a further respondent:

When I look at my skin I feel dirty. Most of the time I don't really think about it, but in the summer I look at other people with normal skin and wish I had skin that was all one colour .

Appearance is again raised as a central issue for vitiligo which relate to embarrassment as sufferers feel they appear multi-coloured . This affected social situations for some, treating them as something to be avoided in summer. The affect of this is commented by one respondent who said:

I often feel embarrassed and uncomfortable about vitiligo. I have suffered very low self-esteem due to this and at times, especially in summer, depression. At one stage in my life I was suicidal .

This kind of reaction to the onset of the summer months exhibits felt stigma, which Jacoby (1994) describes. It also highlights the increased visibility of vitiligo, reflecting why some feel winter is the best part of the year . This is probably best described by one respondent who stated:

Thank the good Lord for fall and winter, when it is out of sight it is out of mind for a while, but it is always lurking there waiting to be revealed .

Correspondingly to Kent (2000) the evidence portrays that spring and summer are crucial for vitiligo, mainly due to aspects of increased visibility. As has been shown this can cause a variety of problems for individuals by restricting what they feel they can do, wear and take part in. Respondents have also raised issues about the cultural implications of vitiligo, some of which have not been illustrated by other research.

 

Cultural Implications of Vitiligo

Cultural identity was highlighted as an issue for one respondent in a similar way to Sarojini's story as a black woman who turned white, described earlier. I find myself standing out because I pass as white with my complexion, but Indian with my features . This complies with Porter and Beuf's (1991) discussion of the symbolic meaning of colour and the implications of vitiligo for dark skinned sufferers. With 76-100% loss of pigment the respondent goes further in saying that I can very easily confuse people as I have few patches of my original colour . Therefore, consideration of changing identities must also be highlighted when discussing the loss of colour.

Different cultural views about vitiligo have also been highlighted by some respondents, in terms of forming, and keeping, new relationships. For instance one female describes the impact vitiligo had upon her relationship, and the specific cultural responses surrounding this:

When this started, my boyfriend at the time broke up with me. Once I over heard a relative (who wanted me to marry her son) say thank God I had said no' to the proposal and now nobody would want to marry me .

She later goes on to suggest the extended impact vitiligo has in certain cultures:

I feel that in societies where marriages are still arranged and especially in Asians the impact is much more, not just on the person who has vitiligo but also on the whole family. It is virtually impossible to find someone for those people .

This account of varied cultural experiences is reiterated by a fellow respondent:

At the present moment my condition has become a lot more important. As an Asian, there is a lot of ignorance and prejudice about the condition, and as such it is proving very difficult to find a partner, even though people can't tell I have it. The girls themselves are accepting and simply want to be educated, but the parents refuse to accept me, primarily due to it being a genetic condition. Just recently I have come out of a very serious relationship, purely because of my vitiligo .

He also explains why vitiligo is viewed in a more negative manner than associated skin disorders:

Due to the heavy cosmetic nature of vitiligo, it is considered worse than eczema in my community .

Such incidence exemplify the presence of enacted stigma, which Jacoby (1994) refers to. It also sheds some light on the cultural impact of vitiligo in Asian communities, which would be an interesting topic for further research. It highlights the significance of the possible genetic factor associated with vitiligo, and its importance not just on the individual, but also on the families, as has been exhibited. Others have also expressed fears of this kind, so that future children do not have to experience the things they may have. One participant simply says that the possible genetic inheritance saddens me , while another is afraid that her children will develop it. I think this conveys the importance of the role of the doctor as a person who can reassure and provide the information necessary. Unfortunately individuals do not seem to be receiving this support.

 

Lack of Knowledge of Vitiligo

Doctors have offered me nothing ; My GP wasn't interested . These comments recurred throughout my research, which is an area untouched by others. One respondent suggests why the medical field appear so unhelpful with this condition, but also the repercussions of this lacking action:

Doctors tell me it is cosmetic and won't kill me'. They don't know what it is doing to me inside .

Another view illustrates the lack of knowledge surrounding the condition, and aspirations that this will change:

I feel hopeless when I see that the doctors cannot help me with this condition. Some doctors are not familiar with it at all and do not want to deal with it. They need to be more educated .

I would like to see the medical field treat this as a more serious disease. It is heartbreaking to hear of all the doctors who say there is no treatment and it is merely cosmetic .

Simply within these two comments we see the different approaches by doctors to the condition, as one says the doctors cannot help, while the other knows there are treatments but are not always offered, or known about by the medical profession. This stresses the need to educate doctors about the treatments available, and also the social effects of vitiligo. This lack of knowledge stems also to the larger picture of society.

Lack of knowledge can be illustrated by the types of comments individuals receive about the appearance of their skin. For instance, some participants cited incidence when strangers had approached them to ask if acid' or bleach' had caused the white patches on their skin. This complies with Goffman's theory of stigma which suggests that people often feel free to approach the stigmatised and question them out of curiosity. Others described how reluctant some people were to touch them, and how this made them feel:

A lot of people avoid touching you because they think it is contagious. I also have very low self-esteem so when people stare I get very paranoid and upset .

This reflects Scambler and Hopkins (1986) view that people often misfit truths about particular stigmatising conditions, based on misleading knowledge. Such displays of ignorance lead to uncomfortable feelings when in public places for some:

I feel that strangers and people who are unaware of vitiligo see it as a major defect, because of the stares and comments I have received .

These experiences have led many to emphasis the importance of education in such areas, like aspirations of the hope that vitiligo will become a more recognised disease and not just cosmetic . In classifying vitiligo as cosmetic, many white people have expressed concerns that it is not being recognised as serious for them. For instance, one participant states that the biggest thing I have found is that the condition for white skinned people is not really taken very seriously . Therefore, there appears a desire for increased knowledge and support from the medical profession, which may reflect onto society as a whole. However, as one participant suggests, it is the vitiligo sufferers themselves who also have the power to educate others.

 

The More Positive Outlook for Vitiligo treatment

As soon as you explain what is wrong with you people just accept it. I think it is like most things, we are worried about the unknown .

This demonstrates that although people may be curious about a person's skin, it does not always lead to stigmatised encounters. I feel it is important to reveal this kind of view, to illustrate that having vitiligo is not simply a negative display of experiences. The majority who do not receive negative comments, bullying or teasing due to their condition rarely get the chance to portray their experiences, even though 51% of my sample cited no incidence of this kind. This is not to say that the majority of people do not have difficulty in any areas of social life but reflects on how for some, vitiligo does not play a major role in daily. For instance:

It does not affect me on a day-to-day basis, but makes me very self-conscious and feel like people are starring at me when exposed .

Here we see that vitiligo is not at the forefront of people's minds, but can still be a factor which influences some thoughts and actions in a conscious way. Ellis' (1998) view of minor bodily stigmas' complies here, when arguing that such imperfections are not master statuses and rarely become the focus of other's attention. For some it is more about the effect upon the self, rather than considering the view of a second party. This exposes the affects on the way people think of themselves, dress and conduct their lives. For instance, a respondent suggests, I regard this confounded disease as a major inconvenience rather than something which makes me really unhappy . It is this kind of view that seems to develop over time. Some of the sample, describe how they now cope with vitiligo despite it affecting them in some way:

I don't let it stop me enjoying my life but it has definitely affected my confidence and it is something I am always aware of .

I have accepted vitiligo more as I grow older, I am unmarried, but my last husband helped me get more comfortable as he seemed sincerely accepting of the condition .

This portrays the significance a figure of support can have on someone's view of vitiligo, and also the effect time has with accepting the condition, for instance stares effected me as a child, but now I am used to it . Others have put the feelings about their condition into perspective, saying that it is not much worse than the general ageing process , and although I have a condition which changes the way I look at myself I feel guilty because I am very lucky. I am not in hospital with cancer or heart disease . This kind of guilt for worrying about appearance is reiterated by many others who consider that vitiligo is neither painful nor life-threatening. I feel it is these views which should also be emphasised to vitiligo sufferers themselves.

As the results have shown, vitiligo can play a huge role in people's lives, and rightly so, but the positives must also prevail, if only so that the newly diagnosed are not disheartened. For instance respondents said:

I would definitely consider my condition having strengthened the person I am today. Having vitiligo has caused me to work hard for things .

I feel that I have a very compassionate side toward people with differences, whether visible or not, that can affect their self-esteem .

Limitations and Weaknesses

 

The Sample of Vitiligo patients

To take part in the research, internet and email access was necessary, this therefore limits the sample to individuals with these requirements. It could also be argued that research of this kind, targets of particular type of sufferer to respond. In other words, those who felt vitiligo played a significant role in their lives, or were sufficiently worried enough to respond and search the vitiligo websites initially, may be more inclined to offer their help with the research. This may particularly apply to the individuals who requested a questionnaire and returned it, compared to those who, despite asking to help did not respond with a completed questionnaire.

In terms of the representiveness of the sample, the majority were in the youngest age group, 19-29 years, which may reflect the problems with participation being limited to email and internet users. Therefore, 60-69 year olds are under-represented in the sample. Vitiligo sufferers with a dark skin tone are similarly under-represented, as they only composed 4% of the sample. Individuals with 76-100% vitiligo are also a minority in the sample, but this may reflect the vitiligo population as a whole, as this severity is uncommon.

The various problems with the sample consequently mean that the findings cannot be generalised to all people with vitiligo.

 

VVitiligo Questionnaire

The questionnaire also provides the research with weaknesses and limitations. In general, the questionnaire encouraged a negative response, and took sufferers experiences out of context, to some extent. It is important to remember that respondents were asked to cite their feelings about vitiligo within a limited milieu which centred round negativity. In other words, the questionnaire did not query the respondents about incidence which had occurred during the past week or that day. Therefore, it is necessary to question how often, and to what extent different feelings about the condition may be relevant to daily life.

In terms of weaknesses within the questionnaire, I felt the question which asked respondents to state their skin tone was not an accurate measure. The scale contained four broad options which I felt were not detailed enough to cover all individuals. Furthermore, the scale very much relied on everyone having the same interpretation of each skin tone as a general measure, but also of their own. This complies similarly to each closed question which requires respondents to choose an option. Therefore, caution must be displayed in the validity of the quantitative results, which is a common problem with this method. I also felt that such findings were not useful for this particular research because the aim was to illustrate experiences rather than statistics.

This highlights why I felt limited by the method that I chose to use. Although lots of valid data was generated, and the use of questionnaires enabled distribution throughout the world, it limited my approach to the topic. In compliance to the method, I took into consideration the need to produce some kind of quantitative data, since the questionnaire is most commonly used to generate statistics and tables. This, to me, was irrelevant to my research because my aim was to illustrate the experiences of people with vitiligo, rather than the demographics behind them. Despite this, the questionnaire did allow access to a scale of people which would otherwise have been extremely costly and time consuming.

Time and Money

Time and money are always a significant consideration when conducting research. When considering these factors it limited the type of research method I would have liked to have used as well as the questionnaire. I think it would have been interesting to interview a selection of the respondents in order to explore in more detail people's experiences and views. However, because of the time restrictions of the dissertation, and the cost of travel and the like for interviewing this was not possible.

Conclusion

The experiences of people with vitiligo proved to be varied and inconsistent in the main. Ellis's (1998) argument stating that varying degrees of importance are placed on such conditions seems highly relevant to people with vitiligo. The condition can be seen as minor for some, major for the next, and nonexistent for a third. In this sense, no significant factors were highlighted in affecting the likelihood of stigmatised encounters, or in the avoidance of social activities. However, the findings illustrated the common practice of hiding or camouflaging the condition in some manner. This related to reducing visibility of the condition as a way of counteracting any feelings which questioned attractiveness and acceptance, as well as decreasing the frequency of felt and enacted stigma. Summertime was also a prominent factor relating to visibility. This is due to considerations of the vulnerability of skin to sunburn, the socially expected exposure of the skin in the heat, and also the increased contrast between affected and unaffected skin.

The cultural implications of vitiligo are also highlighted and would be an interesting topic for further research. These centre round the stigma that different cultures attach to the skin disorder and the specific societal reactions because of its cosmetic nature as well as possible genetic inheritance. Fears of the latter, in all cultures, largely stemmed from lacking support of health professionals, who failed to provide information. Despite the absence of medical support, some conveyed positive thoughts, illustrating factors of time and personal support when coming to accept the condition.

The issue of time proved to be of importance in consideration of the likelihood of stigmatised encounters and highlighted the need to address education of such disorders within the social setting of the school. In general, the results showed that regular and persistent teasing were experienced during school years, after which coping mechanisms were adopted to decrease these encounters, and their effects. All accounts of negativity, whether it be teasing or starring, prompted embarrassment and declining feelings of attractiveness. In this sense, appearance becomes central to many of the respondent's sense of self, illustrated by changing experiences of spatial practices and bodily movements. These findings may also apply to other disfiguring conditions, such as acne, as we have seen through analysis of Hawkesworth's study.

This dissertation provides an informative account of the various factors influencing the lives of those with vitiligo. It acts as a broad reference to the kinds of experiences these individuals encounter, and as a basis for future research in the area. Such topics could include exploration into cultural factors, as already suggested, and also the influence of the support offered by the medical field as well as educational institutions. Overall, the research provides much needed education about the social affects of vitiligo, in the words of the sufferers themselves.

Vitiligo (leukoderma) is a common skin disease in which there is loss of pigment from areas of the skin resulting in irregular white spots or patches.  Vitiligo typically spreads if not treated. What research is being done into finding a cure for Vitiligo?

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psoriasis

Psoriasis is a common skin disease that causes raised red skin with thick silvery scales.

vitiligo

Vitiligo is a disorder in which white patches of skin appear on the body

hair loss

Hair loss usually develops gradually and may be patchy or diffuse

acne

Acne is a disorder of the hair follicles and sebaceous oil glands that leads to skin infections

dermatitis

Inflammation of the skin, often a rash, swelling, pain, itching, cracking. Can be caused by an irritant or allergen

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