reported experiences of persons with alopecia areata

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REPORTED EXPERIENCES OF PERSONS WITH ALOPECIA AREATA a

NIGEL HUNT & SUE McHALE

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University of Nottingham, Nottingham, United Kingdom b

Sheffield Hallam University, Sheffield, United Kingdom Available online: 01 Sep 2006

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REPORTED EXPERIENCES OF PERSONS WITH ALOPECIA AREATA

NIGEL HUNT University of Nottingham, Nottingham, United Kingdom SUE MC HALE She⁄eld Hallam University, She⁄eld, United Kingdom

Alopecia is a chronic disease of hair loss. The study focuses on psychological issues relating to the experience ofalopecia. Previous research has considered psychological problems as secondary to the medical disorder.The ¢rst part consisted of spontaneous written accounts (N ¼ 162) of the experience of alopecia.The second part was an interactive email interview (N ¼ 34). Findings focused on negative personal, social, and medical e¡ects. Successful coping was discussed by very few respondents, but included behavioral changes and acceptance of appearance and identity changes. Suggestions are made for future research.Treatment for alopecia needs to be broadened to include psychological methods.

Introduction Alopecia is a chronic disease characterized by hair loss that can a¡ect men, women, and children. Its etiology and subsequent development are not fully understood, but it is an autoimmune disorder that arises as a combination of genetic and environmental in£uences (Madani & Shapiro, 2000; Van Scott, 1958; Jackow et al., 1998). The hair follicles in the anagen stage of development (growth phase) become the target for immune cell attack (Ranki et al., 1984; Perret et al., 1984). Suggested causes of alopecia include psychological Received 1 August 2004; accepted 15 September 2004. Address correspondence to Dr. Nigel Hunt, Institute of Work, Health & Organisations (I-WHO) The University of Nottingham, 8 William Lee Buildings, Nottingham Science and Technology Park, University Boulevard, Nottingham NG7 2RQ UK. E-mail: [email protected]

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N. Hunt and S. MCHale

stress (Muller & Winklemann, 1963; DeWeert et al., 1984; De waard-van der Spek et al., 1989), physical trauma, and genetic predisposition (Green & Sinclair, 2000). There are di¡erent types of alopecia, which may be qualitatively di¡erent disorders. Alopecia areata involves the loss of patches of hair from the head. This is the only form of alopecia that may be responsive to medical treatment, though the extent of e¡ectiveness is unclear (Meidan & Touitou, 2001). People with alopecia areata may have spontaneous remission, but may have repeated episodes. Alopecia totalis involves the loss of all head hair. Alopecia universalis involves the loss of all head and body hair.These two forms of alopecia are not responsive to treatment, and the su¡erer is much less likely to experience substantial regrowth. There is controversy over the rate at which alopecia is expressed as alopecia totalis or alopecia universalis. The extent of the more severe forms of alopecia is disputed, because there have been no relevant epidemiological studies. Safavi et al. (1995) reported 7%, whilst Muller and Winklemann (1963) have quoted a ¢gure as high as 30% for individuals expressing the more severe types of alopecia. Stressful life events have an important role in triggering some episodes of alopecia (Garcia-Hernandez et al., 1999; Panconesi & Hautmann, 1996; Gupta et al., 1997; Hunt & McHale, 2004). York et al. (1998) found that women who experience high stress are 11 times more likely to experience hair loss than those who do not report high stress. Koo et al. (1994) observed increased prevalence rates of psychiatric disorders associated with alopecia compared with the general population, suggesting that people with alopecia may be at higher risk for development of a major depressive episode, anxiety disorder, social phobia, or paranoid disorder. In contrast, Cipriani et al. (1983) reported no statistical correlation between alopecia and neurotic symptoms. Egele and Tauschke (1987) identi¢ed a group of alopecia patients with an ongoing feeling of loss, suggesting that for some individuals the process of coping with alopecia may be equated with the grieving process following bereavement. Coping is implicated as an important factor in£uencing recovery from illness and mediating the relationship between stress and illness outcomes (Cohen & Lazarus, 1979; Elliot & Eisdorfer, 1982). Factors that have been shown to in£uence an individual’s coping capacity include genotype, development, early experience, and social support (Ol¡ et al., 1993). Taylor (1983) proposed that adaptive coping with a chronic illness involves a search for meaning coupled with a search for mastery or control, followed by a process of rebuilding self-esteem through self-enhancement.


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For people with alopecia the coping process may be di⁄cult because the disorder has an unpredictable course. Hair loss may last for many years or just a short time and the progress of alopecia may cycle through expression and remission. There may be issues of identity and identity change associated with alopecia. The disorder may involve the loss not only of head hair, but also of eyebrows and eyelashes, which help to de¢ne a person’s face (Hunt & McHale, 2004). Hair loss may be seen in terms of abnormality and as a failure to conform to the norms of physical appearance within society, a situation which has the potential to set people apart in their own estimation and in the estimation of others (see Bull & Rumsey, 1988). What emerges from the psychological research on alopecia is that there are problems relating to psychological distress (both as a precursor and as a consequence of alopecia), coping and, though this has not been explicitly explored in relation to alopecia, possible identity problems. Previous studies that explore psychological causes of alopecia are rather limited, so the aim of the current research is to explore the areas of concern that people with alopecia have, rather than provide predetermined categories.

Method Design This two part study was conducted to examine the psychological impact of alopecia. The ¢rst part involved participants being asked to spontaneously generate accounts of the psychological impact on their personal and social lives of their experiences of alopecia. Participants were not primed to provide any particular information, just to discuss issues relating to their alopecia. The second part involved obtaining a di¡erent sample of participants to take part in an email interview. Volunteers were emailed a series of general questions, to which they were asked to provide detailed answers by email. The researchers then asked follow-up questions appropriate to the initial responses. The limitation of these techniques is that it is unlikely to generate a representative sample of people with alopecia; it being more likely to access those with problems who are seeking solutions. The bene¢t is that it is ethically acceptable to access volunteers and subsequently, to generate detailed information about alopecia.

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Participants One hundred and sixty two people took part in the ¢rst part of the study, of which 80% described alopecia experiences in adulthood, the remainder being childhood and adolescent accounts. They also completed a questionnaire that provided demographic information.The age range was 12 to 93 years. Seventy ¢ve percent of the participants were women. It is not known how this sex di¡erential relates to alopecia in the general population, as there is no epidemiological evidence. It is likely that many cases of alopecia go unreported.Thirty four people took part in the second part of the study, 50% were male. Four were children, though it was the parents of these who took part. Procedure Participants for the ¢rst part of the study were obtained by writing to local newspapers across the United Kingdom with a request for people with alopecia to provide written accounts of their experiences for a research project. Participants for the second part of the study were obtained via requests placed on a number of websites relating to alopecia. Analysis The accounts, which varied in length from a few lines of text to six pages, were subjectedto analysis using a grounded approach (Strauss & Corbin, 2000), as it wasnot knownatthe outset whatparticipantswouldwrite about.Thegrounded approach ensures categories emerge from the data, rather than are imposed by researchers.These categories form the main subheadings in the results section. Initial categories were generated from the analyses of the ¢rst part of the study. These were used when generating questions for the second (email) part of the study, where participants were given general questions and encouraged to write in detail. A similar analysis was then carried out, and a ¢nal analysis was carried out to incorporate data from both parts of the study.

Results Participants varied according to the extent of their reported alopecia, but the physical extent of the disorder was not correlated strongly with the psychological impact. Participants with limited alopecia areata often experienced

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37


more severe symptoms than participants with alopecia totalis or universalis, so the groups are not separated; with the emphasis on the kinds of problems experienced by participants with all kinds of alopecia. The following categories and subcategories were developed: Personal: physical e¡ects, causes, psychological distress, and coping. * Social: work, relationships, sex di¡erences, children and adolescents, and social support * Medical: treatment and doctors’attitudes Personal The personal impact of alopecia was exempli¢ed through ¢ve sub-themes: physical e¡ects, causes, psychological distress, identity=self esteem, andcoping. Physical E¡ects Many people described the physical changes that resulted from alopecia, not just the loss of hair, but also that many people with alopecia have to accommodate minor or profound changes in physical appearance. Changes in the degree of hair loss may be cyclical in nature with periods of hair loss and regrowth, taking place over weeks, months or several years. This requires a continual process of adaptation, and may be a serious source of distress for many su¡erers, particularly during the initial phase of alopecia, which can be associated with rapid changes in appearance. Participants described the physical problems that they experience as a direct result of having alopecia. Hair loss is not just con¢ned to the head and external body: My nose runs more than it used to due to lack of nasal hair.

A common characteristic when losing eyelashes is: Eyes become dry and sore.

This is due to the eyelid turning slightly inwards when the eyelashes are removed, causing the lid to rub on the surface of the cornea. It is well known that the head is the greatest source of heat loss. This is exacerbated when there is no hair: Extreme temperatures have a surprising e¡ect.

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There is also the problem of sickness. Participants would attribute minor illnesses to the alopecia: I have had more time o¡ sick in the last 2.5 years with minor things than I have ever had o¡ in my working life.

In the extreme, physical changes may be linked to personal identity:


I don’t think I shall be physically me again until my hair grows back fully.

Some people interpret their appearance negatively: My eyes have a pig-like quality without lashes and brows.

Causes While many did not understand why they developed alopecia, those who did often associated periods of stress and=or bereavement as precipitating factors. Some mentioned speci¢c stressful incidents or mentioned that the GP or consultant had associated the onset of hair loss with a stressful life event or generalized stress. Others had drawn the link between stress and alopecia themselves: In times of stress my hair falls out in handfuls; I have just lost my mother and it is happening now.

This can be because of speci¢c problems such as: Personal and work stresses or extreme anxiety and bereavement. There was one instance where: It all started after I fell over and was knocked unconscious several years ago.

The process by which this happens is not clear. Even though some participants believed they were able to identify possible causes for their alopecia they still needed to search for reasons why they themselves had alopecia: I have always wanted to know why I have had this hair loss.

Psychological Distress Many people discussed the distress caused by having alopecia, both in the immediate period of loss and over the long term. Several participants used phrases such as: this distressing condition when writing about their experiences. The distress seems to be mainly linked to changes in physical appearance, which can be profound for some individuals.

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People described how the loss took place over just a few days or weeks, which led to a period of loneliness and isolation, coupled with the feeling that others have no understanding of what they are experiencing.


It is a lonely time [when hair is falling out] when you have no one to relate to or talk about it.

Di⁄culties accepting changes in appearance associated with loss of head and body hair were clearly embedded in social de¢nitions of hair and appearance. For instance: When it ¢rst happened I felt like a freak, lost all con¢dence in myself and was ashamed to go out.

The fact that each day brought more hair loss and with it changes in physical appearance was a di⁄cult process to cope with: I dread getting up in the morning.

This led several people to describe how they would shave their heads to get: The hideous ‘‘losing’’over and done with.

The problems faced in coming to terms with alopecia and changes in physical appearance are numerous. While it may be of little consequence to others, to the person with alopecia it may be severely traumatic. The feelings of shock and despair voiced by many of the participants re£ect this: I cannot begin to tell you how upsetting this all is. I don’t believe anyone realizes just how much your life is a¡ected by hair loss, more so when you have total hair loss.

At the extreme people may discuss suicide: When I ¢rst discovered my alopecia I decided that I would not want to live if I lost all my hair. I seriously considered suicide that night.

Coping Coping strategies can reduce the level of distress felt. Some participants discussed the di⁄culty of wearing wigs, and the distress that this caused, although for many, the alternative of going bareheaded seemed far worse: My hair loss has had quite a profound e¡ect on my life and Iam just hoping that, one day, I can have a head of hair and not worry about my wig blowing o¡ every time it is windy or I dive into the swimming pool.

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One woman took a very positive view to wearing wigs: My hair always looks lovely and I don’t have to visit the hairdresser.


This was unusual as most participants discussed the disadvantages of wearing wigs that included overheating on hot days, avoiding windy weather, and the di⁄culty of engaging in sporting activities.These aspects made wearing a wig a source of distress for many respondents: I have had to su¡er wearing a wig ever since [1967] . . .. It is harder to cope with now than when I was younger.

Adult males were less likely than women to discuss attempts to cover bald patches or total baldness.This may be a re£ection of the ways in which society view baldness in males and females di¡erently. Exceptionally, one woman stated: [I] have no intention of bowing to public opinion that decrees a woman should not be obviously bald.

Leading some participants to suggest that: Far more help and support should be available.

Whilst maintaining emotional equilibrium in the face of persistent and often profound changes in appearance was clearly a problem and many participants expressed feelings of despair: As a young career minded female I am ¢nding it di⁄cult to come to terms with this.

Despite the variety of strategies that participants described to adapt to alopecia, there were very few accounts that indicated positive adaptation, and successful coping. For many, successful coping amounted to mere acceptance of the changes in appearance and accompanying social di⁄culties: I was able to be quite philosophical about it after the ¢rst uncomfortable realization of having to ¢nd wigs and explain to friends and relations.

The small number of respondents whose accounts appeared to re£ect successful adaptation discussed ways in which they found it necessary to make quite fundamental changes to their behavior.These changes seemed to relate to ways in which they sought to reappraise the ways in which they managed stress:

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I deliberately set about changing how I viewed my life and did a complete U-turn. I believe this helped in my recovery.

More males than females described successful coping with alopecia that included acceptance of appearance changes. One male wrote:


To be honest Iam not sure if Iam in that much ofa rush toget back into the hair wash, cut and condition routine.

Social There is a general feeling among many people with alopecia that they do not want to be seen in public with no hair: I have become more reclusive and have not wanted to socialize with people. I think I would need a general anesthetic before I ever stepped out in public with no hair. Ido think people might make comments and I’d feel humiliatedwhether they were abusive or pitying.

Work Work is a social situation that is di⁄cult. People with alopecia may be more likely to try and avoid work than other situations. Sometimes this relates to self-esteem, as discussed above: I have been o¡ work with stresslost self-esteem and con¢dence and feel I couldn’t perform my job to the best of my ability.

On other occasions, it can relate to the way people at work perceive the person with alopecia: I felt sensitive to student comment which made me more stressed at work.

There is also the possibility of actual prejudicial treatment, whether real or perceived, which can have serious legal repercussions: I often wonder how work colleagues would have coped with a bald Facilities Manager meeting and greeting contractors, etc. Maybe they would have encouraged me to leave?

There is no evidence here that people with alopecia are being treated prejudicially, but there is an important point that they may genuinely perceive that they are being treated prejudicially when they are not.

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Relationships There is variation within this theme regarding the support or otherwise obtained from friends and family. For some the family provided very good support, but for others this support was lacking. The fundamental point is linked to that of identity. If there is a perception of changed identity then it logically follows that relationships will at least have to be redesigned. Even where relatives are positive, there is a perceived gap between what the person with alopecia is feeling and relatives’ understanding. No matter how much your nearest and dearest want to help they cannot comprehend the signi¢cance of the loss.

Sex Di¡erences Some women mentioned that problems adjusting to loss were exacerbated, because baldness is socially acceptable in men but not in women. Some women made clear links between hair and sexuality: It has ruined my life to a certain degree as when a woman loses her hair, which is her crowning glory, it is devastating and one feels like dying.

There is a perceived di¡erence between men and women being seen in public without hair: I have never seen a bald woman out and about in Sainsbury’s doing her shopping.

Though there is a recognition that the problems can be as serious for men as for women: I know that losing one’s hair a¡ects men as much as it bothers women.

Children & Adolescents Adolescents discussed the di⁄culties related to sustaining intimate relationships with the opposite sex, and implications for their social lives: It is not much fun being a bald teenager.

One elderly male participant described his adolescent experiences: [Alopecia is] embarrassing at that age especially when I had to serve 4 years in the Navy during the last war.

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Children seemed to be particularly distressed by the changes in appearance that they had to accommodate. This might be a consequence of the added di⁄culty of coping with school and the reactions of peers and friends. There were a few accounts that described experiences of teasing, and when this occurred was seen as a source of severe distress:


I was teased a lot and so had a lot of time o¡ school.

For some the adverse reactions of peers impacted on the course of their education, leading them to prolonged absences from school.

Social Support The protective e¡ects of social support on the reduction of psychological disorders related to stressful life events have been found in a number of studies (Barrera, 1988, Sarason et al., 1985). Support is mediated through a network of others that includes medical professionals, other professionals, partners, family, and friends. The process of adaptation and acceptance is clearly ameliorated by the support to the alopecia su¡erer given by friends and relations: I personally have had a very great support from my husband, family, and all of my friends.

The help and support received from family and friends had helped many su¡erers to cope; although two accounts hinted at the fact that having alopecia may have had a detrimental a¡ect on their personal relationships: I am very happy with my current partner, when my hair started falling out I was very unhappily married.

Several accounts were written by either parents or partnersin most cases indicating that they had permission to write from the su¡ererand several participants had been introduced to the research by friends. Eleven accounts relating to young children aged between 4 and 12 were written by mothers and in one case a grandmother. What these accounts identi¢ed was that alopecia is not merely a distressing condition for the su¡erer but has implications for close family members, and that families ¢nd adaptation to baldness di⁄cult. One mother wrote that it has been: Extremely di⁄cult over the years though, both for her and for me to adjust to her baldness.

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However, the same mother displayed a sense of humor and identi¢ed that the experiences of havinga daughter withalopeciatotaliswere not always negative: A bald child is also very handy for getting rid of unwanted callers at the door.


Although re£ecting both their natural acceptance of the daughter’s physical appearance this account does show that often di⁄culties lie in others acceptance of what, for many, is an unusual physical appearance. Medical Treatment Many participants found the fact that there was no certain cure for alopecia a source of severe distress.This seemed particularly so for those individuals who had experienced their ¢rst bout of alopecia in adolescence or childhood. Some participants discussed how they had: travelled the country to ¢nd a cure.

Some had resorted to trichologists and alternative therapies such as re£exology and acupuncture. Yet despite seeking help from di¡erent organizations within both the National Health Service and the private sector, children, adolescents, and adults mentioned the fact that there was no e¡ective treatment for alopeciaalmost a third of child and adolescent accounts discussing this aspect of the disease. Participants described lengthy and often costly attempts to reinstate hair growth. Unable to accept that they are di¡erent to the way they were before they carry on searching for something that will restore their hair and their looks. They discussed the search for a cure in terms of hope: I will not try to give up hope even though my doctor tells me to face up to it.

For some participants the long search for a cure leads to an inevitable sense of hopelessness, with some su¡erers ¢nding it hard to adapt to a new identity: I only wish there was a miracle cure out there somewhere.

Many people with alopecia will go to extreme lengths to try and ¢nd a cure for their problem. This in itself shows what an impact the disorder has on people. The problem with most of these treatments is that, at least for people with

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more severe forms of alopecia, they lack e¡ectiveness, or they only work while treatment is continued. Topical steroids worked until treatment stopped, then it fell out again.

Then, when one treatment fails, people try alternatives:


A mixture of coconut oil with rosemary oil; Aloe vera and rosemary extracts; Magnesium tablets.

The other problems with treatment, particularly steroid treatment, are side e¡ects: I had a great deal of reaction to the chemical and my scalp was always sore. Large water blisters, cracking headaches in the afternoon.

Doctors’Attitudes There was only one instance of a person with alopecia being positive about doctors’attitudes towards alopecia. Most people who mentioned this topic had negative experiences: The consultants are only interested in treating the disease and not the e¡ect the disease has on your psychological well-being.

This extends to the overall lack of support. No help, support or adviceI left the surgery feeling quite miserable. I found the hospital very dismissive and unhelpful.

This can have an impact on treatment: I did not go for my followup appointment with the specialist as she had been rude and upset me at the initial consultation.

The family doctor and hospital consultants were sometimes perceived as regarding alopecia too lightly: It is dismissed by doctors as being trivialI assure you that it is anything but!

Both family GPs and hospital consultants often perceive alopecia as a mild dermatological problem without really addressing the concomitant stressors that include both the precipitating incident and the added stress resulting from adaptation processes to loss.

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The ways in which doctors may trivialize the disorder may make the problem more severe for the su¡erer and add to the feeling of loneliness. Some doctors showed a lack of empathy or interest in the outcomes for the patient: I was just told to wear a wig.‘‘After all it’s only your pride that’s hurt,’’said one doctor.


Overall, participants indicated that medical sta¡ often did not recognize the psychological impact of alopecia, and the vulnerability of patients.

Discussion The study identi¢ed a range of psychological issues of importance to people with alopecia. These were categorized according to personal, social, and medical e¡ects. The study has shown that alopecia can have a major impact on people’s lives. Many of the themes can be subsumed under an overall theme relating to identity.The problem with alopecia is that it impacts on one’s sense of identity, that it interferes with identity formation (as in the case of children and adolescents), and that it impacts on the individual’s sense of identityeven to the extent of believing there is identity change.This demonstrates the importance of physical appearance as part of identity, and how alopecia fundamentally changes one’s appearance. If one’s identity is changed by alopecia, this is inevitably going to impact on relationships, both work and personal. Alopecia can be traumatic, which impacts on coping strategies, and the need for support. If a relationship is damaged then the person may have access to reduced social support at a critical time. Damage to social support mechanisms can reduce coping, which may itself then lead to further psychological distress. Throughout this, if a person’s sense of identity is damaged, and they are having problems dealing with the personal aspects of hair loss and social relationships, then it is inevitable self-esteem is going to be a¡ected. Many people cope with their di⁄culties by trying to understand how and why something has happened. Unfortunately in the case of alopecia, etiological aspects are not fully understood, so people trying to ¢nd information are left without a clear understanding of why they have the disorder. This is exacerbated when people with alopecia go for treatment. There is very little evidence for the e⁄cacy of any drug treatment for alopecia, particularly for the serious forms of the disorder, so people with alopecia totalis or universalis go for treatment and do not gain any positive results. Finally, many people are


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further distressed by the negative attitudes of doctors and dermatologists, medical practitioners who, it appears, treat only the physical disease, and who fail to address the psychological problems many su¡erers have. Overall, the picture for many of the respondents is a negative one; while it should be borne in mind that many people who took part in this study perhaps did so because they have di⁄culties adapting to alopecia.White may be many people who cope very well, what is clear is that there are a large number of people who have problems, and who are not receiving appropriate help. In the absence of e¡ective medical treatments, there is a case for psychological treatment to help su¡erers to come to terms with their disorder. Further research needs to be undertaken to understand the psychological impact of alopecia. One important psychological issue involves establishing the role of physical appearance in de¢ning identity. Previous research has examined identity construction generally, but people with alopecia are a population for whom physical appearance is heightened. Their experiences, particularly when eyebrows and lashes are a¡ected, may be compared with others who experience facial dis¢gurement. The role of psychological trauma as both a precursor to alopecia and a consequence of alopecia should be examined. There is the complicated situation that in some people a traumatic event may have caused the initial alopecia, and then the alopecia itself gives rise to further trauma.There is a need to examine the role of coping and social support, the latter being seriously a¡ected by the change in appearance of the individual with alopecia. There are issues relating to the di¡erences between people who learn how to cope e¡ectively and those who do not. Can we institute interventions that will help people deal more e¡ectively with the disorder, and develop a more positive outlook? Linked to this question is whether patterns of coping change over time and whether there are di¡erences relating to age of onset. The role of personality and other individual di¡erences should be examined, as it is possible that particular types of people are more prone to alopecia. It is also important to establish links between psychological and physiological mechanisms. The evidence points to the importance of the interaction between individual characteristics and the environment. For instance, theories of stress such as Lazarus and Folkman (1987) and Lazarus (1999) propose that self-e⁄cacy is a powerful factor in mediating stress. Bandura et al. (1982) suggested that self-e⁄cacy may moderate immunosuppression, and this may be relevant to the course of alopecia. The construct of ‘‘hardiness’’ (Maddi & Kobasa, 1984) has been proposed, which emphasizes feelings of control and acceptance, so that successful coping and self-management will


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eradicate stress, whilst failed self-regulation will result in a stress response. Within this framework stress-related illness is seen as a consequence of prolonged failed self-management (Karasek & Theorell, 1990). Hair loss has profound social implications. There is evidence within the general population of the importance that people ascribe to physical appearance (Carr et al., 2000). It is clear that social relationships and social support severely impact upon coping with changes in appearance, which may lead to identity change. This article can only be a preliminary step towards a fuller psychological understanding of the implications of alopecia.

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N. Hunt and S. MCHale Dr. Nigel Hunt is a Lecturer in Applied Psychology at the Institute of Work, Health and Organisations at the University of Nottingham, specializing in people’s responses to stressful and traumatic situations. He has carried out work in relation to healthrelated problems, war veterans, and refugees. He is interested in the development of narrative and identity.


Dr. Sue McHale is a Senior Lecturer in Psychology at She⁄eld Hallam University specializing in psychobiology and psychoneuroimmunological responses to environmental events.