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The experience of recurring genital herpes for women Schiemann, Rosemarie 1995

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THE EXPERIENCE OF RECURRING GENITAL HERPES FOR WOMEN by ROSEMARIE SCHIEMANN B.Ed. The University of Calgary, 1984 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS in THE FACULTY OF GRADUATE STUDIES (Department of Counselling Psychology) We accept t h i s thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA A p r i l 1995 (S) Rosemarie Schiemann, 1995 In p resen t ing this thesis in part ial fu l f i lment of t h e r e q u i r e m e n t s f o r an advanced d e g r e e at the Univers i ty o f Brit ish C o l u m b i a , I agree tha t t h e Library shall make it f reely available f o r re ference and s tudy. I fu r ther agree that pe rmiss ion f o r ex tens ive c o p y i n g of this thesis f o r scholar ly pu rposes may be g ran ted by t h e head o f m y d e p a r t m e n t or by his o r her representat ives. It is u n d e r s t o o d that c o p y i n g o r p u b l i c a t i o n o f this thesis fo r f inancial gain shall n o t be a l l o w e d w i t h o u t m y w r i t t e n pe rmiss ion . D e p a r t m e n t o f The Univers i ty o f Brit ish C o l u m b i a Vancouver , Canada Da te DE-6 (2/88) 1 1 ABSTRACT A phenomenological research design was used to explore and describe the subjective experience of women who had recurring g e n i t a l herpes i n order to begin to understand how women make sense of t h e i r l i v e d experience of the disease. Indepth interviews were conducted with six women from the Vancouver area during which the women described t h e i r experience of l i v i n g with re c u r r i n g g e n i t a l herpes. Seven common themes emerged from the data using C o l a i z z i ' s (1978) method of phenomenological analysis. The r e s u l t s of the study indicated that the stigma associated with t h i s incurable sexually-transmitted disease, the fa c t that the disease can be transmitted to others, and i t s recurrent nature contributed to an ongoing need for the women to deal with the disease and i t s consequences. i i i TABLE OF CONTENTS Abstract i i Table of Contents i i i Acknowledgements v Dedication v i CHAPTER I INTRODUCTION 1 CHAPTER II LITERATURE REVIEW 7 The Physical Course of the Disease 7 The Psychosocial Consequences of Recurrent Genital Herpes 11 Adaptation to the Disease 2 3 S o c i a l Context and Female Sexuality 26 Summary 2 8 CHAPTER III METHODOLOGY 3 0 Research Design 30 Personal Assumptions 31 Participants 34 Procedure 34 Data Analysis 37 Limitations of the Study 38 CHAPTER IV RESULTS 41 The Participants 41 Common Themes 49 CHAPTER V DISCUSSION 72 Ess e n t i a l Structure 72 Comparison to the Literature .76 Implications for Counselling 89 i v Implications for Future Research 96 REFERENCES 99 APPENDICES A. Advertisement for the Study 105 B. Consent Form 106 C. Orienting Statement 107 D. Interview Questions 108 V ACKNOWLEDGEMENTS I was honored to hear the sto r i e s of the women who pa r t i c i p a t e d i n t h i s project and thank them for sharing t h e i r s t o r i e s and ideas with me. This t h e s i s would not have seen completion but f o r some very important individuals i n my l i f e . My thanks go out to my "thesis buddies" Karen Heiberg, Laurie Minuk, and Louise Chivers for being there during both d i f f i c u l t and ex c i t i n g moments i n the process of t h i s work. I'd also l i k e to thank my friends Pohsuan Zaide and Claudia C o l l i n s for being there to remind me that I would indeed f i n i s h my thesis one day. I much appreciated the attitude of support as well as s p e c i f i c suggestions made by my committee members, Angela Henderson and Dr. Richard Young. I would also l i k e to thank Dr. Judith Daniluk, my thesis supervisor, for her personal support, feedback, and guidance during the process of t h i s work as well as the program i n general. I am g r a t e f u l to my partner, John, f o r surviving "Mr. Hyde." Most of a l l , I thank my daughter, Chelsea, for helping me remember what i s r e a l l y important i n l i f e and keeping me grounded i n r e a l i t y . Dedicated to a l l women with herpes Some advice to those who have been diagnosed with g e n i t a l herpes: "Love yourself. Most important, you haven't changed. You are the same person as yesterday, you're the same person as l a s t year, y o u ' l l be the same person i n 20 years. You'll have more character, but you're s t i l l the same person. You are not a disease. A person." Grace 1 Chapter One Introduction During the early 1980's the spread of g e n i t a l herpes within the sexually active population received "widespread, alarming media attention" (Catotti, Clarke & Catoe, 1993, p. 77), leading to paranoia and fear about herpes i n North America and complicating the issue of adjustment to the condition (Catotti et a l . ; Inhorn, 1986). Since that time, researchers have investigated the physical course of the disease (Bierman, 1983), possible physical and psychological factors p r e d i c t i v e of recurrent herpes (Kemeny, Cohen, Zegans & Conant, 1989) , psychosocial consequences of the disease ( C a t t o t t i et a l . ; Drob, Loemer & Lifshutz, 1985; Jadack, K e l l e r & Hyde, 1990; Luby & Klinge, 1985), coping behaviors i n response to a g e n i t a l herpes diagnosis (Keller, Jadack & Mims, 1991; Manne & Sandler, 1984), and the e f f e c t s of personality type on recurrence (Shaw & Rosenfeld, 1987). However, l i t t l e research has explored the ind i v i d u a l ' s perception and meaning of the experience of recurring g e n i t a l herpes (Inhorn). The unique consequences of gen i t a l herpes for women (VanderPlate & Ara l , 1987) and gender differences during s o c i a l i z a t i o n related to sexuality (Kitzinger, 1983; Ussher, 1989) , suggest that the meaning a woman makes of the experience of recurring g e n i t a l herpes may be d i f f e r e n t from the meaning a man makes of that experience. As such, women's experience of ge n i t a l herpes was the focus of t h i s examination. Genital herpes i s a chronic, sexually-transmitted disease 2 caused by the HSV-I or HSV-II virus (Vanderhooft & Kirby, 1992). Approximately 16% of the U.S. population are infected with g e n i t a l HSV, or about 30 m i l l i o n people (Johnson, Nahmias, Magder, Lee, Brooks & Snowden, 1989). Estimates range from 500,00 to 1,000,000 new cases i n North America each year (Sacks, 198 6). As many as 7 0% of these individuals may be unaware of t h e i r i n f e c t i o n or may be asymptomatic (Corey, 1990). Women are named among the categories of individuals reported with higher prevalence (Johnson et a l . ) . I t has been suggested that herpes i s the most prevalent venereal disease among women (Luby & Klinge, 1985). There i s no known cure for g e n i t a l herpes although the drug acyclovir has been found to be e f f e c t i v e i n the symptomatic treatment of the disease (Whittington & Cates, 1984). The o v e r a l l physical consequences of g e n i t a l herpes are considered by medical professionals and researchers as minor (VanderPlate & Ara l , 1987), and even " t r i v i a l " (Bierman, 1985, p. 513), with two exceptions, both of which concern women. F i r s t l y , there i s evidence for increased r i s k of c e r v i c a l cancer i n women with g e n i t a l herpes (Vonka, Jelinek, Subrt, Suchanek, Havronkova, Vachal et a l . , 1984). Secondly, there i s a r i s k of neonatal herpes i n f e c t i o n i f lesions are active during c h i l d b i r t h , i n which case 50% of infected infants die. Infants that do survive may s u f f e r neurological damage and subsequent retardation (Corey & Spear, 1986). Children can generally be delivered s a f e l y by Caesarean section when a woman i s infectious or possibly i n f e c t i o u s during labor (Hargen, Pazin, Armstrong, B r e i n i g & Ho, 1983) . Given these consequences and the s o c i a l p r e s c r i p t i o n s against sexual behaviour and pleasure for women (Ussher, 1989; 3 Kitzinger, 1983), i t would seem l o g i c a l to assume that the meaning and experience of genital herpes may be d i f f e r e n t for women than for men. The psychosocial consequences of recurring g e n i t a l herpes can be "dramatic and long l a s t i n g " (Catotti et a l . , 1993, p. 80). In a review of the l i t e r a t u r e concerning the psychosocial aspects of g e n i t a l herpes, Swanson and Chenitz (1983) noted that the major factors mentioned i n early c l i n i c a l anecdotal reports were rel a t e d to "altered perceptions of s e l f and interpersonal r e l a t i o n s h i p s " (p. 98). This conceptualization i s supported i n the l i t e r a t u r e by the following reactions of some i n d i v i d u a l s to the condition of genital herpes noted i n current research: lowered self-esteem (Catotti et a l . ; Drob et a l . , 1985; Luby & Klinge, 1985), feelings of i s o l a t i o n , loneliness, and depression (Catotti et a l . ; Inhorn, 1986; Jadack et a l . , 1990; K e l l e r et a l . , 1991; Luby & Klinge), fear of r e j e c t i o n r e l a t e d to having herpes (Catotti et a l . ; Drob et a l . ; K e l l e r et a l . ; Luby & Klinge) and fear of disclosure of the condition (Inhorn; VanderPlate & Ara l , 1987). Interference with intimate and sexual r e l a t i o n s h i p s (Catotti et a l . ; K e l l e r et al.) as well as profoundly negative effects on sexual functioning have also been noted among some individuals (Drob et a l . ; Luby & Klinge). Concern over disease transmission i s common (Jadack et a l . ; K e l l e r et a l . ; Luby & Klinge). As a r e s u l t of these complex issues and concerns, emotional adjustment to g e n i t a l herpes may be quite d i f f i c u l t (Luby & Klinge). Considering that genital herpes i s a generally benign physical condition, the psychosocial responses reported to the 4 condition may seem extreme. However, when these responses are considered within the context of the " s o c i a l s i g n i f i c a n c e " herpes has attained i n our culture they become comprehensible (Drob et a l . , 1985, p. 314). Herpes became a public and stigmatized condition as a r e s u l t of common headlines i n the media i n the 1980's such as: "Herpes Simplex: The New Sexual Leprosy" (Time, 1980), "The New Scarlet Letter" (Time, 1982), and "Lovesick: The T e r r i b l e Curse of Herpes" (Rolling Stone, 1982). Misinformation, misconceptions, and myths about herpes transmission (such as contracting the virus from a t o i l e t seat) perpetrated by the media have contributed to public fear and add to f e e l i n g s of i s o l a t i o n , shame, and humiliation among ind i v i d u a l s who have contracted herpes (Inhorn, 1986; VanderPlate & A r a l , 1987). The impact of s o c i e t a l attitudes on the i n d i v i d u a l ' s experience of ge n i t a l herpes i s frequently acknowledged i n the l i t e r a t u r e (Bierman, 1983; C a t o t t i , et a l . , 1993; Drob et a l , 1985; Inhorn, 1986; VanderPlate & Ar a l , 1987), and i s an important consideration i n understanding an i n d i v i d u a l ' s response to t h i s sexually-transmitted disease, p a r t i c u l a r l y the responses of women with genital herpes. The meaning a woman makes of the experience of genital herpes must be considered within the context of s o c i e t a l messages about g e n i t a l herpes, women's sexuality, and women's bodies. I t i s within the context of a society which eith e r i s s i l e n t about or condemns women's sexuality (Kitzinger, 1983; Ussher, 1989) that women must come to terms with g e n i t a l herpes. While r e l a t i v e l y l i t t l e has been written about female sexuality, the l i t e r a t u r e suggests that the experience of 5 t h e i r own sexuality i s already c o n f l i c t u a l for many women before contracting herpes (Kitzinger, 1983; Ussher, 1989). For women with the disease, the impact of growing up i n a culture which fears and represses women's sexuality (Kitzinger, 1983; Ussher, 1983) may compound the experience of l i v i n g with recurring g e n i t a l herpes. While there i s general agreement i n the l i t e r a t u r e that the greatest impact of g e n i t a l herpes i s f e l t i n the area of sexual functioning, l i t t l e i s known of the meaning women make of l i v i n g with t h i s sexually-transmitted disease. The a v a i l a b l e l i t e r a t u r e suggests that women experience a higher incidence of genital herpes (Johnson et a l . , 1989), more psychological symptomatology (Levenson, Hamer, Myers & Kaplowitz, 1987), and are more l i k e l y to seek assistance for herpes-related d i f f i c u l t i e s than men (Luby & Klinge, 1985). Given these data, and given the c u l t u r a l context within which a woman experiences he r s e l f and t h i s disease, i t seems important to understand g e n i t a l herpes from the perspective of the women who l i v e the experience and to explore the ways i n which they understand t h e i r l i v e d experience. To date, studies addressing the psychosocial impact of g e n i t a l herpes have placed primary emphasis on quantifying consequences reported i n the c l i n i c a l l i t e r a t u r e through the use of questionnaires (Catotti et a l . , 1993; Drob et a l . , 1985; Jadack et a l . , 1990; Luby & Klinge). Indepth inv e s t i g a t i o n of the phenomenon of gen i t a l herpes f o r women had not been explored. I t was therefore the purpose of t h i s research to explore and describe the subjective experience of women who have recurring g e n i t a l herpes and to begin to understand how women make sense of 6 t h e i r l i v e d experience of the disease. A phenomenological approach which does not assume that the researcher knows the p a r t i c i p a n t ' s experience was used to allow each p a r t i c i p a n t to a r t i c u l a t e what was personal ly meaningful i n l i v i n g with and understanding her experience of recurr ing g e n i t a l herpes. The quest ion guiding t h i s research was, "What i s the experience of recurring g e n i t a l herpes for women and how have they l i v e d with and made sense of the experience i n t h e i r l i v e s ? " I t was ant ic ipated that the r e s u l t s of t h i s study would provide a more indepth understanding of the complexit ies of the psychosoc ia l impact of t h i s sexual ly- transmit ted disease for women. Such an understanding could f a c i l i t a t e more e f f e c t i v e care of fered by medical profess ionals prov id ing ongoing heal th care to women with g e n i t a l herpes and by mental heal th profess iona l s working with women having d i f f i c u l t y dea l ing with the disease . Interested partners , fr iends and family members would a lso be better able to provide support to a woman with herpes through gaining a better understanding of the experience from the s t o r i e s of the women i n t h i s study. The process of the research provided personal v a l i d a t i o n to the women p a r t i c i p a t i n g i n the study. The study could provide v a l i d a t i o n to other women with g e n i t a l herpes reading the research who recognize t h e i r own experience of g e n i t a l herpes i n the experiences of the p a r t i c i p a n t s . 7 Chapter Two L i t e r a t u r e R e v i e w I t i s the purpose of t h i s l i t e r a t u r e review to examine current knowledge of the experience of recurrent g e n i t a l herpes. A discussion of the physical course of the disease i s followed by discussion of the psychosocial consequences of the condition and an examination of the key studies i n t h i s area. An exploration of the s o c i a l context within which women l i v e and make meaning of t h i s experience follows a look at the process of adaptation to the disease. This review of the l i t e r a t u r e reveals a gap i n knowledge regarding the personal experiences and meanings created by women with g e n i t a l herpes i n response to the disease. T h e P h y s i c a l C o u r s e o f t h e D i s e a s e The HSV virus i s transmitted during sexual contact when mucous membranes or breaks i n the skin come i n contact with active lesions, or when the virus i s being excreted asymptomatically by persons with no lesions (Vanderhooft & Kirby, 1992) . Individuals with asymptomatic i n f e c t i o n may represent the largest number of infected individuals, estimated as high as 7 0% (Corey, 1990) and as a r e s u l t , asymptomatic shedding of HSV may be the most common mode of transmission of the i n f e c t i o n (Vanderhooft & Kirby). During the primary outbreak numerous p a i n f u l b l i s t e r s form on the genitals and/or surrounding skin, rupture to produce ulcers, then scab over and heal within ten to fourteen days. The lesions may be extremely tender, causing d i f f i c u l t y with u r i n a t i o n and urinary retention. The primary outbreak may be 8 accompanied by fever, swollen glands, headache, and other f l u -l i k e symptoms (Harger, Pazin & Breinig, 1986; Maccato & Kaufman, 1992) . V i r a l meningitis, which i s treatable, occurs i n 4 to 10% of i n d i v i d u a l s with a primary i n f e c t i o n (Corey, 1982) . The usual course of primary herpes i s from two to s i x weeks (Maccato & Kaufman, 199 3). Approximately 88% of individuals who have primary outbreaks experience recurrences that are usually of shorter duration and less severe than the primary i n f e c t i o n (Corey, Adams, Brown & Holmes, 198 3). The average recurrence rate i s four episodes per year (Davies, 1990), with a median recurrence rate of f i v e episodes per year being reported (Jones & Wasserhiet, 1991). However, there i s great v a r i a b i l i t y among in d i v i d u a l s , some experiencing no recurrences or rare episodes, while others report almost continuous recurrences (Bierman, 1983). The causes of recurrences are unknown although stress, menstruation, i l l n e s s , and sexual intercourse have frequently been reported as recurrence t r i g g e r s (Bierman; C a t o t t i et a l . 1993). A sensation or warning sign c a l l e d a prodrome often precedes recurrences, l a s t i n g from 12 hours to a week (Sacks, 1986). A l e s i o n may or may not r e s u l t , however during t h i s time the v i r u s i s reactivated and may be present on the skin. I t i s recommended that intimate contact with the affected area be avoided during t h i s time (Davies). Acyclovir, a drug used successfully for symptomatic treatment with both primary and recurrent i n f e c t i o n s , may be taken intravenously, t o p i c a l l y , or o r a l l y . Oral treatment reduces v i r a l shedding, pain, and time to crusting and healing of 9 lesions when used for primary infections (Longo & Koehn, 1993). Oral administration of acyclovir i s also used for episodic treatment as i t shortens the length of time to healing of lesions when taken early i n the course of a recurrence, although only by one day on the average (Reichman, Badge & Mertz, 1984). Individuals with recurrent episodes may choose continuous o r a l therapy for suppression of recurrences. However, v i r a l shedding does not appear to be eliminated therefore i n d i v i d u a l s using suppressive therapy may s t i l l be able to transmit the disease (Straus, S e i d l i n & T a k i f f , 1989). Once treatment i s discontinued, recurrence rates return to pre-treatment l e v e l s (Whittington & Cates, 1984) with some evidence that post-treatment l e v e l s of recurrence may be more severe than pre-treatment l e v e l s (Straus, T a k i f f , S e i d l i n , Backrach, Lininger, DiGiovanna et a l . , 1984). In spite of such drawbacks as well as being c o s t l y , acyclovir continues to be the most frequent treatment of choice for severe and frequent recurrent g e n i t a l herpes (Longo & Koehn). There i s also an association between the presence of HSV-2 antibodies (herpes simplex virus, type-2) and the acquistion of HIV i n f e c t i o n (Holmberg, Stewart & Gerber, 1988; Stamm, Handsfield, Rompalo, Ashley, Roberts & Corey, 1988). There i s increasing research i n t h i s newest area of herpes-related research. Infection of the cervix with the herpes v i r u s i s common with primary herpes (Maccato & Kaufman, 1993). C e r v i c a l shedding of the v i r u s i s less common during recurrences (Corey, Adams & Brown, 1983). Systemic symptoms (fever, swollen glands, etc.) 10 and meningit is tend to occur twice as often with women than with men (Corey et a l . , 1983). As we l l , women with herpes get cancer of the cerv ix approximately f i ve times more frequent ly than women who do not have herpes (Kaufman, Dreesman & Burek, 1981; Rawls, Adams & Melnick 1973). The incidence of neonatal herpes i n f e c t i o n i n the United States has increased from 2 to 12 cases per 100,000 l i v e b i r t h s between 1966 and 1981 (Whitley, Yeager & Cartus , 1983) . Such i n f e c t i o n can lead to mental re tardat ion , v i s u a l problems, and a 50% to 80% morta l i t y rate (Corey & Spear, 1986; Swinkler, 1986). V i s i b l e l es ions i n a woman at term who i s i n labor or whose membranes have ruptured less than 6 to 8 hours prev ious ly , ind ica te the need for a cesarean de l ivery (Davies, 1990). While cesarean d e l i v e r y w i l l prevent many cases of neonatal herpes, not a l l cases are prevented. Some infants de l ivered by caesarean wi th in 2 hours of ruptured membranes have developed the herpes i n f e c t i o n (ACOG Technical B u l l e t i n , 1988). As w e l l , neonatal i n f e c t i o n i s d i f f i c u l t to prevent as 70% to 80% of in fants in fec ted are born to mothers who show no symptoms and have no p r i o r h i s t o r y of herpes in fec t ion (Stone, Brooks & Guinan, 1989; Whit ley , Nahmias & V i n c i n t i n e , 1980). Furthermore, the r i s k of neonatal herpes i n f e c t i o n i s much greater when the mother i s experiencing a primary in fec t ion than during a recurrent i n f e c t i o n (33% and 3% respect ive ly) (Brown, Benedetti & Ashley, 1991). Despite a l l t h i s , i n general the phys i ca l consequences of g e n i t a l herpes are considered to be r e l a t i v e l y minor (Bierman, 1985; Drob, 1986; VanderPlate & A r a l , 1987). However, the 11 psychosocial consequences of the i l l n e s s appear to be quite d i s t r e s s i n g for many individuals with herpes. This suggests that the f e e l i n g s and meanings associated with t h i s condition may be p a r t i c u l a r l y problematic for women with herpes. Exploration of the meaning of genital herpes for women may provide important information about the consequences and experience of t h i s disease. The Psychosocial Consequences of Recurrent Genital Herpes Current research reveals that individuals report a wide va r i e t y of reactions to the condition of g e n i t a l herpes. The common reactions of individuals to having g e n i t a l herpes reported i n the l i t e r a t u r e are outlined i n t h i s section, followed by a review of the studies addressing psychosocial issues. The condition of gen i t a l herpes can lead to lowered s e l f -esteem. Infected individuals report feelings of u n d e s i r a b i l i t y , diminished confidence, hampered performance at work or school, and f e e l i n g s of contamination or being damaged as a r e s u l t of having herpes (Catotti et a l . , 1993; Drob et a l . , 1985; Luby & Klinge, 1985). Some individuals believe that the i n f e c t i o n i s "a penalty for r e a l or imagined transgressions i n l i f e " , (Bierman, 1983, p. 548) and respond with feelings of shame, humiliation, g u i l t , and self-blame (Bierman, 1983; VanderPlate & A r a l , 1987). Feelings of i s o l a t i o n , loneliness, and depression are common among ind i v i d u a l s with genital herpes (Catotti et a l . 1990; Inhorn, 1986; Jadack et a l . , 1990; Luby & Klinge, 1985). Depression i s frequently related to worry about recurrences and to pessimism and despair about the future course of the disease (Bierman, 1983; Drob et a l . , 1985). In t h e i r survey study of 74 12 men and women with genital herpes, Luby and Klinge (1985) noted a general pessimism about sexual relationships among the subjects of t h e i r study who "often despaired of e s t a b l i s h i n g a normal r e l a t i o n s h i p " (p. 495). Fear of r e j e c t i o n related to others' knowledge of t h e i r g e n i t a l herpes and fear of disclosure of the condition are reported repeatedly by individuals with g e n i t a l herpes (Catotti et a l . , 1990; Drob et a l . , 1985; Jadack et a l . , 1990; Luby & Klinge, 1985). Individuals may fear they w i l l not be accepted by casual friends, potential intimate partners, and family members, and that they w i l l be perceived as immoral and promiscuous or sexually indiscriminant (Inhorn, 1986; VanderPlate & A r a l , 1987). For individuals with genital herpes, fear of r e j e c t i o n can i n t e r f e r e with various relationships and may be generalized to fear of any intimate or sexual rel a t i o n s h i p (Catotti et a l . , 1990; Jadack et a l . , 1990). Fear of r e j e c t i o n and subsequent fear of disclosure may lead infected individuals into f e e l i n g a need to keep t h e i r disease a secret, which can i n t e r f e r e with t h e i r obtaining necessary and needed emotional support (Inhorn, 1986; K e l l e r et a l . , 1991). Concern over disease transmission further complicates the issue of disclosure (Inhorn, 1986). Lack of information, misinformation and myths regarding transmissions leave many ind i v i d u a l s intensely concerned over transmission of the disease to others, including t h e i r sexual partner, t h e i r c h i l d r e n during pregnancy and c h i l d b i r t h , and t h e i r friends, family members and acquaintances through casual contact (Jadack et a l . , 1990; Luby & Klinge, 1985). I t i s recommended that intercourse be avoided 13 when active lesions are present. However, growing evidence about asymptomatic shedding has increased concern that there are no "safe" times for those with genital herpes to f r e e l y engage i n unprotected sexual intercourse, thus heightening i n d i v i d u a l s ' fears of being continuously infectious (Jadack et a l . , 1990). The condition of genital herpes can have a profound e f f e c t on the sexual functioning of herpes sufferers which accounts for considerable psychological d i s t r e s s and can lead to o v e r a l l tension i n in d i v i d u a l s ' sex l i v e s (Drob et a l . , 1985; Luby & Klinge, 1985). Genital herpes can in t e r f e r e with meeting new partners (Catotti et a l . , 1993; Luby & Klinge, 1985), creating emotional, p r a c t i c a l , and e t h i c a l dilemmas around whether to have sex and with whom, and around when or whether partners should be informed (Drob et a l . , 1985; Inhorn, 1986). Furthermore, in d i v i d u a l s with ge n i t a l herpes report a lack of sexual freedom, reduced frequency, sponteneity and qual i t y of sexual contacts, and problems with intimacy and sexual s a t i s f a c t i o n ( C a t o t t i et a l . , 1993; Drob et a l . , 1985; Inhorn, 1986; Luby & Klinge, 1985). Some in d i v i d u a l s choose celibacy i n response to t h e i r concerns about the consequences of genital herpes (Bierman, 1983; Drob et a l . , 1983). As a r e s u l t of these complex issues and concerns, emotional adjustment to ge n i t a l herpes may be quite d i f f i c u l t (Luby & Klinge, 1985). Lack of control and lack of p r e d i c t a b i l i t y over the course of the disease can lead to a sense of helplessness and v i c t i m i z a t i o n . During the early 1980's, l i t t l e research had been conducted to v e r i f y the claims made by the media of the severe s o c i a l and 14 psychological impact of genital herpes. As such, Drob, Loemer and Lifshutz (1985) undertook a study to i d e n t i f y the major p o t e n t i a l psychological consequences of g e n i t a l herpes. Forty-two i n d i v i d u a l s (24 women, 18 men) who were seeking counselling and/or psychotherapy regarding g e n i t a l herpes were r e c r u i t e d from the researchers' Herpes Psychotherapy C l i n i c at the New York University Medical Center. These individuals reported an average of 11 outbreaks i n the previous 12 months, i n d i c a t i n g that they represented the population with a r e l a t i v e l y high rate of recurrences. A questionnaire and indepth interviews were used to assess the impact of the disease on f i v e s i g n i f i c a n t l i f e areas: sexual functioning, interpersonal relationships, a f f e c t , s e l f -concept, and work or school performance. A profound e f f e c t on t h e i r sexual functioning was reported by nearly a l l of the respondents, along with "wider interpersonal d i f f i c u l t i e s " (Drob et a l , 1985, p. 310). The i n d i v i d u a l s i n t h i s study reported a pervasive negative e f f e c t on t h e i r emotional l i v e s as a r e s u l t of herpes, with depression being indicated by 83% of the subjects. Loss of self-esteem was reported by a l l but f i v e of the subjects and was regarded by most as a serious and pervasive problem. Impact on work and/or school performance was less problematic. Drob et a l . (1985) suggested that the impact of the disease becomes more understandable when considered within the context of: (1) the e t h i c a l issues raised by the disease r e l a t e d to disclosure, (2) the individual's personal development, psychodynamics, and self-concept, (3) and the meaning which g e n i t a l herpes has come to have i n our society. They concluded 15 that psychological reactions warranting c l i n i c a l attention could be p r e c i p i t a t e d by the s o c i a l and interpersonal d i f f i c u l t i e s inherent i n the disease. While Drob et a l . (1985) supplemented the data c o l l e c t e d from questionnaires with intensive interviews, i t was the researchers' explanations of the subjects' experience rather than the p a r t i c i p a n t s ' explanations and meanings that were the focus of the study. As well, the study was conducted with a sample of i n d i v i d u a l s who experienced enough d i f f i c u l t y dealing with the condition to seek counselling and/or psychotherapy, suggesting that these r e s u l t s may not represent the experiences of a l l i n d i v i d u a l s with herpes. Noting that the knowledge of the psychological impact of g e n i t a l herpes was based mostly on observations of i n d i v i d u a l s i n s e l f - h e l p groups or those i n therapy, Luby and Klinge (1985) conducted a study to investigate the psychosocial and psychological consequences of and adjustment to the disease with a broader sample. Seventy-four individuals with g e n i t a l herpes (48 women, 2 6 men) anonymously completed a questionnaire designed to explore such areas as s o c i a l i z a t i o n , work enjoyment and performance, self-image, sexual attitudes and behaviors, and psychological states. Thirty-two of the subjects were referred from the infe c t i o u s disease practices of two doctors, and 42 i n d i v i d u a l s were members of a national herpes s e l f - h e l p group (HELP). Ninety-six percent of the sample reported 7 to 9 recurrences within the previous twelve months, i n d i c a t i n g a population with r e l a t i v e l y high lev e l s of recurrences. As with the previous study, the results may not be generalizable to a l l 16 people with herpes. The r e s u l t s of the study generally supported those of Drob et a l . (1985). The researchers (Luby & Klinge, 1985) found that the psychosocial consequences of genital herpes were quite severe for t h i s population. While there was no evidence of a 'leper e f f e c t ' , something noted elsewhere i n the l i t e r a t u r e (Luby & G i l l e s p i e , 1981), Luby and Klinge did f i n d that "diminished s e l f -esteem, s o c i a l i s o l a t i o n , anxiety, and reluctance to i n i t i a t e close r e l a t i o n s h i p s with members of the opposite sex were prominent psychological manifestations" of the disease (p. 496). The impact of herpes was most strongly f e l t i n the area of sexual r e l a t i o n s h i p s as i t could int e r f e r e with a f u l f i l l i n g sexual l i f e . A general pessimism about sexual r e l a t i o n s h i p s was noted among subjects. Many worried about future r e j e c t i o n and there was a general concern about transmission of the disease. Depression was also common. Minimal interference was reported with work performance, relationships with colleagues, or s o c i a l s i t u a t i o n s with friends. Few differences were found between men and women with regard to the perceived e f f e c t of herpes on t h e i r l i v e s . The process of adaptation to the disease was reported as very d i f f i c u l t by many of the participants i n the study (Luby & Klinge, 1985). Only one t h i r d of the group believed they had adapted s a t i s f a c t o r i l y to the disease. The authors of the study concluded that physicians must be sensitive to the psychosocial symptoms produced by gen i t a l herpes and provide patients with emotional support, education, and r e f e r r a l s f or psychotherapy or group support where necessary. 17 The study (Luby & Klinge, 1985) provided important d e s c r i p t i v e information regarding the psychosocial consequences of g e n i t a l herpes and the extent to which the studied population experienced those consequences. However, the study was li m i t e d by the format of the questionnaire used, which did not allow subjects to expand on any pa r t i c u l a r point or to provide subjective explanations. Jadack, K e l l e r , and Hyde (1990) conducted a d e s c r i p t i v e study to systematically explore the disease experience as described by individuals with genital herpes and to examine gender differences regarding that experience. Sixty volunteers (34 women, 2 6 men) with recurrent genital herpes were re c r u i t e d from an outpatient university c l i n i c i n Wisconsin and through newspaper advertisements. The average recurrence rate of these two groups was 6.4 episodes per year. Participants completed questionnaires that included items about disease c h a r a c t e r i s t i c s , disease stressors, and disease impact. A unique component of the study was the use of a questionnaire designed i n an open-ended format which directed respondents to i d e n t i f y and l i s t the perceived problems and stressors involved i n l i v i n g with genital herpes, as opposed to using a fixed-item questionnaire (Jadack et a l , 1990). A modified content analysis was performed on the responses to the questionnaire based on the Common Sense Model of Leventhal, Meyer and Nerenz (1980). This model emphasizes the subjective nature of the disease experience and was used as a conceptual framework for the study. Results indicated that genital herpes affected casual, 18 f a m i l i a l , and intimate relationships (Jadack et a l , 1990). Although a wide d i v e r s i t y of stressors were described, the researchers discovered that the majority of reported stressors were rel a t e d to the consequences of the disease, such as fear of t e l l i n g new sexual partners, interference with r e l a t i o n s h i p s , and stressors related to issues of transmission. With regard to disease impact, the severity of symptoms were re l a t e d to the perceived impact of the disease and re s u l t s suggested that the presence of an ongoing intimate rel a t i o n s h i p may mediate the impact of ge n i t a l herpes. Generally, the r e s u l t s suggested s i m i l a r i t y between the genders regarding the disease experience, with a number of exceptions. Women reported experiencing more worry about negative e f f e c t s on future and present health, greater disruption of d a i l y a c t i v i t y , and more p a i n f u l recurrences while the men reported that t h e i r recurrences lasted longer than those of the women i n the study. The authors of t h i s study (Jadack et a l , 1990) were one of the f i r s t groups of researchers to systematically explore the types of disease-related stressors reported by in d i v i d u a l s describing t h e i r experience of genital herpes. The wide d i v e r s i t y of stressors described by participants of the study i l l u s t r a t e d the v a r i a b i l i t y of the experience of g e n i t a l herpes. The use of an open-ended questionnaire allowed the p a r t i c i p a n t s to share t h e i r subjective experience, although the questionnaire was l i m i t e d to the stressors of the disease. Furthermore, the format did not allow for participants to expand on the stressors l i s t e d nor to explore the explanations and meanings they associated with those stressors, thereby l i m i t i n g the study with 19 regard to other consequences related to the disease experience. After a decade since the media discovered herpes, and with the advent of AIDS which captured public attention, the American So c i a l Health Association (ASHA—a private, nonprofit, national agency dedicated to the prevention and control of a l l sexually-transmitted diseases) sampled i t s service population to explore t h e i r experiences with herpes and to assess whether herpes was s t i l l a cause of concern (Catotti, Clarke, & Catoe, 1993) . A systematic sample of 5000 individuals, chosen from approximately 10,000 current readers of The Helper (a quarterly journal f o r people with herpes published by the ASHA), were mailed a 12-page questionnaire which addressed medical history, health-care experience, treatment, personal impact, and demographic information. Of the 3120 individuals who completed questionnaires (a 62% response rate), 2940 in d i v i d u a l s (65% women and 35% men) were included i n the study. Analysis was s t r i c t l y d e s c r i p t i v e and consisted of observed frequencies and cross-tabulations . Results indicated that the psychosocial impact of g e n i t a l herpes could be "dramatic and long-lasting" (Catotti et a l . , 1993, p. 80). Diagnosis was often associated with emotional upheaval, and recurrences were associated with emotional stress and anxiety. Many individuals were d i s s a t i s f i e d with the diagnosing health-care providers, p a r t i c u l a r l y r e l a t e d to lack of advice given around the emotional issues of the disease. Depression and fear of r e j e c t i o n were reported by over one-half of the respondents. Respondents noted that having herpes affected t h e i r feelings of d e s i r a b i l i t y and that sexual enjoyment 20 and a c t i v i t y were negatively affected by herpes. Concerns about disease transmission were also common. The researchers (Catotti et a l , 1993) concluded that herpes was indeed s t i l l a cause of concern for those i n d i v i d u a l s infected with the disease. They further noted that the d i s s a t i s f a c t i o n indicated by people with herpes regarding t h e i r health care providers suggested that professionals working with i n d i v i d u a l s who have genital herpes need to review and modify t h e i r behavior to better meet the needs of these patients. Although the researchers i n t h i s study (Catotti et a l , 1993) sampled a li m i t e d population, namely that drawn from the readership of The Helper, the findings r e f l e c t e d important p o t e n t i a l issues for individuals with herpes. The researchers expanded on the work of other studies by including an assessment of the infected individual's perception of the health care provided. However, because of the questionnaire format, p a r t i c i p a n t s could not expand on t h e i r responses or provide further information regarding the meaning the various herpes-r e l a t e d experiences held for them, thereby l i m i t i n g our understanding of the experience of l i v i n g and coping with herpes. In the mid-1980's, Inhorn (1986) conducted an ethnographic study to explore what i t was l i k e to be an i n d i v i d u a l with g e n i t a l herpes. The research was based on two months of f i e l d -work among adults who attended HELP meetings (a U.S. nationwide, volunteer-run, self-help organization for i n d i v i d u a l s with g e n i t a l herpes) as well as follow-up, c o n f i d e n t i a l phone interviews with eight volunteers (4 women, 4 men) i n t h e i r mid-20 's to late-30's. 21 Inhorn (1986) found that the issue of 'information management' was the c r u c i a l variable i n the p a r t i c i p a n t s ' l i v e s , and that the ' i n v i s i b l e ' nature of gen i t a l herpes created "emotional, p r a c t i c a l , and e t h i c a l dilemmas" i n terms of information managment (p. 62). The issue of "honesty" toward sexual partners appeared to be the major dilemma faced by in d i v i d u a l s with herpes, with an "overwhelming fear of r e j e c t i o n " c i t e d as the reason disclosure was so d i f f i c u l t (p. 60). They were also reluctant to t e l l friends and family they had herpes, creating emotional, p r a c t i c a l , and e t h i c a l dilemmas f o r the pa r t i c i p a n t s . Inhorn (1986) found that most individuals chose to deal with the d i f f i c u l t i e s of information management by (1) d i v i d i n g the world into e i t h e r a sel e c t group of trusted i n d i v i d u a l s ('insiders'), or 'outsiders' who could not be trusted with the secret; (2) l i m i t i n g sexual partners to avoid the issue of disclosure as well as disease transmission; or (3) j o i n i n g a s e l f - h e l p group for gen i t a l herpes patients that offered emotional and c l i n i c a l support. Subjects i n the study reported that such steps were necessary because the media had led to stigmatization of the disease, transforming i t from an unknown condition to a disease with a "loathsome and leprous image" (p. 62) . The subjective experience of the i n d i v i d u a l was the focus of the study (Inhorn, 1986) and provided r i c h information regarding the p a r t i c i p a n t s ' explanations, understandings, and meanings. However, the majority of data was co l l e c t e d from people involved i n a s e l f - h e l p group, suggesting that the sample consisted 22 p r i m a r i l y of individuals who were experiencing d i f f i c u l t y dealing with the condition and were seeking support. While the study did point to the importance of considering s o c i a l context when exploring i n d i v i d u a l s ' personal meanings, the focus was primarily on society's meanings of the disease. The studies reviewed confirm the negative psychosocial impact of g e n i t a l herpes on the l i v e s of ind i v i d u a l s who contract the disease. The condition can a f f e c t casual, f a m i l i a l , and intimate relationships, with a profound e f f e c t being experienced by some ind i v i d u a l s i n the area of sexual r e l a t i o n s h i p s (C a t o t t i et a l . , 1993; Drob et a l . , 1985; Inhorn, 1986; Jadack et a l . , 1990; Luby & Klinge, 1985). Diminished self-esteem and a negative e f f e c t on t h e i r emotional l i v e s as a r e s u l t of having herpes are experienced by many people with herpes ( C a t o t t i et a l . ; Drob et a l . ; Luby & Klinge). Lack of support from diagnosing health-care providers can add to the emotional d i s t r e s s experienced as a r e s u l t of contracting the disease (Catotti et a l . ) . While considerable v a r i a b i l i t y i s noted among disease-r e l a t e d stressors reported by individuals, most stressors appear to be rela t e d to the consequences of the disease such as fear of t e l l i n g new sexual partners, issues of transmission, and for women, fear of negative health e f f e c t s (Jadack et a l . , 1990). The s o c i a l stigma attached to having the sexually-transmitted disease of ge n i t a l herpes also appears to a f f e c t many areas of l i f e f or some individuals leading to reduced self-esteem, fear of r e j e c t i o n and judgment by others, and impaired sexual r e l a t i o n s h i p s (Drob et a l . , 1985; Inhorn, 1986). 23 A d a p t a t i o n to the Disease As a r e s u l t of these complex issues and concerns, emotional adaptation to gen i t a l herpes may be quite d i f f i c u l t although the actual proportion of individuals who experience a great deal of d i s t r e s s i s unknown. Luby and Klinge (1985) found that one t h i r d of the 48 women and 2 6 men i n t h e i r survey of the psychosocial and psychological consequences of genital herpes reported that they had adapted to the disease i n a s a t i s f a c t o r y manner, 17% judged t h e i r adjustment to be poor, and most considered adaptation to the disease to be a very d i f f i c u l t process. Item analysis of the emotional items from the questionnaire used i n the study revealed that "maladjustment was associated with a loss of control over one's l i f e and the perception that the disease i s a constant threat to one's relationships. . . and to one's functioning, p a r t i c u l a r l y i n the area of sex" (p. 496). In a review of the l i t e r a t u r e concerning the psychosocial aspects of the in f e c t i o n , VanderPlate and Ar a l (1987) outlined several issues that make emotional adaptation to g e n i t a l herpes d i f f i c u l t : (1) the s i t e of the in f e c t i o n and i t s sexual nature, (2) the absence of a cure and lack of s i g n i f i c a n t treatment, (3) the latency of the virus and the recurrent nature of the symptoms, (4) the powerful stigma attached to the disease, and (5) the pervasiveness of popular misconceptions and myths regarding herpes fed by the mass media. In a q u a l i t a t i v e study using grounded theory, Swanson and Chenitz (1993) explored and described the psychosocial process used by individ u a l s i n adapting to l i v i n g with g e n i t a l herpes. Seventy adults (59% women) between the ages of 18 and 35 years 24 were re c r u i t e d through newspaper advertisements and from health care p r a c t i t i o n e r s i n the San Francisco Bay area to p a r t i c i p a t e i n indepth interviews. Interviews were semi-open i n format and interview data were analysed using constant comparative methods developed by Glaser and Strauss (1967). Categories were developed and adjusted as theory emerged. Swanson and Chenitz (1993) found that the nature of the process of adapting to g e n i t a l herpes i s a c y c l i c a l one involving regaining "a valued sense of s e l f within a society that shames persons with t h i s disease" (p. 272). The process was described i n three stages. During stage one, Protecting Oneself, the i n d i v i d u a l guards and defends the s e l f against a perceived loss of s e l f that occurs during diagnosis. This stage i s composed of four phases: (1) attending by monitoring and caring f o r the body, (2) reacting by responding to the diagnosis and i t s meaning, (3) seeking explanations to determine from whom the disease was contracted, and (4) r e s i s t i n g loss to withstand the meaning of the disease i n t h e i r l i v e s . A major consequence of stage one was protecting the s e l f by distancing oneself from others. During t h i s stage, Swanson and Chenitz (1993) found that i n d i v i d u a l s reacted more severely to the diagnosis of g e n i t a l herpes i f they: (a) f e l t betrayed and angry at the person who gave them herpes, (b) had a history of f r u s t r a t i o n with the medical community due to misdiagnosis, (c) had not suspected that they had the disease, (d) lacked a supportive partner, and/or (e) perceived negative attitudes on the part of the health professionals conveying the diagnosis. During stage two, Renewing Oneself, described by Swanson and 25 Chenitz (1993), the s e l f i s renewed through the process of resuming l i f e by "reaching out and making l i f e changes to t r y to overcome the distance created by the disease and i t s meaning" (p. 282). This stage i s composed of three phases: (1) seeking information by finding resources i n the community for information and for help i n coping with the disease, (2) managing r i s k s to increase chances of acceptance by a sexual partner while decreasing the chances of transmitting the disease, (3) balancing one's l i f e by t r y i n g to manage symptoms, change one's l i f e s t y l e to decrease stress and add healthy behaviours, and refocus one's l i f e beyond the disease and i t s accompanying stigma. Stage three, Preserving Oneself, (Swanson & Chenitz, 1993) involves adopting a management st y l e that allows control of information about the s e l f i n a way that i s congruent with the ind i v i d u a l ' s s e l f perceptions. Three sty l e s were indicated by par t i c i p a n t s i n t h e i r study: (1) revealing, where partners were rout i n e l y t o l d of the diagnosis, (2) accomodating i n which disclosure of t h e i r diagnosis to a partner was viewed as conditional, and (3) avoiding, where disclosure to partners was rou t i n e l y avoided, to the point of withdrawal of s o c i a l contacts by some in d i v i d u a l s . Swanson and Chenitz (1993) noted that while t h i s process of adaptation to ge n i t a l herpes i s sim i l a r to that of i n d i v i d u a l s adapting to other chronic i l l n e s s e s , adaptation to herpes i s further complicated by the fact that the disease i s contagious. They also found that under certain conditions, such as when an in d i v i d u a l was i n a supportive rel a t i o n s h i p and when the disease course was stable, l i t t l e a l t e r a t i o n seemed to be required i n the 26 process of adaptation as described. However, changes i n these conditions could force an individual to repeat e a r l i e r stages of the process. The findings of the study (Swanson and Chenitz, 1993) are consistent with those of other studies supporting the importance of disclosure as a central issue i n the l i v e s of i n d i v i d u a l s with g e n i t a l herpes (Drob et a l . , 1985; Inhorn, 1986). The researchers also underscored the importance of "an assessment of the meaning of the disease to the c l i e n t within the s o c i a l context of the c l i e n t ' s world" (Swanson & Chenitz, p. 294). Emotional adaptation to genital herpes can be d i f f i c u l t for i n d i v i d u a l s who contract the disease because of a number of factors, such as the sexual nature of the disease, lack of treatment, and the powerful s o c i a l stigma attached to the condition (Luby & Klinge, 1985; Swanson & Chenitz, 1993; VanderPlate & A r a l , 1987). Adaptation appears to be a process whereby indivi d u a l s regain a valued sense of s e l f , something that may be l o s t when they contract the disease. Furthermore, the process of adaptation may be c y c l i c a l as changes i n c e r t a i n conditions may force an individual to go back and repeat e a r l i e r stages of the process (Swanson & Chenitz). S o c i a l Context and Female Sexuality The s o c i a l context within which people l i v e with g e n i t a l herpes i s acknowledged i n the l i t e r a t u r e with frequent references to the e f f e c t of the media on attitudes towards t h i s sexually-transmitted disease (Bierman, 1985; C a t o t t i et a l . , 1993; Drob et a l . , 1985; Inhorn, 1986; Swanson & Chenitz, 1993; VanderPlate & A r a l , 1987). However, the s o c i a l context related to attitudes 27 towards women's sexuality and bodies, a context within which women experience themselves and make meaning of the disease, i s not s p e c i f i c a l l y addressed. While r e l a t i v e l y l i t t l e has been written about female sexuality, the l i t e r a t u r e suggests that the experience of t h e i r own sexuality i s c o n f l i c t u a l for many women (Kitzinger, 1983; Ussher, 1989). Feminist researcher and writer Ussher (1989) notes that the "often gu i l t - r i d d e n " feelings of many women towards t h e i r bodies and t h e i r sexuality contrast sharply with the "almost proud" attitude of men (p. 18). Western culture seems to provide few models for healthy female sexual functioning. Analysis of language used to describe female sexuality has revealed that the language i s either s i l e n t about female sexuality when i t i s conceived of as not e x i s t i n g outside i t s r e l a t i o n s h i p to reproduction, or condemning as i t i s re l a t e d to promiscuity and immorality (Kitzinger, 1983; Ussher, 1989). Development of a po s i t i v e sexual i d e n t i t y can be d i f f i c u l t i n such an environment as adolescent g i r l s struggle to "reconcile [their] desire for an exploration of sexual a c t i v i t y with the stereotypes available" (Ussher, 1989, p. 26). Many women experience feelings of shame and secrecy with regard to t h e i r bodies and t h e i r sexuality (Kitzinger, 1983; Ussher, 1989). I t i s within t h i s s o c i a l context that women with g e n i t a l herpes must make meaning of having a chronic and recurrent sexually-transmitted disease. In a study using questionnaires and indepth interviews of 24 women and 18 men who were seeking counselling or psychotherapy as a r e s u l t of d i f f i c u l t i e s with g e n i t a l herpes, Drob et a l . (1985) suggested that " i n d i v i d u a l s 28 seeking psychological help because of ge n i t a l herpes are usually vulnerable to i n t e r n a l i z i n g the negative representations of herpes sufferers which abound i n the media and i n public discourse" (p. 314). This may be p a r t i c u l a r l y s i g n i f i c a n t for women who are already vulnerable to i n t e r n a l i z a t i o n of negative media representations of t h e i r bodies and sexuality (Ussher, 1989) . Considering the impact of the media on popular notions regarding women's bodies and sexuality (Ussher, 1989) and on the s o c i a l meaning of herpes (Inhorn, 1986) i t seems important to remain s e n s i t i v e to how such attitudes are r e f l e c t e d i n the personal meaning women make of the experience of recurring g e n i t a l herpes. Summary This review of the l i t e r a t u r e was undertaken to examine current knowledge of the experience of recurrent g e n i t a l herpes. Research indicates that the physical consequences of g e n i t a l herpes are generally considered minor with a number of exceptions that a f f e c t women (Bierman, 1985; Drob, 1986; VanderPlate & Ar a l , 1987). However, the psychosocial consequences of the disease appear to be di s t r e s s i n g for many individuals with herpes, with the greatest impact being shown to occur i n the area of sexual functioning (Catotti et a l . , 1993; Drob et a l . , 1985; Inhorn, 1986; Jadack et a l . , 1990; Luby & Klinge, 1985). Studies have also shown that emotional adaptation to the condition can be very d i f f i c u l t as a r e s u l t of a number of factors, including the sexual nature, i n c u r a b i l i t y , and the latency and recurrence cycles of the disease (Inhorn, 1986; Luby & Klinge, 1985; VanderPlate & Ara l , 1987). 29 To date, most studies addressing the psychosocial impact of ge n i t a l herpes have placed primary emphasis on quantifying consequences reported i n the c l i n i c a l l i t e r a t u r e . In using questionnaires i n these studies, researchers (C a t o t t i et a l . , 1993; Drob et a l . , 1985; Luby & Klinge, 1985) have examined the experience and consequences of herpes based on predetermined b e l i e f s regarding s a l i e n t variables. As a r e s u l t , the experience of g e n i t a l herpes as i t i s l i v e d with and made sense of by the in d i v i d u a l remained unexplored. The q u a l i t a t i v e studies that have been undertaken have provided valuable information regarding the experience of the disease from the perspective of individuals who were seeking support for herpes-related issues (Inhorn, 1986) and the process of adaptation to the disease by young people (Swanson & Chenitz, 1993) . A gap i n the l i t e r a t u r e remained regarding the experience of women with recurring genital herpes including those who do not seek out help or support. An indepth exploration of the experience as l i v e d with and made sense of by i n d i v i d u a l women remained to be undertaken, p a r t i c u l a r l y i n l i g h t of the unique and p o t e n t i a l l y serious physical consequences faced by women, and the s o c i a l context within which women deal with t h i s incurable, sexually-transmitted disease. The current study was undertaken to address these gaps i n the l i t e r a t u r e and to provide an indepth exploration of the phenomenon of recurring g e n i t a l herpes among women. 30 Chapter Three M e t h o d o l o g y R e s e a r c h D e s i g n The working assumption of phenomenological research i s that "people make sense out of t h e i r experiences and i n doing so create t h e i r own r e a l i t y " (Locke, Spirdieso & Silverman, 1993, p. 99). In order to understand t h i s r e a l i t y , the researcher must contact the phenomenon at the l e v e l of the i n d i v i d u a l ' s l i v e d experience. This i s achieved by focussing on the experiences, perceptions, b e l i e f s , feelings, and explanations given by the pa r t i c i p a n t . The researcher extracts the themes contained i n the pa r t i c i p a n t s ' s t o r i e s to discover the underlying structures of meaning that characterize the phenomenon (Osborne, 1990, p. 85). Phenomenological research presupposes that the underlying structures of a phenomenon w i l l "transcend" researchers' personal interpretations as well as variable facts to r e s u l t i n "empathic g e n e r a l i z a b i l i t y " , or recognition of the desc r i p t i o n of the experience by others who share that experience (Osborne, p. 86). Phenomenological research designs are p a r t i c u l a r l y useful when l i t t l e i s known about a phenomenon, when biases, d i s t o r t i o n s , or omission exist concerning what i s known, or when aspects of a phenomenon are not e a s i l y quantified (Giorgi, 1985; Osborne, 1990; Sandelowski, Davis and Harris, 1989). In the case of recurring g e n i t a l herpes i n women, l i t t l e research has made use of descriptions of t h e i r subjective experience (Drob, 1985; Inhorn, 1986; Jadack, K e l l e r and Hyde, 1990) or explored the 31 meanings they construct about t h e i r experiences (Inhorn, 1986). Very l i t t l e i s known about the meaning and experience of recurring g e n i t a l herpes for women. I t was therefore, the goal of t h i s research study to accurately describe the experience and meaning of recurring genital herpes for women i n such a way that women "who also share that experience [would] immediately recognize the description" (Sandelowski, et a l . , p. 77). Personal Assumptions Phenomenology recognizes that the researcher i s very much part of the process of research, influencing the question chosen for study, the c o l l e c t i o n of data, and the in t e r p r e t a t i o n of data ( C o l a i z z i , 1978; Osborne, 1990). The aim of phenomenological research i s to "understand a phenomenon by allowing the data to speak for themselves, and by attempting to put aside one's preconceptions as best one can" (Osborne, p. 81). The researcher must r e f l e c t upon and attempt to a r t i c u l a t e biases, presuppositions, personal i n c l i n a t i o n s and predispositions which may influence or bias the research process and r e s u l t s ( C o l a i z z i ; Osborne). This allows the reader to take the researcher's perspective into account when viewing the in t e r p r e t a t i o n of the data. My perception that men and women experience the world very d i f f e r e n t l y ( i f not experience a d i f f e r e n t world) developed early on as I watched the men and women, boys and g i r l s around me l i v e t h e i r l i v e s . A feminist perspective informs my views, supporting the observation that our society treats women d i f f e r e n t l y than men, that more power i s granted men generally than women, that double standards of acceptable behavior e x i s t for men and women, 32 and that such d i f f e r e n t i a l treatment serves to maintain a pa t r i a r c h a l structure which subordinates and oppresses women, in v a l i d a t i n g what i s feminine. This perspective also supports my b e l i e f that women's voices and personal meanings, f e e l i n g s , knowledge and b e l i e f s are as v a l i d and as valuable as any other voices or ways of knowing and being. Therefore hearing women's st o r i e s as d i s t i n c t from men's sto r i e s i s important i f not c r u c i a l . Because herpes i s a sexually-transmitted disease, I assumed that the partic i p a n t s would touch upon topics r e l a t e d to sexuality at some point i n t h e i r s t o r i e s . My i n t e r e s t i n women's sexuality grew with my own struggles to develop a p o s i t i v e sexual i d e n t i t y within a society that I perceive allows very narrow expression of that i d e n t i t y . I have long been aware of the power of the media to influence and reinforce the role s that both men and women are "allowed" to hold i n our society, of the narrowness of media images of women's sexuality, and of the double standards that are subtly and not-so-subtly maintained within the media. I t i s clea r to me that the personal meanings we make of our experiences i n the world are shaped and influenced by c u l t u r a l meanings and that our ideas and thoughts are very much a product of our times. Personal experience and discussions with other women have led me to believe that for most women, sexuality cannot be separated from intimacy, and that intimacy for women i s often experienced d i f f e r e n t l y than intimacy for men. I also maintain that how a woman experiences herself, both p h y s i c a l l y and emotionally (and sometimes s p i r i t u a l l y ) , a f f e c t s her experience 33 of her sexuality and that women's sexuality cannot be f u l l y understood without taking these aspects into consideration. My own e f f o r t s to make some meaning of my experience of recurring g e n i t a l herpes led to certain assumptions on my part. I was convinced that coming to terms with t h i s recurring condition required women to re-examine various aspects of t h e i r sexuality that could already be c o n f l i c t u a l for them. I suspected that a woman's sexual i d e n t i t y (and perhaps i d e n t i t y on the whole) might be influenced by the process of dealing with recurring g e n i t a l herpes. I t was my guess that most, i f not a l l , of the women would discuss t h e i r sexuality at some point during the interview. I assumed that the way in which a woman constructed the meaning of t h i s sexually-transmitted disease would influence the way she dealt with and managed the disease. I was aware that my personal experience with recurring g e n i t a l herpes would inform the way that I heard other women's st o r i e s and viewed the data. While I continually monitored my own biases and b e l i e f s regarding t h i s phenomenon, my l i v e d experience also benefitted t h i s research i n that "the knower had some f i t with the thing to be known", s e n s i t i z i n g me to the phenomenon (Sandelowski, et a l . , 1989, p.78). However, t h i s did not preclude my being open to new information or aspects of the experience that d i f f e r e d from my own experience. I was also aware that my assumptions changed as I proceeded through the process of t h i s research, for example, i t became c l e a r early on in the interview process that not a l l of the women would discuss t h e i r experience i n terms of how herpes affected t h e i r sexuality or sexual i d e n t i t y . 34 P a r t i c i p a n t s The s e l e c t i o n of participants for t h i s study was purposefully achieved by specifying a number of c r i t e r i a to ensure that participants were experienced with the condition of recurring g e n i t a l herpes and could illuminate that experience ( C o l a i z z i , 1978; Osborne, 1990). A r e l a t i v e l y small number of p a r t i c i p a n t s were interviewed during t h i s study because the focus of interviews was depth and richness of information ( C o l a i z z i ) . Six p a r t i c i p a n t s were interviewed, providing enough data to obtain the basic structure of the phenomenon and to achieve empathic g e n e r a l i z a b i l i t y (Osborne). C r i t e r i a . To be e l i g i b l e for p a r t i c i p a t i o n i n t h i s study p a r t i c i p a n t s were required to meet certain c r i t e r i a . The p a r t i c i p a n t s were required to be women over 19 years of age. A diagnosis of g e n i t a l herpes must have been made by a physician at l e a s t one year p r i o r to p a r t i c i p a t i o n i n the study and at l e a s t one recurrence must have been experienced during that time. A verbal confirmation of t h i s diagnosis from the p a r t i c i p a n t was deemed s u f f i c i e n t . Participants could not be infected with any other sexually-transmitted diseases or be seeking counselling to deal with herpes-related concerns at the time of the interview. Procedure Recruitment. Participants were recruited through the placement of notices (see Appendix A) and word of mouth. Notices describing the study and i n v i t i n g p a r t i c i p a t i o n were posted at the University of B r i t i s h Columbia Herpes C l i n i c , The Vancouver Herpes Support 35 Group, The Women's Health Center, and the Women's Health C o l l e c t i v e , and i n numerous medical c l i n i c s . The Vancouver Herpes Support Group was also contacted to i n v i t e p a r t i c i p a t i o n of women members. Placement of notices i n diverse settings enabled a wide range of individuals to be informed of the study. The Herpes C l i n i c was asked to recommend two pa r t i c i p a n t s to add var i e t y to the sample; however the c l i n i c declined due to issues of c o n f i d e n t i a l i t y . As a re s u l t , a l l of the pa r t i c i p a n t s were s e l f - s e l e c t e d . Women who were interested i n p a r t i c i p a t i n g i n t h i s study were asked to contact the researcher by phone. During t h i s contact the researcher gave more information about the study and attempted to assess whether the inclusion c r i t e r i a were met and whether the poten t i a l participants were interested i n p a r t i c i p a t i n g i n the research or were act u a l l y looking f o r therapy. The f i r s t s i x women who met the c r i t e r i a were i n v i t e d to p a r t i c i p a t e i n the study. Additional women were added to a wait l i s t i n the case that more participants were required to generate s u f f i c i e n t data for the study. Those women that were interested were also given information regarding other studies on herpes being conducted i n the c i t y at t h i s time. An appointment was set for an indepth interview at a mutually agreeable time and loca t i o n with each of these women. The interview. Open-ended, minimally structured, audiotaped interviews took place i n the pa r t i c i p a n t s ' homes, or i n the case of one par t i c i p a n t , i n the researcher's home. The researcher attempted to e s t a b l i s h an atmosphere of equality, respect and t r u s t to 36 encourage the authentic description of each p a r t i c i p a n t ' s experience ( C o l a i z z i , 1978; Osborne, 1990). The researcher attempted to " l i s t e n . . . with more than just [her] ears", l i s t e n i n g a c t i v e l y and empathically ( C o l a i z z i , p.64). In an attempt to avoid leading the participants i n the d i r e c t i o n of the researcher's preconceived ideas, prompts and probes were used only to encourage further c l a r i f i c a t i o n (Osborne). The i n i t i a l interviews were between one to two hours long depending on the length of time required by each p a r t i c i p a n t to share her experience of recurring g e n i t a l herpes. Immediately p r i o r to the interview, time was made available for both the researcher and the participant to become more comfortable with one another through casual conversation. The researcher then provided a b r i e f overview of the study to c l a r i f y both the purpose of the research and expectations for the study. The p a r t i c i p a n t s were invited to share t h e i r expectations, concerns and questions at t h i s time. Each participant was asked to sign two copies of a consent form and to r e t a i n one copy f o r her records (see Appendix B). An orienting statement was read to provide a point of beginning for the interview (see Appendix C). The p a r t i c i p a n t s were allowed to d i r e c t the interview, covering the aspects each considered most relevant to her experience. The researcher had a prepared l i s t of questions available (see Appendix D) that allowed her to probe for more information or to prompt a p a r t i c i p a n t who had "run out of steam" (Osborne, 1990, p. 84) . The questions were only used i f the topic had been ra i s e d by the p a r t i c i p a n t previously. Before probes were used to e l i c i t 37 s p e c i f i c information or further c l a r i f i c a t i o n , s i l e n c e was employed as much as possible to allow the p a r t i c i p a n t f u l l expression of what seemed relevant to her (Sandelowski et a l . , 1989). Once the interviews were completed, p a r t i c i p a n t s were encouraged to write down any additional thoughts and fe e l i n g s regarding t h e i r experience they wished to discuss during the v a l i d a t i o n interview. Af t e r each interview, the taped interviews were transcribed verbatim and analyzed for themes. The par t i c i p a n t s were provided with pseudonyms to protect c o n f i d e n t i a l i t y . Each p a r t i c i p a n t was then contacted for a va l i d a t i o n interview of approximately one hal f to one hour during which her biographical synopsis and the extracted themes were reviewed. At t h i s time the researcher checked for "goodness of f i t " with the themes and the pa r t i c i p a n t s ' perceptions of t h e i r experience (Osborne, 1990, p. 87). Changes or additions were made to the thematic descriptions and biographical synopses based on the input of the pa r t i c i p a n t s at t h i s time. Data Analysis The procedure for thematic analysis devised by C o l a i z z i (1978) was applied to the descriptions provided i n the interviews i n order to uncover the essential meaning of the experience (Heppner, Kivlighan & Wampold, 1992). Each transcribed interview, referred to as a protocol, was read to get an o v e r a l l sense of the participant's experience. During a second reading, each protocol was reduced to s i g n i f i c a n t statements by extracting the sentences or phrases which pertained to the research t o p i c . The meaning of each s i g n i f i c a n t statement was formulated by the 38 researcher who attempted to re t a i n as much of the subjects' own lanaguage as possible i n an e f f o r t to "allow the data to speak for i t s e l f " ( C o l a i z z i , p. 59). In t h i s step, the researcher was required to "leap from what [the] subjects say to what they mean" ( C o l l a i z z i , p. 59). The s i g n i f i c a n t statements together with t h e i r formulated meanings were clustered according to s i m i l a r i t y . These c l u s t e r s of meanings were then organized into possible themes. Feedback from the research supervisor was incorporated i n grouping some of the themes into higher-order clu s t e r s . Throughout the en t i r e process of analysis, reference was made back to the o r i g i n a l protocols for va l i d a t i o n . The re s u l t s of t h i s analysis were synthesized i n a condensed description of the experience of recurring g e n i t a l herpes for women i n an attempt to a r t i c u l a t e a cl e a r statement of the fundamental structure of the experience. This de s c r i p t i o n was validated by each p a r t i c i p a n t i n a subsequent interview. Many suggestions made by p a r t i c i p a n t s were incorporated into the f i n a l written analysis. Limitations of the Study G e n e r a l i z a b i l i t y as defined i n quantitative studies does not apply i n a phenomenological study (Heppner et a l . , 1992). The goal i n a phenomenological study i s to achieve empathic g e n e r a l i z a b i l i t y by describing the deep structures of the experience which "transcend variable f a c t s " (Osborne, 1990, p. 87) and a p a r t i c u l a r researcher's interpretations. Empathic g e n e r a l i z a b i l i t y i s achieved to the extent that the formulated structure "resonates with the experiences of other people, not i n the study, who have experienced the phenomenon" (Osborne, p. 88). 39 While v a r i a b i l i t y among the sample i s sought, phenomenology does not claim to exhaustively investigate any phenomenon ( C o l a i z z i , 1978). Carefully a r t i c u l a t e d i n c l u s i o n c r i t e r i a a l e r t the reader to the population of individuals to which the common extracted themes should apply. More par t i c i p a n t s and longer interviews may have f a c i l i t a t e d a broader des c r i p t i o n of the meaning and experience of recurring g e n i t a l herpes. However, the time and resources needed to complete a more extensive study were not a v a i l a b l e to t h i s researcher. Phenomenological methodology accepts that "language does not necessarily convey l i v e d experience unambiguously" (Osborne, 1990, p. 83). The meanings contained i n the p a r t i c i p a n t s statements were formulated by the researcher and were affected by her o r i e n t a t i o n and assumptions. The description of t h i s researcher's assumptions and biases allows the reader to take the her perspective into account when evaluating the research. Close supervision by a research supervisor has further ensured that the influence of the researcher was accounted for throughout the research process (Kreftig, 1991). The interview, a s e l f - r e p o r t measure, was the only source of data used i n t h i s phenomenological study. Issues around s o c i a l d e s i r a b i l i t y and the sensitive nature of the material may influence what participants choose to report. The a u t h e n t i c i t y of the descriptions given by participants i s affected by the researcher's a b i l i t y to establish good rapport with the p a r t i c i p a n t s , to observe and be sensitive to non-verbal cues, and to project a p o s i t i o n of "respectful concern" (Osborne, 1990, p. 82). This researcher's t r a i n i n g as a counsellor ensured the 40 necessary q u a l i f i c a t i o n s for t h i s method of data gathering. V a l i d a t i o n interviews further ensured that participants'* experiences were accurately represented. A f i n a l check of the v a l i d i t y of the r e s u l t s would be the extent to which the f i n a l descriptions r e f l e c t the experiences of other women with recurring g e n i t a l herpes who are not i n the study (Kr e f t i g , 1991), a step that, while desirable, were beyond the resources of t h i s study. 41 Chapter Four Results The common themes that emerged from the s i x women's s t o r i e s are presented i n t h i s chapter. Each of the participants'* experience with recurring genital herpes was d i f f e r e n t . However, a number of s i m i l a r i t i e s existed within those diverse experiences of l i v i n g with the disease. A b r i e f p r o f i l e of each participant describing a number of key areas of experiencing i s provided i n order for the reader to become f a m i l i a r with the uniqueness of the women. The common themes within t h e i r experience are then outlined and discussed. The Participants Karen. Karen was a single, 33 year old Caucasian woman who had herpes for three years. She had one outbreak i n the year p r i o r to p a r t i c i p a t i n g i n the study. She was i n the process of completing her B.A. When Karen f i r s t contracted herpes, she was very i l l with extreme f l u - l i k e symptoms for almost three months before lesions became v i s i b l e and she received an accurate diagnosis. During those three months she saw f i v e d i f f e r e n t doctors, was not tested fo r an STD, and was treated for urinary t r a c t i n f e c t i o n . She described the doctor who diagnosed her as "matter of f a c t " , and reported that her dealings with the medical profession regarding herpes were consistently negative. Karen contracted herpes from her only sexual partner i n three years, although her partner never conceded that she could 42 have contracted herpes from him. The r e l a t i o n s h i p eventually ended. Karen was single at the time of the interview, having recently ended a committed relationship i n which her partner was very supportive and understanding regarding herpes. P r i o r to her recent relationship breakup, Karen said she f e l t "O.K." with having herpes. However, the recent change to sing l e status made her f e e l less secure. She described herpes as a "nasty, pesky l i t t l e thing" that was more inconvenient and uncomfortable than anything i n her l i f e . She had never belonged to any herpes support groups. Karen said she i n i t i a l l y f e l t very i s o l a t e d because of her condition and that i t took a long time for her to t e l l anyone that she had herpes. She participated i n the present study to " l e t the secret out", thinking i t would be therapeutic to t a l k to someone about having herpes. May. May was a 40 year old Caucasian woman who had herpes for eleven years. During the year p r i o r to the interview, May had four outbreaks of herpes. At the time of the interview, May had not had a regular partner for approximately three years. She had completed two years of college. May f i r s t contracted herpes aft e r being i n a stable and committed r e l a t i o n s h i p for over a year. While her previous partner had had herpes, she believed she had avoided contracting the disease. She thought she may have contracted herpes from one of the men who were her sexual partners as her r e l a t i o n s h i p was ending, that perhaps one of them had herpes and had not informed her. 43 May experienced her partner as very supportive and understanding about her having herpes during the seven years they were together. However, after the breakup of the r e l a t i o n s h i p , she experienced two subsequent rejections when she t o l d the men that she had herpes. May's f i r s t outbreak of herpes was not severe but with time the recurrences became more painful as she experienced f l u - l i k e symptoms and extreme muscle pain i n her legs and buttocks. She began to see a homeopath\naturopath who prescribed remedies and a r e s t r i c t i v e d i e t . May gradually became a vegetarian and continued f a i t h f u l l y to take supplements and to search out new herpes remedies. Although outbreaks s t i l l occurred during s t r e s s f u l times, May f e l t she managed to deal well with herpes i n her l i f e . She noted that she handled stress better than she did when she f i r s t contracted herpes, but also believed her supplements kept the recurrences under control. May said having herpes usually wasn't an issue i n her l i f e and she didn't think about having i t unless she had an outbreak and was about to make love. She thought i t would be nice to have a partner who already had herpes so she wouldn't have to worry about giving i t to him. May had never belonged to a herpes support group. May pa r t i c i p a t e d i n the study because she wanted people to know that "while i t i s not the most comfortable or wonderful thing to have, i t ' s not the most ho r r i b l e thing that's happened to you". Margaret. Margaret was a 41 year old Caucasian woman who had herpes 44 f o r 21 years. She had three outbreaks i n the twelve months p r i o r to the interview. Margaret l i v e d with her partner and two chil d r e n . She was a university graduate. Margaret contracted herpes i n the early seventies from the man she was l i v i n g with i n a large Eastern c i t y . He had t o l d her he infrequently got sores on his penis but didn't know i f they were contagious since other g i r l f r i e n d s had not contracted anything. L i t t l e was p u b l i c a l l y known about herpes at the time and a diagnosis was not re a d i l y available. Margaret's f i r s t outbreak of herpes was extremely severe and p a i n f u l , but subsequent recurrences were minor. During the early years she had recurrences every month or every other month, usually around the time of menstruation. Her physician was not concerned and neither Margaret nor her partner knew what they had u n t i l they recognized t h e i r symptoms from the media exposure herpes received i n the late 70's. Margaret received a diagnosis eight years a f t e r f i r s t contracting herpes. Margaret experienced herpes as "a mild i r r i t a t i o n " which she said she forgot about when she was busy. She did not think that her l i f e had been negatively affected by having herpes. She stated that she was not ashamed of having herpes but also d i d not consider i t a "conversation piece". Maragaret said that neither her present partner with whom she had been f o r one year, nor her former partner who was the father of her children, considered herpes a problem i n t h e i r relationships. Margaret participated i n the study because of the misinformation that she believed had come forward i n the media. She hoped that what she had to say might be of some signficance 45 to others i n terms of research. Brenda. Brenda was a 45 year old Caucasian woman who had herpes for approximately s i x years. She had eight outbreaks during the 12 months p r i o r to the interview. Brenda had been si n g l e since shortly a f t e r contracting herpes. She had a u n i v e r s i t y education. Brenda developed herpes at the time an intimate r e l a t i o n s h i p she was involved i n was breaking apart. She was unsure from whom she contracted herpes since both she and her partner had other sexual partners as t h e i r relationship was di s s o l v i n g . A f t e r breaking up with her partner, Brenda "took a re t r e a t " from men and sexual relationships. She noted that being single allowed her to have her body to herself and that outbreaks were not a problem because she did not have to worry about transmitting herpes. Brenda would have l i k e d to have been i n a committed and long-term relationship but said she wasn't sure whether i t was possible to have a sexual r e l a t i o n s h i p with herpes and for everything to be "O.K." She noted that having herpes had complicated an already very complicated area of her l i f e . Brenda volunteered for the study because she wanted to "come a l i t t l e b i t forward i n (her) a t t i t u t e towards herpes" i n hopes of being able to deal with i t better. She noted that for her, herpes was phy s i c a l l y "not a big deal", rather i t was the "emotional, s o c i a l , and psychological aspects" that she has found most d i f f i c u l t . She participated regularly i n a herpes support group which she found an important source of information and support. 46 Grace. Grace was a 32 year old Caucasian woman who had herpes for nine and a h a l f years. She had four outbreaks during the 12 months p r i o r to the interview. At the time of the study, Grace was single and l i v i n g with her preschool daughter. She had a grade 12 education and two trade c e r t i f i c a t e s . Grace contracted herpes at age 23 from her boyfriend who committed suicide four months l a t e r . She believed he transmitted the disease i n t e n t i o n a l l y to her i n order to make her commit to him and not leave him. Her primary outbreak was "excruciatingly p a i n f u l " and lasted over a month, during which time she was i n bed for a week with f l u - l i k e symptoms. I t took one and a h a l f months for her to be diagnosed. Grace described being diagnosed with herpes as " l i f e -stopping" and "devastating". She thought having herpes was l i k e having AIDS and she b r i e f l y thought about suicide. She r e c a l l e d r e c e i v i n g l i t t l e understanding, compassion, or information from the diagnosing medical professionals. However, Grace saw herself as a p o s i t i v e person who managed to "get on with" her l i f e , i n spit e of her i n i t i a l reaction. I n i t i a l l y , Grace experienced recurrences almost every month, usually around menstruation. Outbreaks lasted up to three weeks. The use of acyclovir greatly decreased outbreak severity and length and made her condition "copable". However, her e f f o r t s to conceive were frustrated by an increase i n symptom severity when she stopped taking the acyclovir. Eventually she conceived her daughter who was delivered by vaginal c h i l d b i r t h . She experienced no recurrences during her pregnancy nor the two years 47 of nursing which followed. Although she experienced some of her outbreaks as p a i n f u l , Grace i n d e n t i f i e d the issues around relationships and pregnancy as the major ones for her. She said she wished every day that she d i d not have herpes. Grace described herpes as having " l i t t l e t e n d r i l s , l i t t l e fingers" that touched every aspect of her l i f e . Grace had been i n three relationships since contracting herpes. While she wanted to be involved i n a committed re l a t i o n s h i p , she did not f e e l open to pursuing the emotional connection with a man before t e l l i n g him she had herpes and becoming p h y s i c a l l y involved. Since contracting herpes, Grace had t o l d very few people that she had herpes. She participated i n the study i n an e f f o r t to "deal with i t (herpes) i n a larger scope" and considered going to the herpes support group where she could meet other people with herpes to t a l k about her experience as well as learn from the experiences of others. S h i r l e y . S h i r l e y was a 39 year old Caucasian woman who had herpes for 16 years. She had 12 outbreaks i n the 12 months p r i o r to the interview. S h i r l e y was single at the time of the interview. She had a high school education. Shirley was unsure from who she contracted herpes, noting there were three sexual partners from whom she may have contracted the disease. She described the diagnosing doctor as being matter of fact and therefore Shirley did not concern her s e l f greatly about having the disease. I n i t i a l l y her 48 outbreaks were not very severe, however Shirley noted that her symptoms had increased i n severity over time, e s p e c i a l l y during times of stress i n her l i f e . S h i r l e y believed she brought on her outbreaks by getting stressed and by dwelling on the fact that she was alone. She would have l i k e d to have been in a committed r e l a t i o n s h i p but had been s i n g l e f o r three years. Since contracting herpes, she had one partner who she experienced as very caring and understanding of her condition and another partner who she experienced as unsupportive and h u r t f u l . Shirley believed she had attracted herpes into her l i f e because of her shame around sexuality and thought i t had a serious negative impact i n her l i f e . S h i rley participated i n the study because she f e l t that herpes was c o n t r o l l i n g her l i f e and she wanted to s t a r t taking back control i n any way she could. She wanted to f i n d ways to f e e l better about herself and accept herpes i n her l i f e . S h irley had also p a r t i c i p a t e d i n other studies on herpes and had recently joined a herpes support group. 49 Common Themes Seven common themes emerged from the researcher ' s ana lys i s of the data . These themes r e f l e c t the common experiences shared by the s i x d i f f e r e n t women that were described e i t h e r as d i s c r e t e inc idents or ongoing experiences. The common themes are l i s t e d below. While the themes are loose ly described i n the order i n which a woman may experience them, they general ly represent an ongoing process experienced by each woman as she l i v e d with and attempted to make sense of having r e c u r r i n g g e n i t a l herpes. Each theme i s def ined and further described using the words the p a r t i c i p a n t s for i l l u s t r a t i o n and by way of example. The common themes are: 1. A Sense of St igmatizat ion 2. A Sense of Shame and Secrecy 3. A Fear of Reject ion 4. A Sense of Loss 5. A Sense of Betrayal and Injus t i ce 6. A Sense of Personal Respons ib i l i ty Towards Others 7. An Ongoing Need to Deal With the Phys ica l and S o c i a l R e a l i t y of Having Recurring Geni ta l Herpes A s e n s e o f s t i g m a t i z a t i o n . Each of the p a r t i c i p a n t s i n the study acknowledged t h e i r percept ion that having herpes was viewed negat ive ly by people i n our soc ie ty and that the stigma attached to herpes af fected t h e i r experience of the disease. The women f e l t that as a s e x u a l l y -transmitted disease, herpes was automatical ly associated with immorality and indiscr iminate sexual i ty i n the mind of the general p u b l i c . They expressed the concern that people who found 50 out they had herpes would assume they were promiscuous and ascribe to them the negative judgments that are c a r r i e d by t h i s l a b e l i n our society. Furthermore, the general view of herpes as a " h o r r i b l e " , "contagious", "incurable", " g e n i t a l " disease l e f t the women i n fear of being ostracized by people who knew they had herpes. A l l of the participants made some reference to the issue of promiscuity i n r e l a t i o n to t h e i r contracting herpes, whether explaining that they had not had multiple sexual partners and had "not done anything wrong to get t h i s " , or st a t i n g that they had been "messing around" p r i o r to contracting the disease. Whatever the circumstances of having contracted the disease, the women experienced concern over being seen as promiscuous and thereby being judged as immoral. When speaking of how they expected they might be seen by people who knew they had herpes, the par t i c i p a n t s used such terms as "someone who sleeps around", "sexually promiscuous", "a r e a l sleeze bag", and "a s l u t . " The f a c t that herpes i s incurable as well as sexually contagious was seen as contributing to the public view of herpes as a " h o r r i b l e " disease. For example, one p a r t i c i p a n t blamed the media for blowing the disease " t o t a l l y out of proportion" i n the manner i n which herpes was portrayed: You hear a l l these s t o r i e s and um, you envision a l l these graphic pictures, you know, a l l these p u s - f i l l e d sores and everything else, and how i t ' s going to disrupt your sex l i f e f o r your entire l i f e and how you can't have ch i l d r e n and t h i s and that. But once you get the disease . . . you f i n d out i t ' s not the end of your l i f e . 51 The fear of judgment associated with having g e n i t a l herpes was powerfully i l l u s t r a t e d i n an incident related by one woman. She was waiting i n l i n e to use the washroom at the movies and a woman who was " r e a l l y d i r t y looking, i n a bad way" came out of one of the s t a l l s . The participant revealed her thoughts as the women ahead of her i n l i n e refused to go into the s t a l l t h i s woman had just come out of: This i s just where my judgments come through here too . . . I remember thinking the irony of t h i s . That . . . woman probably doesn't have genital herpes. Me, dressed f a i r l y clean cut, who other people would look at me and judge me as white, clean, Caucasian type, would point the finger at me and say, 'She's one of us.' They would have no qualms of going into a washroom s t a l l a f t e r I'd been there . . . i t was j u s t the whole idea that no one wanted to go use the s t a l l a f t e r t h i s . . . woman had been i n , thinking they could catch something, right? And yet me, they wouldn't think that. The p a r t i c i p a n t further commented: "Even nice people get herpes . . . of course, i t a l l comes down to d e f i n i t i o n , who's nice and what's nice and what's not." The fear of negative s o c i e t a l judgment and sense of being ostracized for having herpes i s echoed i n the words of other participants, who spoke of t h e i r fear of being seen as " d i r t y " , "not the type of person (others) want to associate with", "a second class c i t i z e n " , a "sex crimi n a l " , and a " s o c i a l pariah." Based on t h i s sense of stigmatization, the women feared they may lose the esteem and respect of family members, friends, 52 p o t e n t i a l partners, and casual acquaintances. In response, they found themselves having to explain having contracted herpes: The funny thing about having the disease, too, i s that I sometimes f e e l that I have to j u s t i f y having i t . Like, no I didn't pick somebody up i n the bar and get i t , no i t ' s not from promiscuity, no i t ' s not from having 53 d i f f e r e n t partners or whatever. . . you always f e e l l i k e you have to j u s t i f y having i t , that you're not promiscuous. While the fear of judgment or of being ostracized was usually greater than the actual occurrences of such reactions, a number of the women also related incidents where they indeed f e l t judged or cut off by others who found out they had herpes. For example, one participant r e c a l l e d the reaction of her s i s t e r ' s boyfriend upon hearing she had herpes: "I r e a l l y believe that he treated me d i f f e r e n t l y a f t e r that, l i k e he didn't want to come near me. . . 1 think he r e a l l y believed I was t h i s walking contagious v i r u s . " Incidents l i k e t h i s l e f t the women f e e l i n g ashamed or embarrassed and led them to maintain a c e r t a i n degree of secrecy regarding t h e i r disease experience. A sense of shame and secrecy. The attitudes of others regarding herpes, including the association with indiscriminate sexuality, sexual immorality, and the misconceptions about transmission led to a sense of shame and secrecy for the women. The women agreed that herpes was something "people just don't go around t a l k i n g about." They described situations where they f e l t the need to conceal the knowledge of t h e i r condition, or where they wished they had kept i t hidden. The participants experienced shame or embarrassment 53 as a r e s u l t of the reactions of others, or the fear of such reactions, which l e f t them with the sense of being seen as somehow reproachable. S p e c i f i c incidents that led to discomfort, along with t h e i r awareness of the general s o c i a l stigma attached to herpes, motivated most of the women to c a r e f u l l y regulate the disclosure of t h e i r condition to others. Embarrassment or shame were experienced by each p a r t i c i p a n t at some point i n l i v i n g with herpes, although the i n t e n s i t y of t h i s experience d i f f e r e d based on how they selected to cope with the disease. The women described s p e c i f i c incidents where the reaction of another person l e f t them f e e l i n g ashamed or embarrassed, as though they had "done something h o r r i b l e " . For example, one woman re c a l l e d an incident with a sexual partner: He was so paranoid that he got i t (herpes) i n the s p l i t second that he was i n me and out of me . . . and he jumped out of that bed so fast i t was l i k e I had leprosy! Even i n the absence of shaming experiences with others, the association with promiscuity and immorality that was attached to having herpes led some of the women to f e e l ashamed f o r having contracted t h i s sexually-transmitted disease. For example, one par t i c i p a n t stated: "Obviously I lack some morals, because i t always goes back to contracting i t sexually." The f e e l i n g of shame was i l l u s t r a t e d by the words of one woman who said: When I f i r s t got i t , the f i r s t f e e l i n g I had was not just um, being judged by other people but f e e l i n g d i r t y . And knowing I have lesions i n a very private part of my body was jus t h o r r i b l e . The sense of shame or embarrassment f e l t by the women was 54 also revealed i n the examples they gave where they believed i t was necessary to conceal knowledge of t h e i r disease or where they made e f f o r t s to dissociate themselves from anything connected to the disease. For example, a participant r e c a l l e d her fear of being exposed and humiliated at a party where the to p i c being discussed was herpes: And everyone was ta l k i n g about how h o r r i b l e , oh, wouldn't i t be awful to have herpes and going on and on, and I'm just dying inside, and I couldn't say a word . . . I was ju s t s i t t i n g there t r y i n g to sip my wine and be t h i s quiet l i t t l e mouse i n the corner and be i n v i s i b l e . Their e f f o r t s to remain unconnected with herpes prevented some of the women from getting the support that they f e l t was necessary and avai l a b l e , including from the Herpes Support Group. As one pa r t i c i p a n t explained: "I just didn't want anyone to see my face, make the connection that I had herpes." The sense of secrecy was most c l e a r l y demonstrated by the manner i n which the women regulated disclosure of t h e i r condition. For the most part, the women c a r e f u l l y and de l i b e r a t e l y chose who they t o l d that they had herpes and under which conditions. Whether or not they t o l d family members seemed to depend on t h e i r relationship with i n d i v i d u a l family members. As one pa r t i c i p a n t explained: We're always se l e c t i v e about who we choose to t a l k about very important things to . . . my parents would not come to mind . . . Herpes i s associated with sex. I don't discuss my sex l i f e with my parents, they don't discuss t h e i r sex l i f e with me. I don't think i t ' s any of t h e i r business. My 55 s i s t e r i s d i f f e r e n t . She's one of my closest f r i e n d s . The decision to t e l l friends or acquaintances was also c a r e f u l l y considered, with t r u s t being an important component. Concealing knowledge of t h e i r condition with regard to employers and fellow workers was also an issue for some of the women. The women chose to cope with the shame and stigma associated with herpes i n various ways. Coping strategies ranged from keeping knowledge of t h e i r condition t o t a l l y hidden, to discussing the fac t openly whenever deemed appropriate. For example, whereas one woman avoided intimate r e l a t i o n s h i p s i n order to keep her secret, another woman stated: Actually, I'm very open about i t . In fact, my family know I have i t . . . 1 don't even f i n d i t embarrassing to t a l k about with a new man, you know, even i f there's not the chance that I'm going to be going to be with him. I've mentioned i t i n front of people i n discussions. The extent to which the women f e l t ashamed because of having herpes and the degree to which they f e l t they had something to hide seemed to influence the degree to which they f e l t i s o l a t e d because of having g e n i t a l herpes. Those women who f e l t too ashamed of having herpes to share t h e i r experiences with family, close friends, or potential partners, or who thought no one else would understand t h e i r issues, f e l t alone with the disease, found i t d i f f i c u l t to cope with, and reported depression. The f e e l i n g of being d i f f e r e n t from others and the sense of i s o l a t i o n that arose from "keeping the secret" of gen i t a l herpes was a r t i c u l a t e d by one woman who said: I have spent almost 10 years alone i n a l i t t l e c u b icle with 56 i t myself. And that's not healthy . . . r e a l l y you get s e l f - p i t y . . . Even within a relati o n s h i p , i t ' s s t i l l i s o l a t i n g , very much . . . because i t ' s my disease, i t ' s my problem, i t ' s my body, i t ' s me. The sense of secrecy also arose from a fear of being rejected because of having herpes and feelings of shame exacerbated the women's fear of rej e c t i o n . A fear of re j e c t i o n . The part i c i p a n t s expressed fear that the preconceptions about herpes held by individuals i n our society would lead others to r e j e c t them once they discovered the women had herpes. The women were aware of the p o s s i b i l i t y that someone who was interested i n having a sexual rel a t i o n s h i p with them could cease to be interested once i t was learned they had herpes. The hurt and anger associated with such a re j e c t i o n led the women to approach new relationships with some wariness as they kept t h i s p o s s i b i l i t y i n mind, although i t affected t h e i r behavior to varying degrees. The concern that a sexual partner may become angry or disinterested i n them sexually due to u n a v a i l a b i l i t y because of outbreaks was also expressed by some of the par t i c i p a n t s . Long-time friendships as well as more casual acquaintances were considered at r i s k by some of the women who were a f r a i d these individuals would not want to be associated with them once they revealed they had herpes. Other p a r t i c i p a n t s expressed the fear that they would be pro f e s s i o n a l l y rejected by losing t h e i r jobs i f t h e i r employers found out they had the disease. When approaching new relationships, the pa r t i c i p a n t s were 57 p a r t i c u l a r l y aware of the p o s s i b i l i t y that the person they were interested i n sexually might re j e c t them upon learning they had ge n i t a l herpes. One woman ar t i c u l a t e d t h i s fear when she said: Friends are always saying, 'I've got t h i s r e a l l y nice guy I want you to meet, ' . . . and i t ' s l i k e I go into immediate fear, i t ' s l i k e , oh, my God!, but what i f we decided we l i k e d each other and you know, decided we wanted to have a sexual r e l a t i o n s h i p . I'd have to t e l l him I have herpes and what i f he didn't want to have anything to do with me. While the p o s s i b i l i t y of rej e c t i o n was acknowledged by each woman, the e f f e c t on t h e i r individual behavior varied. Some of the p a r t i c i p a n t s avoided new relationships i n order to minimize the chances of f e e l i n g hurt and angry because of the possible r e j e c t i o n , whereas other women dealt with the p o s s i b i l i t y of r e j e c t i o n by concluding that anyone who rejected them because they had herpes was not worthy as a partner. Concern about losing long-term friendships and re l a t i o n s h i p s with casual acquaintances once these people found out they had herpes was expressed by most of the part i c i p a n t s . The fear of r e j e c t i o n by friends was i l l u s t r a t e d by the words of one pa r t i c i p a n t as she described the r i s k she took i n t e l l i n g a close f r i e n d that she had herpes: I f I had got a negative reaction from her, i t would have been just h e l l . I mean I would have been j u s t sick about i t . . . that i t would have ruined our friendship or that I would never have her i n my l i f e again because she would not want to associate with me. The fear of r e j e c t i o n experienced by the women frequently 58 resulted i n a loss of the spontaneity and openness with which they interacted with certain individuals. A sense of loss . A sense of loss was i m p l i c i t i n a number of aspects of the disease experience described by the par t i c i p a n t s . Contracting herpes had effected changes i n t h e i r l i v e s and many of those changes were experienced as losses. Each woman experienced loss of control over some aspect of her l i f e , ranging from s p e c i f i c loss of control over her body to a general sense of having l o s t control over her l i f e because of having herpes. Loss of control seemed to be experienced as more extreme by those women who had not been given a choice about exposure to herpes, e s p e c i a l l y the sense of loss of control over t h e i r bodies. Other aspects of the sense of loss included loss of sexual freedom, loss of reproductive opportunities and decisions, loss of r i g h t s and entitlement, and a sense of having l o s t a part of who they were p r i o r to contracting herpes. A l l of the women sensed they had i n some respect l o s t a part of t h e i r l i v e s as they had previously been and had been changed in some way as a r e s u l t of having contracted herpes. The sense of l i f e having been changed was expressed by one woman who said: "I've gone from being happy-go-lucky to being i n c r e d i b l y c o n t r o l l i n g about what touches me . . .there's a loss of the spontaneity of l i f e , or being young of l i f e . " In a p a r t i c u l a r l y powerful example, one woman described her sense of how her l i f e had changed irrevocably upon receiving a diagnosis of herpes: I went through just a horr i b l e , h o r r i b l e thing, and I almost f e e l s i l l y t a l k i n g about t h i s , because I'm not 59 r e l i g i o u s . . . I remember one morning I got up. Couldn't sleep, I hadn't been sleeping . . . I remember getting down on my knees and almost saying to myself, 'I have to pray.' Like t e l l me, l i k e someone t e l l me that t h i s i s n ' t happening i n my l i f e ! Because I almost r e a l i z e d the repercussions that were going to come about. The women also expressed a loss of sexual freedom and spontaneity i n intimate relationships. Concerns r e l a t e d to disclosure, fear of rejec t i o n , and transmission of the v i r u s were reported to s t r a i n t h e i r e f f o r t s to es t a b l i s h new sexual r e l a t i o n s h i p s . For example, one participant described the loss of spontaneity she experienced: I don't l i k e going on dates. . . i n the back of my mind i t ' l l always come back, 'oh my God, how w i l l he react when I have to t e l l him'. . . And then I just get a l l caught up i n that and I can't relax and enjoy the experience. Concerns over transmission of the disease made sex "a serious business" as precautions needed to be considered. One woman explained how having herpes interfered with her sexual spontaneity: " I f you're r e a l l y avid for a long period of time, j u s t the t i s s u e damage or the stress on the t i s s u e can cause an outbreak. Well, that's not too f i n e to s t a r t considering everytime you're with your lover, either!" Some of the women f e l t they had l o s t r i g h t s and entitlement concerning sex. For example, one p a r t i c i p a n t stated: "I don't have the freedom to casual sex . . . sex i s just not my r i g h t anymore . . .there's l i m i t a t i o n s . " Other examples of loss included loss of r e l a t i o n s h i p s 60 because of contracting herpes as well as loss of dreams and hopes regarding rela t i o n s h i p s . In considering how herpes had changed her l i f e and the losses associated with t h i s , one woman stated: You're supposed to go through l i f e . . . you're supposed to get married and have kids and be a happy l i t t l e person . . . but that's just not what's happening i n my l i f e , and I guess the f a c t that I don't have someone i n my l i f e has made i t worse. I t ' s made me think that's why I don't have someone i n my l i f e , because I have herpes, you know. Each pa r t i c i p a n t indicated a sense of having l o s t control over some aspect of her l i f e because of having herpes; i n p a r t i c u l a r , loss of control over t h e i r bodies or over the course of the disease. One participant c l e a r l y a r t i c u l a t e d her sense of having l o s t control: I f e e l t o t a l f r u s t r a t i o n and anger sometimes at how I have no control over my body anymore. My body does what i t wants to, I have nothing to say about i t , and again, i t ' s the v i r a l thing. You know, i t just shows up at i t s own whim. For those women who wished to have children, the u n p r e d i c t a b i l i t y of the disease led to a loss of control over reproductive opportunities and choices, such as planning conception and the choice of a vaginal c h i l d b i r t h . The words of one woman i l l u s t r a t e d the loss anticipated i f a Caesarean section were required: "I wouldn't want to miss out on a natural c h i l d b i r t h i f I could have i t . But of course, i f I had herpes, I'd have a Caesarean." For some of the women, the sense of having l o s t control expanded to a general sense of having l o s t control over t h e i r 61 l i v e s because of herpes. For example, one p a r t i c i p a n t described herpes as having " l i t t l e teeny t e n d r i l s that invade everywhere". She went on to explain, "I don't know that there i s any part of my l i f e that i s n ' t touched i n some small way. Right from what you eat, to your sleeping patterns, to what you wear . . . to what kind of sex you have." In an attempt to regain control over t h e i r l i v e s the par t i c i p a n t s reported becoming more proactive i n t h e i r own health care, managing t h e i r l i f e s t y l e s to reduce stress and maintain health, p a r t i c i p a t i n g i n studies on herpes, or educating themselves about herpes. In her own way, each woman attempted to regain some sense of control over the disease i n t h e i r l i v e s . As a r t i c u l a t e d by one woman for whom gathering information was important: "I think i t ' s part of the control thing, i s knowledge i s power. And at least i f I know something, putting a l a b e l on something can make i t ten times better." Despite t h e i r e f f o r t s to manage and cope with the losses associated with the condition, every p a r t i c i p a n t agreed that they would rather have been without the experience of herpes i n t h e i r l i v e s . A sense of betrayal and i n j u s t i c e . Each of the women i n the study described f e e l i n g s of betrayal or i n j u s t i c e , although these feelings were experienced with d i f f e r i n g i n t e n s i t y by the various p a r t i c i p a n t s . The par t i c i p a n t s described incidents where t h e i r hopes or expectations were dashed, where t h e i r b e l i e f s were shattered, or where t h e i r t r u s t i n someone was broken. These experiences l e f t them f e e l i n g that they had been betrayed or that they had been u n f a i r l y treated because of having herpes, and were often 62 accompanied by anger. The feelings of betrayal and i n j u s t i c e arose from interactions with partners, friends and family, and the medical profession, and for some of the pa r t i c i p a n t s extended to a sense of having been betrayed by t h e i r bodies or treated u n f a i r l y by l i f e . For those women who were not t o l d they were being exposed to herpes, the feelings of betrayal and anger were p a r t i c u l a r l y intense. The women f e l t betrayed by individuals they trusted when they were hurt by words or actions of those people r e l a t e d to t h e i r condition. Lack of support from a partner, i n s e n s i t i v i t y on the part of friends or family, or lack of understanding and empathy from medical professionals l e f t the women f e e l i n g hurt and often angry. For example, one participant described how she was unexpectedly hurt by her s i s t e r to whom she had disclosed that she had herpes: I didn't expect her to go and t e l l anybody. But she t o l d t h i s fellow she was seeing. Who i n turn t o l d another f r i e n d of h i s , who i n turn phoned the fellow I was seeing. . . I was just mortified. I t was a breach of my t r u s t i n her. The feelings of betrayal and anger were p a r t i c u l a r l y intense at those times when the women were i n need of support and believed i t would be forthcoming from a certa i n i n d i v i d u a l or other source. For example, one woman r e c a l l e d how her b e l i e f that the medical profession would be he l p f u l and supportive was shattered: If you can't turn to your doctors, who can you turn to? They are the health care s p e c i a l i s t s , they are the ones that are supposed to know what's wrong with us. And of course, 6 3 I've grown a l o t and learnt a l o t since then and I've almost gone the other way thinking I don't t r u s t anything they say anymore. But at that point . . . who do you go to and who do you t r u s t i f i t ' s not the doctors! At times, dealing with the experiences that arose from l i v i n g with g e n i t a l herpes l e f t the women f e e l i n g u n f a i r l y treated. A s p e c i f i c example of such i n j u s t i c e was described by one p a r t i c i p a n t : "My partner who passed i t on to me, he's never had any symptoms, and I just think that's so bloody u n f a i r ! " Some women also f e l t that l i f e had been unfai r i n gi v i n g them g e n i t a l herpes, as i l l u s t r a t e d by the words of one woman who said: Here I am, I'm the person who t r i e s to stay healthy. I do my workouts, I do my walks, I do good eating, I've never done any drugs i n my l i f e . . . and then to have something invade your body that just won't go away! For those women who had not been t o l d they were being exposed to the virus by t h e i r sexual partners, the sense of betrayal and feelings of anger seemed to be p a r t i c u l a r l y intense. For example, one woman described her reaction to her partner upon being diagnosed: "It's almost l i k e t h i s monster was inside me . . . I'm standing there, f i s t s f l a y l i n g . I'm ju s t seeing r e d — I ju s t want to k i l l t h i s man, 'cause he's done t h i s to me." I t was the memory of such powerful and negative experiences, or the r e a l i z a t i o n that some individuals may experience d i f f i c u l t y dealing with the condition, that i n part motivated the women to avoid transmitting the disease to others. 64 A s e n s e o f p e r s o n a l r e s p o n s i b i l i t y t o w a r d s o t h e r s . A s i g n i f i c a n t component of the disease experience f o r a l l of the women was the sense of personal r e s p o n s i b i l i t y they f e l t towards others around not transmitting g e n i t a l herpes. One of the main concerns expressed by each woman was the intense desire not to transmit the virus to someone else. Realizing that herpes could be p a i n f u l and d i f f i c u l t to deal with, both p h y s i c a l l y and emotionally, the women did not want to be responsible f o r causing such pain i n another individual's l i f e . An important aspect of preventing harm was the moral obligation they f e l t to t e l l p o t e n t i a l partners that they had herpes. This allowed the other person to make t h e i r own choice about whether to be sexually involved with someone who had herpes. However, t h e i r sense of r e s p o n s i b i l i t y regarding disclosure was also experienced as c o n f l i c t u a l and past partners had not always been t o l d . The seriousness of t h e i r personal r e s p o n s i b i l i t y towards others i n preventing transmission was emphasized by a l l the par t i c i p a n t s . Avoiding intercourse during outbreaks, i n s i s t i n g on the use of condoms, and being creative about sexual play were ways the women described to prevent transmission to a sexual partner. One participant c l e a r l y stated her understanding of her r e s p o n s i b i l i t y to her partner when she said: My partner says he doesn't care ( i f he contracts i t ) which i s sweet but s i l l y . If he wanted sex and I had a le s i o n or thought one was coming, I'd probably refuse . . . because i f you can prevent i t , why have i t ? " For some of the women, the p o s s i b i l i t y of f a i l i n g to prevent transmission i n spite of t h e i r best e f f o r t s f i l l e d them with 65 fear, as one woman revealed: "I had nightmares many times about giving i t to him, recurring nightmares." Fear of f a i l i n g i n the r e s p o n s i b i l i t y could become a heavy personal burden as i l l u s t r a t e d by the intense e f f o r t s of one p a r t i c i p a n t to prevent i n c i d e n t a l transmission of the v i r u s : I'm so cautious. I r e a l i z e that the . . . v i r u s i s n ' t e a s i l y transmitted through showers and s t u f f l i k e that, but then there I am scrubbing out the bathtub, making sure the whole place i s — you know, and I'm putting bleach i n the towels, and s t u f f , so that my c h i l d doesn't get any contact with i t . Accidental transmission and asymptomatic shedding were l i n g e r i n g concerns f o r the women, as one participant explained: " I t ' s at the back of my mind that I could pass the virus on to someone when I don't even r e a l i z e i t ' s active." What seemed to make the r e s p o n s i b i l i t y of preventing transmission so personal for the p a r t i c i p a n t s was that they d i d not want to be responsible for causing someone else pain, either emotional or physical. They r e c a l l e d t h e i r own physical pain, p a r t i c u l a r l y the pain of the primary outbreak, but also the physical discomfort and inconvenience associated with recurrences. The women were also aware of the emotional and psychological pain that could be experienced by i n d i v i d u a l s who contracted herpes. One woman ar t i c u l a t e d the r e s p o n s i b i l i t y c l e a r l y i n discussing what i t would mean for her to transmit the disease to someone else: I don't want to hurt anybody . . . i t just goes against what I believe i n , I mean, I just want to be good, I want to be 66 nice, I want to be considerate. I don't want to be responsible for adding something such as t h i s to someone's l i f e . . . I don't want to be responsible for inducing those most h o r r i b l e feelings i n someone else that I f e l t . I just couldn't l i v e with that. A l l of the participants stressed the moral o b l i g a t i o n of informing a poten t i a l partner that they had herpes because of the po t e n t i a l for transmission of the virus. As one woman stated: "You have a r e s p o n s i b i l i t y i f you're going to sleep with someone that you should l e t them know what they're i n f o r and give them an out." While the participants firmly believed i n t h e i r o b l i g a t i o n to t e l l , they had not always t o l d partners i n the past. Such incidents often l e f t them f e e l i n g g u i l t y and worried about whether they had unknowingly transmitted the v i r u s . These feeli n g s further strengthened t h e i r commitment to d i s c l o s e t h e i r condition to poten t i a l sexual partners. This was p a r t i c u l a r l y true f o r those women who had not been t o l d by t h e i r partners that they were being exposed. For example, a f t e r r e l a t i n g how upset she was fo r not informing a sexual partner u n t i l well into t h e i r r e l a t i o n s h i p , one participant indicated her resolve: I w i l l be very cautious and ca r e f u l . And t e l l my partner and l e t them choose to take t h e i r own r i s k . . . Because I took h i s r i g h t to choose away from him by not t e l l i n g him . . . that's what was taken away from me. The experiences that led them to the point of considering disclosure to potential sexual partners a moral o b l i g a t i o n i l l u s t r a t e d part of the process each woman was involved i n while 67 dealing with the r e a l i t y of her condition. A n o n g o i n g n e e d t o d e a l w i t h t h e p h y s i c a l a n d s o c i a l r e a l i t y o f h a v i n g r e c u r r i n g g e n i t a l h e r p e s . Each woman seemed to be at some point i n the process of making sense of having herpes and of coping with the e f f e c t of a chronic, stigmatized, sexually-transmitted disease i n her l i f e . Making sense of the physical r e a l i t y of herpes included coming to terms with i t s i n c u r a b i l i t y , recurrence, and contagious nature. The physical r e a l i t i e s of the disease resulted i n an ongoing process for the women of dealing with both physical and s o c i a l issues. While a l l of the women talked about the importance of "moving on" with t h e i r l i v e s i n spite of having herpes, some appeared to struggle with how to get past being negatively affected by the disease. An important component of "moving on" for the women seemed to be gaining some perspective of herpes within the context of the rest of t h e i r l i v e s , p a r t i c u l a r l y i n l i g h t of the fac t that herpes i s a stigmatized condition. Rejection of the stigma surrounding herpes and of the shame associated with having a sexually-transmitted disease seemed to be an important step for the women i n the process of coming to terms with having herpes. Each woman spoke about having to deal with the r e a l i t y of having a contagious, incurable, and recurrent disease. Awareness of the r e a l i t y of the disease was always part of the present i n t h e i r e f f o r t s and concerns to prevent transmission. They were repeatedly faced with and reminded of the consequences of the 68 disease because of the discomfort and inconvenience of recurrences. One woman commented on the constancy of the disease i n her l i f e : "Herpes i s part of me. I'm going to l i v e with t h i s a l l my l i f e . I t ' s a virus, i t ' s not going to leave my body." The physical r e a l i t y of having the disease i n t h e i r l i v e s r esulted i n an ongoing process of having to f i n d ways to l i v e and deal with both the physical and s o c i a l consequences of herpes. As t h e i r l i v e s changed, and the women reconciled p a r t i c u l a r aspects of managing the disease, new issues arose. For example, a decision to become pregnant, increased concern about c e r v i c a l cancer, changes i n the frequency of outbreaks, and a change i n partnership status were mentioned by the various women as l i f e events related to the disease that required new adaptation or readjustment. The ongoing process of dealing with the disease was i l l u s t r a t e d by the words of one par t i c i p a n t : Two weeks ago I would have been f a i r l y secure i n saying, you know, I'm okay and I don't have a problem with i t (herpes). But the circumstances have changed i n that respect. . . Two weeks ago I was i n a good r e l a t i o n s h i p and I didn't think about i t (herpes) at a l l , but now when I'm kind of looking ahead a l i t t l e b i t to another re l a t i o n s h i p , i t i s on my mind more. One factor that appeared to be related to how the women coped with both the physical and emotional aspects of the disease was the amount of support and accurate information they received from medical professionals at the time of diagnosis and throughout the course of the disease. A number of the women f e l t a lack of v a l i d a t i o n for t h e i r feelings when medical 69 professionals were "matter of f a c t " i n t h e i r attitudes or behaved i n a manner perceived as judgmental. Lack of accurate information regarding the physical aspects of the disease or the possible emotional consequences l e f t some of the women unprepared to deal with the r e a l i t i e s they subsequently faced. For example, one woman was unprepared for the emotional consequences of following her physician's advice regarding d i s c l o s u r e to po t e n t i a l partners: She b a s i c a l l y said that you can choose to t e l l them or not to t e l l them, but just be cautious and don't have sex when you have an outbreak. And so I lapped up that information, thought that was great. So I didn't t e l l them, you know. And then I would have t h i s major g u i l t afterward that I hadn't t o l d . In s p i t e of the physical r e a l i t y of having g e n i t a l herpes, a l l of the par t i c i p a n t s indicated the need to "get on with" t h e i r l i v e s emotionally and s o c i a l l y . While some of the women continued to struggle with the s o c i a l consequences of having the condition and experienced i t as disruptive i n t h e i r l i v e s , others indicated a sense of having successfully incorporated herpes into t h e i r everyday l i v e s . Their l e v e l of self-esteem, the amount of support received from past partners, the presence or absence of a committed relat i o n s h i p , and the frequency of recurrences were mentioned by the various women as factors they thought influenced how e f f e c t i v e l y they coped with having herpes. Regardless of where each woman was i n t h i s process, they a l l commented on the importance of "moving on" as a way of coping with herpes. As a r t i c u l a t e d by one participant: 70 You can't change i t . Am I going to kind of get stuck i n i t and f e e l bad and there's no point i n that r e a l l y . So you jus t kind of accept i t and deal with the d a i l y r e a l i t y of i t and the discomfort and move on from there. A l l of the women indicated the importance of r e j e c t i n g the s o c i a l stigma and the associated shame around having herpes as a way of moving on with t h e i r l i v e s i n sp i t e of have the disease. Some of the women indicated having accomplished t h i s task by st a t i n g outright that they did not f e e l they had done anything wrong to get herpes and they were not ashamed of having herpes. Others related incidents that indicated that t h e i r attempts to re j e c t the stigma and shame attached to having the disease was an ongoing process i n t h e i r l i v e s . For example, one woman shared an incident regarding a recent change i n her reluctance to buy ac y c l o v i r : This l a s t time, I didn't care. Right i n front of people i n the lineup I pulled i t (acyclovir) out and looked at the expiry date. And I thought that was a r e a l l y big move for me to do that. I t was almost l i k e a public declaration — yes, I r e a l l y do have herpes and I don't care who knows! In t h e i r e f f o r t s to cope, i t became important f o r some of the women to attempt to e f f e c t a change i n public attitudes regarding herpes. One woman said: "I want to change t h e i r minds . . . to r e l i e v e the stigma attached to having herpes, to convince them and me i t ' s not that bad!" For some of the women, rej e c t i n g the stigma attached to having herpes entailed breaking the s o c i a l i s o l a t i o n they had imposed upon themselves because of t h e i r shame and fear of 71 r e j e c t i o n . P a r t i c i p a t i o n i n studies such as t h i s one on herpes, and attendance at the Herpes Support Group were ways the women attempted to break t h e i r i s o l a t i o n and to carry on with t h e i r l i v e s i n spi t e of having herpes. The p a r t i c i p a n t s indicated the need to put the disease into perspective with the rest of t h e i r l i v e s , p a r t i c u l a r l y because herpes i s a stigmatized condition which receives considerable negative press. Each woman commented that herpes was, i n fac t , p h y s i c a l l y l i t t l e more than inconvenient, or as one woman said: "Just a minor reoccurring skin a f f l i c t i o n . " Furthermore, they agreed that herpes was only one of many issues i n t h e i r l i v e s . Even those women who found herpes emotionally d i f f i c u l t to deal with commented that herpes was only one of the many complex issues needed to be faced i n l i f e . A f t e r contracting herpes, each woman i n the study became involved i n the process of incorporating the experience of the disease into her everyday l i f e . While the women were required to deal with the physical r e a l i t y of having a chronic condition, i t was the stigma attached to having an incurable, sexually-transmitted disease that seemed to require t h e i r greatest e f f o r t s i n coping. Rejecting the stigma and shame associated with herpes, and gaining perspective on the physical r e a l i t y of the disease were important aspects i n the process of coming to terms with having recurring genital herpes for a l l of these women. 72 Chapter Five Discussion I t was the purpose of t h i s study to explore and describe the subjective experience of women who have recurring g e n i t a l herpes and to begin to understand how women make sense of t h e i r l i v e d experience of the disease. The research question was: "What i s the experience of recurring g e n i t a l herpes f o r women and how do they l i v e with and make sense of the experience i n t h e i r l i v e s ? " The fundamental structure of the experience i s presented i n t h i s chapter i n a condensed description of the experience of recurring g e n i t a l herpes for women as synthesized from the researcher's analysis. The re s u l t s of t h i s study are compared to the e x i s t i n g l i t e r a t u r e . Implications for counselling and for further research are presented. E s s e n t i a l Structure The women who participated i n t h i s study had been forced to deal with an experience they would rather not have had to f a c e — the experience of recurring genital herpes. Making sense of the disease included coming to terms with i t s i n c u r a b i l i t y , recurrence, and contagious nature. The physical and s o c i a l r e a l i t i e s of the disease were repeatedly brought to the forefront of the women's awareness because of recurrences. Adapting to the disease became an ongoing process within the context of t h e i r changing l i v e s as they attempted to deal with such issues as preventing transmission or meeting new partners. As t h e i r l i v e s changed, issues that they thought they had reconciled often resurfaced, or new issues arose. 73 Other than the primary outbreak and early stages of the disease, the women experienced genital herpes as p h y s i c a l l y l i t t l e more than inconvenient and somewhat uncomfortable. However, they agreed that because the condition has been stigmatized i n our society, the s o c i a l consequences caused them greater concern and di s t r e s s . The fact that herpes i s a sexually-transmitted disease that i s not only incurable but also recurrent was seen by the women as the reason that g e n i t a l herpes has been so highly stigmatized. The view of herpes as a "h o r r i b l e " and "contagious" disease that a f f l i c t s sexually promiscuous individuals l e f t the women concerned about being negatively judged or ostracized by others who knew they had herpes, making the s o c i a l consequences of the disease f a r more troublesome than the physical consequences. Their sense of the stigma attached to g e n i t a l herpes, as well as occasional negative reactions from others, l e f t the women f e e l i n g ashamed or embarrassed about having g e n i t a l herpes and created a sense of secrecy surrounding the disease. While fe e l i n g s of shame were short-lived by some, a l l of the women experienced moments i n which they f e l t they were perceived as having "done something ho r r i b l e " , as being reproachable i n some way. Concealing knowledge of t h e i r condition from c e r t a i n i n d i v i d u a l s such as family members, co-workers, or acquaintances was one way that the women chose to avoid fe e l i n g s of embarrassment or shame, or the p o s s i b i l i t y of being stigmatized, judged, or rejected because of having herpes. Whereas t h i s secrecy led to feelings of i s o l a t i o n for some of the women, one woman rejected the need for secrecy and spoke f r e e l y about having 74 herpes. The women were a f r a i d that the attitudes of others would r e s u l t i n t h e i r being rejected by friends, acquaintances, and family members once i t was discovered they had herpes. They were p a r t i c u l a r l y aware of the p o s s i b i l i t y that someone who was interested i n having a sexual relationship with them could cease to be interested once i t was learned they had herpes. The sense of secrecy together with t h e i r fear of being rejected also led to some awkwardness and wariness i n approaching p o t e n t i a l sexual partners. The women acknowledged that t h i s fear of r e j e c t i o n sometimes c o n f l i c t e d with t h e i r firm sense of moral ob l i g a t i o n to inform a po t e n t i a l sexual partner that he would p o t e n t i a l l y be exposed to the v i r u s before entering into a sexual r e l a t i o n s h i p . While the women defended the partner's r i g h t to make an informed choice about whether or not to become involved with someone who had herpes, they also revealed that they had not always t o l d t h e i r partners of t h e i r condition i n the past. Past f a i l u r e s to dis c l o s e resulted i n feelings of g u i l t and concern over the p o s s i b i l i t y of having transmitted the disease. R e a l i z i n g that herpes could be a painful experience both p h y s i c a l l y and emotionally, the women f e l t i t important to take precautions to prevent transmission and to avoid being responsible f o r causing such pain i n another individual's l i f e . A number of the women feared the p o s s i b i l i t y of f a i l i n g i n t h i s r e s p o n s i b i l i t y i n spit e of t h e i r best e f f o r t s . Concern about i n f e c t i n g a partner i n the absense of v i s i b l e lesions through asymptomatic shedding was also expressed, often 75 leading to a loss of sexual spontaneity. This loss of sexual freedom and spontaneity was one of the primary losses expressed by the women as a r e s u l t of having contracted g e n i t a l herpes. Other losses experienced by the various women included loss of hopes and dreams regarding relationships, loss of r i g h t s and entitlement, and a sense of having l o s t a part of who they were p r i o r to contracting herpes. Each woman described the experience of loss of control over some aspect of her l i f e , such as over her body or over the course of the disease. For those women who wished to have children, the unp r e d i c t a b i l i t y of the disease led to a loss of control over reproductive opportunities and choices, including planning conception and the choice of a vaginal b i r t h . Each of the women i n the study described f e e l i n g s of having been betrayed or unjustly treated because of having g e n i t a l herpes. E s p e c i a l l y during times when the women were i n need of support, such as during diagnosis, and for those women who had not been t o l d they were being exposed to the vi r u s , these fe e l i n g s were p a r t i c u l a r l y intense and were often accompanied by anger. For example, lack of support from a partner, i n s e n s i t i v i t y on the part of friends or family, or lack of understanding and empathy from medical professionals led to dashed expectations, shattered b e l i e f s , or broken t r u s t . Some of the women f e l t u n f a i r l y treated by l i f e because of having contracted the disease. In s p i t e of the physical and s o c i a l consequences of the disease and of the p a r t i c u l a r d i f f i c u l t i e s each woman experienced because of having herpes, they a l l expressed the importance of fin d i n g some way of "moving on" with t h e i r l i v e s . While some of 76 the women s t i l l struggled with how to make t h i s happen, others appeared to have successfully integrated the experience of the disease into t h e i r everyday l i v e s . An important component of t h e i r e f f o r t s was gaining perspective of the disease within the context of the rest of t h e i r l i v e s by reminding themselves that herpes was, i n fact, "just a minor reoccurring skin a f f l i c t i o n " which was only one of many issues an in d i v i d u a l i s required to deal with i n l i f e . Rejecting the stigma and shame associated with having t h i s sexually-transmitted disease was also an important step i n the process of coming to terms with having recurring g e n i t a l herpes. Comparison to the Literature Drob et a l . (1985) suggested that the impact of herpes i n i n d i v i d u a l s ' l i v e s becomes more understandable when i t i s considered within the context of the si g n i f i c a n c e which the disease has come to have i n our society. Inhorn (198 6) further expanded on the meaning of genital herpes i n our society by suggesting that g e n i t a l herpes had been transformed by the media from an "an unknown, r e l a t i v e l y benign, nonstigmatized condition" into a condition with a "loathsome and leprous image" (Inhorn, p. 62). According to VanderPlate and Aral (1987) the powerful stigma attached to gen i t a l herpes r e s u l t s because the disease i s not only a sexually-transmitted disease but also one for which there i s no treatment and no cure. Stigmatization. In a q u a l i t a t i v e study with seventy adults, Swanson and Chenitz (1993) noted that respondents f e l t both the stigma of having an unacceptable disease and the stigma of being l a b e l l e d 77 as a 'bad' person. Reviewing the l i t e r a t u r e , VanderPlate and Ar a l (1987) noted that individuals with herpes may fear being perceived as "immoral, promiscuous, sexually indiscriminant, careless, and errant" (p. 61), as well as fearing being ostracized or avoided because of having the stigmatized condition. Consistent with these perceptions, one of the key issues described by a l l of the women i n the current study was the impact on t h e i r l i v e s of the stigma attached to ge n i t a l herpes i n our society. The association of herpes with immorality and indiscriminate sexuality l e f t the women concerned that they would be seen as promiscuous and be subjected to negative judgments regarding t h e i r sexual behaviour and morality. They were a f r a i d of being ostracized by people who knew they had herpes because of society's view of herpes as a "horrible disease." Shame, secrecy and i s o l a t i o n . VanderPlate and Aral (1987) suggested that the stigma attached to the disease, the s i t e of the inf e c t i o n s , and i t ' s sexual nature can lead to feelings of embarrassment, humiliation, and shame. Anticipating disapproval and r e j e c t i o n , many ind i v i d u a l s with herpes conceal t h e i r diagnosis from those around them. This self-imposed secrecy can i s o l a t e i n d i v i d u a l s from p o t e n t i a l sources of support. The findings of the current study are s i m i l l a r to these findings i n that the women reported that the attitudes of others regarding herpes led them to f e e l a sense of shame and secrecy around having the disease. The women feared negative reactions from others and also reported s p e c i f i c incidents where the 78 reactions of another in d i v i d u a l l e f t them f e e l i n g ashamed or embarrassed, as though they had "done something h o r r i b l e . " Actual incidents or fear of such incidents motivated most of the women to conceal knowledge of t h e i r condition from others around them, or to c a r e f u l l y regulate to whom the information would be disclosed. Those women i n the study who f e l t too ashamed of having herpes to share t h e i r experiences with family, close friends, or po t e n t i a l partners, or who thought no one else would understand t h e i r issues reported more acute feelings of i s o l a t i o n and depression. Those women who were able to disc l o s e to family members or friends to seek support reported less i s o l a t i o n and depression. Two of the women stated outright that they were not ashamed of having herpes even though they had experienced embarrassing or shaming experiences i n l i v i n g with the disease. Neither woman seemed to f e e l the need to seek support from others and neither reported feelings of i s o l a t i o n or depression because of having herpes. These findings regarding i s o l a t i o n and depression d i f f e r somewhat from those of Drob et a l . (1985), which generally indicated a pervasive negative e f f e c t on the emotional l i v e s of the pa r t i c i p a n t s as a re s u l t of having herpes. One reason for the differences i n these findings may be that, unlike the women i n t h i s study, a l l of the subjects i n the Drob et a l . (1985) study were individuals who were seeking psychological help regarding t h e i r d i f f i c u l t i e s dealing with herpes. According to Inhorn (198 6) "information management" i s a c r u c i a l variable i n the l i v e s of individuals with g e n i t a l herpes. 79 She suggested that the " i n v i s i b l e " nature of herpes creates "emotional, p r a c t i c a l , and e t h i c a l dilemmas" with regard to "information management" (p. 62) . The individ u a l s i n her study dealt with t h i s d i f f i c u l t y by div i d i n g the world into trusted ' i n s i d e r s ' , or 'outsiders' who could not be trusted, by l i m i t i n g sexual partners, or by join i n g a self-help group. Inhorn's p a r t i c i p a n t s c i t e d the recent stigmatization of the disease as the reason that such steps were necessary. Similar to Inhorn's (1986) findings, most of the women i n t h i s study indicated some reluctance to reveal that they had ge n i t a l herpes to family members, friends and acquaintances, or po t e n t i a l partners. Most of the women gave c a r e f u l consideration to whom they would disclose and under what conditions, with t r u s t being mentioned as a very important component i n t h e i r decisions to d i s c l o s e t h e i r condition. Some of the women had joined the Herpes Support Group or were considering j o i n i n g the group as a means of t a l k i n g about t h e i r condition i n an environment where they f e l t they would be understood and accepted. Fear of r e j e c t i o n . Fear of re j e c t i o n , not just by poten t i a l partners but also by friends, family, and acquaintances i s noted frequently i n the l i t e r a t u r e on individuals with genital herpes (Catotti et a l , 1993; Drob et a l . 1985; Jadack et a l . , 1990; Luby and Klinge 1985). For example, i n t h e i r survey of 312 0 ind i v i d u a l s with g e n i t a l herpes, C a t t o t i et a l . , (1993) found that more than one hal f reported fear of rej e c t i o n and feelings of depression. Fear of r e j e c t i o n , e s p e c i a l l y by potential partners, was reported by a l l of the women i n the current study. Although new 80 r e l a t i o n s h i p s were approached with the r e a l i z a t i o n that r e j e c t i o n could occur, the women's behavior was affected i n d i f f e r i n g ways. Drob et a l . , found that only a small number of in d i v i d u a l s choose celibacy as a way of dealing with the disease. Two women of the women i n t h i s study avoided relationships, but t h i s appeared to be part of the process of adapting to the disease and reacting to t h e i r fear of re j e c t i o n as opposed to a permanent choice for celibacy. The other women i n the study concluded that a partner who rejected them because they had herpes was not worthy as a partner and continued to seek out new rel a t i o n s h i p s . I t i s also important to note that, s i m i l a r to the findings of Luby and Klinge (1985), although most of the women i n the study indicated fear of r e j e c t i o n by friends, family, or acquaintances who found out they had gen i t a l herpes, t h i s fear did not seem to i n t e r f e r e i n s o c i a l situations with these individuals. S e n s e o f l o s s . Another theme reported by the women i n t h i s study was a sense of loss i n t h e i r l i v e s because of having contracted g e n i t a l herpes. A l l of the women i n the present study f e l t that they had been changed i n some respect by contracting the disease, and that they had l o s t a part of t h e i r l i v e s as they had previously been. The women indicated they would rather have been without the experience of herpes i n t h e i r l i v e s , even i f they had learned from the experience. These findings are si m i l a r to those of Drob et a l . , (1985) who reported that most of the fo r t y two men and women i n t h e i r study regarded herpes as a personal handicap and as a loss of a portion of themselves. Although the women i n the current study reported some common 81 losses, they also indicated many d i f f e r e n t losses, r e f l e c t i n g the in d i v i d u a l meaning the disease had for each of them. For example, those women who wanted to have children indicated loss of control over reproductive opportunities and decisions, whereas those women who were single and wished to be i n committed re l a t i o n s h i p s indicated loss of hopes and dreams regarding r e l a t i o n s h i p s . This i s i n accordance with the findings of Swanson and Chenitz (1993) who noted that i n order to withstand the meaning of the disease i n t h e i r l i v e s , t h e i r p a r t i c i p a n t s guarded and defended the s e l f against a perceived loss of s e l f that occurred during the period of diagnosis. Each woman i n t h i s study experienced loss of control over some aspect of her l i f e , ranging from loss of control over her body to a general sense of having l o s t control over her l i f e . In analysing the re s u l t s from a questionnaire completed by seventy-four i n d i v i d u a l s with herpes, Luby and Klinge (1985) noted that fo r these in d i v i d u a l s , psychological d i s t r e s s was r e l a t e d to a sense of helplessness and vi c t i m i z a t i o n . Psychological d i s t r e s s was also s i g n f i c a n t l y correlated with feelings of lack of control over herpes symptoms, an i n a b i l i t y to i d e n t i f y contributory factors, and uncertainly as to when the disease i s contagious. The findings of the current study seem to support these r e s u l t s . Of the two women i n t h i s study who reported the most psychological d i s t r e s s i n t h e i r l i v e s because of herpes, one was paralyzed by the idea that she could never be sure when she was shedding the vir u s , and the other f e l t that the disease was c o n t r o l l i n g her entire l i f e . Loss of control seemed to be experienced as more extreme by 82 those women i n the present study who had not been given a choice about exposure to herpes, es p e c i a l l y the sense of loss of control over t h e i r bodies. Current research has not explored the differences i n experience of individuals who were not t o l d they were being exposed and those who were able to exercise some personal choice about exposure, for example by knowingly having sex with someone who had herpes or by choosing not to use condoms with new sexual partners. Loss of self-esteem by individuals who have g e n i t a l herpes was noted i n the research of both Drob et a l . , (1985) and Luby and Klinge (1985). While the women i n t h i s study d i d not a l l report loss of self-esteem as a r e s u l t of contracting herpes, they did report a loss of confidence with regard to the i n i t i a t i o n of poten t i a l sexual relationships because of fear of re j e c t i o n . While Luby and Klinge noted that diminished s e l f -esteem, s o c i a l i s o l a t i o n , anxiety, and reluctance to i n i t i a t e close r e l a t i o n s h i p were prominant psychological manifestations of the disease, t h i s was the case for only some of the women i n the current study. Again, these r e s u l t s may d i f f e r based on the fac t that the subjects i n the study by Luby and Klinge were concerned enough about t h e i r condition to seek help, while some of the women i n t h i s study were reportedly less concerned with herpes i n t h e i r l i v e s . According to Luby and Klinge (1985) the impact of herpes i s most strongly f e l t i n the area of sexual r e l a t i o n s h i p s , i n t e r f e r i n g with sexual freedom, frequency, and spontaneity. They reported a general pessimism regarding sexual r e l a t i o n s h i p s among the subjects i n t h e i r study, noting that g e n i t a l herpes can 83 i n t e r f e r e with a f u l f i l l i n g sexual l i f e . A l l of the women i n the current study reported loss of sexual spontaneity and freedom, however only two of the women indicated general pessimism regarding relationships and believed that having g e n i t a l herpes prevented them from having a f u l f i l l i n g sexual l i f e . This discrepancy may be due to the differences i n the needs and c h a r a c t e r i s t i c s of the women i n both studies, as well as methodological or conceptual differences i n the two studies. Betrayal and i n j u s t i c e . The women i n the current study described f e e l i n g s of betrayal or i n j u s t i c e , although these feelings were experienced with d i f f e r i n g i n t e n s i t y by the various p a r t i c i p a n t s . Their feel i n g s arose from interactions with partners, friends and family, or medical professionals, i n which they perceived themselves as having been betrayed or u n f a i r l y treated. Some of the women f e l t betrayed by t h e i r bodies or u n f a i r l y treated by l i f e . In t h e i r study of the process of adaptation to the disease, Swanson and Chenitz (1993) noted that awareness of the contagious nature of genital herpes and the fac t of transmission by sexual contact l e f t most of t h e i r p a r t i c i p a n t s f e e l i n g angry and betrayed. Feelings of betrayal and anger were p a r t i c u l a r intense for those women who had not been t o l d by t h e i r partners that they were being exposed to the virus. Similar to t h i s finding, Inhorn (1986) noted that a l l of the participants i n her study who were " l i e d to" by t h e i r partners f e l t a degree of anger and outrage. As with the women i n the current study, Swanson and Chenitz (1993) also noted that individuals reacted to the diagnosis of 84 the disease more severely when they f e l t angry at and betrayed by the i n d i v i d u a l who gave them the disease. Sense of r e s p o n s i b i l i t y . The p o s s i b i l i t y of transmitting the virus and the r e s p o n s i b i l i t y to prevent such transmission were important issues i n the l i v e s of a l l of the women interviewed for the current study. The women did not want to be responsible for the physical and emotional pain that they were aware could occur i n another i n d i v i d u a l ' s l i f e because of contracting herpes. This f i n d i n g i s si m i l a r to those of other studies which found the issue of transmission to be of considerable concern to in d i v i d u a l s who have g e n i t a l herpes (Catotti et a l . . 1993; Jadack et a l . , 1990; Luby & Klinge, 1985). Drob et a l . (1985) found that most of t h e i r p a r t i c i p a n t s f e l t i t was unethical to have sexual r e l a t i o n s with uninformed partners when there was any r i s k of transmitting the disease. The women i n the current study believed that i t was unethical to have sexual relations with an uninformed partner at any time because of the issue of asymptomatic transmission. The difference i n these findings may be a r e s u l t of the p a r t i c i p a n t s ' awareness of the increasing evidence of asymptomatic shedding which has accumulated over the past decade. Inhorn (1986) found that the issue of "honesty" toward sexual partners was a major dilemma faced by in d i v i d u a l s with herpes and that an "overwhelming fear of r e j e c t i o n " was c i t e d as the reason disclosure was so d i f f i c u l t (p. 60). Interestingly, while a l l of the women i n study emphasized t h e i r sense of moral ob l i g a t i o n to t e l l p o tential partners that they had g e n i t a l herpes, they also reported the dilemma that arose because of 85 t h e i r fear of being rejected by those same partners. Past f a i l u r e s to disclose p r i o r to entering into a sexual r e l a t i o n s h i p l e f t the women f e e l i n g g u i l t y and concerned over transmission. Such feel i n g s strengthened t h e i r resolve to di s c l o s e to future p o t e n t i a l partners. For at least one woman, t h i s c o n f l i c t led to avoidance of intimate relationships. These findings are s i m i l a r to those of C a t o t t i et a l . (1993) and Drob et a l . (1985) who found that fear of transmitting herpes to others affected the behavior of individuals i n approaching new partners and could contribute to s o c i a l i s o l a t i o n . Adaptation to the disease. Based on t h e i r review of the l i t e r a t u r e , VanderPlate and Ar a l (1987) outlined several issues that make emotional adaptation to ge n i t a l herpes d i f f i c u l t : (1) the s i t e of the in f e c t i o n and i t s sexual nature, (2) the absence of a cure and lack of s i g n i f i c a n t treatment, (3) the latency of the vi r u s and the recurrent nature of the symptoms, (4) the powerful stigma attached to the disease, and (5) the pervasiveness of popular misconceptions and myths regarding herpes. In accordance with the findings of VanderPlate and A r a l (1987), the women i n t h i s study noted that the d i f f i c u l t y of dealing with herpes resulted from the disease being sexually transmitted, incurable, and recurrent. They believed these factors led to the stigmatization of gen i t a l herpes i n our society which further added to t h e i r challenge i n coping with the disease. Recurrences as well as concern over transmission of the vir u s to others brought the physical r e a l i t y of the disease repeatedly into focus for the women. Interestingly, the r o l e of 86 the media and the misconceptions and myths regarding herpes were not mentioned by the majority of women i n t h i s study. As one of the women mentioned, t h i s may be due to the fac t that since AIDS has become a major concern i n our society, herpes receives f a r le s s media attention that i t did a decade ago. The women i n the current study seem to have gone through a si m i l a r process i n adapting to the disease to the one described by Swanson and Chenitz (1993). Swanson and Chenitz described the work of the f i r s t stage as guarding and defending the s e l f against a perceived loss of s e l f . They found that a major consequence of t h i s stage was distancing of the s e l f from others as a way to protect the s e l f . Reflective of these findings, the women i n t h i s study sensed they had i n some respect l o s t a part of t h e i r l i v e s as they had previously been, that they had been changed i n some way. Furthermore, some of the women described r e t r e a t i n g into s o c i a l i s o l a t i o n as a reaction to having the disease. According to Swanson and Chenitz (1993), stage two i n the process of adapting to genital herpes includes reaching out and making l i f e changes to overcome the distance created by the disease and i t s meaning. This i s accomplished by seeking information for help i n coping with the disease, balancing one's l i f e by decreasing stress and increasing healthy behaviors i n an e f f o r t to t r y to manage symptoms, changing l i f e - s t y l e , and refocussing one's l i f e beyond the disease and i t s accompanying stigma. R e f l e c t i v e of t h i s part of the process, the pa r t i c i p a n t s i n the present study attempted to regain control over t h e i r l i v e s a f t e r contracting herpes by becoming more proactive i n t h e i r own 87 health care, managing t h e i r l i f e s t y l e s to reduce stress and maintain health, p a r t i c i p a t i n g i n studies on herpes, or educating themselves about the disease. Furthermore, a l l of the women i n the current study emphasized the importance of "moving on" with t h e i r l i v e s i n spite of having herpes. This seemed to involve gaining some perspective of the disease within the context of the re s t of t h e i r l i v e s as well as re j e c t i n g the stigma and shame associated with herpes. This finding seems to r e f l e c t the refocussing of l i f e beyond the disease and i t s accompanying stigma as described i n stage two by Swanson and Chenitz. During stage three of the process of adaptation to the disease, Swanson and Chenitz (1993) found that a major strategy used by individ u a l s with genital herpes to preserve a valued sense of themselves was to adopt a management s t y l e that allowed them to control information about themselves to partners. These s t y l e s included "revealing" i n which diagnosis was ro u t i n e l y revealed to partners, "accomodating" i n which disclosure was viewed as conditional and occurred when they f e l t the partner might be affected by the disease, and "avoiding" i n which disclosure to partners was routinely avoided (p. 289). The women i n the current study displayed the various s t y l e s of disclosure outlined by Swanson and Chenitz (1993) . One of the women eventually dealt with the issue of information management by choosing to f r e e l y share knowledge of her condition with p o t e n t i a l partners, whereas another woman avoided intimate r e l a t i o n s h i p s altogether i n an attempt to avoid the issue of disclosure. Most of the women continued to give c a r e f u l consideration to whom, when and under what conditions disclosure 88 of t h e i r condition would be made to poten t i a l partners, s i m i l a r to the accomodating s t y l e described by Swanson and Chenitz. The women i n the current study reported that as t h e i r l i v e s changed, new challenges arose or issues they f e l t they had reconciled regarding herpes needed to be dealt with again. For example, the women reported that a change i n partnership status, an increase i n frequency of outbreaks, or a decision to become pregnant required new adaptation or readjustment regarding the disease i n t h e i r l i v e s . This finding supports the notion by Swanson and Chenitz (1993) that the process of adaptation to herpes i s a c y c l i c a l one, and that under ce r t a i n conditions, such as a supportive relationship and a stable disease course, there may be l i t t l e need for a l t e r a t i o n i n the process of adaptation. However, a change i n the conditions of an in d i v i d u a l ' s l i f e can force that i n d i v i d u a l to go back and repeat e a r l i e r stages of the process. For some of the women i n t h i s study, the work of the f i r s t stage as described by Swanson and Chenitz seemed unfinished as they struggled with continued i s o l a t i o n . This f i n d i n g lends further support to the contention that the process of adaptation to the disease i s not a lin e a r one. Mediating factors. The r e s u l t s of the study by Jadack et a l . , (1990) suggested that the presence of an ongoing intimate r e l a t i o n s h i p may mediate the impact of gen i t a l herpes. The current study seems to support these r e s u l t s . The woman who reported the least d i s r u p t i o n i n her l i f e as a r e s u l t of herpes was i n an ongoing r e l a t i o n s h i p and had a hist o r y of long-term and supportive r e l a t i o n s h i p s . The two women who indicated the most disruption i n t h e i r l i v e s because of 89 having herpes, reported not only reluctance but also intense fear around seeking out new intimate relationships. One of these women reported a history of casual relationships, whereas the second women f e l t the lack of support regarding her condition i n a previous r e l a t i o n s h i p had been extremely h u r t f u l . While the other women i n the study were a l l single, they each indicated at leas t one long-term, supportive r e l a t i o n s h i p i n t h e i r h i s t o r i e s . Swanson and Chenitz (1993) found that a negative a t t i t u d e on the part of the diagnosing health professional led to more severe reactions to diagnosis. In the current study, the manner i n which the women coped with both the physical and emotional aspects of the disease appeared to be affected by the amount of support and accurate information they received from medical professionals at the time of diagnosis as well as part of t h e i r ongoing medical care. Lack of va l i d a t i o n for t h e i r f e e l i n g s , a perceived attitude of judgment, and lack of information regarding both the physical and possible emotional consequences of the disease made the time of diagnosis d i f f i c u l t to deal with for a number of the women. In addition, a number of the women were disappointed by the lack of information and v a l i d a t i o n of t h e i r experience from the medical professionals for whom they turned to support i n dealing with the ongoing physical and s o c i a l consequences of the disease. Implications for Counselling The r e s u l t s of t h i s study lead to a number of implications for counsellors working with women who are faced with recurring g e n i t a l herpes. An understanding of the s a l i e n t themes and rel a t e d issues faced by women who are dealing with the disease 90 can help a counsellor assess her or his c l i e n t ' s needs and f a c i l i t a t e adaptation to herpes. In t h i s regard, the r e s u l t s of t h i s study suggest that counsellors may also benefit from considering a r e d e f i n i t i o n of adaptation i n terms of the woman's perspective. Rather than imposing an external standard by which to measure a c l i e n t ' s "progress" through the stages of the process, i t may be more b e n e f i c i a l to consider adaptation within the context of each individual's l i f e . F a c i l i t a t i n g adaptation may simply e n t a i l helping the indi v i d u a l define f o r he r s e l f what i t means to adapt to the disease and to ar r i v e at a place where herpes-related issues are less pervasive i n her l i f e . Herpes i s , i n fact, a dually stigmatized condition, being both a chronic disease and a sexually-transmitted one. Neither the counsellor nor the c l i e n t has control over the f a c t that the reactions of others towards an indi v i d u a l with herpes can be negative. A counsellor who recognizes these r e a l i t i e s would be better prepared to f a c i l i t a t e r e j e c t i o n of that stigma—of the sense of somehow being reproachable or to blame for having h e r p e s — indicated by a l l of the women i n the study as an important component of moving on from being negatively affected by the disease. The women i n the study indicated a sense of shame around having g e n i t a l herpes because i t i s a sexually-transmitted disease. Understanding the eff e c t s of stigmatization and acknowledging i t s r e a l i t y to the c l i e n t would f a c i l i t a t e working through the shame associated with genital herpes. Helping to challenge the myths that may keep a woman stuck i n her sense of shame and of being stigmatized may greatly a s s i s t i n t h i s work. 91 Providing accurate information, such as the s t a t i s t i c s i n d i c a t i n g the numbers of individuals who have herpes, may help a c l i e n t r e a l i z e how prevalent the condition i s i n our society. R e a l i z i n g that she i s not alone i n l i v i n g with the disease, and that people from a l l walks of l i f e have herpes, may help the c l i e n t to accept that herpes i s not a disease of promiscuity or immorality, further allowing her to re j e c t the stigma and shame associated with the disease. I t i s clear from the study that herpes can i n t e r f e r e with interpersonal relationships i n the l i v e s of some women. Genital herpes presents individuals with p a r t i c u l a r challenges and d i f f i c u l t i e s i n sexual relationships regarding disclosure as well as sexual transmission. Furthermore, the d i f f i c u l t i e s brought f o r t h by these challenges may i n t e n s i f y issues that already e x i s t * i n the l i v e s of someone who has herpes. For example, a woman who has a hi s t o r y of being a f r a i d of re j e c t i o n may be p a r t i c u l a r l y vulnerable to the fear of rej e c t i o n expressed by the par t i c i p a n t s i n t h i s study. These issues may be repeatedly brought into the present for the c l i e n t as she deals with recurrences and the absence of a cure. By being sensitive to rela t e d issues, such as those surrounding her sexuality and interpersonal r e l a t i o n s h i p s , and when relevant f a c i l i t a t i n g exploration of these issues, a counsellor can help a c l i e n t put the impact of the disease into the context of the rest of her l i f e . Most of the women i n the study chose to c a r e f u l l y regulate dis c l o s u r e of t h e i r condition as a way of dealing with the stigma attached to the disease. A counsellor who recognizes that maintaining secrecy i s a way of protecting the s e l f and i s an 92 understandable response to t h i s stigma, can a s s i s t a c l i e n t i n breaking the i s o l a t i o n that can occur when secrecy i s maintained to the point of not seeking out necessary support. A counsellor can f a c i l i t a t e the building of personal confidence and sense of self-worth that may allow the c l i e n t to be w i l l i n g to r i s k d i sclosure and possible negative reactions. Once such strengths are mobilized, a counsellor can consult with a c l i e n t regarding the c a r e f u l choice of a trusted i n d i v i d u a l with whom the r i s k of a negative response to disclosure would be minimal and the chances of support high. The women i n the study reported that fear of r e j e c t i o n by family, friends and acquaintances and p a r t i c u l a r l y by p o t e n t i a l partners made disclosure d i f f i c u l t . A counsellor can help a c l i e n t b u i l d confidence and increase her chances of success during disclosure situations by providing the opportunity to rehearse ways to disclose and to deal with the possible reactions of others by the use of r o l e play. By encouraging a c l i e n t who i s unhappy about her i s o l a t i o n to explore the effectiveness of maintaining silence as a way to protect the s e l f , a more s a t i s f a c t o r y balance between the need for support and r e l a t i o n s h i p , and the need to avoid r e j e c t i o n may be achieved. Various losses r e s u l t i n g from contracting the disease were reported by the women in the current study. By recognizing that a c l i e n t may experience a number of losses with varying i n t e n s i t y , a counsellor can a s s i s t a c l i e n t to come to terms with the g r i e f associated with the p a r t i c u l a r losses she experiences as a consequence of having genital herpes. For example, a woman who was required to have a Caesarean delivery because of lesions 9 3 may g r i e v e the l o s s of the o p p o r t u n i t y t o have a v a g i n a l b i r t h . The women i n the study r e p o r t e d becoming more p r o a c t i v e i n t h e i r own h e a l t h care, managing t h e i r l i f e s t y l e s t o reduce s t r e s s and m a i n t a i n h e a l t h , and educating themselves about herpes as a way of c o p i n g w i t h the l o s s of c o n t r o l they e x p e r i e n c e d as a r e s u l t of c o n t r a c t i n g the d i s e a s e . A c o u n s e l l o r who r e c o g n i z e s the importance of such e f f o r t s can encourage a c l i e n t t o f i n d p e r s o n a l l y meaningful ways t o r e g a i n a sense of c o n t r o l over the course of the d i s e a s e i n her l i f e . A sense of being betrayed by others or being u n j u s t l y t r e a t e d was r e p o r t e d by the women i n the study. While the i n t e n s i t y of t h i s experience v a r i e d among the women, f e e l i n g s of b e t r a y a l and anger were p a r t i c u l a r l y i n t e n s e f o r those women who had not been t o l d they were being exposed t o the v i r u s . The c o u n s e l l o r should be aware of a number of i s s u e s t h a t may a r i s e from c o n t r a c t i n g an i n c u r a b l e d i s e a s e i n a s i t u a t i o n where the c l i e n t was g i v e n no c h o i c e or c o n t r o l . The woman's sense of t r u s t may be compromised, not j u s t i n p a r t n e r s but i n her own judgment t o make wise c h o i c e s r e g a r d i n g the t r u s t w o r t h i n e s s of a p a r t n e r . Furthermore, a c l i e n t may be attempting t o d e a l w i t h anger towards an i n d i v i d u a l who i s no longer i n her l i f e o r whose i d e n t i t y i s unknown. The c o u n s e l l o r must f a c i l i t a t e the work of d e a l i n g w i t h both anger and a sense of having been betrayed, as w e l l as h e l p i n g the c l i e n t minimize s e l f - b l a m e . P r o v i d i n g a c c u r a t e i n f o r m a t i o n r e g a r d i n g asymptomatic shedding may a l s o l e a d t o a r e d u c t i o n of anger a t a p a r t n e r who may i n f a c t not have know he had herpes. One of the main concerns expressed by each woman i n t h e 94 study was the intense desire not to transmit the v i r u s to someone else. Realizing the emotional and physical pain that the disease can cause an in d i v i d u a l , the women i n the study did not want to be responsible for such pain i n another person's l i f e . Feminist researcher Carol G i l l i g a n (1982) noted that the "ethic of r e s p o n s i b i l i t y " and not wishing to hurt others i s "the center of women's moral concern" (p. 132). A counsellor who recognizes t h i s theme and the larger s o c i a l context within which t h i s theme may play i t s e l f out w i l l be alerted to issues of self-blame or s o c i a l d i f f i c u l t i e s that may re s u l t because of an intense burden of personal r e s p o n s i b i l i t y to prevent transmission. For example, one woman i n the study was paralyzed regarding sexual r e l a t i o n s h i p s because of her intense fear of transmitting the vir u s asymptomatically. Encouraging the c l i e n t to r e a l i z e that her partner shares some of t h i s r e s p o n s i b i l i t y with her when he makes an informed choice about remaining i n the r e l a t i o n s h i p with her, may help ease some of t h i s overburdening of r e s p o n s i b i l i t y . In l i g h t of the fact that a counsellor l i v e s within the same s o c i a l context regarding herpes as the c l i e n t , i t i s also important for a counsellor working with a woman who has g e n i t a l herpes to consider her or his own b e l i e f s and fe e l i n g s regarding the disease. An attitude of moral judgment on the part of the counsellor, or the b e l i e f that only promiscuous women contract herpes could further burden a woman with feelings of stigmatization and shame and could c e r t a i n l y impede the counsellor's a b i l i t y to be of assistance to the c l i e n t . The gender of the counsellor may also be an issue for women seeking help for herpes-related issues. P a r t i c u l a r l y i n the 95 early stages of dealing with the condition, f e e l i n g s of shame may lead to discomfort i n the discussion with a male counsellor of issues around intimacy and sexuality. However, i t i s possible that i n the l a t e r stages of coping, the perspective of a male counsellor may be b e n e f i c i a l . The time of diagnosis and shortly following seemed to be a p a r t i c u l a r l y intense time both emotionally and p h y s i c a l l y for many of the women i n the study. Due to a general lack of accurate information about herpes at the time of diagnosis, i n d i v i d u a l s may be p a r t i c u l a r l y vulnerable to the stigma and shame attached to the disease. Since medical professionals are the f i r s t i n d i v i d u a l s a woman with herpes i s l i k e l y to deal with, the implications regarding diagnosis are p a r t i c u l a r l y relevant to them. Providing accurate information regarding the physical consequences of the disease, a l e r t i n g i n d i v i d u a l s to the possible psychosocial consequences, and providing v a l i d a t i o n and understanding of feelings i n response to diagnosis seem c r u c i a l i n helping women with herpes avoid retreating into s i l e n c e , shame, and i s o l a t i o n . Counsellors may also be h e l p f u l i n t h i s regard. However, the re s u l t s of the current study indicate that, as opposed to being a condition that i s dealt with on a single occasion, such as at diagnosis, dealing with g e n i t a l herpes i s a process women work through over the course of time. Furthermore, the women i n the study reported that as t h e i r l i v e s changed, such as with a decision to have a c h i l d or by suddenly becoming si n g l e , they were faced with new challenges or issues they thought previously reconciled. Recognizing that developmental 96 issues may have an impact on the ongoing process of dealing with the physical and s o c i a l consequences of t h i s recurring disease, a counsellor can f a c i l i t a t e the exploration of those issues. Each woman i n the study indicated the importance of "moving on" i n t h e i r l i v e s from being negatively affected by having a recurring, contagious, and incurable disease. However, the women suggested that a number of factors seemed to influence to what extent they were able to accomplish t h i s task at any given time including t h e i r l e v e l of self-esteem, presence (or absence) of a committed relat i o n s h i p , frequency of recurrences, and the amount of support regarding herpes received from previous partners. Understanding adaptation to be a process that may manifest d i f f e r e n t l y for each woman based upon the meaning of the disease i n her l i f e , allows a counsellor to choose intervention strategies appropriate to a woman's p a r t i c u l a r place i n t h i s process. For example, a woman who has just been diagnosed with g e n i t a l herpes may f e e l too exposed or ashamed and therefore unwilling to j o i n a herpes support group. She may, however, be w i l l i n g to speak with one other woman who has the disease, a connection which the counsellor could help her make. As she continues to b u i l d her sense of worth and confidence i n sp i t e of having a stigmatized condition, the c l i e n t may be more able to benefit from attendance at a support meeting and more able to r e j e c t the need to f e e l shame for having g e n i t a l herpes. Implications f o r Future Research V e r i f i c a t i o n of the findings of t h i s study would be f a c i l i t a t e d by r e p e t i t i o n of the study using a larger sample. Because of the small sample size and because the women were a l l 97 volunteers they may be a homogeneous group and therefore not representative of a l l women with recurring g e n i t a l herpes. A larger sample would also provide additional information regarding the v a r i a t i o n within each theme. As with a l l q u a l i t a t i v e research, r e p e t i t i o n of the study to provide continual refinement of the themes found i n t h i s study would strengthen the findings. The p a r t i c i p a n t s i n t h i s study were a l l white, middle-class, heterosexual women between the ages of 32 and 45. Further research into the experience of women of d i f f e r e n t races and cultures, women of d i f f e r e n t socio-economic status, and women who are younger or older may indicate d i f f e r e n t experiences of the disease than that represented i n t h i s study. Counsellors and health care professional who deal with i n d i v i d u a l s who have herpes would benefit from understanding such cohort and cla s s differences i f the do indeed e x i s t . Given the finding that these women experienced recurrent g e n i t a l herpes within an ongoing process of adaptation, lon g i t u d i n a l research exploring the experience of in d i v i d u a l s over time would provide useful information regarding the process of adaptation to the disease. Quantitative research could provide additional information regarding the extent or i n t e n s i t y of the themes within the l i v e s of women l i v i n g with the disease. The r e s u l t s of t h i s study suggest that contracting herpes may be considered a t r a n s i t i o n event. The women i n t h i s study reported changes i n relationships as well as changes i n sense of s e l f as a consequence of having recurring g e n i t a l herpes. Further research exploring the factors that may help or impede an in d i v i d u a l through the process of t h i s t r a n s i t i o n would provide 98 useful information. Q u a l i t a t i v e research exploring the meaning men make of herpes i n t h e i r l i v e s and of the differences i n the experience between men and women i s another area of po t e n t i a l research with implications for counsellors. 9 9 References American College of Obstetricians And Gynecologists. ( 1 9 8 8 ) . P e r i n a t a l herpes simplex virus infe c t i o n s . (ACOG Technical B u l l e t i n 1 2 2 ) Washington, D.C.: ACOG. Bartky, S. L. ( 1 9 9 0 ) . Femininity and domination. London: Routledge. Bierman, S. ( 1 9 8 3 ) . 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Journal of the American Medical Association. 251(16), 2116-2117. 107 APPENDIX C - ORIENTING STATEMENT The f o l l o w i n g statement w i l l be read by the r e s e a r c h e r t o a l l p a r t i c i p a n t s a t the beginning of the f i r s t i n t e r v i e w : B e f o r e we begin t h i s i n t e r v i e w I would l i k e t o g i v e you some background t o the r e s e a r c h study t o p r o v i d e us a p l a c e t o s t a r t . Many people i n our s o c i e t y have g e n i t a l herpes and many of them experience r e c u r r e n c e s . The media has made the p u b l i c aware of the c o n d i t i o n , sometimes u s i n g s e n s a t i o n a l and a l a r m i s t t a c t i c s . Research s t u d i e s have p r o v i d e d us w i t h some i n f o r m a t i o n about the e f f e c t of the d i s e a s e on people's l i v e s . Very l i t t l e r e s e a r c h has looked a t the ex p e r i e n c e from the p e r s p e c t i v e of the i n d i v i d u a l who has herpes. I am i n t e r e s t e d i n l e a r n i n g what having r e c u r r i n g g e n i t a l herpes means t o you and what i t has been l i k e f o r you. The main q u e s t i o n I am a s k i n g you i s : What is your experience of recurring genital herpes and how have you l ived with and made sense of the experience in your l i fe? P l e a s e f e e l f r e e t o take as long as you wish t o answer t h i s q u e s t i o n . During the i n t e r v i e w I may ask you f o r more i n f o r m a t i o n or c l a r i f i c a t i o n about something you have s a i d i n or d e r t o be sure I understand your experience. You are not o b l i g a t e d t o answer or d i s c u s s anything you are not comf o r t a b l e w i t h . Do you f e e l comfortable with t h i s ? 108 APPENDIX D - INTERVIEW QUESTIONS General research question: W h a t i s t h e e x p e r i e n c e a n d m e a n i n g o f r e c u r r i n g g e n i t a l h e r p e s f o r women? Interview question: W h a t i s y o u r e x p e r i e n c e o f r e c u r r i n g g e n i t a l h e r p e s a n d how h a v e y o u l i v e d w i t h a n d made s e n s e o f i t i n y o u r l i f e ? Additional interview questions: 1. Remembering what l i f e was l i k e before you had herpes, can you t e l l me a story about your l i f e and having herpes? 2. What has i t been l i k e f o r you having recurring g e n i t a l herpes? 3. In what ways, i f any, has your l i f e changed sinces having g e n i t a l herpes? 4. What sorts of changes have you experienced and issues have you faced i n dealing with and managing the disease over time? 5. T e l l me about the ways your relationships have changed since you contracted g e n i t a l herpes. 

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