Sexuality and Multiple Sclerosis This article addresses sexuality within the context of living with multiple sclerosis (MS). A discussion of MSrelated dysfunction is followed by assessment tips and a range of interventions. Psychosocial and societal issues are reviewed as well as practice implications for health professionals.
Nancy J. Holland, RN, EdD Pamela F. Cavallo, MSW, CSW National Multiple Sclerosi5 Society New York, NY
SEXUALITY Sexuality is an integral part of our humanity. As Sigmund Freud suggested, sexuality permeates every aspect of our experience-who we are and how we behave. Being sexual is a fact of life as natural as breathing or eating. At the same time, sexuality is complex and multidimensional. It is "an intricate and pervasive aspect of human existence."l In addition to our physiological sexual functions and activities, it embodies • Our sense of sexual identity, "maleness" or "fenlaleness" • How we feel about our femininity or masculinity • How we interact with others • Our instincts, emotions, and intellect • Social, cultural, and religious influences • Our past experiences • Our hopes for the future
RELATIONSHIP ISSUES: INTIMACY AND COMMUNICATION ''The matrix in which much of our sexuality is expressed is the relationship between two people."2 Many such relationships are characterized by a feeling or sense of closeness and caring commonly referred to as intimacy. Carel Germaine NeuroRehabil 1993; 3(4):48-56 Copyright © 1993 by Andover Medical.
Sexuality and Multiple Sclerosis
says, "In a human being, relatedness is both a biological and a psychological imperative. Caring for and being cared for are deeply felt needs as long as life lasts."3 Intimacy has different meanings for each of us; it often contains nonerotic as well as erotic elements, and its meaning tends to change during the life course. In a recent workshop on sexuality and multiple sclerosis (MS), the participants (people with MS and their partners) responded to the question "What does intimacy mean to you?": cuddling, being physically close, late-night or early morning conversations in bed, saying "I love you," and knowing what the other person is thinking or feeling without having to speak. Some experts consider communication the single most important element in a relationship. Certainly it is an extremely important part of the overall relationship. "If the relationship represents the context of sexuality, the communication skills constitute the vehicle of sexual expression."2 Communication comprises both the content of what is said and how it is said. The verbal part of what is communicated conversationally is said to be about 30% to 40% ofthe communication. 4 The remaining percentage encompasses communication style, which refers to factors beyond the content. These nonverbal behaviors include the perception and use of interpersonal space, bodily movements, and vocal cues. Communication styles are strongly influenced by gender. Deborah Tannen refers to the different styles of men and women as genderlects. Women tend to speak and hear the language of intimacy, which is key in the world of connection. Men tend to speak and hear the language of independence, which tends to focus on the world of status. 5 Other powerful determinants of communication styles are culture, race, and ethnicity.
SELF-CONCEPT AND SELF-ESTEEM The self-concept is a central factor in how we function socially and in personal well-being. It is the ways in which we think about ourselves. The self-concept can be viewed as a system of knowl-
49
edge structures that contain memories of emotions, evaluations, beliefs, and descriptive details. 6 It also contains how we define ourselves, including our body image (attractive appearance, physical strength), important social roles and identities (work, parenthood), as well as what we envision for the future (family, employment). Although the bases of these mental representations are formed early in life, the system continues to grow and is transformed throughout the stages of the life course. A central paradox of the selkoncept is its seemingly stable nature existing along with a highly variable view of oneself under certain circumstances. Self-esteem is the way we feel about ourselves. As with our self-image, the basis for self-esteem is developed during intancy and early childhood. It includes our sense or feeling of competence as well as our actual competence or experiences in mastering tasks. At times there may be a wide discrepancy between a person's perceived and actual competence. For example, a person may be successful in the work environment, but in certain situations does not feel confident about her or his abilities. On the other hand, an individual may feel capable of success in an activity, a task which in reality is unlikely because it requires skills that the individual does not possess or resources that are unavailable.
FERTILITY AND PREGNANCY Fertility potential is an important part of sexuality, encompassing the self-concept of ability to become a biological parent, as well as the actual physiological capability. Fertility is generally not affected by MS. 7 Women with MS have menstrual cycles with fertility potential equal to their counterparts unaffected by the disease. Sperm production is likewise not a common target of MS, although reduced sperm counts have been noted, and the transmission may be affected by erectile dysfunction. "Insemination is a possibility if [the affected man] can produce sperm. The procedure is carried out only at centers specifically intended for this purpose."8 Since most men with MS have
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NEUROREHABILITATION / FALL 1993
normal or near-normal sperm production, insemination may be a consideration. However, erectile dysfunction can be reduced in many cases and will be the first-line approach for many couples. The next section addresses related issues in more detail.
MS SEXUAL DYSFUNCTION A statement about normal sexual function helps to frame the issues related to MS sexual dysfunction. The four stages of sexual response are described as "(1) excitement, early stage desire or arousal; (2) plateau, a high level of arousal; (3) orgasm; (4) resolution, the return to unstimulated state."g Problems related to sexuality are common in MS, even in early stages ofthe disease.g,lo Lilius et al. administered to more than 200 individuals with MS a questionnaire which revealed changes in sexual activity of91 % ofthe men and 72% of the women. I I Another report identified 60% of an MS center population as having sexual disturbance. 12 In this section, dysfunction is presented according to a schema of primary, secondary, and tertiary dysfunction, a conceptual model developed by Dr. Labe Scheinberg. 12
1. Primary Dysfunction. This involves damage to the central nervous system (eNS), which produces direct sexual dysfunction such as diminished genital sensation. 2. Secondary Dysfunction. Problems in this area arise from MS symptoms that indirectly affect sexual function, e.g., fatigue. 3. Tertiary Dysfunction. The tertiary category refers to psychological, social, societal, cultural, religious, or environmental obstacles to satisfYing sexual activity, e.g., depression.
Primary Dysfunction In a recent study, two of the most common sexual problems reported by women were altered genital sensation and decreased vaginal lubrication. 13 The third symptom in the "most common" category was diminished libido, which may represent primary neurological dysfunction or a psychological factor such as depression.
One ofthe earliest and most detailed studies of male dysfunction was reported by Vas in 1969 of 37 ambulatory men with MS between the ages of 18 and 50. Sixteen subjects (43%) noted diminished or absent penile erections. Vas also reported a relapsing/remitting pattern of erectile dysfunction for some of the men. 14 Additional complaints for men included decreased penile sensation, weakened or absent ejaculation, and lack of orgasm.
Secondary Dysfunction A number of MS symptoms interfere with sexual activity for both women and men. Illustrative of this is fatigue, one of the most common complaints in MS, reported as 65% in one MS center population. 12 MS fatigue is qualitatively different from exertional fatigue (which may also be present from struggling to use assistive mobility devices). Non-exertional fatigue is unrelated to physical activity and is experienced as a pervasive sense of weariness or exhaustion. It can occur at any time, but is often reported as being present during the late afternoon around 4 or 5 P.M. Another impediment to sexual function is spasticity, an increase in muscle tone described by the individual as muscle tightness or stiffness, most often in the lower extremities. It can be observed as legs 'Jumping" or, in severe cases, the entire body stiffening in spasm. On neurological examination, the reflexes are hyperactive with excessive contraction of stimulated muscle groups. Spasticity causes difficulties in several ways. Adductor spasms of the thighs cause them to clamp together, with separation difficult and painful. Positioning for sexual activity is compromised, and may be impossible. A generalized spasm may occur at the time of orgasm, also causing discomfort. Weakness is another factor that may interfere with positioning or with desired movements during sexual activity, either alone or with a partner. Bladder and/or bowel dysfunction represents additional areas for potential difficulties. Disruptive urinary symptoms may include urgency, frequency, bladder pressure, and incontinence. Bowel incontinence is another possible problem, although not a common MS symptom.
Sexuality and Multiple Sclerosis
Tertiary Dysfunction Psychological, interpersonal, cultural, environmental, and societal issues can be difficult to sort out. The body is the medium of social relationships. It symbolizes our sense of value, desirability, and ability. With a disability such as MS, people often confront a dramatic and noticeable change in their bodies. Feelings of groundedness and ease in negotiating the world of objects and people are disturbed. Disease obstructs the smooth integration of mind and body. People's self-concept, selfesteem, identity, status, and power can be suddenly undermined. These disruptions often are promoted and sustained by elements in the social context. 'Ine range and intensity of these experiences can blunt a person's natural body wisdom and sense of control and efficacy. When our bodies are called into question, our relationship to the outside world weakens. 15
PROBLEMS OF INTIMACY MS disrupts the erotic and nonerotic ways we and our partners express intimacy. Chronic illness can cause individuals to turn their psychic energies inward to deal with changes taking place in their bodies and the intense emotional reactions such as shock, fear, anger, shame, and guilt. At the same time their partners are trying to make some sense of the disease and are experiencing similarly intense emotions. Many couples may feel and may become emotionally isolated from each other. Chronic illness can seriously challenge the intimacy of a relationship.
COMMUNICATION ISSUES Chronic illness causes unexpected changes to occur within the relationship. The relationship can . be likened to a kaleidoscope: when one small particle' shifts, the whole pattern changes. Frequently, communication patterns change or negative patterns become more intense and rigid.
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Communication can be seriously disrupted and become distorted. It can range from highly emotional and intense to overly intellectualized and rational..
SELF-CONCEPT AND SELF-ESTEEM DISRUPTIONS Disability may modifY self-concept when it interferes with an important life role such as mother, father, construction worker, model, bus driver, athlete, or intellectual. How we think about ourselves includes our dreams or goals for the future. Chronic illness can demand abrupt and sometimes drastic changes in how we define ourselves. This impacts our significant relationships and sexuality. Our self-esteem does not constitute a static feeling about ourselves. It is subject to some fluctuations with the average, expected life experiences and environment. Self-esteem, however, can be fragile in the face of a psychosocial crisis precipitated by an unanticipated event like MS. MS like other chronic disabling conditions, can evoke painful feelings, conflicts, and memories from the past which affect self-esteem.
Loss: Grief and Mourning MS involves the loss of part ofthe self which can be physical, psychological, and social. MS has the potential to disrupt not only what life is like now but what life is supposed to be like in the future: it can deprive us of what we have had and valued, and the goals we have had may have to be altered or given up completely. These changes, whether subtle or drastic; sudden, gradual, or prolonged and complete; partial or uncertain, are losses that elicit a series of responses known as bereavement. The bereavement process includes grief and mourning. Grief is a state of intense emotional suffering caused by loss. Mourning includes grief but extends beyond the first reactions into a period of reorganization of the new self-concept. 16 The mourning process, though necessary, can interfere with sexual function, but prior functioning should resume with the healthy resolution of the trauma. Because of cultural, social, and personal reasons, many people are prevented from experiencing the feelings that should follow loss.
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Incomplete or partial grieving leaves residue for future difficulties and may become the forerunner for a wide range of physical and emotional disorders.
Single Adults Who Are Not in a Committed Relationship MS is a disease of young adults. Therefore, some individuals who get MS may not have entered into an intimate, committed heterosexual or homosexual relationship before onset of the illness. For these individuals, the anxieties and uncertainties of beginning a relationship are compounded by MS. One concern in the dating relationship involves when to disclose the MS diagnosis and what to say about the disease. Other uncertainties include physical sexual functioning and sexual attractiveness.
Couples For new heterosexual or homosexual couples, the development of the sexual relationship may be disrupted by the physical and/or psychological ramifications of MS. Spontaneity may cease, and the partner who does not have MS may feel deprived of the sexual pleasure that may have been considered a given in the relationship. The decision to have children usually has to be re-evaluated in light of the MS. A woman with MS may have concerns about pregnancy and its effect on the illness. A man with MS may wonder about his masculinity and whether he is biologically capable of becoming a father. Other worries may include concerns about the ability to physically care for a child, filling the parental role of father or mother, and finances. Any of these concerns can interfere with sexuality.
Societal Attitudes The prevailing societal attitudes about people who are physically disabled include myths about sexuality. These misconceptions can have a powerful impact on self-concept, self-image, and self-esteem. The following statements, from the authors' experience, reported by people with disabilities illustrate some of the attitudes concerning sexuality and disability. • "Women with a disability have no interest in sex." • "Men with a disability are oversexed."
• "Women with a disability are not sexually attractive." • "People with a disability are not sexual." • "Sexual activity is prohibitive for people with chronic illness." • "People with disabilities are like children." • "People with disabilities should not have children." • "People with disabilities can not take care of children."
Culture and Ethnicity Other factors that influence self~concept and selfesteem are culture (including religion) and ethnicity. There is extensive documentation that many ethnic groups have beliefs about illness and treatment that difler significantly from Western scientific medical practice. Health beliefs also vary among African-Americans, African-Caribbeans, Latinos, and Asians. Individual differences within cultural groups may be influenced by length oftime in the United States, age, and socioeconomic status. A critical question is "What meaning does illness have in the person's culture?" The meaning that the illness has or the cause that is attributed to the disease is usually connected to a "folk" treatment sought out from a member of that community. For example, immigrants from a Caribbean island such as Haiti often attribute disease to supernatural causes. Congress and Lyons give an illustration of a young Haitian woman whose daughter had pneumonia. She attributed the illness to a curse put on her baby. Consequently, before she brought the baby to the hospital, she sought the help of a voodoo doctor. 17 As a matter of tradition, many Latinos see illness as either natural or unnatural. Fate or God's will is believed to cause natural illness and unnatural illness is caused from evil done by someone else. Assistance may be sought from an herbal treatment or a spiritualist. Other critical questions are "What meaning does sexuality have in the person's culture?"; "What meaning does sexual dysfunction have in the person's culture?"; and "How is a sexual dysfunction handled?" The final critical question is "How does the meaning of illness, sexuality, and sexual dysfunction interrelate to the person's culture?"
Sexuality and Multiple Sclerosis
WORKING WITH HOMOSEXUAL CLIENTS Clearly, it is not mandatory that health professionals working with gay clients be homosexuals themselves, but it is essential that "straight" health workers be aware that most gay and lesbian clients experience or have experienced shame, secrecy, and fear of disclosure, and that these burdens may persist no matter how long ago the person "came out."18 It is very important that professionals working with homosexual clients confront their own homophobia. One's homophobia may be very subtle and be felt as uncomfortable stirrings, fear, hostility, or awkward self-consciousness. 18 The health professional has to beware of the assumption that the client's homosexuality doesn't make any difference at all, since this could result in important issues being overlooked. And homophobia does not solely reside in the heterosexual health professional; many gay clients may experience internalized homophobia, which can be expressed as depression or explosive anger. If the gay person is in a relationship, the heterosexual world is often hesitant to recognize that as "family." The couple's status as "family" may be challenged by their families of origin, by their ethnic or religious communities, and by mainstream society. Lacking role models, same-sex couples may struggle with "how should we be acting and feeling?" Role negotiation is an issue among all couples, gay or straight, but in a gay relationship, there is often a continuous need for assurance because of the lack of outside support that would offer stability to the relationship. 19 Many issues for gay and lesbian clients will be the same as for heterosexual clients, but the professional needs to be able to recognize the context of being gay, in this predominantly heterosexual society, as being an ostracized minority.
ASSESSMENT OF SEXUAL PARAMETERS In order for problems to be identified and addressed, an assessment is needed. Who should do
53
it? What are necessary components of an assessment? Are there special tips to facilitate the process? In most clinical settings the interview is the primary assessment technique and is examined in this section. An assumption is that the practitioner has an existing primary role, with attention to sexual aspects ofthe client's life merely one facet of overall activities. The practitioner needs to know that this assumption may not hold true or may require additional considerations or a different approach when cultural variables are considered. How the interview is integrated with other areas of concern depends on the individual practitioner's professional responsibilities and style. For example, the social worker or psychologist addresses the topic with the overall assessment of psychological and relationships issues; the nurse might introduce sexuality and sexual function as a component of the clinical assessment of bladder and bowel function, since bladder, bowel, and sexual dysfunction frequently occur concurrently. All of these functions address intimate aspects of a person's life. Which practitioner within a team setting actually assumes responsibility depends as much on individual comfort level with the subject as with knowledge and skill level. It is important for the professional to examine his or her personal attitudes about sex-and the ability to deal openly and reassuringly with clients regarding this topic. An important question is "Who on the team can best meet the needs of the client?" To ask the question another way, "What factors might be important in engaging the client?" Support exists for the importance of language and ethnic match in the use of mental health services. IS, 19 Potential similarities in the use of health and mental health services suggest that the client's language may help determine selection of the team member. In other instances gender matching may be a critical factor. For example, one study found that gender match was associated with higher use of services for Asian-Americans, Mexican-Americans, and Euro-Americans. 19 The critical pieces of the assessment interview include the primary, secondary, and tertiary areas previously described. Questions and discussion can be dealt with in a logical sequence by framing
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topics within a time sequence-present, past, and future. What is the current situation in regard to abilities and limitations? What was sex like in the past? What is important for future sexual activity? This permits the counselor to conduct the interview within the client's or couple's situation and expectations. The standard questions may not be appropriate for different cultures. Practitioners can learn about cultural beliefs and behaviors by (1) discussion with clients; (2) cultural education training programs; (3) employing staff with diverse cultural backgrounds; and (4) interviewing community leaders. There are some tips that can help to facilitate the assessment process: • Assume behaviors; e.g., "How often do you masturbate?" rather than "Do you masturbate?" • Refer to practices as common; e.g., "Oral sex is widely practiced-is this an activity you and your partner enjoy?" • Encourage language that is comfortable for the client!couple. There is no universally comfortable terminology; existing terminology is either very clinical or offensive to some people. • To enhance disclosure, limit questions to those for which a one word reply can be given. • Establish rapport with conversation in other areas before addressing sexual issues. • Use "bridges," e.g., relate a couple's general style of communication to communication about sexual issues. • Move from less sensitive to more sensitive topics. • Avoid questions that might be disrespectful or insensitive relative to race, ethnicity, or sexual preference.
Interventions A useful model for counseling interventions relative to sexual function/dysfunction was developed by Annon and is referred to by the acronym PLISSIT. 20 Four steps are identified for implementation in a progressively complex design: 1. Permission (creating an atmosphere of respect
and concern) is conveyed for certain behaviors which the client may believe are unacceptable or
deviant. Some beliefs may be culturally influenced. Practitioners need to take special care to accept and not judge these beliefs.
2. Limited information about possible interventions can encourage a client to experiment with a new option. For example, the practitioner may provide information about various types of vibrators which may help to compensate for diminished sensation. Again, interventions should be culturally sensitive. 3. Specific suggestions communicate possible interventions that are individualized based on personal, cultural, and illness characteristics as well as the assessment interview. Erectile difficulties often lead to a search for alternative measures. Vacuum tumescence constriction might be recommended for a man whose visual and coordination difficulties preclude penile self-injection, and who is not interested in a surgically placed prosthesis. 4. Intensive therapy is indicated when complex fac-
tors require multiple-session in-depth exploration and analysis of issues by the client!couple and a specially trained therapist. The therapist should note that with some clients from cultural backgrounds such as African-American, AfricanCaribbean, and Latino, community "folk" therapy may be taking place simultaneously with the traditional treatment. PLISSIT steps 1 through 3 can be used by most health professionals who are comfortable with discussion of sexuality and sexual function, and who possess the necessary knowledge and basic educational and counseling skills. Intensive therapy, however, is beyond the purview of most practitioners and requires referral to a specialist. In both instances, language and ethnic/racial matches may be additional requisites. The flow of the content can follow the format presented in this article of primary, secondary, and tertiary dysfunction. A chart to highlight the problems and potential interventions follows.
Primary Dysfunction Interventions Problem
Interventions
Decreased sensation
Oral stimulation
Sexuality and Multiple Sclerosis
Problem p.ainful sensation
Inadequate vaginal lubrication Erectile dysfunction
Interventions Vibrator Amitriptylline (Elavil R) Carbamazepine (Tegretol R) Water-soluble feminine lubricant (not petroleum-based) Vacuum tumescence constriction Penile injections (papaverine or prostaglandin El) Surgical implantation of rod or pump device in the penis
Secondary Dysfunction Interventions Problem Non-exertional fatigue
Spasticity
Bladder
Interventions Morning intimacy, including lovemaking Scheduled rest periods/naps Motorized scooter to conserve energy Pemoline (Cylert R), amantadine (Symetrel R) Baclofen (Lioresal R) Stretching exercises Local application of cold Phenol nerve blocks Motor point blocks Neurectomy Anticholinergic medication for storage dysfunction (emptying contractions) with low volume of urine Intermittent catherization (IC) for emptying dysfunction (bladder retains after voiding)
Problem
Bowel incontinence
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Interventions Anticholinergic medication and Ie for combined dysfunction (strong emptying contractions, but urine retained) Regular evacuation High-bulk diet Anticholinergic medication
Tertiary Dysfunction Interventions The tertiary interventions are predicated on client need with a focus on adaptation and the prevention of problems. These can be used alone or in combination with the primary and secondary interventions.
Need/Problem Knowledge about MS and sexuality
Relationshi p/ communication issues (includes MS and sexuality)
Interventions Literature 23 Audiovisual resources Group education Workshop 24 Literature Audiovisual resources Workshop Individual counseling Individual peer counseling Group counseling Couple's counseling Couples' group counseling Sex therapy
SUMMARY Sexuality encompasses much more than sexual function-it includes feelings about one's gender and one's self and how these feelings are exhibited
through self-image and self-esteem. Chronic illness and progressive disability can have a negative impact upon a person's sexuality through physiological sexual dysfunction, negative psychological manifestations, or relationship disharmony. Whatever the impediment to positive sexuality, interventions are possible. The initial step is
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NEUROREHABILITATION / FALL 1993
recogmtlon of the pervasiveness of sexuality throughout all aspects of a person's functioning, and the importance of integration of sexuality within the total sel£ Counseling is the umbrella for interventions in the area of sexuality, with multiple factors to be addressed. Sexual function refers to sexual activity, either alone or with a partner. Dysfunction can be viewed
within a conceptual model of primary, or physiological impairment of genital function; secondary, or nongenital physiological impairment which interferes with sexual function; and tertiary, which encompasses all psychosocial factors. With assessment by a knowledgeable and sensitive health professional, problem areas can be identified and remediated.
REFERENCES 1. Larrimore P. MS special report: sexuality (introduction. Paraplegia News 1990; April:35. 2. Foley F, IversonJ. Sexuality and MS. In: Kalb R, Scheinberg L, eds. Multiple Sclerosis and the Family. New York: Demos Publications, 1992; 63-S2. 3. Germaine CB. Social work practice in health care. New York: The Free Press, 19S4. 4. Sue DW, Sue D. Counseling the culturally different. New York: John Wiley & Sons, 1990. 5. Tannen D. You just don't understand. New York: Ballantine Books, 1990. 6. Nurius P. The self-concept: a social-cognitive update. Social Casework 1989; 70(5):285-294. 7. Birk K, Kalb R. Multiple sclerosis and planning a family: Fertility, pregnancy, childbirth, and parenting roles. In: Kalb R, Scheinberg L, eds. Multiple Sclerosis and the family. New York: Demos, 1992. S. Stenager E, Stenager EN, Jensen K. Sexual aspects of multiple sclerosis. Seminars in Neurology 1992; 12(2):120-124. 9. Masters W, Johnson V, Kolodny R. Masters and Johnson on sexual human loving. Boston: Little Brown, 1986. 10. Dewis M, Thornton N. Sexual dysfunction in multiple sclerosis. ] Neuroscience Nsg 1989; 21(3):175-179. 11. Lilius H, Valtonen E, Wikstrom J. Sexual problems in patients suffering from multiple sclerosis. Scand] Soc Med 1976; 4:41-4. 12. Scheinberg L, Smith C. Signs and symptoms of multiple sclerosis. In: Scheinberg L, Holland N, eds. Multiple Sclerosis; A Guide for patients and their families, 2nd ed. New York: Raven Press, 1987. 13. Stenager E, Stenager EN, OldsenJ, et a\. Multiple sclerosis sexual dysfunction.] Sex Educ Ther 1990; 16:262-269. 14. Vas C. Sexual impotence and some automatic disturbances in men with multiple sclerosis. Acta Neurol Scand 1969; 45:166-182. 15. Saleebey D. Biology'S challenge to social work:
16. 17.
IS. 19. 20.
21.
22. 23. 24.
25.
embodying the person-in-environment perspective. Social Work 1992; 37(2):112-118. Simos B. A time to grieve: Loss as a universal human experience. New York: Family Service Association of America, 1979. Congress E, Lyons B. Cultural differences in health beliefs: Implications for social work practice in health care settings. Social Work in Health Care 1992; 17(3):Sl-97. Markowitz L. Homosexuality: are we still in the dark? Networker 1991; January-February, 29-31. See also Darryl Dahlheimer and Jennifer Feigal, "Bridging the Gap," Networker, JanuaryFebruary 1991. Flaskerud JH. The effects of culture-compatible intervention on the utilization of mental health services by minority clients. Community Mental Health]ournaI1986; 22(2):127-141. Sue S, et a\. Community mental health services for ethnic minority groups: a test of the cultural responsiveness hypothesis. Journal of Consulting and Clinical Psychology 1991; 59(4):533-540. Annon J. The PLISSIT model: a proposed conceptual scheme for the behavioral treatment of sexual problems.] Sex Educ Ther 1976; 2:1-Hi. Zasler N. Sexuality issues in multiple sclerosis. Sexuality Update 1991; 4:10-12. Literature on sexuality and other aspects of multiple sclerosis for lay and professional audiences can be obtained by writing to the National Multiple Sclerosis Society, 733 Third Avenue, New York, New York 10017 or by telephoning the MS Information Center: 1-S00-LEARN MS. The National Multiple Sclerosis Society has local chapters throughout the United States. These chapters provide an array of direct services to people with MS and their families which include education programs and counseling. To learn which chapter serves your area consult the local telephone directory or telephone the MS Information Center: 1-800-LEARN MS.
Nancy J. Holland, RN, EdD Pamela F. Cavallo, MSW, CSW National Multiple Sclerosi5 Society New York, NY
SEXUALITY Sexuality is an integral part of our humanity. As Sigmund Freud suggested, sexuality permeates every aspect of our experience-who we are and how we behave. Being sexual is a fact of life as natural as breathing or eating. At the same time, sexuality is complex and multidimensional. It is "an intricate and pervasive aspect of human existence."l In addition to our physiological sexual functions and activities, it embodies • Our sense of sexual identity, "maleness" or "fenlaleness" • How we feel about our femininity or masculinity • How we interact with others • Our instincts, emotions, and intellect • Social, cultural, and religious influences • Our past experiences • Our hopes for the future
RELATIONSHIP ISSUES: INTIMACY AND COMMUNICATION ''The matrix in which much of our sexuality is expressed is the relationship between two people."2 Many such relationships are characterized by a feeling or sense of closeness and caring commonly referred to as intimacy. Carel Germaine NeuroRehabil 1993; 3(4):48-56 Copyright © 1993 by Andover Medical.
Sexuality and Multiple Sclerosis
says, "In a human being, relatedness is both a biological and a psychological imperative. Caring for and being cared for are deeply felt needs as long as life lasts."3 Intimacy has different meanings for each of us; it often contains nonerotic as well as erotic elements, and its meaning tends to change during the life course. In a recent workshop on sexuality and multiple sclerosis (MS), the participants (people with MS and their partners) responded to the question "What does intimacy mean to you?": cuddling, being physically close, late-night or early morning conversations in bed, saying "I love you," and knowing what the other person is thinking or feeling without having to speak. Some experts consider communication the single most important element in a relationship. Certainly it is an extremely important part of the overall relationship. "If the relationship represents the context of sexuality, the communication skills constitute the vehicle of sexual expression."2 Communication comprises both the content of what is said and how it is said. The verbal part of what is communicated conversationally is said to be about 30% to 40% ofthe communication. 4 The remaining percentage encompasses communication style, which refers to factors beyond the content. These nonverbal behaviors include the perception and use of interpersonal space, bodily movements, and vocal cues. Communication styles are strongly influenced by gender. Deborah Tannen refers to the different styles of men and women as genderlects. Women tend to speak and hear the language of intimacy, which is key in the world of connection. Men tend to speak and hear the language of independence, which tends to focus on the world of status. 5 Other powerful determinants of communication styles are culture, race, and ethnicity.
SELF-CONCEPT AND SELF-ESTEEM The self-concept is a central factor in how we function socially and in personal well-being. It is the ways in which we think about ourselves. The self-concept can be viewed as a system of knowl-
49
edge structures that contain memories of emotions, evaluations, beliefs, and descriptive details. 6 It also contains how we define ourselves, including our body image (attractive appearance, physical strength), important social roles and identities (work, parenthood), as well as what we envision for the future (family, employment). Although the bases of these mental representations are formed early in life, the system continues to grow and is transformed throughout the stages of the life course. A central paradox of the selkoncept is its seemingly stable nature existing along with a highly variable view of oneself under certain circumstances. Self-esteem is the way we feel about ourselves. As with our self-image, the basis for self-esteem is developed during intancy and early childhood. It includes our sense or feeling of competence as well as our actual competence or experiences in mastering tasks. At times there may be a wide discrepancy between a person's perceived and actual competence. For example, a person may be successful in the work environment, but in certain situations does not feel confident about her or his abilities. On the other hand, an individual may feel capable of success in an activity, a task which in reality is unlikely because it requires skills that the individual does not possess or resources that are unavailable.
FERTILITY AND PREGNANCY Fertility potential is an important part of sexuality, encompassing the self-concept of ability to become a biological parent, as well as the actual physiological capability. Fertility is generally not affected by MS. 7 Women with MS have menstrual cycles with fertility potential equal to their counterparts unaffected by the disease. Sperm production is likewise not a common target of MS, although reduced sperm counts have been noted, and the transmission may be affected by erectile dysfunction. "Insemination is a possibility if [the affected man] can produce sperm. The procedure is carried out only at centers specifically intended for this purpose."8 Since most men with MS have
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normal or near-normal sperm production, insemination may be a consideration. However, erectile dysfunction can be reduced in many cases and will be the first-line approach for many couples. The next section addresses related issues in more detail.
MS SEXUAL DYSFUNCTION A statement about normal sexual function helps to frame the issues related to MS sexual dysfunction. The four stages of sexual response are described as "(1) excitement, early stage desire or arousal; (2) plateau, a high level of arousal; (3) orgasm; (4) resolution, the return to unstimulated state."g Problems related to sexuality are common in MS, even in early stages ofthe disease.g,lo Lilius et al. administered to more than 200 individuals with MS a questionnaire which revealed changes in sexual activity of91 % ofthe men and 72% of the women. I I Another report identified 60% of an MS center population as having sexual disturbance. 12 In this section, dysfunction is presented according to a schema of primary, secondary, and tertiary dysfunction, a conceptual model developed by Dr. Labe Scheinberg. 12
1. Primary Dysfunction. This involves damage to the central nervous system (eNS), which produces direct sexual dysfunction such as diminished genital sensation. 2. Secondary Dysfunction. Problems in this area arise from MS symptoms that indirectly affect sexual function, e.g., fatigue. 3. Tertiary Dysfunction. The tertiary category refers to psychological, social, societal, cultural, religious, or environmental obstacles to satisfYing sexual activity, e.g., depression.
Primary Dysfunction In a recent study, two of the most common sexual problems reported by women were altered genital sensation and decreased vaginal lubrication. 13 The third symptom in the "most common" category was diminished libido, which may represent primary neurological dysfunction or a psychological factor such as depression.
One ofthe earliest and most detailed studies of male dysfunction was reported by Vas in 1969 of 37 ambulatory men with MS between the ages of 18 and 50. Sixteen subjects (43%) noted diminished or absent penile erections. Vas also reported a relapsing/remitting pattern of erectile dysfunction for some of the men. 14 Additional complaints for men included decreased penile sensation, weakened or absent ejaculation, and lack of orgasm.
Secondary Dysfunction A number of MS symptoms interfere with sexual activity for both women and men. Illustrative of this is fatigue, one of the most common complaints in MS, reported as 65% in one MS center population. 12 MS fatigue is qualitatively different from exertional fatigue (which may also be present from struggling to use assistive mobility devices). Non-exertional fatigue is unrelated to physical activity and is experienced as a pervasive sense of weariness or exhaustion. It can occur at any time, but is often reported as being present during the late afternoon around 4 or 5 P.M. Another impediment to sexual function is spasticity, an increase in muscle tone described by the individual as muscle tightness or stiffness, most often in the lower extremities. It can be observed as legs 'Jumping" or, in severe cases, the entire body stiffening in spasm. On neurological examination, the reflexes are hyperactive with excessive contraction of stimulated muscle groups. Spasticity causes difficulties in several ways. Adductor spasms of the thighs cause them to clamp together, with separation difficult and painful. Positioning for sexual activity is compromised, and may be impossible. A generalized spasm may occur at the time of orgasm, also causing discomfort. Weakness is another factor that may interfere with positioning or with desired movements during sexual activity, either alone or with a partner. Bladder and/or bowel dysfunction represents additional areas for potential difficulties. Disruptive urinary symptoms may include urgency, frequency, bladder pressure, and incontinence. Bowel incontinence is another possible problem, although not a common MS symptom.
Sexuality and Multiple Sclerosis
Tertiary Dysfunction Psychological, interpersonal, cultural, environmental, and societal issues can be difficult to sort out. The body is the medium of social relationships. It symbolizes our sense of value, desirability, and ability. With a disability such as MS, people often confront a dramatic and noticeable change in their bodies. Feelings of groundedness and ease in negotiating the world of objects and people are disturbed. Disease obstructs the smooth integration of mind and body. People's self-concept, selfesteem, identity, status, and power can be suddenly undermined. These disruptions often are promoted and sustained by elements in the social context. 'Ine range and intensity of these experiences can blunt a person's natural body wisdom and sense of control and efficacy. When our bodies are called into question, our relationship to the outside world weakens. 15
PROBLEMS OF INTIMACY MS disrupts the erotic and nonerotic ways we and our partners express intimacy. Chronic illness can cause individuals to turn their psychic energies inward to deal with changes taking place in their bodies and the intense emotional reactions such as shock, fear, anger, shame, and guilt. At the same time their partners are trying to make some sense of the disease and are experiencing similarly intense emotions. Many couples may feel and may become emotionally isolated from each other. Chronic illness can seriously challenge the intimacy of a relationship.
COMMUNICATION ISSUES Chronic illness causes unexpected changes to occur within the relationship. The relationship can . be likened to a kaleidoscope: when one small particle' shifts, the whole pattern changes. Frequently, communication patterns change or negative patterns become more intense and rigid.
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Communication can be seriously disrupted and become distorted. It can range from highly emotional and intense to overly intellectualized and rational..
SELF-CONCEPT AND SELF-ESTEEM DISRUPTIONS Disability may modifY self-concept when it interferes with an important life role such as mother, father, construction worker, model, bus driver, athlete, or intellectual. How we think about ourselves includes our dreams or goals for the future. Chronic illness can demand abrupt and sometimes drastic changes in how we define ourselves. This impacts our significant relationships and sexuality. Our self-esteem does not constitute a static feeling about ourselves. It is subject to some fluctuations with the average, expected life experiences and environment. Self-esteem, however, can be fragile in the face of a psychosocial crisis precipitated by an unanticipated event like MS. MS like other chronic disabling conditions, can evoke painful feelings, conflicts, and memories from the past which affect self-esteem.
Loss: Grief and Mourning MS involves the loss of part ofthe self which can be physical, psychological, and social. MS has the potential to disrupt not only what life is like now but what life is supposed to be like in the future: it can deprive us of what we have had and valued, and the goals we have had may have to be altered or given up completely. These changes, whether subtle or drastic; sudden, gradual, or prolonged and complete; partial or uncertain, are losses that elicit a series of responses known as bereavement. The bereavement process includes grief and mourning. Grief is a state of intense emotional suffering caused by loss. Mourning includes grief but extends beyond the first reactions into a period of reorganization of the new self-concept. 16 The mourning process, though necessary, can interfere with sexual function, but prior functioning should resume with the healthy resolution of the trauma. Because of cultural, social, and personal reasons, many people are prevented from experiencing the feelings that should follow loss.
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Incomplete or partial grieving leaves residue for future difficulties and may become the forerunner for a wide range of physical and emotional disorders.
Single Adults Who Are Not in a Committed Relationship MS is a disease of young adults. Therefore, some individuals who get MS may not have entered into an intimate, committed heterosexual or homosexual relationship before onset of the illness. For these individuals, the anxieties and uncertainties of beginning a relationship are compounded by MS. One concern in the dating relationship involves when to disclose the MS diagnosis and what to say about the disease. Other uncertainties include physical sexual functioning and sexual attractiveness.
Couples For new heterosexual or homosexual couples, the development of the sexual relationship may be disrupted by the physical and/or psychological ramifications of MS. Spontaneity may cease, and the partner who does not have MS may feel deprived of the sexual pleasure that may have been considered a given in the relationship. The decision to have children usually has to be re-evaluated in light of the MS. A woman with MS may have concerns about pregnancy and its effect on the illness. A man with MS may wonder about his masculinity and whether he is biologically capable of becoming a father. Other worries may include concerns about the ability to physically care for a child, filling the parental role of father or mother, and finances. Any of these concerns can interfere with sexuality.
Societal Attitudes The prevailing societal attitudes about people who are physically disabled include myths about sexuality. These misconceptions can have a powerful impact on self-concept, self-image, and self-esteem. The following statements, from the authors' experience, reported by people with disabilities illustrate some of the attitudes concerning sexuality and disability. • "Women with a disability have no interest in sex." • "Men with a disability are oversexed."
• "Women with a disability are not sexually attractive." • "People with a disability are not sexual." • "Sexual activity is prohibitive for people with chronic illness." • "People with disabilities are like children." • "People with disabilities should not have children." • "People with disabilities can not take care of children."
Culture and Ethnicity Other factors that influence self~concept and selfesteem are culture (including religion) and ethnicity. There is extensive documentation that many ethnic groups have beliefs about illness and treatment that difler significantly from Western scientific medical practice. Health beliefs also vary among African-Americans, African-Caribbeans, Latinos, and Asians. Individual differences within cultural groups may be influenced by length oftime in the United States, age, and socioeconomic status. A critical question is "What meaning does illness have in the person's culture?" The meaning that the illness has or the cause that is attributed to the disease is usually connected to a "folk" treatment sought out from a member of that community. For example, immigrants from a Caribbean island such as Haiti often attribute disease to supernatural causes. Congress and Lyons give an illustration of a young Haitian woman whose daughter had pneumonia. She attributed the illness to a curse put on her baby. Consequently, before she brought the baby to the hospital, she sought the help of a voodoo doctor. 17 As a matter of tradition, many Latinos see illness as either natural or unnatural. Fate or God's will is believed to cause natural illness and unnatural illness is caused from evil done by someone else. Assistance may be sought from an herbal treatment or a spiritualist. Other critical questions are "What meaning does sexuality have in the person's culture?"; "What meaning does sexual dysfunction have in the person's culture?"; and "How is a sexual dysfunction handled?" The final critical question is "How does the meaning of illness, sexuality, and sexual dysfunction interrelate to the person's culture?"
Sexuality and Multiple Sclerosis
WORKING WITH HOMOSEXUAL CLIENTS Clearly, it is not mandatory that health professionals working with gay clients be homosexuals themselves, but it is essential that "straight" health workers be aware that most gay and lesbian clients experience or have experienced shame, secrecy, and fear of disclosure, and that these burdens may persist no matter how long ago the person "came out."18 It is very important that professionals working with homosexual clients confront their own homophobia. One's homophobia may be very subtle and be felt as uncomfortable stirrings, fear, hostility, or awkward self-consciousness. 18 The health professional has to beware of the assumption that the client's homosexuality doesn't make any difference at all, since this could result in important issues being overlooked. And homophobia does not solely reside in the heterosexual health professional; many gay clients may experience internalized homophobia, which can be expressed as depression or explosive anger. If the gay person is in a relationship, the heterosexual world is often hesitant to recognize that as "family." The couple's status as "family" may be challenged by their families of origin, by their ethnic or religious communities, and by mainstream society. Lacking role models, same-sex couples may struggle with "how should we be acting and feeling?" Role negotiation is an issue among all couples, gay or straight, but in a gay relationship, there is often a continuous need for assurance because of the lack of outside support that would offer stability to the relationship. 19 Many issues for gay and lesbian clients will be the same as for heterosexual clients, but the professional needs to be able to recognize the context of being gay, in this predominantly heterosexual society, as being an ostracized minority.
ASSESSMENT OF SEXUAL PARAMETERS In order for problems to be identified and addressed, an assessment is needed. Who should do
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it? What are necessary components of an assessment? Are there special tips to facilitate the process? In most clinical settings the interview is the primary assessment technique and is examined in this section. An assumption is that the practitioner has an existing primary role, with attention to sexual aspects ofthe client's life merely one facet of overall activities. The practitioner needs to know that this assumption may not hold true or may require additional considerations or a different approach when cultural variables are considered. How the interview is integrated with other areas of concern depends on the individual practitioner's professional responsibilities and style. For example, the social worker or psychologist addresses the topic with the overall assessment of psychological and relationships issues; the nurse might introduce sexuality and sexual function as a component of the clinical assessment of bladder and bowel function, since bladder, bowel, and sexual dysfunction frequently occur concurrently. All of these functions address intimate aspects of a person's life. Which practitioner within a team setting actually assumes responsibility depends as much on individual comfort level with the subject as with knowledge and skill level. It is important for the professional to examine his or her personal attitudes about sex-and the ability to deal openly and reassuringly with clients regarding this topic. An important question is "Who on the team can best meet the needs of the client?" To ask the question another way, "What factors might be important in engaging the client?" Support exists for the importance of language and ethnic match in the use of mental health services. IS, 19 Potential similarities in the use of health and mental health services suggest that the client's language may help determine selection of the team member. In other instances gender matching may be a critical factor. For example, one study found that gender match was associated with higher use of services for Asian-Americans, Mexican-Americans, and Euro-Americans. 19 The critical pieces of the assessment interview include the primary, secondary, and tertiary areas previously described. Questions and discussion can be dealt with in a logical sequence by framing
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topics within a time sequence-present, past, and future. What is the current situation in regard to abilities and limitations? What was sex like in the past? What is important for future sexual activity? This permits the counselor to conduct the interview within the client's or couple's situation and expectations. The standard questions may not be appropriate for different cultures. Practitioners can learn about cultural beliefs and behaviors by (1) discussion with clients; (2) cultural education training programs; (3) employing staff with diverse cultural backgrounds; and (4) interviewing community leaders. There are some tips that can help to facilitate the assessment process: • Assume behaviors; e.g., "How often do you masturbate?" rather than "Do you masturbate?" • Refer to practices as common; e.g., "Oral sex is widely practiced-is this an activity you and your partner enjoy?" • Encourage language that is comfortable for the client!couple. There is no universally comfortable terminology; existing terminology is either very clinical or offensive to some people. • To enhance disclosure, limit questions to those for which a one word reply can be given. • Establish rapport with conversation in other areas before addressing sexual issues. • Use "bridges," e.g., relate a couple's general style of communication to communication about sexual issues. • Move from less sensitive to more sensitive topics. • Avoid questions that might be disrespectful or insensitive relative to race, ethnicity, or sexual preference.
Interventions A useful model for counseling interventions relative to sexual function/dysfunction was developed by Annon and is referred to by the acronym PLISSIT. 20 Four steps are identified for implementation in a progressively complex design: 1. Permission (creating an atmosphere of respect
and concern) is conveyed for certain behaviors which the client may believe are unacceptable or
deviant. Some beliefs may be culturally influenced. Practitioners need to take special care to accept and not judge these beliefs.
2. Limited information about possible interventions can encourage a client to experiment with a new option. For example, the practitioner may provide information about various types of vibrators which may help to compensate for diminished sensation. Again, interventions should be culturally sensitive. 3. Specific suggestions communicate possible interventions that are individualized based on personal, cultural, and illness characteristics as well as the assessment interview. Erectile difficulties often lead to a search for alternative measures. Vacuum tumescence constriction might be recommended for a man whose visual and coordination difficulties preclude penile self-injection, and who is not interested in a surgically placed prosthesis. 4. Intensive therapy is indicated when complex fac-
tors require multiple-session in-depth exploration and analysis of issues by the client!couple and a specially trained therapist. The therapist should note that with some clients from cultural backgrounds such as African-American, AfricanCaribbean, and Latino, community "folk" therapy may be taking place simultaneously with the traditional treatment. PLISSIT steps 1 through 3 can be used by most health professionals who are comfortable with discussion of sexuality and sexual function, and who possess the necessary knowledge and basic educational and counseling skills. Intensive therapy, however, is beyond the purview of most practitioners and requires referral to a specialist. In both instances, language and ethnic/racial matches may be additional requisites. The flow of the content can follow the format presented in this article of primary, secondary, and tertiary dysfunction. A chart to highlight the problems and potential interventions follows.
Primary Dysfunction Interventions Problem
Interventions
Decreased sensation
Oral stimulation
Sexuality and Multiple Sclerosis
Problem p.ainful sensation
Inadequate vaginal lubrication Erectile dysfunction
Interventions Vibrator Amitriptylline (Elavil R) Carbamazepine (Tegretol R) Water-soluble feminine lubricant (not petroleum-based) Vacuum tumescence constriction Penile injections (papaverine or prostaglandin El) Surgical implantation of rod or pump device in the penis
Secondary Dysfunction Interventions Problem Non-exertional fatigue
Spasticity
Bladder
Interventions Morning intimacy, including lovemaking Scheduled rest periods/naps Motorized scooter to conserve energy Pemoline (Cylert R), amantadine (Symetrel R) Baclofen (Lioresal R) Stretching exercises Local application of cold Phenol nerve blocks Motor point blocks Neurectomy Anticholinergic medication for storage dysfunction (emptying contractions) with low volume of urine Intermittent catherization (IC) for emptying dysfunction (bladder retains after voiding)
Problem
Bowel incontinence
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Interventions Anticholinergic medication and Ie for combined dysfunction (strong emptying contractions, but urine retained) Regular evacuation High-bulk diet Anticholinergic medication
Tertiary Dysfunction Interventions The tertiary interventions are predicated on client need with a focus on adaptation and the prevention of problems. These can be used alone or in combination with the primary and secondary interventions.
Need/Problem Knowledge about MS and sexuality
Relationshi p/ communication issues (includes MS and sexuality)
Interventions Literature 23 Audiovisual resources Group education Workshop 24 Literature Audiovisual resources Workshop Individual counseling Individual peer counseling Group counseling Couple's counseling Couples' group counseling Sex therapy
SUMMARY Sexuality encompasses much more than sexual function-it includes feelings about one's gender and one's self and how these feelings are exhibited
through self-image and self-esteem. Chronic illness and progressive disability can have a negative impact upon a person's sexuality through physiological sexual dysfunction, negative psychological manifestations, or relationship disharmony. Whatever the impediment to positive sexuality, interventions are possible. The initial step is
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recogmtlon of the pervasiveness of sexuality throughout all aspects of a person's functioning, and the importance of integration of sexuality within the total sel£ Counseling is the umbrella for interventions in the area of sexuality, with multiple factors to be addressed. Sexual function refers to sexual activity, either alone or with a partner. Dysfunction can be viewed
within a conceptual model of primary, or physiological impairment of genital function; secondary, or nongenital physiological impairment which interferes with sexual function; and tertiary, which encompasses all psychosocial factors. With assessment by a knowledgeable and sensitive health professional, problem areas can be identified and remediated.
REFERENCES 1. Larrimore P. MS special report: sexuality (introduction. Paraplegia News 1990; April:35. 2. Foley F, IversonJ. Sexuality and MS. In: Kalb R, Scheinberg L, eds. Multiple Sclerosis and the Family. New York: Demos Publications, 1992; 63-S2. 3. Germaine CB. Social work practice in health care. New York: The Free Press, 19S4. 4. Sue DW, Sue D. Counseling the culturally different. New York: John Wiley & Sons, 1990. 5. Tannen D. You just don't understand. New York: Ballantine Books, 1990. 6. Nurius P. The self-concept: a social-cognitive update. Social Casework 1989; 70(5):285-294. 7. Birk K, Kalb R. Multiple sclerosis and planning a family: Fertility, pregnancy, childbirth, and parenting roles. In: Kalb R, Scheinberg L, eds. Multiple Sclerosis and the family. New York: Demos, 1992. S. Stenager E, Stenager EN, Jensen K. Sexual aspects of multiple sclerosis. Seminars in Neurology 1992; 12(2):120-124. 9. Masters W, Johnson V, Kolodny R. Masters and Johnson on sexual human loving. Boston: Little Brown, 1986. 10. Dewis M, Thornton N. Sexual dysfunction in multiple sclerosis. ] Neuroscience Nsg 1989; 21(3):175-179. 11. Lilius H, Valtonen E, Wikstrom J. Sexual problems in patients suffering from multiple sclerosis. Scand] Soc Med 1976; 4:41-4. 12. Scheinberg L, Smith C. Signs and symptoms of multiple sclerosis. In: Scheinberg L, Holland N, eds. Multiple Sclerosis; A Guide for patients and their families, 2nd ed. New York: Raven Press, 1987. 13. Stenager E, Stenager EN, OldsenJ, et a\. Multiple sclerosis sexual dysfunction.] Sex Educ Ther 1990; 16:262-269. 14. Vas C. Sexual impotence and some automatic disturbances in men with multiple sclerosis. Acta Neurol Scand 1969; 45:166-182. 15. Saleebey D. Biology'S challenge to social work:
16. 17.
IS. 19. 20.
21.
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embodying the person-in-environment perspective. Social Work 1992; 37(2):112-118. Simos B. A time to grieve: Loss as a universal human experience. New York: Family Service Association of America, 1979. Congress E, Lyons B. Cultural differences in health beliefs: Implications for social work practice in health care settings. Social Work in Health Care 1992; 17(3):Sl-97. Markowitz L. Homosexuality: are we still in the dark? Networker 1991; January-February, 29-31. See also Darryl Dahlheimer and Jennifer Feigal, "Bridging the Gap," Networker, JanuaryFebruary 1991. Flaskerud JH. The effects of culture-compatible intervention on the utilization of mental health services by minority clients. Community Mental Health]ournaI1986; 22(2):127-141. Sue S, et a\. Community mental health services for ethnic minority groups: a test of the cultural responsiveness hypothesis. Journal of Consulting and Clinical Psychology 1991; 59(4):533-540. Annon J. The PLISSIT model: a proposed conceptual scheme for the behavioral treatment of sexual problems.] Sex Educ Ther 1976; 2:1-Hi. Zasler N. Sexuality issues in multiple sclerosis. Sexuality Update 1991; 4:10-12. Literature on sexuality and other aspects of multiple sclerosis for lay and professional audiences can be obtained by writing to the National Multiple Sclerosis Society, 733 Third Avenue, New York, New York 10017 or by telephoning the MS Information Center: 1-S00-LEARN MS. The National Multiple Sclerosis Society has local chapters throughout the United States. These chapters provide an array of direct services to people with MS and their families which include education programs and counseling. To learn which chapter serves your area consult the local telephone directory or telephone the MS Information Center: 1-800-LEARN MS.
