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Adolescents with Sickle-Cell Anemia Deal With Life and Death Joan LePontois MA

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Pediatric Social Worker, Department of Social Work, Michael Reese Hospital and Medical Center, Chicago, IL, 60616 Published online: 26 Oct 2008.

To cite this article: Joan LePontois MA (1975) Adolescents with Sickle-Cell Anemia Deal With Life and Death, Social Work in Health Care, 1:1, 71-80, DOI: 10.1300/J010v01n01_10 To link to this article: http://dx.doi.org/10.1300/J010v01n01_10

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ADOLESCENTS WITH SICKLE-CELL ANEMIA DEAL WITH LIFE AND DEATH

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Joan LePontois, MA

ABSTRACT. Confusion associated with the deuelopmental problems o f adolescence is intensified and prolonged for those suffering from sickle-cell anemia. Feelings o f isolation and dependence due t o a life-threatening disease can impede the transition t o responsible, self-aclualizing maturity. Weekly group meetings with nine young women suffering from sickle-cell anemia helped l h e m moue toward maturation and a sense o f their o w n competence. The experience o f closeness with other adolescents w h o shared the same uulnerabilities was mutually facilitating. These young women had been caught by a sense that i t was impossible t o progress t o independent maturity, and so became resigned and passiue. Y e t an inner sense o f vitality and their emerging sexuality occasionally sparked rebellion against this helplessness. Sexual sensations and potential for family life were auailable counterbalances against recurrent association with pain and death. Through group support these linkages with hope were strengthened.

This paper describes how group work treatment was used to reduce the emotionally crippling impact of sickle-cell anemia on a group of late-adolescent girls. Participants were nine young women between the ages of 15 and 24 years, all of whom were still in the adolescent phase of their development. Meetings were held once a week for a period of 9 months. Working with the social worker as co-leader was a black nurse from the Hematology Clinic of the hospital. Her participation as a nurse reinforced the patients' sense that we were offering help with problems we recognized t o be physically and psychologically interlocked. Our concern for these patients was their extreme isolation from family and friends and their feelings of being uniquely troubled with this illness. Many had never talked with another person with sickle-cell anemia. Their apathy and lack of hope about achieving in school or at a job, their inability t o be realistic about a life plan, and the many myths and misunderstandings they had about the changes in their bodies from Ms. LePontois is a pediatric social worker in the Department of Social Work, Michael Reese Hospital and Medical Center, 29th Street and Ellis Avenue, Chicago, Illinois 60616. Acknowledgements are due to the nurse-therapist Gwen Gary for her help in the group.

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sickle-cell anemia were problems amenable to group effort and support. We believed that the episodic life interruptions characteristic of sickle-cell anemia limited the range of possible identifications for the adolescent and engendered maladaptive behavior. I t seemed to us that in order to come to terms with fears of pain, illness, and death, these young women needed t o experience relatedness to others, to develop a sense of their identity and the conviction or at least hope that it was possible to move from childhood t o adulthood. We believed and hoped it could become real to them that neither sickle-cell anemia nor all their early losses and deprivations need steal away all experiences of assuming adult responsibilities, attitudes, and a continuing sense of emotional growth. The importance of group therapy in assisting the troubled adolescent to achieve separateness from infantile dependence on parental figures, while encouraging relatedness to peers, has been Rachman describes the adolescent's need for peer group affiliation in order to achieve a sense of personal identity. Yet the very system that supports the healthy adolescent as he struggles with his emerging identity often rejects the physically ill adolescent; adolescents reject those who appear different in any way. In a therapeutic peer g o u p the adolescent's identity develops as he is allowed to experiment with new roles, experience a broad range of possible identifications, and comect maladaptive behavior patterns through feedback from peers. Hence the value of the therapist helping the group to create norms for acceptable maladaptive behavior patterns through feedback from peers. Hence the value of the therapist helping the group itself to create norms for acceptable behavior inside and outside the group without the development of power struggles between the "parent-therapist" and " ~ h i l d . " ~ The adolescent's self-esteem is enhanced when he finds himself understood by others who have many of the same vulnerabilities. YalomB describes the patient's sense of relief, the diminishing of his sense of isolation when he finds his troubles ape not unique, and the boost to his self-esteem when he finds he can effectively help another group member. 4 1 this seemed needed by our patients and feasible t o hope for. Since these adolescents ape subject to life-threatening medical crises and a possibly shortened life span we were concerned about helping them with their feelings and thoughts about death. A person must have a sense of personal identity t o think about the meaning of his own death.9 However, often those who are traumatically reminded of death develop a negative identity. lLiftonlo describes the negative identity of the suxvivors of a o s h i m a ; they called each other by a special name that meant "being separate horn mankind, forsaken." R e tendency of the chronically ill patient to msume a negative identity has been widely discussed in the literature.

Joan LePontois

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asse en" describes the relationship between the adolescent's sense of identity and his thoughts about illness or death. The adolescent who feels guilty about separating from his parents may view his illness as a punishment for his attempts t o individuate himself. We believed group therapy would be helpful in assisting these adolescents t o achieve a sense of self-worth, and that the ability t o express and share feelings about illness and death would be facilitated if a sense of self-effectiveness could be established. The socioeconomic situation of all group members was similar. All were black, all received public assistance, all lived in Chicago's innercity area with overcrowded schools and poor housing conditions. It takes exceptional energy and resources for healthy adolescents living in this situation to secure the education they desire and to find the work they enjoy; for our sickle-cell adolescents the tasks seemed hopeless. PERCEPTION OF MOTHERS AS UNGIVING

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In the beginning group meetings, dependency wishes and the relationships between the gwls and their mothers were the focus of discussion. The girls complained of not receiving enough care and attention, of being unwanted and misunderstood. When asked why they saw their relationships with their mothers as so unsatisfying, they were unable to be more explicit than simply, "Too many kids at home," or "They hate me because I'm always sick." One complained of having t o care for other sick or younger family members; one had to do her "mother's work"; one had t o take care of her "mother's babies." They talked bitterly about having t o give up their own babies. Two members had undergone abortions and blamed their mothers for forcing them to have this procedure. During this period, the protection and care the girls felt was missing in relationships with their mothers was expressed in the attitudes and actions between group members. For example, they offered t o teach each other t o sew, one member providing transportation for the group, t o meetings, etc. The bleak picture of home life that the girls painted for us in these first meetings was in sharp contrast t o our observations of them and their families during various hospitalizations and clinic visits in the following months. We did not find the relationships between mothers and daughters predominantly hostile. Nor were the mothers disinterested in their daughters' well-being. Rather, our patients, usually the most severely ill members of their families, received special attention and affection from family members. In many cases the families viewed our patients as the "favorite child." Why this discrepancy in perception? It is with deep longing and

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ambivalence that the healthy adolescent begins to separate and individuate himself from his family. Newly felt sexual energies, widening social and intellectual interests, and the support of the peer group are felt only periodically as compensation for the enticing protection of idealized parents in early childhood relationships. Much of the healthy adolescent's negative feelings toward his parents can be understood as a defense against painfully strong longings to remain a child. Our adolescents had particularly complex developmental tasks. The severity of their illness necessitated long periods of dependent care at home and in the hospital. The girls' fragile hold on life resulted in protected relationships with their families. The intensity of this protective care and the uncertainties of their future made separating from close family bonds difficult. It is likely that in describing only negative feelings toward their mothers our adolescents were defending themselves against powerful wishes to be taken care of as children, to be kept "safe." The girls displaced these longings for dependent c a e onto the group, and for a period members both gave and received. This enabled the girls to experience some control over these dependent wishes and helped them to loosen the intense ties with their families. The adolescent's negative feelings toward his family, an expression of the normal process of disillusionment with idealized parents, were intensified for our group members. They had to experience both the disappointment and loss that normally occur in this process and, additionally, the knowledge that part of the legacy from their parents is an illness, which, in their eyes, keeps them from all that is enjoyable. This sharing of anger and bitterness toward "ungiving mothers" allowed the adolescents t o move away from dependent issues and on t o concerns about their own identity which ushered in the next phase of their work together. By temporarily rejecting their parents, they were able to experience the unique dimensions of their own values, problems, and longings in a vivid way. After the girls had worked on many issues related t o an emerging adult self, their feelings about family relationships were more integrated; both positive and negative feelings were expressed.

STRUGGLE FOR IDENTITY Group discussions then shifted toward educational plans and jobs. The girls spoke hopefully, but sometimes unrealistically, about plans to go to graduate school, be a nurse, doctor, airline stewardess. However, this early hopefulness soon gave way to depression and disappointment about the realistic difficulties of enjoying an active, satisfying life. The girls described teachers who were disinter-

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ested in their special problems; inner-city schools without special programs; employers who could not provide special work situations. Before group members could share their emotional resources or plan more realistically for themselves they had to express their disappointments and fears and experience the comfort of being understood. They had great difficulty discussing these feelings directly. Rather, they revealed concerns and depression via their varied medical questions on sickle-cell anemia--questions usually asked without affect and following a member's expressed wish t o achieve something. During a discussion on employment problems the conversation abruptly shifted to questions about hemoglobin, capillaries, and blood platelets. At first the nurse gave the technically accurate answers to the girls' questions, but as the questions increased we suggested that group members themselves had many answers they could share with each other. Slowly the girls became aware of the resources within their own group. They themselves had information about sickle-cell anemia and about jobs and we encouraged them t o openly express their fears about educational or vocational achievement. The girls also used medical questions t o disguise their concerns about being unattractive. Feelings of shame about the effects of the illness on their bodies were expressed in such questions and comments as: "Why do people with sickle-cell have yellow eyes?" "What is jaundice?" "My friends laugh at my yellow eyes." Then the girl who raised the question would refuse any discussion or exploration of her concern, and the group would move on t o a more technical or abstract question. As, during a discussion on blood transfusions one member commented, "My mother died so suddenly of a cerebral hemorrhage." The group resisted any discussion of this event. These requests for medical information allowed the girls to bring up traumatic issues while maintaining some control over the anxiety these issues evoked. I t was comforting t o believe that these issues had final and concrete answers, that there was a simple explanation as t o why they felt unable to achieve, why they felt a deep sense of shame about their bodies, and why many of those who had been closest t o them were dead. Finally, questions about sickle-cell anemia kept them close t o what was familiar. For years they had heard of themselves discussed in relation t o their illness, experiencing their identity in the form of a disease. These girls used their "fixed" patient identity as a defense against exposing themselves or risking change. It was particularly strange and frightening t o them t o wonder about their ability t o act independently, to experience themselves as sexually adult women joined to a finite life cycle with.losses behind and ahead of them. As the group members became more aware of their own resources

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they were able to tolerate better the anxiety of questions that had no answers. Their need to distance themselves from their feelings through medical questions lessened. As they realized that their leaders did not possess any final truth, the girls became more important to each other. At this point, some members were less willing to tolerate the expressed dependency needs of others. Angry conflicts developed among them as the group norms for independence and responsible action developed. As the girls viewed their own dependent wishes more cdtically, they projected these wishes onto each other, and bitter arguments resulted over the girls' internal struggles to grow up. Some members still wished t o be taken care of. They handled their resentment by withdrawing from discussions of school or jobs. At the same time, there were angry outbursts against authority figures whom they saw as indifferent and insensitive to their unique needs: doctors, parents, white people, group leaders, people who tried t o take away their rights to have a baby, go to college, maintain a job, live alone. The imposition by adults of diaphragms, .morphine, and attentions appropriate to a small child was seen as assaultive to their ha& sense of competency. Yet, the girls were deeply ambivalent in their accusations of restraint by authority figures and their requests for greater freedom. In one meeting following angry outbursts against authority, the group paradoxically discussed rules and limits. They described their conviction that people demonstrate affection for each other when limits are set: parents for children, teachers for students, doctors for patients. They felt there were not enough rules and limits for their lives! Thus, their ambivalence played itself out in protests against the restraints of authority and in simultaneous requests for greater freedom and pleas for more absolutes.

IDENTITY AND SEXUALITY Discussion of sexuality was primarily important t o these patients as a way of defining themselves against time and in relation t o others they cared about. Also, the experiencing of sexuality had a rrestitutiond dimension. Sexual sensations were experienced as relief fnom pain and constant association with death. The excitement of crushes, new body awareness, and t h e possibility of pregnancy symbolized exciting aliveness and their similarity to other healthy adolescents. E d y in the group meetings the girls used medical questions t o distance themselves horn feelings of shame, anxiety, or grief. Later, dliscussions of sexual concerns, problems of dating, birth control, and pregnancy sewed this function. Sickle-cell anemia created many sexual problems for these young women: a depreciated body image, the

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anxiety of bodily changes, medical risk in pregnancy. Yet, the emotional tone during these conversations was often one of excitement, humor, and an optimistic sense of enjoyment to come. They turned to these topics whenever they were feeling particularly hopeless, as immediately subsequent to a discussion on death. Jaundice, "yellow eyes," underweight, leg ulcers, and late sexual development were among the symptoms of sickle-cell anemia that contributed directly to the girls' feelings of shame about their bodies. As they described boys who found them physically unattractive and girls who continually reminded them of their physical "defects," their heightened vulnerability to peer response was evident. Healthy adolescents have difficulty integrating their newly felt sexual energies, often experiencing these sensations as a frightening intrusion from the outside. Our patients experienced the sexual sensations that threaten a stable sense of self in combination with or in rapid sequence to abrupt physiological changes related to their illness. For these girls the developmental tasks of late adolescence implied more than intimacy with a love partner and the integration of dramatic physical and emotional changes. From earliest childhood they had learned to fear bodily change and to anticipate pain and incapacity from the slightest physical sensation. Suddenly a slight cold resulted in a life-threatening pneumonia. A muscular ache became a critical sickle-cell crisis within a few hours. They could not welcome the newly experienced complexity of sexual change. During a discussion on premarital sex one girl remarked, "I hate it that there's not one right answer." Finally, these adolescents had to cope with their feelings of envy, rivalry, and anger toward other women. They envied their mothers' ability to bear children safely and to live in health. It was painful to recognize that their mothers, whose healthy lives they already envied, might be genetically responsible for their illness. The girls envied the health and opportunities their therapists enjoyed. They controlled this envy and hostility during the first group meetings with the fantasy that the black nurse had sickle-cell anemia and so was "just like them." When the group consolidated and the girls felt more support from each other, their hostility and envy of us was more openly expressed. Group members were more helpful to each other about issues of sexuality than any of the other problems confronted, enthusiastically identifying with a member who was moving toward a resolution of a sexual concern. The adolescents' feelings of bodily shame and envy were countered by the acceptance and affection of the group. And the girls' anxieties about change were compensated by the excitement of sexuality, that is, new feelings of intense aliveness. They developed a defiant attitude toward any situation that prevented them from participating in normal life activities: "So I have a leg

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ulcer, H rock dance anyway." "So your boyfriend doesn't want t o take you out anywhere, go alone." "You're not welcome there. You're welcome here." Through these discussions it became clear that the girls were more willing t o tolerate anxiety or pain than numbness or "feeling dead." This was vividly illustrated in their reluctance t o receive pain-killing drugs such as demerol or morphine. "I hate it when I'm really sick and they give me drugs; I'm never sure I'm alive."

DEATH During the last few group meetings the girls were able t o explore and describe some of their feelings about dying. Their frequent hospitalizations throughout the group's existence brought the girls closer t o discussions of loss, pain, and death. Also, in discussions of sexuality they experienced a vivid sense of aliveness that enabled them t o move closer to their feelings about death. In the earlier phases of the group brief comments on death were interrupted by medical questions. When a group member was hospitalized there was denial of the severity of the attack. In other ways discussion of feelings of fear and loss was forestalled. Now, after the girls had a stronger sense of their competence and their unique identity, they were able t o recall periods of time in Intensive Care. Their families and medical staff had believed they would die. One member had been told by physicians during two separate hospitalizations that she was dying. Members described feeling apprehensive and sad during these critical periods. But, as one girl added, "One doctor told me I was going t o die by 9 years, another before 17, and I'm 19 now. You don't really listen t o what they tell you." Most of the girls agreed that dying would feel like going t o sleep and described the dreamlike state that they had experienced in Intensive Care. Most had the fantasy of a life after death and felt this afterlife would be more satisfying than the life they were now experiencing. Before the group was formed, our adolescents had isolated themselves. I t was easier t o deny their wishes t o love, work, and enjoy life as an adult person than try t o feel a moment of competence and then have the experience lost in the next sickle-cell crisis. To integrate their feelings about death they needed t o believe it was possible t o move from childhood t o adulthood. "1 remembered how I felt when P was working; I felt excited, light, really happy. When I got sick P remembered those days and thought I'd try t o get a job again. But when 1 was really lonely I didn't w m t t o remember anything." The result of this isolation and despair was the experience of "feeling dead." One member described her past isolation as "feeling dead, being

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in another world, on the outside looking in on this world." Another member remarked, "I knew I'd lost my job because I'd been in the hospital too long, then I didn't care anymore. I felt dead inside. I couldn't stand to feel that way, and I thought I'd kill myself." Throughout the g o u p the adolescents' suicidal or desolate feelings were not in direct relation to the intense physical pain they suffered or the anticipation of an early death. They did not describe with intense rage or grief their feelings about dying. Rather, they were desolate when they lost hope in their own resources to achieve, to experience a moment of competence. During the last group meetings, when one member had some trust in her own capacities to grow, she spoke of dying as a sleepy, dreamlike state, not as an inner despair.

THERAPISTS' RESPONSE TO THE GROUP What anxieties did the group members evoke in their therapists? We became aware of the limitations of our skills, empathy, and relationships vis-a-vis the debilitating effects of sickle-cell anemia on their bodies and their emotional energies. We were constantly reminded of the uncertainty of our own lives and the possibility of sudden death. It was difficult to offer a consistent relationship. Our inclinations sometimes were to withdraw from their grief and hopelessness, or to feel indispensably close because of our very intimate discussions of life and death, and the girls' feelings that only group members were willing to talk about death. It was difficult at times to believe our own conviction that these adolescents, assaulted by physical pain and the constant fear of death, could find satisfaction in independent decisions and activity. We struggled against feelings of helplessness--theirs and ours. We had to ask ourselves whether the ability to act independently, to find resources to try once more, can only be built on a long succession of satisfying life experiences or is there worth in fleeting moments of feeling creatively effectual, of sensing new dimensions of potential t o grow? These adolescents helped us understand that the intense sense of aliveness they so valued and at times began t o describe was what sustained them in their long rehearsal with death. But to feel so alive, to experience the promise of adult sexuality and independent action and still recognize the close proximity of sudden loss, failure, and death, brings such anxiety that at times only rigid controls made them feel safe. That they ambivalently tried to exact these from us was burdensome. We conclude that whether moments of independence and creative

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competence are lost in the next sickle-cell crisis or in the next human few, we all share in the periodic dying away of our effectual times. And for all of us the memory of these moments of intense aliveness sustains and protects us with meaning. Hn helping these adolescents recognize and talk about these feelings without such intense anxiety, we were able t o clarify and make vivid again our own sense of competence. This was one of the many gratifications from working with this group.

REFERENCES 1. Wolf, A., and Schwartz, E. K. Psychoanalysis in Groups. New York: Gmne & Stratton, 1962. 2. Epstein, N. "A Comparison in Observation and Techniques Utilized in Group Therapy with Male Adolescent Character Disorders from Varying Socioeconomic Background." Paper read at the American Group Psychotherapy Association Convention, 1967, Chicago, Illinois. 3. Rachman, A. W. "A Life Saving Fantasy." Paper read at the Postgraduate Center for Mental Health, 1967,New York, New York. 4. Rachman, A. W. "Adolescent Drug Abuse: A Search for Identity." Paper read at the Drug Abuse Seminar, 1970,Paramus, New York. 5. Rachman, A. W. "The Family Crisis and Identity Formation." Paper read a t the Association of Jewish Center Workers' National Conference, 1971, Grossinger, New York. 6. Rachman, A. W. Identity Group Psychotherapy with Adolescents. Springfield, Ill.: Charles C Thomas, 1972. 7. Rachman, A. W. "Talking I t Out Rather Than Fighting I t Out: Prevention of a Delinquent Gang War by Group Therapy Intenrention." International Journal of Group Psychotherapy 19 (1969). 8. Yalom, Irvin. The Theory and Practice of Group Psychotherapy. New York: Basic Books, 1970. 9. Fulton, Robert. Death and Identity. New York: Wiley & Sons, 1965. 10. Eifton, Robert. "Hiroshima." In Death and Identity, edited by R.Fulton. New York: Wiley & Sons, 1965. 11. Eassen, William. The Dying Child. Springfield, Ill.: Charles C Thomas, 1972.

Adolescents with sickle-cell anemia deal with life and death.

Confusion associated with the developmental problems of adolescence is intensified and prolonged for those suffering from sickle-cell anemia. Feelings...
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