Teaching Tip Sheet: Multiple Loss and Aids-Related Bereavement
Important Issues or Topic in Psychology
Traditionally, models of grief divide the bereavement process into stages or tasks which must be accomplished if the bereaved person is to heal. In Leick and Davidsen-Nielsen's (1991) model of grief work these four tasks are:
Accepting that the loss is a reality;
Entering into the emotions of grief;
Acquiring new skills; and
Reinvesting energy in new ways.
They maintain that if these tasks are not accomplished or are inhibited, the grief cannot be resolved and so develops pathologically. These authors divide pathological grief into three categories: delayed grief, avoided grief, and chronic grief. The limitations of this model as applied to those grieving the loss of a friend or loved one to AIDS-related complications is clear. What was once viewed as pathological grief is often seen as the most adaptive response possible. Similarly, delayed grief, avoided grief, and chronic grief have become common-place occurrences to counseling and clinical psychologists. Thus, models of facilitating AIDS-related bereavement have had to be established.
Lessons Learned from HIV/AIDS
People who grieve the death of someone from HIV-related complications often also face a unique set of issues that challenges historical models of bereavement (Kain, 1997). Rather than approach bereavement from a perspective with strict developmental stages or tasks, current models of bereavement take into account the experience of people who have lost a loved one to HIV-related complications and allow for the flexibility of each individual's experience.
AIDS-related bereavement may differ from traditional models in at least four ways (Kain, 1997). First, many people who die of AIDS do so at a relatively young age. Walker (1991) notes that although survivors may have anticipated an HIV-positive person's death, it still remains out of synchrony with the expected life-cycle of someone young. Second, HIV-related bereavement is also distinguished from other types of grief by the stigma associated with AIDS. This stigma may prevent those who survive from freely mourning or acknowledging the cause of a friend or loved-one's death. Third, AIDS bereavement can become complicated when the grieving person has served as primary caregiver to the deceased. This is especially the case for caregivers who had a difficult time feeling entitled to respite from attending to the needs of the dying person to see to their own personal affairs. For many people, survivor guilt may prevent them from fully engaging in the bereavement process. Particularly in the gay community, survivors may feel guilty about being HIV-negative in light of the suffering of their peers. Children may also experience survival guilt in response to the death of a parent or sibling. Fourth, when survivors are themselves HIV-positive, worry about their own health status may confound bereavement. Clinical and counseling psychologists may need to address some or all of these issues in helping their patients come to terms with a friend or loved one's death.
For many people, the time needed to grieve the loss of one person to AIDS-related complications becomes interrupted by the demands of caring for or mourning the death of another person. Thus, multiple loss, the overwhelming task of living in a situation where continual loss has become commonplace, has become a very important issue that distinguishes HIV-related bereavement from other types of grief. The phenomenon of multiple loss owes its recognition to psychological studies of war-time survivors (Lifton, 1980). The AIDS crisis marks the first time in modern history that wide-spread multiple loss has occurred in an atmosphere of non-violence.
Lifton (1980) identifies five common psychological responses which make up the experience of multiple loss. First, people suffer from indelible mental images of death and dying, stemming from the enormity of the loss. Neugebauer, Rabkin, Williams et al. (1992) in their study of bereavement reactions among gay men experiencing multiple losses from AIDS, reported that men with greater numbers of losses described more preoccupation with and searching for the deceased than did men with fewer losses. Second, people suffer from survivor guilt rooted in the randomness of the situation. In the context of multiple loss, survivor guilt is rarely the sole property of HIV-negative people; Boykin (1991) reports that though survivor guilt was common in HIV-negative gay men, HIV-positive gay men tended to have even higher degrees of survivor guilt. Third, people with multiple loss syndrome often experience a diminished capacity to feel, known as psychic numbing. Fourth, Lifton reports they also often experience a suspicion of "counterfeit nurturance." People who have survived multiple losses often crave special sustenance, however, the identity of "victim" is often highly defended against. Therefore, nurturance given in response to a survivor's multiple losses is often not seen as "real" and is rejected because it unconsciously reinforces a feeling of victimization. Finally, people with multiple loss syndrome actively search for meaning. Schwartzberg (1992) maintains that multiple loss syndrome is extremely relevant to grief in an HIV-immersed subculture. For example, he writes, "it can be an overwhelming experience to be simultaneously mourning a recent loss, remembering several past losses, and anticipating still others to come, yet this is the reality of grieving for many gay men (p. 423)."
The Names Project AIDS quilt has been an effective way for people to express their AIDS-related grief. The last segment of the documentary, "Common Threads: Stories From The Quilt" shows the unfolding of the quilt, the reading of quilt panel names, and the experiences of people who are mourning the death of a loved one. This segment can be a powerful catalyst for a classroom discussion on the bereavement process.
Boykin, F. F. (1991). The AIDS crisis and gay male survivor guilt. Smith College Studies in Social Work, 61(3), 247-259.
Kain, C. D. (1996). Positive: HIV affirmative counseling. Alexandria, VA: American Counseling Association.
Leick, N., & Davidsen-Nielsen, M. (1991). Healing pain: Attachment, loss and grief therapy. London, England: Routledge.
Lifton, R. J. (1980). The concept of the survivor. In J. E. Dimsdale (Ed.), Survivors, victims, and perpetrators: Essays on the Nazi holocaust. Washington, D.C.: Hemisphere.
Neugebauer, R., Rabkin, J. G., Williams, et al. (1992). Bereavement reactions among homosexual men experiencing multiple losses in the AIDS epidemic. American Journal of Psychiatry, 149(10), 1374-1379.
Schwartzberg, S. S. (1992). AIDS-related bereavement among gay men: The inadequacy of current theories of grief. Psychotherapy, 29(3), 442-429.
Walker, G. (1991). In the midst of winter: Systemic therapy with families, couples, and individuals with AIDS infection. New York: W.W. Norton.
Weiss, A. (1989). The AIDS bereaved: Counseling strategies. In J. Dilley, C. Pies & M. Helquist (Eds.), Face to face: A guide to AIDS counseling. AIDS Health Project, University of California, San Francisco.
Craig Kain, PhD
Long Beach, CA