by Alan D. Wolfelt, Ph.D.
A friend or family member has experienced the death of someone loved from AIDS. You want to help, but are not sure how to go about it. This article will guide you in ways to turn your cares and concerns into positive actions.
AIDS and Disenfranchised Grief
Disenfranchised grief is experienced when the death of someone loved is not acknowledged or socially supported. Unfortunately, still today many survivors of AIDS deaths are disenfranchised. They frequently are denied the opportunity to openly express their feelings or to be emotionally supported by friends and family.
Because of the social stigma surrounding the disease, survivors of AIDS feel the pain of the loss, yet may not know how, or where, or if, they should express it. But just like other bereaved people grieving the loss of someone loved, AIDS survivors need to talk, to cry, sometimes to scream, in order to heal.
Instead, AIDS survivors are shunned by a society already uncomfortable with death and grief. Worse yet, AIDS victims and the people who love and care for them are often blamed for exposing others to the dread disease. As a result of this fear and misunderstanding, survivors of AIDS deaths are often left with a feeling of abandonment at a time when they desperately need unconditional support and understanding.
Recognize the Significance of Relationships
Gay male AIDS survivors, in particular, are often ignored when recognizable kinship ties do not exist. Inappropriately, society prescribes that close, meaningful relationships are only possible among immediate family. Yet, many lovers of AIDS victims have enjoyed lengthy, enriching, monogamous relationships with the person who died. Family members, however, sometimes deny the significance of that relationship.
As a helper, acknowledge the impact of the death on the bereaved lover. Let the survivor “teach you” about the meaningfulness of the relationship. Be nonjudgmental as you reach out with open ears and a loving heart.
Respect the Need to Grieve
Often ignored in their grief are the parents, brothers, sisters, grandparents, uncles, aunts, spouses and children of AIDS victims. Why? Because of the nature of the death, it is sometimes kept a secret. If the death cannot be talked about openly, the wounds of grief will go unhealed.
As a caring friend, you may be the only one willing to be with the survivors. Your physical presence and permissive listening create a foundation for the healing process. Allow the survivors to talk, but don’t push them. Let them know you are ready to listen if, and when, they want to share their thoughts and feelings.
Accept the Intensity of the Grief
As I mentioned before, the grief of AIDS survivors is naturally complicated by society’s attitudes regarding the disease. The sad reality is that this situation magnifies the grief at a time when survivors’ typical support systems are either not available or potentially damaging. Accept that survivors may be struggling with explosive emotions, guilt, fear and shame well beyond the limits experienced in other types of death. Be patient, compassionate and understanding.
Use the Name of the Person Who Died
Use the name of the person who died when talking to AIDS survivors. Hearing the name can be comforting and it confirms that you have not forgotten this important person who was so much a part of their lives.
Respect Faith and Spirituality
If you allow them, AIDS survivors will “teach you” about their feelings regarding faith and spirituality. If faith is a part of their lives, let them express it in ways that seem appropriate. Many survivors disenfranchised in their grief rely on their spirituality as a way to find love and acceptance denied them by family and friends.
Survivors may also need to explore how religion may have complicated their grief. They may have been taught that AIDS results from sin and they may have internalized this inappropriate assumption. Whatever the situation, your presence and desire to listen without judging are critical helping tools.
Stay Sensitive to Bereavement Overload
Many AIDS survivors will be physically, emotionally and spiritually drained from caring for someone with such a debilitating disease. And they may have experienced the loss not only of the person who died, but also the loss of friends and family who have abandoned them.
The overwhelming impact of these multiple losses demands your special awareness and sensitivity. Preparing food, washing clothes or cleaning the house are among the practical ways you can express your love and support. Remember-this support is needed not just in the first few days following the death, but also in the weeks and months ahead.
To help AIDS survivors, you need to have an abundance of patience. You may even become the target of their explosive emotions. Realize that the grief process takes time and allow mourners to proceed at their own pace. Don’t force your timetable for healing or set expectations about how they should respond.
If survivors become silent or remote, don’t push with questions. Turning inward is a part of healing in grief. Often total silence is absolutely necessary.
Be Aware of Holidays and Anniversaries
Your friend may have a difficult time during special occasions like holidays and anniversaries. These events emphasize the absence of the person who has died. Respect this pain as a natural extension of the grief process. Learn from it. And, most important, never try to take the hurt away.
Sometimes special rituals and traditions of remembrance take place during these times. Memorial quilts, for example, have been created to remember those who have died of AIDS. Perhaps you can initiate such a project or plan a special ritual.
Be Aware of Support Groups
Support groups are one of the best ways to help AIDS survivors. In a group, survivors can connect with other people who share the commonality of the experience. They are allowed and encouraged to tell their stories as much, and as often, as they like. You may be able to help survivors locate such a group. This practical effort on your part will be appreciated.
Work Together as Helpers
Lovers, friends and family who experience the death of someone to AIDS must no longer be disenfranchised. As helpers, you need to join with other caring persons to provide support and acceptance for survivors, who need to grieve in healthy ways if they, and we as a society, are to heal.