Pastoral Care for THose Affected with AIDS

Pastoral Care for Those Affected by AIDS

Faith based organizations fullfill an integral role within society. They can and should form part of the prevention, care and support efforts within the field of HIV/AIDS. A question frequently asked however is: "How do I talk to or counsel a person living with HIV/AIDS?" This question is not only asked by care partners, friends, and family but also by church professionals, clergy and lay.

Even though most religious professionals have had to take some course(s) in pastoral counseling, they often feel inadequate when it comes to providing emotional/spiritual support to individuals and families affected by HIV/AIDS.

Once there is some basic understanding of what HIV-infection and AIDS do to the body, and there is basic understanding and openness about prevention options, life-styles, and treatment, most church leaders will find empathic ways to listen to and counsel PLWHA. Counseling and Pastoral Care for PLWHA suddenly doesn't look too different from Pastoral Care in other area's.

The emotional/spiritual needs of persons living with HIV/AIDS have never been more acute. HIV positive individuals are living longer. Because they are living longer, they have to deal with longer-term stresses. Increasing numbers of family members and significant others are choosing to care for the infected individual and they also need emotional/spiritual support.

More and more church and community members are coming out of the closet to let it be known that they or their loved one has HIV/AIDS. Increasingly they are seeking out and even demanding supportive, compassionate, and non- judgemental emotional/spiritual support from our religious communities.

We do not ask someone who has cancer, lupus, or suffered a heart attack how they got sick; so why should we ask that of someone with HIV? When someone tells us their HIV status, they are usually dealing with the present and future more than the past. There may be lifestyle issues that need to be discussed at a future time, but our initial reaction needs to be compassion-- not questioning.

Spending time blaming people who are HIV positive for their illness distracts from the most important issues. The truth is that we have all done things in our life that involved risk. For the most part, we have been spared the consequences of those acts. We are hypocritical when we blame others if they suffer the consequences of their acts. The "blame game" prevents us from giving beneficial pastoral care to those who need it. Judgement can only be given by our Creator, not us.

Compassion is being a channel of God's grace and coming to the side of one who is hurting. Compassion is shown in gentleness, kindness, acceptance, and love. Pastoral care that lacks compassion is not helpful. Compassion is the way of Jesus, and is the basis of all faiths.

Fear leads some pastors and churches to reject people infected/affected by HIV/AIDS. They may refuse to visit or care for them. We must confront our fears with facts, put judgmentalism and prejudice behind us, and get on with the privilege and obligation of ministry.

We all will die; none of us knows when death will arrive. Therefore, our focus needs to be on how we will live the rest of our life. Focusing only on death as is often done in the face of HIV/AIDS, gives the impression that we have given up hope and are just waiting for the person to die. Focusing on life declares that the person has a lot of living yet to do.

Many of us like to be in control of everything, including the direction of our conversations. This approach can sabotage the best efforts in support. The earlier one is in the counseling relationship with the person living with HIV/AIDS, the more that person needs to control the issues that are discussed.

If one begins the relationship by making demands of the HIV positive person such as his/her immediate repentance, notification of family/partner(s), and acceptance of death, one is being, at best, unfair and unhelpful, or even destructive.

We must keep the trust people place in us. Disclosing one's HIV status is often a difficult decision. It means becoming vulnerable and trusting another with a secret. Pastoral Care providers are not free to tell others secrets entrusted to them. They should not tell spouses, church committees, pastors, or friends. If we break confidentiality, we may hurt the one who trusted us so much that he/she never reaches out for help again.

All people are created in the image of God. All people inherently have great dignity and eternal worth. God's grace has gone out to all people and God, calls all people to a life filled with power, love, joy, and service to others. "God so loved the world" (John 3:16) means that there are no second class people. We must embody the message of love or we fail to offer the Gospel.

HIV/AIDS surfaces concerns about death, prolonged illness, lack of control of our lives, financial stability, transmission of the disease, prejudice, and more. The giving of good pastoral care requires that we confront these issues and get in touch with our own emotions about them.

We must be careful, however, to respond to the needs of the person and not our own anxiety, fear, and pity. Our role is to be a pastor to them, not the reverse. At the same time Pastoral Care providers should be emotionally present. They should feel free to appropriately cry, laugh, or express other emotions when visiting with a person who has HIV/AIDS.

One of the tragedies of HIV is that many people are reluctant to touch someone who is HIV positive. Some of this hesitation is due to irrational fears about contracting HIV through casual contact. Others hesitate because they do not accept the HIV positive person or the lifestyle they are believed to have.

Whatever the reason, refusing to touch someone who wants to be touched sends the message that we are not emotionally present for the person or that we do not accept the person. (We must also be sensitive to times when a person does not want to be touched for any reason or cannot be touched because of a physical condition.) Our willingness to touch shows our willingness to care.

People who are infected/affected by HIV wrestle with the stages of grief. They deal with shock, denial, anger, bargaining, depression, and acceptance. People go through these stages in different ways and time periods and may bounce back and forth between stages. People will grieve over their HIV status, and AIDS diagnosis, the loss of a job, becoming symptomatic, the loss of their future, the death of their friends, and the anticipation of their own death.

The job of Pastoral Care providers is not necessarily to move people through these stages but to help them deal with their present stage. We are called to offer support to our brothers and sisters during these difficult times.

Those infected/affected with HIV deal with a variety of issues such as social isolation, rejection by friends and family, prolonged periods of illness, fear of what tomorrow will bring, the sometimes negative reactions of the religious community, reproductive decisions, guilt, and grieving.

As givers of pastoral care, we need to recognize these issues and help people as they work their way through them. Faithbased Organizations also need to educate the community about HIV/AIDS so that it may respond supportively.

No one experiences God in the same way. Some people express their faith emotionally; others are quiet and contemplative. Some people enjoy singing; others prefer to listen. Some belong to a particular religious group; others do not. Some are very sure about their spiritual direction; others are searching and have a lot of questions. Such differences are not bad. They demonstrate the unique way God reaches out to all of us.

Since religious expressions differ, we must not require everyone to experience God the way that we do. We can not assume that we know another person's spirituality just because we know they are infected/affected by HIV. We must be present as pastoral guides who help people to find their own way on their spiritual journey.

To give helpful, consistent pastoral care, church leaders should educate themselves about HIV/AIDS. They should learn the basic facts about modes of transmission, progression of the infection, prevention, common illnesses and medications, and the psychosocial issues that surround HIV/AIDS. Becoming educated about HIV communicates to people with HIV that you care about them.We cannot heal every wound and solve every problem in one hour.

Pastoral care with someone whose life has been touched by HIV requires time, patience, and the development of a relationship. Our role is to come along side of people and support them, to be present with them. It is not to answer every question and give the solution to every problem. We must be patient as people work through the stages of grief and the myriad of issues that surround HIV.

HIV brings us into contact with issues such as counseling, bio-ethics, living wills, medical treatment, grief, guilt, stress reduction, and nutrition. None of us can adequately deal with all of these issues.

We must realize when we have reached our limits and be willing to refer the client to another person. Church leaders operate within the structure of a religious organization. That does not mean, however, that all they have to offer is that structure. We must add to that framework caring, personal sharing, and love. Unless we become personally involved, we will fail to show God's love to others.