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Introduction
Case managers in the HIV/AIDS Programs, which can usually be found by contacting the local health department or health district, are the primary contact people for services. HIV infected, or affected persons can be linked with medical care, insurance programs, volunteer groups, hospice, and other types of care that may be needed during the course of a person, or family's, time of living with HIV.
The emotional response to learning that one is HIV positive can range from relief to devastation; from acceptance of a chronic illness, to fear of a death sentence.
One thing that characterizes the grief around AIDS is the repetition of deaths that one person may experience. Many people working with or living with AIDS for years have gone to countless funerals and have seen a succession of their friends pass away. This is sometimes termed "chronic grief."
Chronic grief intensifies when one realizes that, before the grieving process for one death is complete, many more people may have died.
People who are experiencing multiple losses may not have enough time to work through the grief process for each person.
The physical weakness and pain can diminish the person's ability to cope with psychological and social stresses.
Infection with HIV can cause distress for those who have HIV, for those who are their caregivers, family, lovers and friends. Grief can manifest itself in physical symptoms, including clinical depression, hypochondria, anxiety, insomnia, and the inability to get pleasure from normal daily activities. Dealing with these issues may lead to self-destructive behaviors, such as alcohol or drug abuse.
The idea of "cumulative" multiple loss or grief saturation is not new. The emotions felt by long-term survivors of HIV and the HIV-negative friends and families are similar to the emotions of the survivors of the Holocaust, survivors of natural disasters (earthquakes, tornadoes, etc.), and to battle fatigue described by soldiers.
Disbelief, numbness, and inability to face facts occur for some. The "fear of the unknown," the onset of infections, swollen lymph nodes, or loss of weight (or unusual weight gain) can be accompanied by fear of developing AIDS, or of getting sicker.
Rejection by family, friends, and co-workers is often experienced. In some cases, guilt develops about the infection, about past behaviors, or about the possibility of having unwittingly infected someone else.
People living with HIV may feel as though their "normal" lives have completely ended, as they must plan detailed medication schedules and medical appointments. The cost of the medications for HIV may result in financial hardship, even if the person has medical coverage.
Sadness, hopelessness, helplessness, withdrawal, and isolation are often present. Anger is common: at the virus, at the effects of the medications, or the failure of some of the medications, at the prospect of illness or death, and at the discrimination that can often be encountered.
Some people with HIV consider suicide, some attempt suicide, and some may kill themselves.
Often feelings experienced by the caregiver will mirror those of the patient, such as a sense of vulnerability and helplessness. Caregivers may experience the same isolation as the person with HIV infection. Finding a support system, including a qualified counselor, can be just as important for the caregiver as for the person who has HIV infection. Support from co-workers can be especially important.
Grief has been described in a variety of forms. It may be best understood as a process that does not involve a straight line. People do not move predictably step-by-step through the various stages of their grieving, but progress at their own speed.
The length of time it takes to move between these stages is determined by the individual, his or her values and cultural norms. In "uncomplicated grief," an individual is able to move through these stages and come out of the grieving process.
"Complicated grief" is described as an exaggeration or distortion of the normal process of grieving. People experiencing multiple losses are more at risk for complications. If an individual has been impacted by multiple deaths, it may be difficult for them to reorganize or "move on" with the process.
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