Most states, including Florida, have systems to link people with HIV infection and AIDS to care and support services. Case managers in the HIV/AIDS programs are the primary contact people for services. They can usually be found by contacting the local health department or health district. HIV-infected or -affected people can be linked with medical care, insurance programs, volunteer groups, hospice, and other types of care and support services that may be needed during the course of a person, or family’s, time of living with HIV.
People with HIV and their families and friends face a multitude of difficult realities:
- Even with the advent of antiretroviral (ARV) drugs, people with AIDS still die prematurely.
- Men who have sex with men and injecting drug users—who may already be stigmatized and subjected to social and job-related discrimination—may encounter even more societal pressure and stress with a diagnosis of HIV or AIDS.
- Ninety percent of all adults with AIDS are in the prime of life and may not be prepared to deal with death and dying.
- The infections and malignancies that accompany AIDS—along with certain medications—can diminish and disfigure the body.
- People who are living with HIV face the need to practice “safer sex” and take medications for the remainder of their lives.
One thing that characterizes the grief around AIDS is the repetition of deaths among peers 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 an individual realizes that before the grieving process for one death is complete many more people may have died.
The idea of cumulative multiple loss or grief saturation is not new. The emotions felt by long-term survivors of HIV and their HIV-negative friends and families are similar to the emotions of the survivors of the Holocaust, survivors of natural disasters (earthquakes, tornados), and to the battle fatigue (PTSD) described by soldiers.
Infection with HIV causes distress for those who have HIV and for 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.
Disbelief, numbness, and inability to face facts occur for some. The fear of the unknown, the onset of infections, swollen lymph nodes, loss of weight (or unusual weight gain) can be accompanied by fear of developing AIDS, or of getting sicker. People infected with HIV/AIDS are often rejected by family, friends, or co-workers. In some cases, guilt develops about the disease, 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 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 often encountered. Some people with HIV consider suicide or attempt suicide, and some may actually kill themselves. Call the crisis hotline listed in your phone book, or call the national suicide hotline at 800 784-2433 or 800 273-8255.
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 disease. Support from co-workers can be especially important. Caregivers may find it necessary to acknowledge their own experiences and feelings when dealing with all aspects of this disease. Good self-care for the caregiver is important and involves addressing issues specific to caregiving.