Grief Topic

Grief Reactions Associated with HIV/AIDS Related Death

HIV/AIDS has profoundly challenged society over the past two decades. Issues for HIV positive people are coloured and clouded by many complex issues that complicate the processes of grief, public expressions of mourning and post death healing. In South Australia almost 700 people have been diagnosed with HIV infection. These include men, women and children from 2 to 75 years of age. These people are mothers, fathers, brothers, sisters and grandparents. Women, children, those with medically acquired infection and heterosexual men and women who are HIV positive are more likely to feel stigmatised and isolated. They may fear that their ‘diagnosis’ will cause judgmental behaviour, rejection and abandonment of them and their loved ones. This often means that very few of their family and friends (often no one) will know their true cause of illness and they may live their lives in a ‘conspiracy of silence’. This added isolation and lack of support adds to their emotional and spiritual pain.

Other issues that can complicate grief include:

  • Multiple losses and unresolved past grief issues: some people tell of losing 10 or more friends from their social network from AIDS: when deaths occur so close together, grieving may become an ongoing experience.
  • Sexuality issues, lack of acceptability of same sex partners: parents are sometimes dealt a “double whammy” learning their son’s diagnosis and homosexuality at the same time: ashamed and afraid of rejection from their community, parents may be unable to share their story with anyone. They may grieve in silence “the conspiracy of silence and lies”. Their own fear of AIDS may complicate their grief.
  • Unacknowledged grief of same sex partners, lovers and friends: the surviving lover is in effect losing a spouse, yet the relationship is frequently not recognised as legitimate beyond a small circle of friends. Friends tend to be neglected grievers. Gay men frequently develop a social network that functions as a substitute family – “a family of choice”. Many homosexual communities have developed meaningful social or spiritual rituals for marking life transitions in the context of HIV/AIDS.
  • Remote biological families: either by choice or because of distance, remote families may complicate the care and grief of all involved. Sometimes after a death the biological family may take over and the “family of choice” may be excluded from the funeral and all the arrangements around the death.
  • Substance use: the issues of drug and alcohol use can cloud the grief issues for the dying person as well as for those involved with their care. Adequate pain relief in the end stages of life is important to maintain quality of life for both the dying person and the loved ones involved. Often large doses of pain relieving medications may be required for those with a history of drug use, and family and friends may need to be talked through these issues.
  • Tension and guilt with discordant partners and friends: survivor guilt may be an issue especially for partners who are HIV negative.
  • Social stigma and rejection: rejection can be direct and obvious or subtle and covert. Social stigmas have also been identified as one of the stressors that may influence the increased suicide rate in HIV positive people.
  • Carers: the prognosis, treatment and recurrence of illness are variable. People may be at “death’s door” many times. This up and down course sometimes called the “Lazarus Syndrome”; challenges care providers, both personal and professional. Carers may become depleted by the energy used in anticipatory grief. Giving up the caretaker role is often experienced as a major loss.