Grief in HIV/AIDS related death

Human Immunodeficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS) have challenged society over the past four decades. Issues for HIV positive people are complex and may complicate the processes of grief, public expressions of mourning and post death healing.

Attitudes To People Who Are HIV Positive

Community attitudes have changed, with much greater acceptance of homosexuality, and more education about HIV. The outlook for someone with a diagnosis of HIV has also changed considerably since the beginning of the epidemic in the 1980’s when almost all infected people died from AIDS-defining illnesses which occur secondary to the chronic effect of untreated HIV on the body’s ability to fight infections.

With anti-retroviral drugs, there is now a low rate of progression from HIV to AIDS and HIV-positive people are no longer primarily dying of AIDS-defining illnesses, but are much more likely to succumb to conditions similar to HIV-negative people, such as heart disease, strokes and lung cancer.

Issues That Can Complicate Grief In An HIV Positive Or AIDS Related Death

Social stigma and rejection: There is still a risk that people 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 (perhaps no one) will know the true cause of their 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. Social stigmas associated with both homosexuality and HIV have been identified as one of the stressors that may influence the increased suicide rate in HIV positive people.

Multiple losses and unresolved past grief issues: some people tell of losing 10 or more friends from their social network from AIDS, particularly in the earlier days of the epidemic: when deaths occurred so close together, grieving may become an ongoing experience.

The nature of AIDS: HIV is an infectious disease and so there are particular requirements in hospitals which can be distressing. Also the nature of the illness itself may cause distress.

Parental rejection: some parents may be unaware of their child’s sexuality and can sometimes learn of this at the same time as hearing a diagnosis of their child’s HIV positivity. In some cases, they may be ashamed and afraid of rejection from the community and feel they are unable to share their story with anyone. They may grieve in silence and their own fear of AIDS may complicate their grief.

Survivor guilt: survivor guilt may be an issue especially for partners who are HIV negative.

Unacknowledged grief of same sex partners, lovers and friends: if the relationship has not been recognised as legitimate beyond a small circle of friends, the grief of the surviving partner may not be acknowledged. The person may have formed a social group that functions as a substitute family- a “family of choice”. Many homosexual communities have developed meaningful social or spiritual rituals for making life transitions in the context of HIV/AIDS. With the legalising for same-sex marriage and society’s wider acceptance of homosexuality, this may become a thing of the past.

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 arrangements around the death.

Substance abuse: 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.

Loss of future: grief surrounding a lost sense of future is common. And for those who have survived but were told they would die, there is the grief of having not pursued their interests due to perception of a shortened life-expectancy ‘I never planned for the future, as I didn’t think I had one‘. This can lead to anger and survivor guilt.

Issues For Carers

The prognosis, treatment and recurrence of HIV and AIDS-related illnesses vary. People may be at “death’s door” many times. This up and down course challenges both professional and non-professional care providers.

Carers who may often be partners as well, may become depleted by the energy used in anticipatory grief. On the other hand, giving up the carer role is often experienced as a major loss of identity.

Other Resources

Positive Life SA Inc
Beyond Blue


Page last updated: 17 September, 2019