AIDS survivor syndrome and multiple loss

What drives it

The term gives words to a grief with no single funeral and no single anniversary, carried by people whose whole circle may be gone, and to an aging some survivors say they never expected to reach. Its weakness is that it gathers many reactions under one name. The cohort figures suggest most survivors are coping, with a smaller group in real difficulty, as the researcher who presented them put it.

How it shows

Work

Reaching retirement with no plan, because retirement once seemed out of reach. Losing patience with younger colleagues who know AIDS only as history. Being the only one at a World AIDS Day event at work who remembers.

Relationships

An address book full of crossed-out names. Few friends left from before the mid-1990s. Distance from younger gay men who did not live through it. Holding back from new friends for fear of losing them too.

Self

Notice which dates, songs or streets bring the dead back. Notice whether you have grieved them as a group, one by one, or not at all.

What tells it apart

Post-traumatic stress disorder (PTSD): PTSD centers on a terrifying event replayed in nightmares and flashbacks, with constant alertness. Many survivors describe years of repeated loss more than one event, and PTSD may be the closer fit when specific scenes intrude and nightmares are frequent.

Prolonged grief disorder (ICD-11, DSM-5-TR): Prolonged grief follows a death and stays intense almost every day. Multiple loss can look like it, but the longing may be spread across a whole circle and come in waves set off by dates and places.

Survivor guilt: Survivor guilt is the sense that one should have died instead, or done more. It is one part of what survivors report, and when guilt leads, it may be the main issue more than the wider syndrome.

A test

Ask the person to count, roughly, how many close people they lost in the epidemic years, and which of those losses they were able to mourn at the time. A high count with few chances to grieve, and distress that rose with aging or anniversaries, may point to multiple loss never fully mourned, which a clinician who knows HIV history can help sort from depression or PTSD.

How strong the research is

weak. AIDS survivor syndrome is a name from survivors themselves and has not been formally defined or tested as a syndrome. Older research on multiple loss is mixed. In 746 gay men in New York interviewed each year from 1985 to 1991 (Martin and Dean, 1993), AIDS deaths in a man’s circle predicted more psychological distress every year, with the effects shrinking over time, and men who were both bereaved and HIV positive or ill reported the most distress. In 207 gay men interviewed in New York in 1988 and 1989 (Neugebauer and colleagues, American Journal of Psychiatry, 1992), the number of lovers and close friends lost did not predict depression, though preoccupation with and searching for the dead rose with more losses. In 93 gay men in San Francisco who had each lost at least three people (Cherney and Verhey, 1996), the number of losses did not track the intensity of grief. Data from the Multicenter AIDS Cohort Study, presented at a community forum and reported by the San Francisco AIDS Foundation, found that 27% of the men had lost more than ten close people and 35% said they still grieve, while half had none of the symptoms tested and HIV-negative men seemed as affected as HIV-positive men.

Where it comes from

Tez Anderson, a long-term survivor in San Francisco, who named it after seeing a television report on post-traumatic stress in war veterans. He and Matt Sharp started the group Let’s Kick ASS in 2012. Earlier research on AIDS bereavement among gay men: John Martin and colleagues, New York, from 1985

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