“I lost so many friends to AIDS and nobody my age understands”
People who lived through the worst years of the AIDS epidemic, many of them gay men, may have lost dozens of friends, partners and lovers within a few years. About 700,000 people have died of HIV-related illness in the US since the epidemic began. Some survivors, especially those living with HIV since before effective combination treatment arrived in 1996, describe depression, anger, isolation and trouble planning a future they never expected to have. Tez Anderson named this 'AIDS survivor syndrome', a term from the community that isn't a clinical diagnosis. What matters most is how the losses live on now, and who else carries the memory.
What to check first
It helps to check sleep, mood and drinking, since long-held grief may bring depression or heavy use that deserve attention on their own. For someone living with HIV, physical health and medical care belong in the picture too. It also helps to notice whether any of these losses has ever been spoken about out loud.
What could be going on
AIDS survivor syndrome and multiple loss: Fits if decades later you still carry the losses, with low mood, anger or a sense of a future you never planned for.
Survivor guilt: Check whether you ask why you lived when so many didn't.
Grief (complicated, disenfranchised, anticipatory): Fits if the losses were never mourned fully, because there were too many at once or others didn't count them.
Post-traumatic stress disorder (PTSD): Could be this if images from hospital rooms and funerals still break in, with fear and a wish to avoid reminders.
Telling them apart
AIDS survivor syndrome and multiple loss: Decades on, the person may carry low mood, anger, numbness or a sense of having outlived their own plans. Some expected to die young and never planned a later life. The feelings may grow sharper with age, illness or new losses.
Survivor guilt: The person may ask why they lived when friends, often better or kinder in memory, didn't. Joy may feel disloyal. The guilt may sharpen on anniversaries or when the epidemic is mentioned casually.
Grief (complicated, disenfranchised, anticipatory): The losses may never have been mourned one by one, because they came too fast or because families and the wider world didn't count them. Grief that others don't recognize is sometimes called disenfranchised grief. It may stay raw for decades.
Post-traumatic stress disorder (PTSD): Images from hospital wards, funerals or the bodies of friends may still break in, with fear and a racing heart. The person may avoid films, places or anniversaries. The reactions may be stronger than expected for something so long ago.
Questions to carry
- When did one of them last come to my mind, and what brought them back?
- Who still remembers them with me, and who would I want to tell about them?
Also said as
- long-term hiv survivor feeling alone
- lost all my friends in the aids crisis
- survivor of the aids epidemic
- aids survivor syndrome
- i buried dozens of friends in the 80s
- why did i survive when they didn't