HIV-AIDS’ Lessons for Mourning Loved Ones Lost to COVID-19

As we begin to focus on the psychological impact of all the illness and death in the COVID-19 pandemic, there’s much we can learn from the still-ongoing HIV-AIDS pandemic whose 40th anniversary we marked in June.

In both public health crises, thousands of people—survivors—experienced disenfranchised grief as an infectious, lethal virus cut them off from something that virtually all humans take for granted: That we can be present for our loved ones at the hour of their most profound need and aloneness.

The term “disenfranchised grief” was used to describe the kind of experience that thousands of gay men endured in the frightening early years of the HIV-AIDS pandemic, before effective HIV treatment became available beginning in 1996. It means being deprived of the acceptance, rituals and customs—even the title “widow” or “widower”—that connote social support for the bereaved and elicit others’ acknowledgement of the loss and condolences for the survivor’s bereavement.

On top of the toll COVID-19 has taken on millions of people’s physical health, the pandemic has inflicted untold psychic suffering as lockdowns, social distancing, and (early on) the unknown prevented family and friends from seeing their loved ones in their final days and hours.

Traditional crowd-gathering funerals and mourning customs were not allowed. That was difficult enough. But set against the backdrop of people across the globe wearing masks and burying far too many dead, depression and despair became too-familiar emotions for so many of us.

We (the authors) connected 35 years ago, when John-Manuel was writing his first feature article on the HIV-AIDS pandemic for Washington, DC’s City Paper. “The Survivors” focused on how gay men—hardest hit by HIV-AIDS in the United States—were coping with their individual losses of friends and partners, and doing their best to navigate a world that seemed to be melting into a pool of tears.

Sandy at the time was co-leading, with William Fletcher, LCSW, the first-ever bereavement support group, through AIDS Project Los Angeles (APLA), for gay men affected by HIV-AIDS loss. The pair by then had already spent years specializing in the emotional effects of illness on patients and their significant others.

Writing in the September 1986 issue of the Journal of Psychosocial Oncology, they reported that because there was no tradition for mourning a same-sex partner, gay men who lost partners to HIV-AIDS were multiply traumatized: By being associated with the stigmatized, deadly disease itself; the lack of social recognition for their relationship; and by being cut off from traditional avenues for mourning significant human losses.

To get a picture of what it was like then, we only have to remember the searing and shocking images of family members in pain and horror as they were kept away from their loved one’s final minutes or hours as they succumbed to COVID-19. It’s astonishing to consider how devastating it must be to watch a loved one’s final breaths via FaceTime, Zoom, or through a window.

As we move forward, four lessons from the HIV-AIDS pandemic can be helpful in adjusting to our individual and multiple COVID-19 losses:

• Create your own rituals to honor your loved one and support your own grief.

• Stick to facts without internalizing others’ judgments or opinions about COVID-19.

• Accept that there are things in life beyond our control, and no one is to blame for being cut off from a loved one at the time of their death.

• Decide for yourself what your loved one’s death and your loss mean for you. Try not to allow others to define how you should grieve.

Grief and loss are among life’s hardest experiences for everyone. The COVID-19 pandemic, like the HIV-AIDS pandemic, unleashed profound grief and loss in the world, and caused tremendous pain and sorrow.

Coronavirus Disease 2019 Essential Reads

Update on COVID-19 and How It Changes the Brain

How Political Partisanship Can Be Deadly

Slowly, surely, we can begin to process what we have been through. We will be able to get on with our lives. It’s difficult, but there are things we can do—and not do—that will help support us as we make our wobbly way forward.

*******************

I co-authored this piece with Sandra Jacoby Klein, LMFT, author of Heavenly Hurts: Surviving AIDS-Related Deaths and Losses. She lives in Santa Monica, California.