“No One Would Touch Her When She Was Diagnosed”

Powerful new drugs and massive public-health campaigns have changed the way most Americans view people with HIV and AIDS, but that doesn't mean those with this condition don't still deal with stigma, fear, and loss. More than 1.2 million people in the U.S. are living with HIV, and almost 1 in 8 don't know that they carry the virus. More than 650,000 people have died of AIDS-related causes since the disease first emerged in the late 1970s. There are young men and women who grew up without their mothers and fathers because of the syndrome, sometimes without even realizing they weren't alone.

Many of those young people have discovered one another online. When Whitney Joiner and Alysia Abbott founded the Recollectors in 2014, their goal was to create a space for people of all ages who have had a parent or parents who succumbed to AIDS (both women had fathers who died in 1992). On Wednesday, the Recollectors are partnering with StoryCorps for an evening event in New York City in honor of World AIDS Day and to honor the memories of loved ones lost.

Refinery29 spoke to four women who each lost at least one parent to AIDS. Yet despite growing up in different parts of the country, with different relationships to their parents' illnesses, all four shared the same sadness at not being able to forge adult relationships with deceased parents, and the same sense of relief that there is a community for people like them where, as one person put it, "you don’t have to manage the reactions of other people to your own tragedy." All four women recounted powerful memories and stories with us.