He's Lived with HIV for 36 Years. And He's Determined to Squash Its Stigma.
Chris Costas of Lewes is working to create a community of hope for other beach-area residents living with HIV/AIDS.
Chris Costas, 51, has lived with HIV since he was 15. He often feels lonely, but he has always tried to look forward.//Photo by Maria DeForrest
As a teen, Chris Costas lived what he describes as an “Ozzie and Harriet” life. His parents loved him greatly. He excelled at the private schools he attended in and around Washington, D.C. He spent summers traveling and enjoying family vacations on Hilton Head Island.
One afternoon, Costas experienced some trouble swallowing. His pediatrician ordered a throat culture and some blood tests. Then Costas met with other physicians at Georgetown University Hospital. “And that’s when they diagnosed me.”
By that day, Jan. 16, 1981, medical science hadn’t yet settled on a name for the disease that afflicted Costas. They called it GRID—gay related immune deficiency—though it would come to be known as human immunodeficiency virus, the culprit behind AIDS.
Costas was only the third person diagnosed with the disease at Georgetown. Now 51, he has lived with HIV since he was 15. He often feels lonely, but he has always tried to look forward.
“If you have HIV you are branded, and people just back away, and they won’t have anything to do with you,” Costas says. “My goal is that I want to encourage people.” So he is working to create a community of hope for other beach-area residents living with HIV/AIDS.
That may be an uphill battle. The success of similar support groups has proven difficult to sustain in Delaware. Such organizations—self-managed, self-funded—have come and gone over the years, according to Scott MacKenzie of the Delaware HIV Consortium.
Despite the challenges, Costas hopes to create something that lasts.
Though HIV has existed in the United States since the 1970s, 1981 was early in the AIDS saga. When Costas was diagnosed, there were 270 reported cases of severe immune deficiency among gay men. By the end of 1981, more than a third of them had died.
Costas knows now how he contracted HIV—he was sexually assaulted when he was 11 years old—but he had only “somewhat” comprehended what the doctors had told him. “I had some concept. I had something going on inside of me,” he says. “But you know what? They had more questions about it themselves than they had answers for me.” The doctors told his parents to take Costas home, take him out of school and “be prepared that he’s going to probably die within the next six to eight months.”
“The immediate thought was, How are we going to get Christopher through this?” says his father, Dino Costas. “We never thought he was going to die. We never accepted he was terminally ill, because the doctors do what they can, but they’re not the final decision for life and death events.”
The younger Costas didn’t accept the inevitability of death, either, so he rebelled. Through older gay men he often encountered at his doctors’ offices he heard stories of Studio 54, the Manhattan nightclub known for sex, drugs and disco during its heyday, and the Saint, a famous gay nightclub in the East Village, so he made them his hangouts. “When my other schoolmates were getting ready for prom, I was thinking about what I would wear on my next trip to New York and what club I would dance at that weekend,” Costas says.
He eventually stopped the partying. He went on to attend Philadelphia College of the Arts, then started an interior design company with a partner. His work made the cover of the September-October 1994 issue of Southern Accents magazine, a now-defunct Time Inc. publication. The 12-page feature story, “Log Rhythms,” showed his work on a restored 18th-century Virginia log house known as Squirrel Hill.
Career successes kept coming. He moved to Washington, D.C., and started his own company, Christopher Costas Interiors, which designed the America’s Cup Ball in Georgetown Park, and he helped to raise funds to find a cure for HIV. “I did a lot of things,” he says. “I kept myself busy.” And he felt healthy.
“I’d stopped watching the news because I’d hear about people dying, and here I was alive and totally healthy and nothing was wrong with me,” he says. “It was the strangest thing in the world to be living in this cocoon where I was totally healthy, nothing was going wrong with me. My health was completely fine. I mean, I wouldn’t even catch a cold.”
But 12 years after the initial diagnosis, HIV would take a toll. “All of a sudden when I was 27 years old, I had 38 lesions of toxoplasmosis on my brain, and I got sick,” he says. “Real sick.”
Costas was hospitalized for a month, but he wasn’t out of the woods. Over the next few years, his gallbladder was removed and a bile duct had to be reconnected. “You name it, I had it done to me,” he says. “I’ve had every imaginable infection happen to me.” Four years ago, one of the HIV drugs caused his kidneys to fail. Costas received dialysis eight hours a day, four days a week for two years. “That’s pretty horrific,” he says.
Fifteen years ago, Costas moved to Lewes to be with his parents. His health problems have continued, but Costas credits his recoveries to his faith. “There are so many miracles that have happened in my life. There’s no way I can’t acknowledge that those miracles happened in my life and that there is a God in my life,” he says. “I just know it.”
But Costas still feels at times like he lives in a cocoon. He believes people avoid him because of his HIV. “Living here in Lewes and Rehoboth having HIV is interesting because I know there are a lot of other people here who have this virus that have retired here or live here, but are so terrified about coming out having the virus,” he says. “For some reason, there is still this heaviness, and there’s this stigma about coming out having the HIV virus.”
“Chris has been through something that’s prevalent in society because of HIV: rejection,” Dino Costas says. “Unfortunately, people still think HIV people are contagious.”
Chris Costas//Photo by Maria DeForrest
More than 1,600 Delawareans were living with HIV as of September, according to the Delaware HIV Consortium. More than 4,500 are living with AIDS.
“Stigma remains a barrier for people with HIV in Delaware, as well as throughout the country,” MacKenzie says. “This stigma prevents people from accessing testing, having open discussions about prevention and treatment, and accessing HIV care and medication.”
Despite hosting a pool party and starting a Facebook page, Costas’ efforts to organize a support group have not met with great success. Only a few people, for example, are active in the Facebook group. “It doesn’t seem like anyone wants to attach their name or their face to the fact that they’re HIV positive,” he says. MacKenzie points out that those with HIV still face discrimination in housing, healthcare and employment, and suffer other injustices.
But Costas says he doesn’t want to single anyone out—he wants to offer support.
His parents, both ministers, help Costas and others who have been cast aside because of the virus.
“Many people when they hear their sons or daughters have HIV throw them out because it’s usually combined with the gay lifestyle,” Dino Costas says. “Everyone wants love, acceptance and hope, and that’s what Chris wants to offer people with HIV and AIDS living in Delaware’s beach area.”
For now, Costas works at staying healthy. His day starts with a cocktail of 12 pills. His evening ends with 15 more. He sees his infectious disease doctor in Wilmington every three months and his nephrologist every six months. Though he is unable to maintain his weight, he does have a healthy appetite—a benefit he believes comes from his parents’ support. “We don’t shoot our wounded, we nurse them back to health,” Dino Costas says.
Costas spends his days taking care of the house he shares with his parents and his dog Brock, working in the garden, walking on the beach and, when weather permits, taking photographs. His latest works can be seen on his Facebook page.
Costas is unable to work. He receives $745 a month in disability benefits, but he refuses to let his circumstances stop him.
“I want to encourage people,” he says. “I know how you can get down when you don’t feel good. You can feel alone and on an island. But you don’t have to feel that way,” he says. “When you are sick, when you are down and you’re in the hospital and feeling so sick, and you’re feeling so, so awful, you just call out to God, and you say, Please, just get me through this, and He does. I want to be able to share that [hope] with people.”