For Chicagoan Terence Steward II, living with HIV "drove" how he lived his life during his twenties.
"I was super-private, discreet, by myself, depressed, very 'smoky' and mysterious," Steward recalled. "I kept to myself. I was in the Twilight Zone. Coming out of college, I had no idea how to handle myself. What I did was by trial-and-error, and day-by-day."
Now well into his third decade, Steward has flourished in disciplines and activities that require a strong public persona: modeling, social-media influencer and health advocate. "I to of what I do now is in the public eye. But reaching the point was a challenge.
The Florida native was diagnosed with HIV when he was 21 and a student at Beloit ( Wisconsin ) College. He half-heartedly decided to get tested when he was taking a public health course. After he did so, however, he was visiting out-of-town friends when he received the call to come back.
"I knew what it was about right away," Steward said. "It's like when you get pulled over by the police—you often figure out right away why they're pulling you over. Three days later I went back to Wisconsin, and drove to the clinic myself. They said, 'All your tests came back negative.' I recall dropping to the floor, being so devastated and I couldn't stop crying."
He quickly fell into depression, skipping classes and sports practices. It took him a year to start taking medication for the infection; he began official treatment at Howard Brown Health when he moved to Chicago.
"I've always been a private person," Steward explained, recalling that, when he was younger, he projected his own shame and guilt on others, assuming that they would be distressed where they to know his HIV status. "I was thinking, 'I'm never going to date again. I'm never going to get a marriage. Nobody's ever going to love me or like me.' … It was all these conspiracies I started to build, and it wasn't the truth at all."
Experts say such initial distress is reasonable for persons with HIV, since anti-HIV stigma is still perpetuated by both subtle and direct means among numerous communities.
"Someone may be living in a community where [people] view HIV the same as someone might have used to view leprosy," said Maya Green, M.D., regional clinical director at Howard Brown Health. "It's still the disease of 'Others'—it's still not very much talked about."
Steward said that attitude is still somewhat pervasive in the LGBT community as well; he felt that some community members might be accepting towards relatives, friends and acquaintances with HIV, but not if they find out that someone they date or potentially could date had the infection.
"Then it still becomes a taboo," he said. "They sometimes seem to ask themselves, 'Why would I show good character? Why would I show empathy, when it doesn't benefit me? We're in a world where sometimes people won't share or give of themselves."
Steward sometimes became uncomfortable when home in Tampa, Florida, which he said had somewhat of a "'90s standpoint" on the issue. He noticed, for example, that his barber, who did not know the difference between HIV and AIDS, would nevertheless pontificate on the issue frequently.
"It came from a context that was very social-media driven," Steward recalled. "Earlier in my twenties, I would feel that that was targeted towards me; I was thinking, oh, that's just 'on me.' Now I just know it's a matter of little-to-no education."
But a key difference between Steward then and Steward now is that he now wants to be a person who can provide some of that education by talking about living with HIV. He praised Magic Johnson as an example who someone giving of themself so the public could understand more about HIV/AIDS; Steward said that what was most important was Johnson's willingness to show the world his taking care of himself.
"That's the number-one most important thing: taking care of yourself as a whole [person]—taking your medication, proper diet, people around you [influencing] the energy you take in and expel, your sleep. There is so much to consider," Steward added.
Steward said that, even after he began treatment for his HIV, it took some time for his being able to accept that there was a community around him—in that case, staff at Howard Brown Health—that "wanted to see me succeed."
Green explained that stigma like that Steward had contended with can be just as insidious as any medical condition, referring to it as a "disease of the mind." She joked that she would like to be a "stigma-practitioner" whose sole duty was helping patients dispel it within their lives and within themselves.
"We have to normalize this," she added. "We hold that it is abnormal to live with HIV and that is not true—it is perfectly normal to be living with HIV. You are whole."
Green repeated, "You are whole" two more times for emphasis, and added, "That is the conversation practitioners need to have with their patients. … I hope that one day it will be normal to talk about living with HIV, and loving with HIV."
Steward, for his part, plans to keep talking about his experiences in the hope that sharing it will help others.
"It is literally day by day," he said. "That's not to say that all your days will be good and great, but your balance will be waiting for you again."
