July 10, 2003 seemed like just another day at work for Sam,* a College junior. He was at his on-campus summer job updating databases when his cell phone rang. It was his ex-boyfriend, who said he had some news for him.
"He called and said, `We have to talk,' and I had that gut reaction, that `uh-oh,'" Sam recalls. "I had an idea what it was going to be, and I made him tell me right then on the phone."
Sam's first instinct was right. His ex-boyfriend - with whom he had had unprotected sex on a regular basis - said he had tested positive for Human Immunodeficiency Virus during recent routine blood work, and suggested Sam get tested himself.
"A million things flooded through my head," Sam says. "I thought, `I have to tell my family, I have to tell my doctor, I have to change my lifestyle, I have to tell my friends, and how is it going to affect my life and my goals?'"
"That was pretty much the first and only time I cried about it and was upset."
Even though Sam says he was almost certain of the results, he still got a free, anonymous HIV test at Philadelphia Community Hospital. Although the doctor told him the results would be available soon, due to lab complications, Sam ended up waiting several weeks. "I was pretty sure at that point that it was going to come back positive," Sam says. "That's the worst time of it, though, just waiting and wondering." When his test results were finally ready, the hospital required Sam to go in and hear the news in person from a crisis counselor. "I was prepared for him to come back and say, 'You're positive.' It almost put me at ease knowing for sure," Sam says. But even though Sam was expecting the worst -- that he had tested positive for HIV -- he says he still saw many of his goals come crashing down around him when the counselor told him of his diagnosis. "I was like 'Oh my gosh, I want to go to law school, I want to do all this stuff,'" he recalls, adding that he even questioned whether it was worthwhile to stay in school. Since then, though, Sam has been assigned a doctor and a social worker and has taken a more optimistic view of his situation. "I tend to take an attitude that it's really not as bad as it used to be," he says. "They treat it more as a chronic illness rather than a terminal illness. It's taken on a different perspective in the medical profession itself." But Sam's worries still weren't over. He then faced the daunting task of informing his sexual partners about his diagnosis -- even though he'd had protected sex with both of them. "At first they were scared ... because even though we were safe, you can never be totally sure," Sam says. "After that first reaction, though, they were very supportive. I gave them some places to get tested, and we are still in contact." It is, in part, the support he has received from friends like these that has helped Sam cope with living with HIV. "Everyone's been amazingly supportive -- more than I could have ever imagined and asked for," he says. "They wanted to know information ... and how they could help." "I haven't faced any negative reaction, which I guess is good, because it's helped me deal with it myself," Sam adds. A friend and teammate of Sam's explains that news of his illness was difficult to process. "He didn't really tell me outright," she says. "He just kind of alluded to it. I didn't want to go tell anyone .... The more people you tell, the more real it is." Still, as time has passed, she has grown more accustomed to life with a friend who has HIV. "I was kind of silent for quite a while until I realized he had told a few other people, and then I asked him if I could tell my boyfriend .... It became very real. Now we even joke about it .... It's better if it's a light subject." But one group of people in Sam's life isn't supporting him -- at least not yet. His family remains conspicuously absent from his support network. "My family is pretty much the only people that don't know," Sam says. "I think they'll take it harder than I did. My plan is to tell them early next scholastic year, like September or October." Sam says his hesitance stems from his parents' lukewarm reception to his coming out two years ago. "They were like, 'You know, if we thought you were gay, it would be okay, but we really don't. Just give it a couple years and you'll probably grow out of it,'" he says. "It's kind of been at that point since. When I go home ... I don't want to talk about that." His friend understands how difficult telling his parents will be. "His parents are really overprotective, and it must be the hardest thing to come out to your parents, let alone tell them that you have HIV," she says. "When he does tell his parents ... that may be the hardest thing he's ever had to deal with." Sam's mother, in particular, was worried about his being gay specifically because of the strong association between HIV and the gay community. In fact, in the United States, an estimated 60% of HIV infections in men are a result of homosexual sex with an infected partner, according to a report from the National Institute of Allergy and Infectious Diseases. "My mom's biggest fear is that I'm going to get infected," Sam says, noting the irony of his current situation. But while telling his family will be difficult, Sam says that hiding his diagnosis from them has been equally trying -- both financially and emotionally. "I've been getting tests done on grants and things like that, because I can't submit it to my medical insurance -- because it's not my insurance, it's my mom's," he says. "It puts me in an awkward position at the doctor when ... we can't do more tests because we can't put it on [my] insurance and there's not a grant for it." Keeping his diagnosis a secret from his family has not been hard -- he just never mentions it -- but living with his decision to do so has. "I hate knowing that I know and they don't," Sam says. "It's hard to go home and be happy and whatever with my family over Christmas and then know all along that there's something that I know that's going to hurt them tremendously, and I can't tell them." "That's probably the biggest stress," he says. "That's what makes me upset the most." But aside from the everyday concerns he faces regarding his family, Sam's life has changed very little since his diagnosis. He is not currently on any medications and still participates in the extra-curricular activities he was involved in before his diagnosis. And, so far, he has not received any recommendations to slow down. A double major in Economics and International Relations, Sam holds an on-campus job, participates in varsity athletics and belongs to a Greek organization. This long list of activities -- coupled with frequent trips to the doctor -- keeps Sam out of the house from early in the morning until late at night. Some of the aspects of Sam's life have actually improved since his diagnosis. Sam says he and his ex's diagnoses are what brought them back together, after having been broken up for several months. "It forced us to talk more," he says. "Just by talking we ended up dealing with a lot of the problems we had experienced in our relationship. It forced us to communicate, which is something that was a problem in our relationship." In addition to reuniting Sam and his boyfriend -- who started dating again this fall and are still together -- the seriousness of his illness has also forced Sam to analyze his goals and his future. "It's really helped me know who I am as a person," he says. "Over the summer, a lot of it was realizing what I wanted to do with my life and putting things in perspective and prioritizing. To give my all and to have an idea of where I want to go, and to work towards that goal became a lot more important and a lot more concrete." When he graduates from Penn next year, Sam says he hopes to go on to law school and eventually pursue a job working for the State Department -- which, he says, may be one of many places he'll face discrimination because of his illness and lifestyle. "I feel like at Penn we're very open and accepting and welcoming about everything," he says. "But I think in the real world, it's not as perfect of a bubble as it is here, so I feel I might encounter some of that ignorance turned towards misunderstanding of me as a person and not of just the condition." Still, Sam says he feels equipped to handle whatever discrimination he might encounter. "I think part of it is just being open about it from the get-go. I think that I'm learning to do that now," he says. "As long as I'm knowledgeable about it and I can help people understand, it'll be ok. But ... I have to keep up my end of the deal and be educated about it and aware and open and honest." But even though he is optimistic, Sam says he must always keep the future in mind. After all, according to the Centers for Disease Control, the majority of people infected with HIV develop AIDS within eight to 11 years of becoming infected. "It's hard," Sam says. "I want to give back but ... how long do I have to give back, or how long do I have to make my mark? In that respect, I'm definitely pushed. I know my goals, and I'm marching toward them more clearly." For now, one of Sam's goals has been educating his fellow students about HIV and the importance of regular HIV testing. He recently spoke about his situation at a Penn ALLIES meeting -- a group that Sam explains is composed primarily of straight "allies" of Penn's Lesbian, Gay, Bisexual and Transgender community who strive to combat issues of homophobia and heterosexism -- and is currently working with a friend from Penn's AIDS awareness group, PennVisions, to arrange a day of free HIV testing on campus. "I don't want to be an advocate or a poster boy or anything like that, but I feel like it helps to put a face to things," Sam says. "As much as I don't want to do that, if it means one person gets tested, then it's worth it to me." And though Sam is now working to keep others safe, he says he still regrets having unprotected sex. "I had gotten tested, and he had no reason to believe that he was positive, and we were monogamous," Sam explains of the couple's mutual decision. "Still, it's such a simple thing that could have been avoided so much. But I can't live regretting that." "It happened, and now I have to deal with it."
*Sam's name has been changed. The photos in this article do not depict the actual person.
