Living Positive: Students confront perceptions of HIV

Ryan Murphy 

News Editor

Additional Reporting by Brooke Drumgole

Grant Hudson sat nervously in the Student Health office. The office had called the then-19-year-old and asked him to come in — about what, he didn’t know. He was accompanied by his mother, who happened to be in the area that day.

The last time he had visited the office, he was looking for something to make him feel better. He’d been sick for a couple of weeks and during the appointment, they found he had the first strand of herpes that causes cold sores. The doctor ordered a full test of sexually transmitted infections, including tests for human immunodeficiency virus, or HIV.

Hudson learned he was HIV positive on Dec. 1, 2011, World Aids Day.

HIV was first recorded in 1981 in the United States. Now, more than 1 million people in the country are living with the disease, according to the U.S. Department of Health and Human Services. The Department also estimates that 25 percent of undiagnosed people with HIV don’t know they are infected. According to Richmond City’s Public Health Department, more than 2,400 Richmonders live with HIV.

After the disease’s discovery in 1981, a lack of knowledge about HIV brought a wave of fear and discrimination. The infection was known by a number of names, including ‘gay cancer.’ The virus’ association with other stigmatized groups, like gay men and drug users, made discrimination prevalent, including accounts of people being evicted from their homes on suspicion of having the disease.

Initially, Hudson didn’t want to tell anyone about his diagnosis. Until early January, the only people who knew about it were his mother, a close friend and Hudson’s partner at the time, who was HIV negative.

After a visit to doctors at MCV’s Infectious Disease Clinic, his view started to change.

“Whenever people think of HIV they always have this picture in their head of someone lying in a bed a few years after they get it or if you have medications you’re taking like five, six pills a day, but that’s not the case anymore,” said Hudson, who has been on a one-pill-per-day regimen since early this year. “Both my mom and I were like ‘Wow, okay, this is not what we thought it was going to be.’”

Hudson’s perceptions of the disease he now carries have changed. A few weeks after being diagnosed, Hudson went public about his disease in a video blog on YouTube under the name “positivelypositive3.”

Hudson’s sister, father and almost all of his friends found out through the first video he posted on Jan. 7. He said he received a huge outpouring of support from friends and family who saw the video on Facebook.

Hudson said only one person reacted negatively when Hudson told him about his diagnosis during those first few months. The man, formerly a close friend, initially refused to be involved in one of the videos Hudson was making for fear of being associated with HIV.

Even in an age where facts about any disease are a few keystrokes away, shame and discrimination still make it difficult for some to tell friends and family that they are HIV positive. A research paper published in 2002 entitled “HIV-Related Stigma and Knowledge in the United States: Prevalence and Trends, 1991-1999” found that the number of Americans who believed that people who got AIDS through sex or drug use deserve their illness increased by 40 percent between 1991 and 1997.

Hudson thinks that much of the stigma is caused by a lack of knowledge about the disease. He said his mother’s reaction was based on her knowledge and experience of the disease from years ago, when the diagnosis might as well have been a death sentence.

“All signs are pointing toward finding a cure for this … yet the mindset socially of this disease is still set back in the ’80s,” Hudson said. “People just think that you’re a slut … or they have this image of you as somewhat of a lesser person.”

Laura Nyblade, the director for stigma at the International Center for Research on Women, wrote in a 2006 research paper in Psychology, Health and Medicine that “HIV-related stigma and discrimination was recognized early on in the AIDS epidemic as a key factor in fueling the spread of HIV,” evidence that people’s mindsets can have medical implications and not just emotional and social impacts.

Hudson admits that he was lucky to have family and friends who were supportive while many others dealing with the disease do not. James Smith, a VCU student, found out he had HIV last February and has asked not to be identified by his real name.

Smith has been hesitant to tell friends and family because of the mixed response he has received. An aunt responded proactively and immediately told him he was going to need to eat healthier. However, he said some close friends aren’t equipped to handle the reality of the situation and don’t know how to be supportive.

“I told one friend and he was like ‘Damn, you f—d up,’” Smith said. Smith still hasn’t told his mother, who he said he doesn’t have much of a relationship with. He thinks the subject is too huge for people to keep to themselves. Smith’s view of HIV as a “gossipy topic” has even kept him from seeking counseling, where he fears that those who are more comfortable talking about personal affairs may let slip that he had been seeking counseling for HIV. In an age where the spread of information is often described as viral, Smith’s concerns about disclosure are fueled by what many associate with HIV.

“I feel like people automatically assume you were being promiscuous,” he said. “That is the first thing I get in most conversations.”

Hudson said that when he told people, some would stop talking to him altogether, especially in the dating world.

“It’s always a gamble when you’re telling someone,” Hudson says. “It’s really shown me who my true friends are and who are the people I should keep in my life.”

Now 20 years old and nearing the first anniversary of his diagnosis, Hudson says he has taken it upon himself to stand up and speak out against outdated perceptions.

“This is something I have, it’s not who I am,” Hudson said. “People who have cancer, that’s not who they are … so why should it be different for people with HIV?”

Hudson compared the stigma against the HIV positive community to the gay rights movement and said it will take the work of many people for many years to combat misunderstanding.

“Until the people within that community stand up and take ownership of their community, the stigma that exists with it in the dating world or how people react and how people understand what it’s really like to live with HIV, that’s not going to change,” Hudson said, adding that there are many organizations concerned with fighting the spread of the disease and educating the public about prevention but few that deal with what life with HIV is like.

Chris Richey is the founder and president of The Stigma Project, a group that is trying to fight infection and ignorance by educating those with and without HIV.

The Stigma Project was founded to create what Richey calls an “HIV Neutral world” without judgment or fear of discrimination. He noted that stigma and discrimination seem to be on the rise and are the hardest part of the disease to combat. He said misconceptions held by young Americans persist despite decades of education efforts.

The Stigma Project uses social media to circulate material with slogans like “Know HIV=No HIV” and “Kiss Me, I’m Positive,” which are often accompanied by facts and figures designed to dispel misconceptions. Richey started the organization with Scott McPherson in February 2012 after witnessing the stigma firsthand when he was diagnosed with HIV.

“The hardest part about living with HIV is overcoming stigma,” Richey said. “My health regimen is easy, it’s the stigma that is difficult.”

Despite dealing with the social impacts and health complications of HIV, Hudson said that in a strange way, his diagnosis has changed his life for the better. When he got to VCU, he was unsure of what he wanted to do and considered becoming a political activist and a historian.

Now, Hudson wants to attend seminary after graduation and become a priest with the Episcopal Church. He had gone back and forth on the choice after seeing how his mother, who is a priest in the Lutheran faith and is also gay, was treated by the church community. He felt that his diagnosis and what he calls the “ironic” timing of discovering his condition on World Aids Day have been instrumental in helping him decide to move into the clergy.

“Because I was open to listening to what God wanted me to do and where to go, that’s what turned into a positive experience for me,” Hudson said.

This is the first in a three-part series on HIV at VCU. Read part two here and part three here