Ejay's Unexpected Expectations

July 30, 2012

I have been an HIV advocate for several years, so while I pondered participating in this anti-stigma campaign, I didn’t think I would struggle or be surprised by reactions. I was skeptical about receiving a true reaction from strangers, because wearing a T-shirt isn’t anything like living with HIV. Therefore, after I received my HIV+ T-shirt and was trying to figure out the location I would wear it. I began to notice some internal conflict – Can I ethically do this? Is this truly honoring my loved ones who are living with HIV or is this just another exercise for HIV- folks to sympathize for those living with HIV? 

I came to the conclusion that, yes, this is just an exercise afforded to those who are living HIV- and can take off the label of HIV+ any time. At the same time, this exercise is about education and outreach to those who don’t think about HIV being in their community or potentially affecting themselves or their loved ones. I felt torn between feeling humble enough to be afforded to participate in this campaign without significant risk to my personal and professional life, and knowing we Iowans need to confront this epidemic in our back yards while loving and respecting those living with this chronic health condition.

After this internal struggle, I decided to wear my shirt to the Montgomery County Fair in Red Oak, Iowa.  I have friends in this rural town, but I do not live there. I wondered if people would engage with me and ask why I was wearing this T-shirt, or if I would be denied services, be verbally assaulted.  I couldn’t help but imagine this may be what people living with HIV think or feel on a daily basis.  How exhausting.

After several hours at the fair the only observable difference was the wandering eyes of strangers. I made up two categories of stares: The first stare was “I’m going to look at you but don’t look at me.” This is the short glance, where once you make eye contact with the person they quickly look down at the ground or wherever else they could prevent their eyes from making contact with mine. Clearly, I was given the message to not approach these folks – ouch!

The second stare category was “I’m going look at you but I don’t care if you look at me (initially).” This is the blatant stare with eye contact. I found this to be most interesting because it was often a quizzical look rather than a stern or disgusted look. What were they trying to figure out? I was going to ask this of one individual, however, after I started to approach this person I quickly received the “I’m going to look at you but don’t look back at me” stare. This made me feel bad, so I terminated my education mission.

Afterwards, I noticed that in that moment I felt shame for attempting to discuss HIV. What a conundrum: Although I am so-called “afforded this opportunity” to do some great education, the perceived stigma held me back. 

I realize now, as someone who is HIV-,  that I can never imagine what it must be like to disclose an HIV+ status to family, friends or a life partner.