So it's been a couple of weeks since I posted my last blog "No Shame For Being HIV+", I thought I would write a follow up to share the reaction I received from it. To be honest, it took a large shot of courage to send that article off to be posted. I didn't know how it would affect the people around me. Would I offend someone, would they feel pressed to say something? I believe it could have been a really ugly situation……..if certain people chimed in on it.
My story went up on February 11th, My name was there, my photo was there. I was up early to see it go public. I waited. I kept refreshing the page to see if anyone was reading it. I saw eight people, a half hour later it was up to 21, people were reading it. By noon we made it the feature story on the PositiveLite.com page. A bit later an email comes in; AIDS New Brunswick wants to feature it on their website. By 2 o'clock the views had doubled.
I go back to my facebook page, one "Like", no ''Shares". At 1:30pm I had to go offline to attend a Monday afternoon get together at the ASO. When I get there, no one is aware of it being up online. I talked about it, told them how it was going viral. I know that not everyone in my circle who is HIV+ is out there doing what I’m doing and/or follow everything that happens everyday. One person still has dial up service so she can't access the site to read it. Two minutes later, the conversation died off and we’re discussing the sandwiches and coconut cookies.
Back to the reaction to my story, I wish I could quote some of the comments I got on it, but there was basically only a couple from non-activist/advocates. I mentioned in the first part that the only people who forward or share HIV information are fellow advocates. So that’s been a rather uneventful two weeks with the others around me.
When I changed my Facebook and twitter to do advocacy work, I emailed everyone who I thought should know what I was up to. Some didn’t know I was gay, let alone HIV+. I wanted them to choose whether they wanted to be subjected to all my HIV stuff. For the most part, I got a positive reaction: we were still going to be friends, they were glad I told them and they wished me the best in whatever I do.
Maybe a year later, they aren’t even saying “hi” anymore. Maybe some of them gave up on social media all ltogether; who knows? Not me. So, slowly I started to delete them from my facebook. I respect their beliefs, I would never come out and ask for them to share. I have my privacy settings so that only people I accept as friends see what I am sharing so taking them off my contact list works for all of us.
The other day, I’m sitting online, doing all my social media stuff, trying to keep up with emails that were coming in, and out of the blue, I go back to my facebook page and refresh it. I scroll through most of it but then my eye catches a long post by one of my contacts, a very active advocate. In what he had written was this snipit:
“I logged into facebook to find a message from a friend, who told me that they were 'de-friending' me due to the fact 'I speak too much on the topic of aids”. (He responded to the guy that the name is AIDS.)
Now I’ve never received anything like this but it is something I believe many of the people around me might be thinking but are unable to tell me. It is exactly why I wrote the first part of this. I seem to always look to family members or friends to get an idea of how I should answer questions their family or acquaintances might ask me. Truthfully, I get the feeling they would prefer I not say anything because those persons don’t know anything, because they haven’t told them. Sometimes they even answer the questions with “he’s semi-retired” or “he takes it easy now”. I think they call this “enabling”, because I am concerned about their privacy and comfort level.
I am finding and sharing current information about HIV/AIDS, I’m trying to stop this fucking 1980s thinking that so many people still believe. I don’t get paid to do any of this. If I were, I don’t think I could do it with the same passion. Yeah, I’m passionate about what I am doing. If I hear I reached one person a day or a week, then I know I have done a good thing and that is my reward.
I am writing about what it's like to actually live with HIV after thinking I would never have to. I had all the information but I still got HIV. It may not have traumatized me like it does many others but it’s something I have to live with the rest of my life and I have to do it in an informed and healthy way. It isn’t a death sentence anymore but it is a life sentence. You do live with HIV and you can live a very long healthy life.
When I read blog after blog from young people in their twenties, writing about being diagnosed or their 1st anniversary it makes me say, WHY? What aren’t we doing to get to these people. HIV isn’t anything new, There is no cure.
I have found the internet to be a place where I can share everything they need to know, the stuff they probably won’t hear any other way.
Anyway, I hope that people genuinely aren’t ashamed of me or that I have HIV. I won’t hide it any longer. If I’m in your company with your friends and/or extended family and they ask me, “so, what do you do?” I won’t be silent, I am going to talk about it all.
It’s too quiet, too many people are silent. I feel they are trying to drown me in stigma. I’m still able to swim, I can keep my head above the stigma, I will keep going. I have to because I’m going to live with HIV, and live well.
Do I see us “Getting to Zero” the “AIDS Free Generation”? No I don’t, not at the pace we are going. I use to say that one day, everyone will know a gay person and it will change the way they feel about homosexuality. Now I say, one day everyone will know someone who is HIV+ and that will hopefully change the way they feel about the disease and most of all, about the person. I’d love to see that in my lifetime, but I am not that optimistic right now. I have hope though, I will always have that.