COLUMN: The HIV Community
‘Community’ is a broad word that can be used in various ways in our society; it carries different definitions depending on the situation.
The main meaning we can all take away from this word is that it’s generally a large group of people that all share common values. Without realising, we must all fit into different communities – as a population, as a society, as a sub-culture, as a gender, race, sexuality…the list goes on. One question I wanted to ask before writing this, was, ‘Is there a HIV community in the UK?’ Having had a Google, I haven’t found a great deal so I thought I would explore the potential reasons why it appears to be lacking.
I was diagnosed back in October 2012 as having HIV and since then, it’s felt like a pretty solitary journey. I’ve felt that I’ve had to make a concerted effort to reach out to others that have this somewhat lonely and yet widespread virus, seeing as there are roughly 100,000 people living with HIV in the UK (to put into a visual context, that’s enough to fill the O2 Arena to full capacity 5 times over). I’ve mentioned in a previous article that stigma is a major issue that needs tackling, and here I find myself thinking that it’s stigma that’s probably the reason why we don’t have that community ‘feel’ when it comes to HIV. People are too scared to disclose their status and so any attempt of an open HIV community is diminished from the outset. I don’t feel part of anything larger, but then I wonder at the same time, do I actually want to be?
I think about the gay community, and to me, it’s something that is quite close knit. It tends to be in concentrated pockets in the UK, in areas that thrive such as popular cities, and everyone tends to be linked to someone through one way or another. Up until a few years ago, you’d find me every weekend out on my local scene, on a stage or podium dancing this derriere of mine off non-stop; shaking loose the stresses of life with friends and loosing calories in the process and maintaining a nice athletic physique with hardly any effort – sounds great right? The scene was my release, where I could fully be ‘me’. In time though, I got really bored. It’s a story we must all be able to relate to, the same places and same faces just weren’t enough for me anymore and so I withdrew myself. Being part of the gay community is something that fortunately we can choose, similarly I guess with any community. It’s a choice in our lives that we are very lucky to have as it has the power to alter us as people so dramatically. Who I am today, is not who I was those years back, when I was out every weekend.
So to choose to become part of a community and go looking for it if it does exist, where does someone with HIV go? Well, the main prevalent community that HIV people have is actually found online. I wonder how people reached out to each other before this though? I can only hazard a guess at support groups perhaps arranged by HIV drop-in centres or local hospitals. The internet is a HIV person’s saviour. We can hide behind anonymous identities if we wish to and say how we feel, reach out and get the support needed and make friends. My saving grace has remarkably been, Twitter. I have two accounts on Twitter, a personal one and my @HIVPozGuy one. I use the latter much more as I’ve developed a network of friends with HIV on there, and we all help each other out and provide a much needed resource of fun and laughter. It’s astounding that groups can be created from nothing, from simple connections made over wireless air-waves and wires, that can then become first-class compadres. My twitter friends live all over the place, but having them in my pocket on hand, makes them feel like they’re with me every day. We’re now in talks of arranging a meet up!
Twitter isn’t the only resource I found in terms of community. Other websites offer great forums, I think the first whistle-stop that every HIV person should stop at post-diagnosis before doing anything else, is to get themselves registered with The Terrence Higgin’s Trust website – ww.tht.org.uk. This is the main HIV charity in the UK with a growing number of members each day with brilliant resources and help. You can delve into the forums and get pretty lost and carried away with other peoples’ stories, and find common ground to rid those feelings of shame, anger, guilt, sadness and so on that many experience from their initial diagnosis. You can even call their helpline and speak with people that have HIV. My Step-Dad did this on the day I revealed my HIV status so he could gather an understanding of it, this he relayed to my mum and it put their anxieties at great ease (if you work/volunteer for THT reading this, massive thank you from me!). So THT isn’t just there for HIV people, it’s there to help out family and friends that have a close one with HIV.
So, to answer my question from the start – Yes, there is a community, and it’s mainly online. It’s not huge but it’s what people choose and make of it, that will allow them to construct their own idea of how to achieve that community ‘feel’, should they need it. I’m extremely content with the people I’ve got to know along the way so far and look forward to someday meeting them too.
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