Does anyone else get the feeling that they’re always second string, the other option, the one someone calls when the actual person/plans that they had have fallen through? I’ve been feeling this lately.
I think that my sudden bouts of insecurity have been fulled by a few different things going on in my life but the main reason is because I’ve getting into arguments about HIV online and facing the overwhelming and massive stigma that still surrounds it.
I’m aware that I live in a bubble full of positive people who own their status and who are up to date with the latest HIV science. However I didn’t realise just how ignorant and unwilling the rest of the world is to change. Over the past few weeks, taking about HIV with people who are only there the demonise those living with it has opened my eyes. It has made me angry and has made me seek out more stories and discussions to find the discussions to hopefully interject some knowledge into peoples lives. Its been like slamming my head against a brick wall.
The discussions usually follow the same pattern, I start fairly open and basic, usually explaining U=U, can’t pass it on, regular testing, treatment, very few and minor side effects bla bla bla. These are always argued and disputed, very negatively asking me what do I know and how do I prove that. I follow up with a few links to websites, I say I’m living with HIV and work in the sector. At best the responses I get are “well that may be true, but you never know, so I wouldn’t trust anyone who’s got HIV” to being called a slut, that I should “stop taking loads in my ass” (redundant advice at this stage!) and finally by someone who claimed to be a doctor said to me “I can’t believe they let you see HIV patients to spread these lies”. The first time the negative comments came I responded……..boy did I learn my lesson…….I had to stop checking my notifications and actively delete any comments/messages before reading. For every positive comment from someone there were 20 negative ones.
This is damaging. These opinions are harmful. I sought the discussion out but these ignorant people managed to turn someone who was living confidently into someone who was ashamed again, into someone who felt cheated by life and dirty. People say to me, you shouldn’t let it get to you, they’re ignorant, more fool them. I have great support from my friends and family and from the people I’ve met through my mentoring work, I have that system in place. So when I have been turned from someone who was happy to speak out to someone who feels like shes not worthy enough to bring herself into the discussion anymore I have them to help bring me back. To help life me up again.
But what about the people who don’t have that? The people who are alone, the people who get lost in the online world of hate and stigma because there own experiences have taught them to hate themselves for whats happened? Where do they go? Many people living with HIV live below the poverty line. I generally only ever hear “positive” positive voices from people who don’t live around here and from people who work in the sector.
I attend a local support group. When I’m there I just want to smile and cheer the room up. I tell funny and sassy stories and about me I tell them about the interviews I do. I think I’m the loud one that always tries to question everything and put a positive spin on things. I do this because out of the attenders I am one of a number I can count on one hand that is open about their status. Most live in shame, isolation and fear. Their families don’t know they’re attending a HIV group, most make up other excuses as to where they are. Some of these have been living with HIV for decades and only told partners or one or two close friends. The stigma and negativity they have received over the years is massive, they feel it can’t be undone. I’m doing everything I possibly can to help, even if its just for an hour, once a week.
Its not enough though. Empowerment through peer support is vital. Public education about HIV needs to happen. Millions of peoples lives could be vastly improved the world over if it was done right.
I have nothing but admiration, great respect and awe for the long term diagnosed who have lived through times when the stigma was far worse, who are still fighting for change, fighting for improvements and for better lives for those living with HIV. I don’t know how you do it, I hope that I find a similar strength to keep going on with it all.