I’ll never forget the day she told me she had AIDS. We’d only just met, and were still in that butterflies-in-the-tummy phase, the one where every possible moment is spent clinging desperately to one another as twin tsunamis of passion and obsession tear through your entire world.
Then she said she had something to tell me. Something serious. Something important.
The way she prepared me for this big announcement, I was expecting to hear that she once massacred a preschool or got her kicks slaughtering little old ladies or, you know, something equally as terrible.
Instead, she told me she was HIV Positive and had AIDS (only later did I learn the two were not the same thing). I don’t remember exactly what I said in response, but I believe it went something like ‘Oh, right.’
Truth be told, I was so smitten at the time that even if she had told me she was a toddler-killing, granny-bashing physcobitch, I would’ve still done little more than shrugged my shoulders, taken her by the hand and skipped merrily onwards. Just me, her, and my rose-tinted bifocals.
Yet there was another reason for rather apathetic response to her big news: I didn’t actually know anything about AIDS.
Sure, I knew it was an incurable illness, and I had this vague idea that it had something to do with gay men, but that was about it, and since she was neither gay nor a man, I didn’t really know how to process this information.
AIDS and HIV were not subjects we were ever thought at school. Or, if they were, they were taught so fleetingly as to seem like no big deal, and certainly not in any way that made any kind of lasting impression on your ignorant, young writer.
I don’t mind saying I was ignorant either, because when it came to this, I was very much so, and to a large respect still am.
I’ve known her for over three years now. In that time I’ve done my best to educate myself as best I can using helpful websites like HIV Aware, National AIDS Trust and the World AIDS Day website, and though I can now tell you a little bit about things like CD4 counts, there’s still an awful lot I couldn’t tell you.
For one, I couldn’t tell you, not honestly and truthfully, what it’s really like to be HIV Positive. I could give you a pretty decent second-hand account based on both the things she’s told me over the years and the things I’ve observed myself, but that would come nowhere near close to really explaining it.
Myths, mockery and misconceptions
I can no more claim to understand what it’s like living with AIDS than I can say that I understand what it’s like to have Cancer or to have a limb missing. What I can say, is that there’s an awful lot of work that needs to be done to help people like me become a little less ignorant, not to mention squashing the myths, misconceptions and stigma that surround this disease.
HIV Aware already did a much better job at debunking the myths of HIV than I ever could, so I’ll leave that to them, but the biggest one for me is that HIV is this dirty thing and that those who live with it are somehow filthy, even wicked. What grates me even more is when HIV is treated, at best, as something we’re supposed to sweep under the carpet because it doesn’t affect us, and at worst, it’s something we use as the subject of cruel jokes or insults.
I’ll be honest, I get pretty offended, if not a little hurt, when I hear people using AIDS as a topic of ridicule, mockery, even outright scorn. That’s just me, I can only imagine what it must be like for somebody who lives with this to live in a society that so vulgarly stigmatizes HIV.
No decent human being would make a joke about cancer, nor use it as some kind of crass insult, and yet it happens with HIV all the time.
Truth is, HIV is no different than any other disease, and in my not-so-informed opinion, it deserves to be treated the same.
Which brings me to another point…
We need more than a day
Don’t get me wrong, World AIDS Day is something I strongly support and believe in, but why does a disease which effects over 35 million people worldwide only 24 hours in the global spotlight when other -equally as important- causes, have whole weeks and even months dedicated to them?
HIV affects so many and yet is understood by so few that it needs more time at the forefront of our collective attention?
I don’t mean to discredit the awesome work done on a daily basis by charities like the Terrence Higgins Trust. I have no doubt that they do absolutely the best they can with what they have, but shouldn’t we be giving them more so they can do even better?
Shouldn’t we be investing more time, more energy, more resources and -yes- more money, into AIDS and HIV, not only into treatment and prevention, but into education and changing perceptions.
Again, I’m aware that a lot of great work is going on all across the world, but the fact remains that there’s still a lot of ignorance about HIV. Hell, I’ll be honest, I still wouldn’t have the first clue about it, and would have probably never thought to have looked if I hadn’t met her.
I’m glad I did though, not only because I’m a little more aware, but because I’m inspired daily by this woman, what she’s been through, and continues to go through as a person living with HIV for 14 years and counting. Don’t just take my word for it though, go read her story.